Mary-Anne’s Chronicle – Journey Through Disability from Victim to Victor

Welcome!

Welcome back to me and to those of you who were following along with me on my journey. I also want to welcome all new seekers who I hope to attract on my journey and my new cause.

First, let me catch everyone up on where I am now on my journey and about my new cause that I am adding to this Blog.

Then I will write separate entries about what I have learned and share all my experiences and knowledge with you, hopefully to help you on your quest for hope, knowledge and empowerment over your health care and lives. I have so much to tell you about and share with you from all that I went through and experienced while I was gone, plus where I am in the present and what I “see” for my future.

Here we go, get comfy as always. Please read with your mind, heart and spirit open, because I am writing from mine in hopes to reach yours. I hope to touch each and every one I can with my on going journey towards reclaiming my identity, creating my new life within my limitations and re-creating my new self.

I must stop here and share something with you. It is true friends, when things seem their darkest and most hopeless if you give in to trusting in that life works just as it should you will find your greatness within.
Though I have much to do still, I would not have traded what has happened to me for anything. I love who I am now. I see nothing but opportunity, empowerment, enlightenment, knowledge and a wonderful life opening up for me now.
I have no idea what I would have turned out like if I had never gotten ill, lost everything and gone deaf. I doubt I would have been anything close to who I have evolved into as I accepted my fate and decided to turn it around and make it into a victory. I have found an enlightenment that is irreplaceable no matter how much someone reads about all of this unless they share similar experiences. A wealth of insight and knowledge only known to those who have experienced many trials and tribulations that take you so far from your present sense of reality into an abyss where you come face to face with your own mortality like being in the Twilight Zone. Having the person you use to be gone and this stranger taking over your body and mind. Basically having your whole life wiped out as if the you that you knew had never existed, just gone. I have experienced more than one can imagine much less comprehend just like millions of others who are on a similar journey as I am. Here is where the big BUT comes in friends my journey has truly turned into the greatest blessing and opened up the greatest opportunity of a new and greater life purpose than I could have ever imagined. It truly shows me without a doubt that anything truly is possible if you want it bad enough and can be patient without giving up.
I look in the mirror and see the scars, the wear and tear on my body. I know I will always have them to remind me of what I lost, all the trauma I allowed to be done to me. The years I lost to what I use to curse but now thank because until I show on the outside what was created on the inside of my being from all of this, no one will know what a gift this nightmare has become for me. I hope through my experiences and enlightenment you too can find your blessings and turn your life challenges into opportunities of becoming the best self you could ever imagine and actually building a new life that is more fulfilling than anything you could imagine. I believe together we can do this. So please follow along with me as I now take on a new course in my quest for wholeness and now a new cause that I believe all this was leading up to for my life’s purpose.

Next I will make my first journal entry telling you what I have been through that took me away from my journal for so long and what I discovered. Then I will make an entry sharing with you my new life’s calling I believe. I will hope and pray that you will join me with my new cause because as you will read it is your cause also no matter how ill or disabled you are, you can do something to make a difference in this life. I hope I am giving all of us an opportunity to make a real difference in this world by joining together and letting our lives speak for themselves. What could be more natural than to just let your life speak for yourself and to have that make a difference not only in your life but in the lives of everyone who are disabled and/or in pain and/or deaf.

Thank you for coming to my site and reading about my journey. I hope what I have written and will be writing will be an inspiration to you in some small way, give you hope if you have lost yours and maybe give you some answers where there were none before. If nothing else at least I hope I am giving you comfort just knowing you are not alone and that someone does understand just how much you have lost and how much you are enduring whatever your challenges may be.

I have much to catch up on so time for bed. It sure is great to be back I am so glad you are with me on my journey. I never feel alone. I can’t wait to write my next entry but then I get major serious as I told you I have found a new calling that has now changed my course and my journey actually, until tomorrow my friends may,

God Bless us all Goodnight.
Mary-Anne

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I am back on my journey

Good Evening Friends :

Did you think I quit or died? Well I thought both were options. I went down and took a real nose dive. I have been too sick to even care if there was a tomorrow. Have you ever had one of those kind of episodes? Well mine turned into weeks and months there for a while. The brilliant doctors I have seen just give me the doe in the headlight look and said “I don’t know.” Or I get this look like well what did you do to cause this? I get sermons. I get ignored. I get everything but help. All are doom and gloom about my life and my future, saying my life however long is going to be difficult and not turn out the way I wanted. Daaah? I already live that one. I truly dislike being treated stupid and talked down too. I can correlate it with the deafness friends without a doubt. I was ill before I went deaf. I am treated differently now and it is very much in a negative light. Deafness truly is profiled and so far I don’t like any of the ways I am profiled especially by the very people who are the very ones who are supposed to be helping me.

I believe there is a purpose for all of this and live totally by faith. I know now that faith is the foundation for all of us and without it you are vulnerable to being a victim and to losing hope. So please keep the faith and share it with others.

OK, let me move on and get this out to you and out of my system so I can move on also. Let me start by saying that I have always believed we are all one and that within all of us we hold the same light that connects us together. Someday I will write about that but for now just humor me. I need to share with you where I am now on my journey with the hope that you will be enlightened and with the hope that you do care as I care about correcting what is hurting all of us who are or will become medically or mentally disabled and/or deaf. I am hoping there are people who will read this entry as one who is also challenged physically and/or mentally giving you some encouragement, some enlightenment. Most of all to encourage you to keep the faith and to get in the fight for change in your own circumstances but also through me sharing my story you will see the many wrongs that we need to become active in changing about our broken medical system. Those of you who are fortunate to be healthy that are following along out of human interest I hope you put the emphasis on keeping yourself as healthy as you can. I also hope that through my sharing my journey you will become enlightened and reach out to learn more and become active in changing our broken medical system that Hilary Clinton, Kennedy and so many others are fighting for in Congress. Don’t wait until you or a family member becomes a victim to what I had to find out the hard way and still go through fighting for the right to good health care so I can live, have quality of life and have the opportunity to make my dreams come true without discrimination. I just want the opportunity to show what I can do without being profiled.

I am hoping that as we travel down this road that challenges us that through my writings you will be able to avoid being a victim of ignorance like I was and end up paying a lifetime price for your ignorance.
My writings will stay honest and true to my experiences. They will cover everything that you could encounter so you should be able to protect yourself by learning from my 20 years of experience, research, development, losses but most of all enlightenment.

Finally, through my writings I hope to inspire everyone to wake up to the fact that we have a nation wide problem that will eventually affect all of us some of us sooner than later and some of us for a lifetime. We all need to get in the fight to change our medical system, our government, insurances, the drug companies and take back our medical system making it work for “ALL” people. Not just those who feel they are privileged and protected. The bottom line is if we don’t get passionate and motivated by the time the 78 million baby boomers hit their Geriatric years it will be too late and we will all suffer the consequences. We must get our legislators to pass “laws” that cover the medical system and all those who have a hand in it. Just like all other businesses, the medical system is too big too out of control for the good ol boys of the AMA to oversee with rules and regulations. We need to “laws” that take the power and control away from the business of medicine and put it in the hands of the law just like all other big businesses. In fact more so with the medical system as it is one of if not the largest income producer in this country and no one is at the helm. All aspects of our medical system are now “big business” and everyone should be held accountable to a part of the government that is supervised by a group that’s only interest is to make sure laws are passed and then to oversee that these laws are enforced. When the laws are broken we the people should have the right and the ability through the courts for recourse. Those who oversee all aspects of the medical system should take complaints and if there is credence an investigation should be implemented making those responsible accountable.

OK as usual that is my soap box for tonight. Let’s move on to where I am and what I want to share with you as we get back on our journey.
So sit back, get a drink, get comfortable and let’s start back on my path to victory. I am behind and need to recover from my major set backs. But there is a lot happening daily so I hope to be able to keep up and write as much as possible.

WHERE I AM NOW ON MY JOURNEY:
Now my road to recovery is two fold. I obviously want to get well so that I can feel good and be Joe Citizen again and just maybe more. Plus I can not endure the pain, all the complications, losses and what will happen to me as I age and have no resources or anyone to take care of me. What a nightmare that is to imagine. So my fight is for my life my friends and I have to win. Second fold is my work. I am a functional intelligent woman who has something special like all of us have, to give. I believe I have the right to have the opportunity that I would have had if I never had gotten ill or went deaf. I am denied this and profiled without even been given an opportunity to plead my case. According to society, I am not perfect anymore so I am a “throw away” I call it but being in Behavioral Health I can tell you no one is perfect be it physical and/or psychological despite what Tom Cruise and John Travolta say ignorance and fame what a formula.

Sorry I digress.
I can only speak for me but I am being denied my rights to get the basic help I need so that I can be given the chance to show what I know and what I have to offer.

I truly believe it would be a sin if my Life-Rules Technique, my talents and expertise that I developed are not given a chance based on profiling because I am deaf and disabled. Why does that knock me out of the opportunity to compete? Let my work speak for itself just like when I could hear.
This is my life and being disabled and deaf has nothing to do with what my capabilities are. All the laws in the world can not be enforced. They just use another excuse. So I am on my own and trying to start my own business but you need backing. I have gotten so far as to be incorporated but I need help with my web sites and a webmaster as that is not my specialty. I am up and running. I have everything in place and am ready to launch my business except it needs technical fixing to make all the changes so I can run my sites as a business. I am stopped, since Vocational Rehab in the state of Arizona has denied me any assistance based on one young lady who is trained in blindness not deafness just blind people’s needs. I was never seen by a doctor or interviewed by anyone who is trained in deafness. At first she said it was the wise thing to do support me in starting my own business and the VR would help me get started. Then without contacting me or telling me why when I contacted them denied me any assistance. No follow up, no further review just “Silence”. Pardon me but that I already get on my own.

WHAT IS STOPPING ME:

In our Health care System, it is the doctors, who have the power. The patient has little choice except to comply if they want care. That doesn’t even guarantee you good care or care that works for the problem you are having, just an appointment. They also have changed the rules for an appointment. Some doctors request that you send your records to them and they assess them and then decide if they want to see you or not. Then you will be notified by the receptionist whether you are accepted or not for a consultation. By then you could be dead. They cover emergencies by dumping them on the ER’s which are over loaded as it is and should not be seeing people who are not true emergencies. Our ER’s treat patients that should be seen by Urgent Care Clinics or doctors. ER’s should be for true emergencies. This is another problem that needs to be addressed and soon. Phoenix has the longest wait for ER’s than any other big city 4 hours and that is because of the dumping syndrome, I call it by doctors offices. Medicine is truly a “business” now at least in Phoenix Arizona. It is flourishing here because Phoenix is one of the fastest growing city in the country. This is not just my opinion as a nurse and a patient. Techs and Nurses talk to me because I am one of them all have validated what I am writing here. This is without me saying a word about how I have seen doctors collaborating with profit making corporations turning the medical system into what is now coined “5 minute medicine” and charge amounts that most of us cannot afford. No money, no help. The caring has gone out of the practice of medicine here. They keep the ratio of doctors to patients disproportionate so these doctors have 3 and 4 offices plus investments in clinics, scanning machines, scanning clinics, outpatient clinics, day surgery centers, labs, you name it the hand of doctors is in there somewhere and it is big business my friends. Many doctors will not take Medicare, some will not take insurance at all, cash up front and many will not take Medicare assignment, which means they accept what Medicare pays and that is all. You can’t get rich off Medicare assignment you see. Most are open only 3 to 4 days a week and the rules you must follow are lengthy. Like 72 hours for refills on medication. I would say doctor overload and nurse usage under load if it takes 72 hours just to ok a refill. Many of these corporate owned offices do not even have RN’s. They use techs dressed like nurses or they use their receptionist. It really blows my mind and everyone takes it without question because many are from a generation where you could trust your doctor and the medical system. Many people like I was, are just ignorant and “assume” they are talking to a nurse and that the doctor cares and will do only what is best for them at a reasonable cost. The business of medicine is the only service oriented business that makes you pay up front or at least pay for services whether you get any care or not. Medical Care is not held accountable to anyone except the AMA and Joint Commission. Doctors “choose” whether to see you or not based on unknown criteria and if they do “choose” to see you that is all they have to do is see you. Sometimes I am refused care.
You have to pay charges on top of insurance or Medicare whether you receive any care for your time and money or not. What is that all about people?? Our cars get better care and guarantees than our lives do. We would not stand for this in any other business why do we stand for it with the most precious part of life our health. It is true without your health nothing else matters.

This was a Two Pointer, one you just read and now the second, which is on the personal side since I am having real problems dealing with this kind of medical mentality and the take over of corporations.

I am writing about this because for me, I am stopped friends, because my resources have been depleted trying to get the medical care I need, medications, equipment and what is left if anything I try to put into getting my business going. I live on Medicare disability. I am looked upon as indigent. I am unable to get the medical care I need, the equipment I need so that I can try to get my business going and become a functional part of society again and self fulfilled because I live for my work and want to finish it. I want to be functional and contribute to helping make this world a better place to live. I have the degrees, the experience and the skills but I am stopped cold even with my own business sitting here waiting just waiting to get started.
For my disabilities, I need medical care that supports my symptoms so that I can work. What is called palliative care. For my deafness, I need two basic things that I should have the right to so I can become a part of society, the work world and be able to make a living and support myself. I need hearing aids that help my level of deafness and the FM system so I can hear enough to work just like someone who can hear.
It is out there I just can’t get it. Why? Well that is what I want to find out.
I have everything done except for what disability promises for the deaf so they can work and not be discriminated against. Here they are discriminating against me. I thought disability wanted to help you get off it and back into the work force not keep you on it
Here I am investing my life and doing all the work to get back on my feet. I did all the work to set up a way to work taking into account and working within my limitations. Yet creating a place for my years of experience, degrees and skills that is very necessary and would allow me to be self sufficient so that I could be a useful, productive person again giving back to society instead of rotting away at home trying to find a way out of this nightmare. I am capable. I don’t want to be indigent getting my small check from the government. Yet I can not get the two basic things I need hearing aids for someone who is as deaf as I am and the FM system so that I can hear enough to be able to work. Or the medical care I need and the help from Vocational Rehab and the Government so I can get my business going and be self sufficient.
To top it off I live in the state that needs my services the most because Arizona has the worst rated school system in the country according to the government statistics. Hey Senator McCain I got something that could change those stats!
John McCain needs to focus on his own state before thinking of running this country. He needs to straighten out the medical laws and medical treatment. He needs to back the Governor who is fighting hard to change the school system in this state. It is her first priority and she works hard at fighting for all the kids in this state to get the kind of education they need to make it in the world plus raise our status in the country as far as having the poorest ratings on testing. I just may have what could help her. I hope I get that chance some how some way.
My resume is on all the on line sites for jobs and I get many offers until they hear I am deaf, then they don’t call back.
Yet if I have state of the art hearing aids to give me some ability to hear and read lips. Then if I put the FM system on them I would be able to hear enough to run my business. There are doctors who went deaf like me out of nowhere when they were in medical school who I have read about that are teaching medical school and practicing medicine using the FM system. That is how I found out about it. There is one at Harvard that I read about and one at the University of Michigan. I am sure there are more but these two I read about and they gave me hope that I too could make my goals a reality.
I am deaf not stupid all of a sudden. I can make my business a reality with these basic hearing equipment so Vocational Rehab should be required to help me. How they concluded that I am unable to work for life I don’t know and can not seem to find out. I am going to write my Congressman and see if I can find out. But Vocational Rehab won’t even return my calls. I even had the University here that works with deaf people like me write requesting aid for me to get the hearing aids I need and the FM system so I could do the basic living skills, be able to care for myself and WORK.
I have to have my 82 year old mother go with me everywhere to interpret for me as I get confused and scared when I am out. I lost so much more than my hearing and people get real impatient with me to where I get real beat down and don’t want to go out. I am working on this problem but it did take the wind out of my sails. This is not healthy people and I should have the right and basic help so that I can go out. My mother should not have to be my caregiver at 82. The University also said that with the right equipment I could work from home running my own business and asked Vocational Rehab for help financing the hearing aids I would need with my kind of deafness and the FM system VR turned them down.
So that is where I am on my journey today.

Who knows what I could do if I were given a chance.

Most of all I want to hear the rain again, talk to people, not to be a shut in 24/7 unless my mother can go with me.

Talk to you tomorrow tune in. I am hoping I am back and that my health is going to hold so that I can continue my journey with you.

Thank you for coming to my Blog on being disabled and deaf.
Good night,
Mary-Anne

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Hi All:

I have put up a new page for you. I hope you will use it and write questions, comments, experiences, complaints, anything that sharing would help you feel better, maybe help someone else, get feedback if you want it or just support while you are going through something.
We are all in this together.
I am going to be commenting on it too about my experiences because I need to get some things out. I just get so frustrated with the lack of caring and the so called “rules” that are cold, indifferent and just keep wondering what happened. What happened to caring about people? Why are we who are in the medical profession in it if it was not to help people. I have not found that anymore. If you have hey write me because I need to hear some positive experiences too.
Anyway that is what the new column is for at the top next to FYI for YOU to write. Keep it short and to a point, any point but have a point and share it with all of us or just me either way.
The email address is MaryAnne@findingourway.org.
Night,
Mary-Anne

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March 24^th, 2007

I first want to say it is good to be back. I have been gone for a long time. I have missed my daily or almost daily talks with you all. I am back now and will be writing daily as journaling in and of itself is very therapeutic for everyone. I encourage all of you who read my journaling to try it yourself. It takes a while to get into the habit of journaling but if you do it right before bed it is good timing. Everything is quieted down and we all should take a few minutes to reflect on our day to see if we have learned anything new, maybe while you go through your day you will find something you would have missed if you didn’t have a reflection time. You might pick up on something your child said that needs further investigation, something your mate said, something you did or didn’t do that could have made a positive difference in your day and someone else’s day. I have been doing journaling since I was about 10 years old. I started it because I had no one to talk to so I made up this guardian Angel named her Angie (how original) and I wrote to her every night right before bed. It became a part of my life and helped me grow, find insight, learn sooo much about myself and why things happened the way they did throughout the day. It was like stepping outside myself and doing a self evaluation. I saw things and learned things I would maybe have gotten in time but got so much faster and to me much more meaningful to help put the pieces of the puzzle called my life together.

I can not encourage you enough to try journaling. It has been proven by the APA to be very therapeutic in helping people work through their emotions, issues and find solutions to their problems. I try to get all my kids that I counsel to journal. The one’s who stick with it really do grow into more enlightened young adults and are able to process through their issues with more ability to see the big picture and not just come from their ego’s. OK that is my little sermon for tonight. On to the next step of my journey I hope you are all warmed up and ready to start again. We have a long way to go. I have discovered much while I was away. I have had some major revelations and have some new challenges that have made my journey much harder.

I want to focus on being deaf as that seems to be in the for front right now as far as wiping out my life, a lot of my self confidence and taking me down to where I am back into being a victim.

I have used my therapy and am working my way out of it but out of all the challenges with my health deafness seems to be the worst and hardest to come to terms with and find a new life around. Going deaf later in life is very different from being born deaf. It is a whole different loss and should be in a category of its own because the differences are so great.

I went deaf 2 years ago. After two years I have gotten no where. One the state I live in Arizona is way behind in providing anything for the deaf or disabled. I take the deaf newsletter from About.com which has helped me learn more than anything else. I have been to the State Department for the deaf and compared to other states it is not up to standards or information. I have been through Vocational Rehab here and just found out from About.com that there is much from the federal government to offer me that they did not tell me about. In fact they did nothing to help me. I am not making it financially which is a very scary position to be in under any circumstances much less ill and deaf. I have tried to find help every where and get very little response mostly “we just don’t have that.” I am also at fault because I gave in to my deafness and lost so much of my self confidence because of how much going deaf later in life takes from you. No one seems to know how to help prepare me for being deaf. I have been to counselors and they know nothing as far as how to handle helping someone like me. For a long time I thought it was just me and after reading an article by someone who writes about deafness especially those of us who go deaf later in life. I find I have so much research to do, so much to learn and that there is help out there for me and other deaf people lots of Federal help. I am going to go to work on it tomorrow as I am going down financially so fast. I have thousands of dollars in medial bills. I want to work. I have the degrees, the experience but I can only work from home with my disabilities. I have everything set up for my business but no money to get it going. I mean it is a joke to me that when you are in the worst position you can imagine you are expected to do all this work to find help just to keep from being on the streets. If I was well enough to do all the work expected of me to find the help I need I could work full time outside my home. It is a catch 22. But it comes down to either I save myself or I don’t get saved. I have never felt so alone, so helpless and so lost in all my life. My assets are that I have my knowledge and the therapy I developed to hold on to and help bring me up to where I can at least keep my mental stable. I know more than most people around here on how to help me find myself again and how to find peace and new coping skills for my new life. I refuse to go down with this. I deserve the same opportunities and treatment as someone with money or who is well. I am not getting either.

It will be slow as I can only do so much a day with my physical illnesses. I have no help and am in an area I know very little about and can not find anyone who knows how to help me. I find it to be a much colder and less caring world than I want to believe. Here I teach kids to believe and that people do care that is what I represent to them. They feel it from me and from my websites. I have been planting seeds of hope and dreams come true with teens world wide. Now I am not so sure. I must prove myself right. I can’t be the only one who cares and goes way out of their way to find the answers when I don’t know them. I teach the kids how to find their answers. So now I must teach me how to find my answers.

I start my quest now with this first writing.

I will take you with me step by step as I pursue knowledge, teach myself how to learn how to be a later in life deaf person. I will share how I teach myself new coping and life skills so that I can make a new life for myself.

I will fight for my rights and get the help I need until I can make it on my own. I will share the work I do daily to try and regain some of my health back since the doctors here say there is nothing that can be done for me except to keep me comfortable. I can not buy into that kind of thinking.

I will do what I can each day making priorities, seeking information, writing people to find out what is available for me. I am going to try and learn how to do close captioning as a way to support myself until I get my business running and my book finished. The stress I am under with having to do everything myself and unable to find any support or guidance in and of itself is too much and is taking a major toll on keeping me from getting better physically. I mean there is a Mayo clinic here, the big Mayo and I couldn’t get any help there but they sure are coming after me for their money. They actually think I am just holding out on them. For what I have no idea but their treatment to me has been terrible, so heartless. The medical profession is the only profession I know that you pay whether you get help or not. I think that needs to be changed. There needs to be some accountability because it leaves the patients with no recourse. Then you owe them and still have to seek more medical care because they didn’t help you so you keep owing and paying owing and paying but no results. Where do they need to even care since they know they are going to get paid either way. What is their incentive to help you and follow up to see if they did help you. I don’t know how they pulled that one past us but we better wake up with 78 million baby boomers coming along. There are going to be more sick and deaf people than ever before. The medical system is already broken and we have no rights. Yes you get a sheet that says you have the right to ask for but read it carefully as it does not promise you any of those rights and they don’t have to deliver them either. There is no watch dogs over the medical system on how much they can charge, again they don’t have to deliver anything and they still have to be paid in full no matter what happens to you the consumer. Something real wrong here friends.

This I will get into more as I have been on both sides of this one and all over this country at the so called “best” hospitals. I have a few wake up calls for you.

Well, I must try to sleep through my pain and stress. Tomorrow I start my new program because I have had my wake up call after reading just what little I have on what I have to fight to get my rights that we pay for in taxes. I wonder where that money is going in Arizona? It sure isn’t helping me Senator John McCain??

It won’t be a boring journey from here on out. I don’t know the outcome. I don’t even know if I will live through it but we will find out what is out there and how to get the information. Then we will see just what the government does with those tax dollars for the disabled.

Glad to be back even though I don’t envy myself and all that I have to do and a body that isn’t up to being able to do much each day. BUT I will do all I can each day, make priorities and most of all use my therapy and develop a new health plan to find my way out of this nightmare.

Again I refuse to give in and just lay down and die. I got work to do, seeds to plant in the next generation, a book to get out and a therapy to share with everyone that works for the issues of the 21^st century. I guarantee it. I would love to find someone famous with money to teach it to so I could prove that this therapy is the best there is today for today’s issues. I would not charge a penny and I would guarantee it. That is a lot from someone who needs the financial income terribly, but I am so sure of this therapy and so are the kids that I have helped over the past 7 years it is not a risk. I just need a chance to prove it and get it out there to all of you who want to have a life that you can solve all of your own problems and make your life work your way. We will see how it works with me though doing self therapy isn’t acceptable proof. There will still be no denying it if I make it right? But if there is anyone out there who wants to take me up on my challenge that in 6 weeks I can teach them how to solve all their own problems and make life work their way I think that would be the best way to get my book published and that is all I want to do. I want to leave it behind to help those who want help and to change their lives so they find all that they want in this life and within themselves. But I doubt anyone much reads this Blog so I doubt I get many rich or famous people. I hope I get better and do get my book published so you can try it if you want to. It is self taught and works for life. At least you will see it in action with my journey as it is what I am putting all my faith in to overcome my challenges, re-invent myself and make a new life within my limitations.

We shall see.

Night All and It is good to be back,

Talk to you tomorrow, have a great day and count your blessings,

Mary-Anne

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Good Evening Fellow Travelers:

What it takes to live in a world where you are in constant pain, disabled and/or are chronically ill or deaf is what I am starting off with tonight what and where I will end up is another story so please read on .

It never occurred to me as a nurse or as a patient for years that becoming disabled, living with chronic illnesses, unrelenting pain or even deafness would impact every minuet detail of your whole world. I don’t think any of us even think about any of this in the medical profession or as well people until it touches us personally. Even as a medical person you don’t stop and really feel or become a part of the illness process. You are just what you are a “caregiver.” I consider myself a very sensitive person and even sat up all night long with patients who were in pain or mentally trying to deal with dying. I would cry with them, hold them and yet now that I am in the condition I am in, I look back, I think I was feeling all of those feelings more for me and the pain I was experiencing for the person. I really didn’t even know that I didn’t know that I was incapable of being a real part of what that person was experiencing on a life changing level. It amazes me now being chronically ill how not one part of my being, my body, my life, my routines, how I think, feel and act have all been affected by my illness/pain and now deafness. As I said on my front page I am no where close to the person I was before I became ill. I was taken from the only life that I knew, was trained for, could identify with into another world and it truly is another world that I live in.
I studied about the process of being ill, being disabled, experienced it as I trained to what I considered to be an expert. I don’t care how much I thought I knew, experienced and even felt as I went through life changing processes with those who were my patients, I now know even the greatest minds have no clue what living inside of my body is like in any sense of the word unless they live there too. That is just the nature of life and makes sense. I sometimes wonder if that is why suffering sometimes is assigned to those who would fight the most and speak out the loudest so that even those who are not imprisoned in a mind or body that is suffering chronically will at least take an interest and help. Even if it is just out to give back for their thankfulness that they are not in such a position and want to help those who have a challenged life find a way to meet that challenge with quality of life.

Before I became ill and deaf I was thankful and gave back to organizations that I believed in and that I was sure the money was going for the cause and not into someone’s pocket. I felt it was my tithing instead of putting a new organ in the church. Helping people that affected their afflicted lives directly seemed more important to me than a grander cathedral or new choir robes.

Then I became ill and of course thought it was something that would be diagnosed, treated and I would get well. That is the norm isn’t it? Isn’t that what we count on in our so called advanced society? I found out that we are not so advanced after all. I have heard more “I don’t knows” and “we just don’t have any answers for that” than I ever thought possible in this day and age. But it is true we know less than we think we know. This is also where the “big business” of medicine and politics comes in again. Unless there is big profits in finding out the answers then the time, money and man power is not allocated when congress doles out the yearly funds. In fact according to which party is in office determines the cuts in funding for diseases, research, medications and experimenting for anything that is not big business.

Since I have changed worlds and entered what I consider an invisible world where there are is no real world just parts here and there that you have to figure out and see if the parts can even go together to make a whole. Mostly you have to make up your own world even to find out if there is anything out there for you to build a new world with. It is really strange let me tell you. It is like waking up in the dark and trying to walk around finding doors and something behind those doors. Yet you are not sure if what you find will be a way onto a new path or just make you feel more lost. Most of the time I find nothing behind the door just empty space that I have to either make something to go in to that space or move on to finding the next door. I have never felt so lost in all my life. I figure this is how helplessness feels when you are in a situation where there just is no hope, you know it and that really awful feeling comes over you that you just know this is it and you might as well just give in to it because there is absolutely no way out.

But, we are just the most amazing piece of work we human beings. We always find hope somewhere somehow even if it is the thinnest single thread of hope that is glistening out in the distance, we will see it. We will hold on to that single threat off in the distance and fight with all that we have to get to it. Yes, we are survivors and that is why man is still around I guess. I do wish we would spend more of this amazing empowerment and use it in positive, peaceful and loving ways instead of the destruction that over takes us for some reason that I don’t understand myself.

The point here that I want to make so emphatically clear is how amazing our will to survive is because that is what we all have to find within ourselves when anything challenges our survival in any way. We and I say we because I lose it too but we have to keep reminding ourselves of all the great triumphs that single human beings and groups of humans have endured and overcome throughout history. We can find a door even if that door only leads to our mind finding hope within someone else’s story of triumph over defeat. I am constantly reading about people who have overcome some kind of hardship so that I don’t go down with mine. I need these stories to keep me fighting and believing that I too can overcome mine. It is the hardest part of this whole endurance of trials and tribulations that one never expects to touch our lives but does, some times without a moments notice. That is why it is so important to give back to the circle of life because you never know if and when you too may need help. It is proven that the more you give the more you get back.
I sometimes think about all the money wasted on political campaigns that could help so many people like all those “ground zero” workers who have lost their incomes and can not get medical help because they have no insurance and no income. The money that rich people waste just to have their spoiled wants granted, some I hear about that are so outrageous I could just really get all over the person or group. The indulgence in this world of the wealthy is just a shame that I am ashamed of about being a human being. On the one hand, I am amazed at the endurance to survive and help each other in a crisis. Yet on the other I am ashamed of what people and societies steal, black market, lie to cover up, white collar crime, politics, big business and spoiled self indulgence of those who “think” they are entitled when they crap all over themselves when they die just like everyone else does. Why the wealthy think they are entitled I will never understand either. Believe me dying is the great equalizer and we all do die the same way in the end and it isn’t a pretty picture believe me. If those who have would help just one person or one organization in this country or their own country everyone could have a chance in this life.
I know I have been told all my life I am idealistic and that I would grow out of it as the world tainted me. Well my friends I am getting up there in age and I haven’t changed a bit in my idealism and believe me life has given me more than my share of challenges.

If I ever rise above this challenge I have been enduring for 19 years and sell my book and make it big believe me I will be giving back. I also will never believe what I call “my own bull shit” that I am entitled.

What I think we are all entitled to is all the life has to offer as long as it doesn’t take away from someone else or isn’t ill gotten gains. For all the gifts that this life has to offer, it is an honor and our responsibility to give back. We need to sew the seeds of hope, a way up and to give another the same chances that those who are not afflicted with a challenge or great losses has been blessed with.

Is this so much to ask when we are all in this together at the end of the day. How can you just step over a homeless person or look away from a drug addict, a prostitute, children in these gang infested neighborhoods well the list can go on and on. It can go on and on because we are doing nothing as human beings to help one another. If we were things wouldn’t be so bad. Unfortunately I can attest to how bad the world really is for so many, the suffering so great, the cries so loud but are not heard and most of all the comfortably numb of the status quo.

Oh well that is my soap box for this entry.

I will continue with living with chronic illness, pain and deafness next time as I want to get back to the “hope” and all the positive things that can hopefully help others who are lost, looking for answers and something to hold on to.

Funny I always get off on something other than what I started with but I feel that is where God wants me to go so I go. This is not my agenda it is what it is and that is how I want it to stay until the end of my Chronicles, my journey through this total life transition and transformation of Mary-Anne.

I do hope my last entry is a success story though and that I don’t start out with that and end up somewhere else.

Help me make it a success story so others can also find success.

I don’t know when, how or what will conclude my journey. I just know that I haven’t found the answers to everything I am supposed to yet or I would be at the end.

So we shall continue on. I hope this Chronicle is helping others facing challenges, giving hope, inspiration, validation, maybe some answers and some ideas on how to cope, rebuild or just to hold on. This is what it is all about. I was alone now I have all of you and more each day. This gives me the motivation to keep fighting, to find the doors, to still give back though I have nothing really to give other than my professional talents so that is what I do.

This would have helped me years ago when I was so caught up in the negative, the nightmare and powerlessness of my situation. I couldn’t find anyone or anywhere to turn so I turned inward and found what I needed. I still turn inward but I also realize I need other people. I want other people who are like me in my world and I am still looking for them. I haven’t even met any deaf people yet. I am in my world alone with the silence and white noise. I am in my invisible illness world alone, chronic pain and loss of my life. I only read about others who have achieved where I am going. Or I have come across on line groups who are united in being locked into their challenges to where they don’t want to find a way out it has become their life and identity. They scare me but show me where I don’t want to go.
But I am still looking for those who are traveling companions as I am still trying to build my world. I have found it is hard enough to re-create Mary-Anne and re-build her life but walking alone is even harder.

This blog is my link to all of you, whether you read out of curiosity, similarity, searching for hope, looking for some answers or just needing to feel you are not alone.

It is important for everyone to know my world because I share it with millions of people and you never know if it might become your world or touch your life through a loved one.

Thank you for coming, for caring enough to read and for those who are following along thank you I am honored.

Until next time, God bless,

Mary-Anne

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Welcome fellow travelers:

Sorry for the time lapse but sometimes I just can’t make it through the day other than making it through the day.

I had some surgery and that turned my system into a tailspin and I have been down and out for a couple weeks here. I am back healing well. All the tests will be back and I will find out on October 31st, exactly what this specialist thinks is the “cause” or “causes” of my deterioration and pain and if and what can slow it down.

I must admit I just want it all to go away, that is going to be my only victim statement but I do and am very tired and wish so much for a day of peace and no pain.

Let’s take another journey along the road of my life as we travel hopefully getting closer to some answers, some relief, alot of help to get my life back together and some awakening to everyone who reads along about illness, pain, deafness and our very troubled medical system.

Tonight I start with:

What it takes to live in a world where you are in constant pain, disabled and/or are chronically ill or deaf.

It never occurred to me as a nurse or as a patient for years that becoming disabled, living with chronic illnesses, unrelenting pain or even deafness would impact every minuet detail of my whole world. I do not think any of us even think about any of this in the medical profession even though we work around it every day. Nor do I think as well people we even have time to stop in our daily lives to think about alot of what could make us better as people and our lives better. So no wonder we would never think about what I would consider the unthinkable until it happens to us personally. Even as a medical person you don’t stop and really feel or become a part of the illness process. You are just what you are a “caregiver.” I consider myself a very sensitive person and even sat up all night long with patients who were in pain or mentally trying to deal with dying. I would cry with them, hold them and yet now that I am in the condition I am in and I look back I was feeling all of those feelings for me. I really had no idea what that person was experiencing and for sure had no idea what their pain felt like. I really didn’t even know that I didn’t know that I was incapable of being a real part of what that person was experiencing on a life changing level. It amazes me now being chronically ill how not one part of my being, my body, my life, my routines, how I think, feel and act have all been affected by my illness/pain and now deafness. As I said on my front page I am no where close to the person I was before I became ill. I was taken from the only life that I knew, was trained for, could identify with into another world and it truly is another world that I live in.
I studied about the process of being ill, being disabled, experienced it as I trained to what I considered to be an expert, yet now I know knowledge “about” something is a far cry from knowing what it is like to really “going through” something. I don’t care how much I thought I knew, experienced and even felt I went through with those who were my patients, I now know even the greatest minds have no clue what living inside of my body is like in any sense of the word. Not only did my body change because it was and is dealing with stressors, sensations, loss of how we did things for 35 years but also how I feel inside. I don’t know me anymore. It is like I am having two lives. Now I pray I end up having three in the end of this journey.

That is why I am writing this piece. I want to share this with you because it doesn’t have to be your whole body, like chronic illness. It can be just a part of your self, mental or physical that once it has been changed in any way will have a rippling affect that affects all of the rest of your body, mind and life.

I have been dealing with my whole world changing for 19 years and it just hit me the other week just how fully my world has been totally changed and become so unfamiliar that I have no earthly idea where to start to pick up the pieces.

I related this to my mother and said it is like Katrina ran through my whole world and I am standing in the middle of New Orleans (my life) and looking around at all the devastation, no funding, not knowing if I can even rebuild or how or where to begin.

It truly is beyond me my friends to know where or how to find even the supplies and funding to start to rebuild.

I have read about people who have had their lives wiped out and made wonderful success stories out of their ruins to gain even greater lives. But I can’t find where the person was totally wiped out in every way and was also so ill and in such pain they couldn’t rebuild if they wanted to because they can’t even take care of their normal daily routines much less fight to make a new life. It takes alot of energy to rebuild a person and a life i. You add the inability to function to do what it takes well you got a problem.

If I were well and just had pain I think I could put together a really nice life. If I were well and had no pain either there would not even be a question. I could put any kind of life I wanted together. I am the come back kid and have no fears at having nothing to start with. It is the physical that has taken me by surprise and stopped me from figuring out how to make my new life.

Don’t get me wrong I am farrrrr from ever giving up. I will find my way it is just a whole new experience that well maybe I will make my come back from writing the first how to book for those who walk the same road as I do.

Just a small glimpse of what I am starting with, this isn’t what I have lost but the mess I have gained from being ill and losing everything in my other life.

There are no how to books in reality on how to first get in touch with all the little pieces and big pieces of myself, my illnesses, my pain, my deafness, figure out how to even make a day out of what I have to life with. Then the mess to clean up. People I have 5 years of paper work stacked all over that needs to be gone through, mail to be answered, filing for the past 5 years. I have mail that is up to 6 months old stacked in piles that needs to be opened and responded to. I have medical bills that will take a life time to pay that need to be matched with what Medicare has or has not paid, that in itself will take months to go through and match up. Then I need to set up payments of maybe $5.00 a piece for all the bills. Bill collectors call and talk to me like dirt, screaming at me literally like I am sitting here holding out on them. They call sometimes 20 times a day. My parents try to talk to them and tell them I am deaf and explain my situation but they just get more threatening like this is how anyone would choose to live. I have to unplug the phone since I have an alarm for the deaf on it to flash since I can not hear it ring because the flashing drives me crazy after about the 10^th phone call. They won’t leave messages so I can write them to try and explain. They just leave threats. They start at 7am or earlier and ring until 10pm, many times, ring, hang up and ring again over and over. Sometimes I try to talk to them and pick up and they won’t say anything or I can’t hear anything. They just hang up. Then they call back again.
I have brought my credit up so much and try my best but when I get so ill I can not even bathe I get behind and then things build up so much as they are now that everything is totally out of control.

It gets to me and I do love these people Deepak Chopra, Wayne Dyer all these self help Guru’s but I am sorry you haven’t a clue what my world is like. Come to my house and you get my world in order, show me how to manifest out of all that I will show you and then you have a real formula that works to sell. Teach me how to live in unrelenting pain 24/7, make my muscles work so I can walk around and get things done. Show me how to override all of my physical, then the financial and then clean up the mess to be able to rebuild when I can not sit still for more than 30 minutes.

I challenge one of these self help writers and speakers to take on my life and use it to prove their theories and let my success be their proof that what they teach really works.

Wouldn’t you all really like to see one of these self help philosophies really be put to the test in a real life situation and have the author take you step by step through their program with a real person and see if it really works?? I really would myself. I can read all day long and I have read most every well known author of “how to” “self help” “motivational speakers” all of them can write yes and that is good. They can talk very well and their CD’s are most inspiring but their claims. I have never seen one or watched a motivational program that took a real person like me or any of the thousands if not millions of people who they would have to take from ground zero and work them to the success that all of these guru’s claim are guaranteed if you just buy their material and use it correctly. Well if they are running the show we know the material would be used correctly and surely their methodology should work if they are practicing what they write, correct??? So I myself after buying and reading and practicing so many of these methods, would love to be taken through the whole process and see how it works from beginning to end. Now that would make a believer out of me and surely that would guarantee their theories and they would have nothing to lose plus they would be helping so many people in the process. People could follow along step by step with them and help themselves get better and find the answers through these guaranteed methods.

I am here in Arizona and Andrew Weil has his place here too, let him take on my life situation, mind, body and soul or someone with as much to deal with. Have him use all of his knowledge in all the books he has written and has built his enormous health center, that I can not afford to even drive by and let’s see it all work in action by taking on my life, health and losses. If he can make his theories work with everything I am having to overcome then I will be a believer and he will be really helping thousands or maybe even millions, because I think people would watch from all over the world. We are all looking for hope and for answers from suffering, loss or dying.

OK, I leave this alone now, I have said my piece like I can on my Blog now the rest is up to all of you and the more you bring to this site to read this blog entry.

Ok, sorry back to pain and how being in crippling pain can stop your life, changes you and what can you do about living with this kind of debilitation and still have quality of life.

I mean why do you think torture works so well at breaking a person because it works. Your mind and body can only take so much for so long and we all have different thresholds of what our breaking point is. Then where do you go when you hit that breaking point yet the pain continues.

When someone can figure out how to conquer these questions with answers that work then you have a book to write. Sure I have even written a book on how to live and solve any problem that comes your way and my methods work. But they have yet to stop the affects of chronic pain that is incapacitating. I am stuck there and can not finish my book until I have found the answers to how to get debilitating and relentless pain under control and stop the affects that take away any quality of life for the people who live in this nightmare. There are millions of people whose lives have been taken away by severe chronic pain who do everything they can and try every way they know how to get relief. To me now that I am one of them this is one of the most devastating, under studied and under addressed issue in any society in this world. But unless you are one of these people it is not even an issue to think about. There are too many upfront daily issues that touch everyone’s life that come first and rightly so. The more something affects the largest of masses the more attention it should receive.
That does not mean though that there is not a huge hole in our medical system that needs to not just address but make it a priority with it’s own section of medicine. Chronic medicine should be a medical field just like Neurology or any other system of medicine, studied, researched and people if not solved controlled.

Think if there are millions of people like me if their pain was controlled to the point where they could at least function and cope how many millions could re-join the working force, save in medical costs, mental health and be functional parts of society again.

But I digress here. I want to get back to just how much “chronic” robs anyone and everyone from even the most minuet parts of life and living.

There has always been a stigma to the word “chronic” and I even attached a negative feeling to anything that had “chronic” attached to it.

“Oh chronic, that means choosing to stay that way.” God how I wish because friends if that were the real definition to “chronic” I would be well and out there like the road runner making up for all that I have lost.

Then you have to add “invisible” to this nightmare because most “chronic” states of illness and pain are invisible. We are a very visual society and if you don’t look sick you must not be sick. I learned early on that if I went to the ER or to the doctor’s I had better look the part and play the part or I would not get any attention even though the attention I received was minimal because what is wrong with me is on the inside not a third eye that is in the middle of my forehead.
I have always believed in “psychological warfare” as I call it. If you work hard to look well, act well you will feel better. I still believe this to be true. But don’t dare go seek help with this attitude or you are labeled fast as either what we call a “malingerer” or “drug seeker” because sick people must look sick. Now believe me when I take off the makeup I look sick because inside or out if you are sick you do look sick. But you must be a good clinician to look for what tells about a person if they are really sick. I myself know the signs so they can’t be that hidden or hard to learn. It is just our medical system is so overloaded because of our inept way of having our whole system set up doctors nor nurses are taught nor do they care to take the time to assess their patient first. A first class assessment can tell you almost everything about a patient if you learn it and it saves a lot of time and money if we would teach these assessment skills. But now that medicine has turned into a “business” we profile now instead of assess. Profiling is very dangerous and has cost us many lives and much money but it is becoming more and more prevalent than going the true art of medicine way of assessing. Business does not understand medicine and since business is now running the show in Washington and in our health care facilities and most assuredly by our insurance companies you will find more and more profiling determining your care than anything else in medicine. The future looks bleak believe me as far as our health care system now that we have let big business take it over and run it. Doctors won’t complain because now they can actually buy into the business which use to be known as a “conflict” of interest but now is just “good business.” All in all we the consumers and that is what you are now, not patients or clients but consumers, we will be the one’s who lose out with our health, lives and checkbooks.

We are at the bottom line in medicine and that is the almighty dollar. You can have insurance out the ying yang but try to make them pay and then tell me I was wrong. Health insurance, life insurance, long term care, you name it. The name of the game is to get you to buy early, pay long term and then when you need it, that one little “clause” in your policy will keep you from collecting what you counted on to help you, which is what you took the insurance out for in the first place. The baby boomers will be the first generation to feel the full brunt of this as insurance could not make billions nor could the medical industry if they paid out what the baby boomers health needs will demand so be prepared folks. I am going to have a whole lot more company than I do now.

My nightmare has already begun and so has a lot of other baby boomers who have learned as I have but the majority haven’t a clue what is coming. If you don’t think you can be me think again. I still can not believe this is my life and I truly believe I will find a way out one way or another because I have been taught by the best the beginning of this Mega Corporate structure that is and will be the most powerful money maker corporate system in this country, “The Health Care System.”

They have the most powerful lobbyists in Washington and this power if you read the fine print on your Internet News source or your Newspaper and follow the little articles along you will see it. I have followed these little news snips for years and see the big picture plus being in the system I see the changes and have watched the giant grow and be taken over by Corporate America. It is like a cancer, slow, quiet, without drawing attention to itself. The facade staying the same so as to not look any different from the old structure you knew and trusted to come through for you, you the complacent consumer. This way you will not challenge or question it. Read all those papers you sign every time you go to the doctor, try to challenge it and most of all try to collect and you will see the wrath that is masked by cute, funny and sensitive commercial fronts with catchy sayings. The millions that go into those advertisements are the millions you paid in and will never see when you need them.

Read the website I have under FYI on this Blog and do a little research and find out just how little control you have over your medical information, your medical costs, care or outcome of your care and who cares?

You will find that many doctors have gone into business with corporations who have combined doctors together with 3 to 4 different offices and with interests in outpatient surgery centers, labs, scan centers. In the state of Arizona the law now states as long as you are informed that your doctor’s corporation has interest in any treatment centers as long as they inform you of this when they refer you to their centers it is not a conflict of interest. I assume these new corporate investments are state by state. I have not checked into whether there are any Federal Laws to protect the consumer or to protect the corporations.

All of this falls under the “slang” now of 10 minute medicine. Which if you check as to how your doctor’s office schedules appointments you will see they are set 10 minutes apart.

If you think you can assess, come to a diagnosis, treat and prevent in 10 minutes between 3 to 4 different offices well I all that pure psychic.

I got so frustrated because the hardest thing other than living with my chronic conditions, pain and deafness, is trying to get what I needed out of the health care system and also do all the work they expected out of me before my visit, I bought this book called “How to be a Smart Patient.” This book was written by doctors who need to get out from behind their computers and get out into the field because I did what they told me and am getting no where. I wrote what they said would help me greatly and my doctor to get to the problem without needless information and save me from having to write the same information over and over that took 30 minutes each time I went to the doctor. Being a nurse I felt I did a very complete and condensed summary which I take to all my appointments and not one doctor has read it. The girls that run the offices tell me I have to fill out the paper work anyway and the doctors don’t even look at that paper work because they end up asking me the same questions that are answered on their forms. I have doctors who now charge for phone calls if you need them for a crisis like at night or weekends. I mean I knew attorneys charged for phone calls but now doctors charging for calls for medications or something they did and it went wrong, I pay for a phone call and an office visit for something that wasn’t even my original problem but caused by the treatment by the doctor.
So if you don’t think Health Care has gone corporate you are not reading or you haven’t gotten ill yet. I say “yet” because most of us do get ill as we age over something so all this will affect you someday and the more informed consumer you are the better you will be financially, physically and maybe even live longer.

I am wondering now with doctors having investments in all the surgery centers and testing centers how many things that use to go under benign or even the reading of the results differently could be skewed now and in the future for “profit.” I mean we can certainly justify anything in medicine since it is not an exact science.

Do start paying more attention to how your local medical system is set up and operates. How your doctor’s office set up, their procedures, how you are treated and most of all who and how is the pricing set up.

Have you ever wondered that? Who determines how much an office visit costs for your 10 minutes, how is it determined and how much are we going to let the rising cost go before we start to expect something in return. Medicine is the only service where they do not have to account for anything other than their time and you still have to pay whether you get better or not.

Well since I went off on a very important part of my journey dealing with the medical system and how I have watched it change over the years and not for the better I will finish my journey through experiencing what it is like to live as a chronically in pain person.

Good night fellow travelers,

Mary-Anne

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Good Evening My Friends: 

Well, I thought about whether I should stay true to my journal and write about what is going on step by step and decided that if I am to share with you all that goes on throughout my journey to the end I must stay true to myself and to you.

Today I was focused on thinking about death and dying. My father who if you knew him you would be amazed. He is 81 and until a few months ago still road his bike up to 5 miles a day. On the treadmill his heart rate only gets up to 101 that is how great of shape he is in. My father has always taken care of himself. He has a strict German mindset that has been passed down for generations in our family. I am the first to break it and boy did I break it  (smile).

We do not believe in getting ill and if you do get ill, you do all you can to support your own body, mind and will to heal itself. Our whole family has died throughout the ages of old age and never does anyone go to the doctor or the hospital unless of course you broke something but for anything else, we heal with faith and doing all the natural things to support the body to heal itself. It has worked. My father has always eaten right, exercised. I have never seen my father ill. But now things may have changed. He had to have a colonoscopy because of blood showing up. They found two tumors and a polyp. The polyp was removed and they have taken a biopsy of the tumors. They are “suspect” for cancer. This has devastated me today.

I know and we all know that the end for all of us is dying which has always amazed me and I have studied and thought about this phenomena for a life time because it just seems to have so many contradictions to me.

We live our lives as if there is a tomorrow. We focus on petty little dramas, hurt each other, are very self focused and build a world around every thing that denies that there is an end much less it being death.

Then we have taken death and made it socially such a negative and heart wrenching experience.

I often wonder why societies took death and dying and made it so negative, scary and such a doom and gloom experience.

I wonder what we would be like, what going through threatening illnesses and dying would be like if we had made it a positive experience that we celebrated like other transitions, birth, graduations, weddings.  I saw a movie once where a father was dying of cancer and he handled it very matter a fact. He told everyone, he talked about his experience. He went to each of those he loved and cared about and talked out any unfinished business. He got all his affairs in order. He handled it with such dignity and like it was just a transition from one situation to another. Then instead of everyone waiting until he died and then having a wake I guess it is and a solemn funeral where everyone wore black, cried and reinforced this doom and gloom experience of dying, his family put together a huge party. They invited everyone in the family, all his friends, co-workers everyone who would have been at the funeral and they had a huge gala. Of course he was the guest of honor. But they all were up, happy, laughing, talking about the times they shared personally with this man. He went around and talked to everyone. It was terribly moving and such a great idea I thought. No one was sad, no tears except of heartfelt emotions. Instead of everyone getting together after he was gone when he wasn’t there to enjoy their company, what they had to say and feel about him and for them all to show each other the love they felt, he got to really enjoy seeing and feeling his whole life sharing it with those who had traveled this life with him. It was wonderful. He died two weeks later a very happy and at peace man. He missed nothing. They had no funeral, which cost way too much for just burying a body. They spent the money celebrating and giving this man the greatest gift anyone of us could have and it was happy. It made me think maybe death isn’t so bad and doesn’t have to be such a doom and gloom fearful experience that really ends up being such a trauma for those left behind. Then you don’t put all this money into something that is so sad, so traumatic and have everyone rally around to look at a corpse in a box that cost $10,000.00. How gruesome.

If we made it a ritual that was happy, loving, natural and shared the whole experience with the person we were saying goodbye to I wonder how different death and dying would be in this country.  I wonder how many things about life it would change for us and how we lived our lives. Why do you suppose we did and do make death and dying so gruesome and so dark and scary?  What do we get out of that instead of doing it where it is as natural and as big of a celebration as birth. I mean we may not remember being born but it is a traumatic experience and not a pleasant one for the baby. Maybe death is the same it just seems the way it does because we made it that way by our inventing rituals that reinforce it as a devastating loss that people actually have to go into counseling for, some for years. I know when I worked at the Hospice we had support groups for those who could not get over the death of a loved one. You can not tell me how we are taught our whole lives, what we are shown, how it is talked about and how we keep death and dying in the shadows of life, that this does not affect all of us and not in a healthy or healing way.

We all have our theories, our beliefs and our religions but no one knows for sure what is after death if anything. It is all based on belief. No one has literally come back like Houdini and gotten on TV and said ok folks this is what it is all about. I mean if anyone was going to come back it would have been Houdini because he was as obsessed about death as anyone and he promised if there was a way he would come back.

Every year on Halloween, the great magicians of this country get together and try to contact Houdini, but to this day it has not happened.

So no one really knows what is after life ends here. That is part of the mystery, part of the fear of the unknown and part of why we keep it still in the back rooms and treat it as the worst tragedy that one can have told to them or have happen.

Dr. Kubler-Ross and Dr. Bernie Siegel tried to bring death and dying out into the open and studied it as a science and with spirituality. I studied both of their works and still do.  But as a society we still didn’t feel comfortable with looking at and having death and dying in the forefront. I now as a nurse it is still an uncomfortable subject and not treated as it should be in the hospitals or ER’s.

It is not a subject that is well taught in medical school.
Here it is the one guarantee in life. The most absolute guarantee and after thousands of years we are still keep this subject taboo and very uncomfortable. In fact you may not even like me writing about it. I don’t know that I am so comfortable writing about it. But because of my situation and now my father’s it has come to my mind and is something I must pursue to find peace with it.
When my dad told me of his news I immediately went into a dark place and broke down into tears. My mind has been going in many directions and I know me. I have to process it and go where I need to go to find peace so that I can come to terms with what I don’t want to happen, to lose my father. Yet, all my life I have known like you about death and that it would come at some point to all of us.

We are funny creatures when it comes to so many important and real issues. We go into denial or just build a world around what we want to be true, skimming over the most unimaginable or those issues we do not want to face because we can find no peace in the “unknown” especially when it is going to happen to us.

It is better to focus on sports.  You know sports is so much more important to us than death. Why is that anything to point out because death is real, is guaranteed and because it can happen at any time, which should make life that much more precious but it doesn’t. We kill for the most insane reasons. We have more information, more rules, more coverage, more respect for sports than we do for death and dying.

Yes, we are a funny in our socialized thinking and how we choose to handle what we find most uncomfortable or just don’t want to have happen.

I haven’t got it worked out anymore than anyone else because no matter what like I said it all comes down to a belief no proof which makes coming to complete peace with death something I am not sure anyone can do. You may say you have but when the time comes or when that of a loved one comes I wonder how many people end up reacting the way they “thought” they would. Acceptance, yes I know people who have come to acceptance but that is different than complete peace.  Sort of like there is nothing you can do about it so you might as well accept it. Now I kind of envy these people as they are able to give in to the mysteries of life without missing out on living or going to pieces with dying. They have something that just makes it all OK just because they accept that this is the way it is so go with it. Maybe I can get to that place someday or maybe my make up is such that I have to have more.
But I do envy their simplicity, their willingness to just let go and give in.
What a wonderful frame of reference to have about life and death.

I think I will work on that one as I have never been one to be simple.

Yes, just writing it feels good and makes me want to pursue that feeling of total surrender which is what I think it really is.

I am just not sure my mind will give me that kind of break J, it has to “know” and everything has to make sense to my mind.

I do know I am not alone or death and dying would not be in the background, treated so dark, so traumatizing and all our rituals would not be so negative and reinforcing that death and dying is fearful and negative experience.

Something is still not right with us or we would be having that celebration party like that man did. I am not sure I know of one business that does that sort of catering yet. Do any of you know of one? I sure would like to know if there is one out there. Is there a business that makes death and dying a celebration, a transition that we share with the person before they go? If you do know of one please write me and give me their address and phone number. I will get back with you on this if I get any emails about this.

But until there is and we start changing our mindset and how we treat death and dying it is a tragedy that lasts a life time.

I also wonder why it is the one mystery of life, the only one guaranteed mind you, that we are given no concrete, beyond a doubt, not even a hint as to why or what happens and I don’t mean a belief. Don’t give me a religious belief as being guaranteed because I can answer that one right here and now it is a belief, until you have been there it is a belief.

For now my heart is aching for me about my father. We will hear next Thursday as to whether the biopsies are negative or not. I will let you know.

If you have any comments, any enlightenment on this subject I would love to hear from you. With all that is happening with me and now my family may be facing another crisis, your stories, your words of experience would be most helpful.

For now Good Night and God Bless,

Talk to you tomorrow,

Your traveling companion Mary-Anne

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Good Evening My Friends, it has been a while as I have been very ill, another setback.

I try to wake up each day with a theme so that I have something positive to focus on no matter what the day may bring. I practice what is called “being in the present moment.”  It really works and I want to share it with you.

Everyday is so very difficult on me with the pain. I am not complaining about where I am on my journey. I just need to paint a picture with words every day so you can be in the moment with me. Otherwise you read more as a detached spectator.  I want you to be a participator. That is the only way you can get as close to being in there with me as we can get. So bear with me each day as I paint my day with words so that you can come inside and really visit me, feel, touch and hopefully take away some sense of “going through” a part of what I am feeling and going through. It truly is a good way to pass verbal communication and get as close to the experience as you can without being the experience.

I wake up and as I have said take my medications so that I can actually get up. What a horrid feeling to wake up every day with pain, sweating, burning up, your heart irregular and beating very fast, which of course affects your breathing. Then trying to get up when your equilibrium and coordination are not within your control. I really can not do justice in my description of what waking up is like other than not waking up would be better. Never in all my life could I in my wildest imagination think anyone could wake up with so much happening that is outside of your control and could be very paralyzing if you didn’t learn how to have faith and determination through years of teaching ones self how to hold on just for the sake of holding on.  As I write this I truly can not believe I wake up with all the symptoms I do and to actually know that my day, my life is controlled by taking medications to give me the ability to live through another day.  I am not sure I will ever get use to this as my reality but it is. So then I have my medications set out to take. I make myself get up and go to the kitchen to take them hoping that one day it won’t be such an effort and I will see some improvement. I get up and my feet cramp up twisting inward, my whole foot curls up, my toes cramp in and under each other making walking a task I never thought could be so hard. As my foot touches the floor I feel the pain of walking on cut glass step by step. I am dizzy, my equilibrium is uncontrollable where I walk like I am drunk. I have very little coordination to where I must hold on to something each agonizing step of the way to the kitchen. But I am determined to use my mind to make myself focus on each part of my body, each step telling it what to do. This is part of my therapy that I developed from learning about Sister Kenny who cured Polio when doctors could not using the same techniques as she did. They work it is slow going but I make it so far every day. But I tear up as I keep talking to my body because I remember just a year ago I could walk just fine and how drastic of a change has taken place in just one year. I fight to stay in the present moment when all my feelings want to go to fear that if all this can happen in just one year what lies ahead for me?

This is where I really admire the human spirit because my friends I tell you I truly do not know where I get the ability, the tenacity, whatever it is to keep going on day after day with only faith to hold on to as the years have taken such a toll on my body, my mind and my spirit. Yet something inside keeps on fighting, keeps on believing that I will be an even better Mary-Anne and that I do have a purpose that makes all of this worthwhile. For now though I just feel lucky that I have worked so hard on myself in developing myself into a well adjusted, happy, strong, determined and so full of faith in my belief system that quitting does not even register no matter what comes to my mind when I get to the point I was all this week.

That is why there are no entries for this week. I just was so sick, unable to even dress or go out. I couldn’t cook so I didn’t eat. All I could do was lay and sleep to escape the pain, the sickness and the loss of my will to fight any longer. I was also angry. I am so tired of all of this.

I can go so long and then I hit what I call my threshold to where no matter what I believe, practice or tell myself I am just tired.

There are so many things wrong that when I get so worn down, in so much pain and my fight leaves me I just can not see how getting all of this even under control much less any real answers will come.

I think back to the days when getting out of bed was just a thoughtless routine. I remember how I use to wake up. I always woke up with a smile on my face and would lay there and get thrills in my stomach thinking of my day. I was always so excited to wake up and to face the day. I never needed a reason to get up just being alive and making my day whatever I wanted to was enough for me. I would lay there and go through what I was going to make of my day. I couldn’t wait to get out of bed and make it all happen. Each day was like a dream come true. I don’t know where I got my attitude it was just born in me and I thanked God for it. Lot’s of people wake up irritable and it takes them a while to get oriented and get motivated to face their day but not me. Each day was a delight and I couldn’t stand to go to sleep because I hated missing any part of life. But then I added to my thinking that if I went to sleep the sooner morning would come and my new adventure would start so I go to where going to bed was exciting because it meant morning was just around the corner.

I always could find a way to make everything look and feel good maybe that is why I have been able to make so much lemonade out of lemons and have lasted this long.

I have gone down physically this past week. I have a bad bladder infection, allergies. The change of seasons brings out the worst in my symptoms to where everything  potentates and every symptom screams out loud and clear. This is when it takes my most patience and I must hold on to my faith with all that I have. I still hate losing a day.

I ache to feel better so that I can feel some of the old feelings again. Medications numb you though and it makes it hard to feel this I truly feel robbed of, my feelings. I love my feelings they always carried me through the day and made me so happy each and every day. Down days is something I just never experienced until I got ill.

I have to redo my health plan as I see this one is not working so back to the drawing board with you. I am going to redesign it this weekend.

I have surgery on Monday so I will not be writing for a couple of days. They are doing a muscle biopsy to try and find out the “cause” of why my muscles have wasted away and do not work correctly anymore. This Neuromuscular doctor feels he can get the answers to my muscles and my nerves from this biopsy. Because I am unable to lay still with the electrical shocks they are having a general surgeon do the surgery under Versed because it is two hours and I must be totally still. I will enjoy the Versed, to not feel pain for a couple of hours feels like heaven to me so I am really looking forward to it. I know that sounds strange but if you felt the constant and relentless pain you would also enjoy the relief believe me.

I am beat as you can tell by my writing so I guess I will try to sleep and pray that I wake up better so I can have a beautiful day. I am going to use all of my attitude to make tomorrow or today rather a wonderful day.

So until tomorrow my fellow travelers I say goodnight and may you find peace in your sleep and make your tomorrow all that it can be.

Mary-Anne

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Deafness

I have been sharing my experience and perception about chronic illness and chronic pain.
I have not touched on the sounds of silence. I want to share with you what it is like becoming and being deaf after years of hearing.

First, let me define my deafness.

Without hearing aids I hear nothing but abstract noises that must be of certain pitches. I can be standing next to a phone I can not hear it ring so this is one pitch I can not hear. I can not hear thunder. I can hear certain loud crashes but other than that all I hear are 4 octaves of Tinnitus, which are high pitch loud I mean loud sirens that scream constantly in my head 24/7. Then believe it or not I have a banjo always strumming the exact same cords over and over and over in my right ear. I thought I was crazy as far as the banjo but the Neuro-Otiologist says it is normal. He said it was no different than hitting your knee-cap and it having a constant funny feeling in it. He said it would go away but it hasn’t. All day every day I get to hear Deliverance in my head. So I consider this pretty deaf. Under the state disability I am considered deaf. On the official breakdown of hearing loss I am one step from complete deafness which is where you can not gain any benefits from hearing aids. You are “stone deaf.” I am one step up from stone deaf under the governments break down of definitions my hearing tests put me in what is called “profound hearing loss.”

As far as hearing aids, I must wear the most technically advanced, most powerful hearing aids. When they are of no benefit for me, there are no other hearing aids for me to move up to. I am done and move to the “stone deaf” definition.

Hearing aids of today “digital” have allowed me to hear some pitches of sound. If I look at you, I can read your lips. Now this is catchy, I can read some of your words that you form with your mouth ONLY IF I am familiar with the subject being talked to me about and only if I am being addressed by one person and most definitely ONLY with my hearing aids in.

One of the greatest losses and hurdles that I have yet to overcome or even figure out is how to get my brain to watch and read lips, then comprehend those words at the same time. Then process all of this into making sense called communication. You would not believe what we take for granted as hearing people that goes on rapidly in your head at every given moment. But I sure lost it when I went deaf. There are three distinct and important functions that we as hearing people do and are going on at a subconscious level all at the same time. I am now trying to do all of these functions on a conscious level step by step all at the same time and keep up with all the other parts of an interaction going on at the same time. What is happening around me, the other people who may or may not be involved yet throw in a comment, someone asking me something while I am in this other conversation well it is just a mess. If you really want to get the shock of it all, sometime wear ear plugs to the store. I had my family do this only they wore ear plugs for a 24 hour period just to get a glimpse of what I am trying to adjust to, get frightened of, overwhelmed by and the many many losses that make losing your hearing much more than losing the ability to hear sounds.

Again I digress, so here I am trying to watch your mouth which you do not annunciate your words very well, funny I had never noticed how badly we talk. We are very lazy in our speech my friends. I am intently watching your mouth movements to make out the “main” words, this takes my total concentration which is not good. I am not able to see your face, your animations, anything going on around us. The whole place could be on fire and I would not know it if you did not say it with your mouth movements that is how much concentration it takes for me to get what you are trying to convey to me.

Here I am using all my brain power to focus on your words, yet I am also supposed to be able to process your words into making something meaningful out of them, which is what you are trying to convey to me. The third process that is going on at this exact same time is taking what you are saying and interpreting it into what we call “communicating.” This is when everything that is being said is formulated into making words take on a logical meaning in your mind by comprehending, understanding, associating and thinking about what you are saying triggering what kind of response this elicits in me so that I can then answer you. All this goes on naturally when we can hear. Our brain does all of this automatically. Well now mine does not.

I never knew so much went on in our minds, with all of our senses and many other variables that come into play in a simple dialog forget the debating team for me J.

I first had to figure all this out and that it was taking place, how it takes place, as yet I haven’t figured out how to train my brain to all these functions consciously. I do know now why people equate “deafness with being dumb.” Believe me I have heard this more than once.

This is very frustrating and just ruins TV or the movies. I never get to see the movie, what anyone looks like, what they are doing, nothing. I am so busy reading the words and trying to figure out all that I have just explained I haven’t got time or enough eyes to read the script and watch the movie at the same time. By the time I finish reading the closed caption everything has moved on. That is also a problem. I did not take Evelyn Wood’s speed reading and in movies or TV you can’t say would you please slow down so I can keep up. I haven’t seen a movie since I went deaf a year and a half ago, nor have I enjoyed a TV program. I never get to see it.

In every day life this has really taken on a major change in my life. I do not like to converse outside my inner circle. It is quite embarrassing at this point in my journey with deafness. I can see how I look and act.

As I have described I am so busy trying to formulate your words with my mind that I have barely have a clue as to the content trying to be conveyed. So I believe I have that “doe staring into the headlight look on my face” and it just makes me feel stupid. I am a highly intelligent woman yet when I now try to verbally communicate, I truly feel I come across like I am retarded. Again being in my profession I can pick up on people’s body language with me, how they start to change how they talk to me and then treat me.
To me the world has gotten a lot colder, complacent and comfortably numb in how we treat and react to each other. I am old enough to remember a different time in this country.

Deafness has given me new sight and a whole new ability to hear what I never paid attention to before I was deaf. I learn something new every day being deaf all taught by my interactions with people either through direct or indirect interaction.

Since I never noticed to be aware of these new awakenings I don’t know if I would not be the same way if I still had the ability to hear. I hope I would not be but unless I get my hearing back I will never know the answer to that.

I do know people assume way too much about me at least and my deafness. They believe if they talk louder I will hear them. They also believe if they talk slow I will hear them.

This is not true for me. It is all about annunciation and using your whole mouth to speak your words clearly. My Otiologist talks at a normal rate of speed but he looks at me. He uses his lips and whole mouth to speak each word distinctly, which really is how we should speak to anyone. I have really noticed how lax we are in how we talk. People mumble, slur their words, put their hands over their mouths, speak going up and down with the volume of their voice. They talk so fast that they do not pronounce many of their words. It is like they kind of say part of the word but move on before they finish it. Oh yeah the worst is people barely move their mouths or lips in forming their words.

Next time you are talking to someone be aware of how you speak I think you will surprise yourself. On the superficial side, believe me it is kind of sexy to watch someone’s mouth and lips move if they use them to their full extent. There was a sex symbol maybe Marilyn Monroe who used this to her advantage. From one who is becoming an expert on your mouth, lips and teeth know how important they are to make them as inviting as possible and to talk as clearly and distinctly as possible. I am starting to do it for the looks of it because I like it J.

I have definitely noticed that once I start to converse with someone in any situation but the worst as I said before is any interaction with the health care system, that there is a definite lack of respect for me. I am still trying to figure out if this is because I am still in the victim role as a deaf person or if it is what I call “profiling” that people do unconsciously when they are dealing with disabled/deaf people. I am treated like I am a child, talk down to as if I were a child and ignored as if I am invisible. I know this is about my deafness because I was never treated this way when I was well and could hear. If you knew me you would know I could not be ignored nor would anyone attempt to talk down to me much less treat me like less than I deserve to be treated.

I have much work to still do on this, analyzing, changing Mary-Anne and how she presents herself and learning how to get what I want and need as an equal.

These are just some of the insights into being deaf. I don’t want to write a book which I could on all that has touched me, taught me, changed me and handicapped me by just going deaf. Then you add being disabled and invisibly disabled on top of that I have a novel.

It is a very rough road that each day brings new challenges and at this point pushes me back more and more into the shadows of life.
As I stated on the front page of my Blog I in no way resemble the Mary-Anne I knew before I got ill and went deaf.
It saddens me and I still have not found peace with all that has happened, all the losses but most of all the wearing down and loss of the beauty that once was Mary-Anne.

I hope I get to live to finish re-creating Mary-Anne and helping her find that fiery, energetic, life force driven woman full of life, afraid of nothing. A woman full of determination, unshakable belief that nothing could stop her and most of all a woman who believed that time was all that stood in the way of her and whatever she put her energy into getting.

I have shared only some of what deafness has shown me, guided me to and hopefully will help you become aware of just how losing one sense, hearing can take away much more than your ability to hear. I am going to spend some time on my Blog going over what I hope you will find very enlightening about what you can develop within yourself about yourself, without having to experience the great loss of becoming deaf. Maybe after reading this you will become a little more tolerant and less reactive when someone does not do, say or act according to your definition to normalacy. I hope you never have to take time out of your life to learn how to live in a hearing world that expects you to hear and penalizes you with constant consequences from society to individuals who take your not acting “normal” quite personally. Maybe a little tolerance could go a long way in our pressured society. Try it on for just one day and then tell me what you experienced and how you felt about yourself that day, a day of tolerance.

I wonder what would be different all over this messed up, killing, hating, wars, political “rights” and all roads lead to money for the few and heartache for the masses if we all practiced “Tolerance.”

Good night and Good morning my fellow travelers,

Mary-Anne

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Good Day Fellow Travelers.

I am sorry I did not do my entry for two days. I had some very overwhelming news on Monday about my physical condition. See I have been searching for these 19 years, one for a competent medical specialist. Not just one who could help me but just one who would take the time, really knew their stuff and who backed those two things up with doing them. I truly can tell you I didn’t find one until now which is really a sad testimony to our medical system, but it is true.

Now I finally have one and he is an amazing doctor. It is like starting from the beginning in some ways, yet I bring with me a long history that can not be denied. This includes bringing with me years of terrible trauma, abuse and from conflicting realities inflicted by our health care system, family, friends, strangers and myself.

I will tell you what I have found out that took me back to where I couldn’t write for a couple of days. After this entry I want to address a much larger picture I want to get into about two different realities that always emerge from whatever happens to me personally. I do like that about my journey. Really it happens in everyone’s life as they come up against obstacles or challenges but I am not sure how cognizant people are of these constant parallels that are in play whether we choose them or not. I will come back to these two realities tomorrow.

First, I went to the specialist I finally found after 19 years. I have no doubt now that I have found a true medical specialist that he is going to finally, put all the pieces of my puzzle together.

The problem that blew me away was what he found on this visit. He tested my nerves with the EMG and all were abnormal meaning that my body has attacked my whole nervous system which of course we all know runs everything in the body, not good. Part of what makes this specialist a really great doctor is that he knew from there that he had to see if it also had attacked my muscles. So he asked, asked can you believe that? I have never had a doctor ask me if I would mind having another test while we are there since it would tell him so much. Of course after all these years of suffering and loss of life I said yes. This time he was taken back. He expected the muscles NOT to be involved but to my unfortunate plight my muscles in both legs and arms (which were all he tested) are also under attack. Who knows how many muscles or if all my muscles are now involved.

I thought I had been through all the emotions that a person could ever experience over these 19 years. I even held up great the rest of Monday, but then I came crashing down Tuesday and went numb.

Here the two largest and most extensive systems that run every part of life itself from the cellular level to the actual movement and functioning of every part of my body are now under attack from whatever is causing this.

So what it boils down to is my whole body is destroying itself on a grand scale. Now I don’t know if it will be slow organ by organ because the nervous system and the muscles run everything. That is what hit Tuesday night. I had this flood of reality set in from my brain processing exactly what we had found out that day. Think about it my fellow travelers. Your heart is a muscle and is conducted with nerves, the lungs, your gastrointestinal, your eyes, your brain. It may not be feasible to know how much of my body is already being destroyed, or at what rate these two life supporting systems will progress, or what route they will take. Can I go blind in a year? Will my heart stop in a month? Will my brain go mushy in 6 months? I don’t know and neither does medical science, unfortunately. Naturally, it is coming down to the conclusion that the true cause, what path and what speed this progressive malfunctioning of my messenger system to my whole body will take, will stay an unknown variable. Then to finish me off, because there is muscle involvement he said it tips the scale from being the “treatable” autoimmune cause to the “untreatable” cause or even a third unknown.

At least with the autoimmune I could have had the antibodies that could have slowed down this self destroying process. Now it will be only supportive measures and in my mind up to me to find a way to fight and live.

Watching his lips say this just took away my everything. I was a walking zombie Tuesday and Wednesday. I am a little better today but still everything seems so surreal. I can not take it all in yet. It is too much.

I have more tests to go through but all of the rest of the tests are to try and find the root cause. But no matter the root cause the results stay the same. He has already alluded to that by saying there was nothing “I” could do to make a difference. Like, I asked him if the exercising I am doing to try and fight for my muscles to come back and to gain control over my muscles would make a difference. He clearly said “no” but continue them they can’t hurt. I figure it is a psychological thing he is trying to give me a sense of control over something.

I want the truth and I have no doubt I will come to terms and peace with all of this but I want to share the interim with you. I think it is important to share the process at least that I go through to get from victim back to victor.

First, I have to take it to the worst possible light, which is this. It is like I have MS, Parkinson’s and ALS all wrapped up in one body all working on me at the same time. This description would take anyone down to doom and gloom. Like I said it is all too much to let in. My mind is letting me know that by going numb. But my subconscious is working in overdrive trying to use all my skills, faith and knowledge to bring me back to sanity and the making of a new reality base. Once I get my new reality base then I have a foundation to take me from victim back to a victor.

In the mean time I am just letting go. I do trust my inner self and the inborn process of life. I know all the natural processes that I have discovered that we all possess do work and will work. As all that is working behind the scenes subconsciously, I am consciously working on what this new reality means to me and my life. I do know that I am going to change my plans, my attitude, my whole perspective about me. My life is changing without my intervening so it must need to happen. I also know that again, I will have to re-invent Mary-Anne because everything has changed. I have much to face, yet I also have to be aware that something could happen without warning to where I don’t want to put too much time into changing and miss out on living.

I have much to think and feel so that I can clear up and decipher what is true and what is my emotional take on my new reality. It will be more difficult this time because so many variables are involved and so much will be left without answers. Unfortunately, I am an answer person making this a whole new way of thinking and processing so that I can come to the place where no matter what I don’t know, I am going to focus on what am I going to do with what I do know. Most of all I must teach myself how to learn to live with so many unknowns.

I think one of the amazing parts of this journey is being the person with the problem or challenge then being able to be who I turn to for the answers. I knew without knowing that all the answers to my life, as with your life, are instilled from birth inside of me and I could and do tap into that source at any time. That is what got me into doing what I do now and what brought about the writing of my book. I have been told too many times that I can take anything, look at it and bring to light the resolutions and step by step process to bring about the results for any thing that anyone brings to me. It is quite a gift I was given and I thank God for it. I am not sure I have ever been told I was wrong and I have helped well over a thousand people world wide. It is like being Psychologically Psychic J.

I remember back to eight years old being able to listen to this voice inside of me that was an adult, very wise and very loving. She knew how to talk to me and resolve anything that I asked or was going through. I was so young I didn’t know any better so I made her out to be my guardian angel and named her Angie. I turned to her for everything throughout my life. Funny I never thought I would tell you about this, but it is true and she has never been wrong yet. Now I haven’t always listened as I am human and stubborn so I have made plenty of mistakes but only because I chose not to listen to my inner voice and do what my “ego” wanted to do.

I learned how to discover and develop this voice in anyone and created a therapy around what I discovered. I was then able to teach anyone how to tap into their inner voice and the skills to make their life happen for them.

I have found that teens and young adults are the easiest to teach. I have been teaching these skills and empowerment for the past 7 years on line free to teens and young adults. They flock to it and I have had amazing results.

So I wrote it all down into a manuscript but am stuck because I am not well enough to edit it. It sits behind me here in my study. It needs so desperately to be published. It could change the lives of teens and young adults around the world as it has been doing through my web site these past 7 years. But I need to make a living as I get nothing but disability which covers hardly anything and the more my body breaks down the more medications it is going to take to keep me alive. I was so hoping to publish my book and use the money from it to support myself and keep my business going for my kids (the teens and young adults) free. It is also what I live for. It would be my reason to fight for my life. There is no greater reward to me than to help these kids and to be apart of their transformation from troubled youths or delinquents to healthy, happy, achievers with goals that are now positive productive young people of the next generation.

What could be a greater profession or legacy my friends?

Pray that I make this happen. It has been my dream for as long as I can remember. It is all I think about other than growing and evolving into the most loving and beautiful spirit called Mary-Anne.

Well, I am getting too intimate maybe so I shall stop here.

I have much to work through. I am also grieving deeper than I ever have. I hurt so bad inside and honestly I don’t want to be going through this. How I wish I had, had a different fate. I am holding on to what I wrote on my front page my friends, that no matter what is now, I must believe the best is yet to come.

Tomorrow I am going to write an entry about one of my “soap boxes” because it keeps smacking me right between the eyes almost daily and that has always meant that it is something that I must work out and find an answer to. So I will talk to you tomorrow about this.

Good night and thank you for coming, you are my strength right now. I am holding on to you until I can stand again.

Your fellow traveler,

Mary-Anne

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