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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