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Aphasia is, well, weird...it's not like so many physical problems that you can see, touch, etc. You can't see it, and most people do not know that we have a problem until we open our mouth! It's a silent disability, and it's different...you can't tell people "exactly" what it is, or what it isn't. Most disabilities are "right there", they can be seen or others can talk about it, including family, friends, doctors and therapists, but not aphasia...it's weird.
Now, I do understand that there are lots of things that are worse...no question about it, however, now I have said that...aphasia is not fun! No one understands, including doctors or therapists. None. I know...someone will say that's not true, for example, many will say a lot of people have learned everything about aphasia, especially doctors, therapists, etc. and yes, that's true, but...they simply cannot understand unless they have aphasia. If someone does not have aphasia they simply do not understand. No body. None. Can't be done. This is the way it is.
On the other hand, those afflicted do understand, but only know how it feels or what it does. They, and I, still cannot understand how or why something can be "right there" in the mind and what comes out of the mouth is something entirely different. Strange, weird...it's like "how can that happen?". So, I created my own Code of Life so that I can deal with things that I can't understand and use what I can:
Depression is a part of the world of disabilities: Some days are good days and some days are miserable, but accept it and change it instantly. As soon as I know that I'm depressed I change it...turn on the music, take a walk or anything else but I don't let the depression get me. This is just an emotion and I can change it. You cannot be depressed when you are laughing...try it.
Like myself! My family, friends, doctors, therapists and everyone else may try to help but they can't. I must do it myself. I must do everything that I can by myself and ask for help only when it's critical and there is no other way.
Live alone. I do not mean living with someone or not, I mean live alone in my own mind and heart. If I can like myself, laugh at my own failures and know that I can do whatever I need to...myself, I do not need others.
I need to learn everything I can about my disability. Everything. Use the Internet, read the newspapers, read the books, ask my doctors, therapists or anyone else. Knowledge is power and I will not accept "just good enough".
I will not accept anything just because someone else told me. How do they know? I have to try. I will not assume anything until I have tried.
Don't waste time. Don't worry about things that I cannot change, and do things that I can.
Take one day at a time. It has taken a long time to learn everything that I know and there is no reason to rush. One day at a time, one item at a time.
Smile. Find a way to smile more often. If I'm going to be around people I must smile and feel good or others will not want to be around me.
Read my own code every time I feel bad or depressed. Get over it an go forward every time, every day.
Elementary, yes, but I had a Code of Life and I could get rid of the "smoke and mirrors" in my mind. I could start to learn, or relearn, again. No, just feeling better did not do anything for my aphasia, but that's a different part of my mind-set. I had to be able to feel good to be able to learn again, but how? Had a couple good therapists that could help me to find the difference between quarters an dimes, but how much time could they give to me? Two or three hours a week? I needed a way to relearn all the time, twenty-four hours, seven days...but how?
Obviously, I did it. My computer helped my aphasia more than any other thing in my world. I could not have done this without it. My computers and my ability to use my programs changed my life and I believe almost everyone else can do the same thing. I changed from being an aphasia-afflicted encumbered person to someone that can talk, listen and, most importantly, write again.
Before we talk about my journey (yes, it is a journey) I want you to know that my aphasia was not "temporary" or "short-term". My aphasia is "permanent", like millions of others. I was not just "lucky"...it took a long time and a lot of work, but, please understand that it can be done. Since I am not a doctor or a therapist there are many things that I do not know about aphasia or other communication problems, but, of course, I do have chronic aphasia...and I know some things that they don't: I did it! So, think about this..
If I could find a way to return my original communication abilities, even though "they" told me that it can't me done, and if I did it by myself, using a strategy that worked every day and something that was even fun at the same time...why not try? For all of those afflicted, for all of the caregivers and all of the family or friends that believe that "this is just the way it is"...why not try? And, for the professionals, including doctors, therapists and pathologists…
If you think someone was incorrect about my chronic aphasia, or it was an error, my affliction was determined as unconditional and extreme. The licensed pathologist told us that "this is the way it is"...and probably forever. It appears that life is not exactly what you think it is sometimes. If I could do this, and I did, I believe others can do the same thing. There is hope for hundreds of thousands of people: there is a life after aphasia. Stay with me...the Journey is next.
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