My disappearing life

Back in my day, I was taught to work hard and never give up.  If something in life did not go my way. That was okay, it just allowed me to widen my scope of possibilities and find an alternate but satisfactory solution. Sure, life was difficult, but this was not an excuse to take the easy way out. As early as I can remember, no matter what I had to deal with there was a path to success.  Life was presented to me in such a fashion, that no matter what or when I did anything and I mean anything, it was going have to be done my way and not in the conventional sense.

For example, if I needed to go pee instead of standing up, I sat down and still do.  If I had to take notes in school, I used a laptop, not a pen, at lunch someone had to help me eat.  Point of this is, there was and is always a way to achieve a goal. I mean hell for a guy that cannot walk, I used to ride a horse and scaled down a 275 ft. building.

Sure, life was difficult but there was always a solution and a way for me to complete a task.  There were times when, people did not understand what I was trying to achieve. After we brainstormed together, ideas eventually became a reality.  It was this forward thinking and always pushing the limits that helped me reach this point in my life.

Now, I am a two-time college graduate, a video hockey coach, advocate, author and business owner. 

Did I get help? Were there obstacles that I had to face?  Your damn right.  In saying that, during these times that I would sometime feel defeated and helpless, through the power of the mind those feelings were turned into determinization.  In those days my mental health was okay.  I mean sure once in a while I used to get the ‘why me’ feelings but nothing too bad. It was exciting for me to face and overcome new challenges.  There was no time for me to sink into a depression. 

Today, I wish that I could sit here and say that was still the case. The very sad and scary truth of the matter is, everything that I have worked so hard to achieve, is starting to slip away from me.  People are wanting more of me and are enjoying seeing my life expand to new and exciting heights. This is a great feeling and I want to experience it more.  Its nice to be called an inspiration.

Hard truth is I am at the absolute maximum for life.  I’m stuck and cannot truly get any more out of life.  My body and mind are beyond exhausted. Trying to live life with no user of my legs and one hand tied behind my back is not easy.  I cannot keep doing all that I am doing, with the amount of care that I am currently receiving. At this point the only solution is for me to quit everything that I’ve worked so hard for.

I enjoy living on my own a lot, because I am confined to a powerchair and need help with most aspects of life, a high amount of care is something that is of the upmost importance.  So, when I presented my case for an increase to my care, I was ready for some resistance to my request, but I was hoping after they heard my reasoning, my need for an increase would be understood. In my mind, needing some more assistance was not that big of a deal, boy was I wrong.

When I asked for more care to live a more positive life, I was met with multiple and abrupt “NO’S.”

How come when I was young, everyone had an open mind and wanted me to succeed and now when I have a chance to excel in life I am ignored? Instead of just adding to my already existing care funding, the governments solution is to basically lock me up and throw away the key.

What has been suggested and pushed on me to shut me up and make me go away, is for my entire life to be uprooted destroyed and changed forever.  How you ask?  This would be done by me moving into a PCH. (personal care home) 

Even though countless times I have made the case, that with my relatively young age, my metal capacity and overall fight for life, that a PCH, is not the right place for me. My cries for adequate and innovative solutions have fallen on deaf ears. 

 Less 1-1 staff time then I currently have, confined to the building and surrounded by the old and incapacitated. This would be my new and better life in a PCH? I think not.

At the moment, my life is busy and I have a purpose. With the combination of my mental health being absolutely destroyed, and the staff not being able to leave the PCH with me, life as I know it would be over.    

Till my last breath I’ll continue to push to make myself seen and worthy of care. I was raised to help and see the good in people, when will the government do the same?

The more times I get denied and ignored, the more my determination gas pedal will be floored.

Written by:

Alex Lytwyn