Prime years wasted!

There’s a part of my life that very few people get to see. Usually when someone sees or talks to me, I am advocating, working or saying a smart-ass comment. Something that never gets seen by the general public, is how aging plays a major role in the state of my wellbeing.

When dealing with a physical disability, the muscles and body work against each other to the point where it’s a constant battle. As I get older, the pain is with me 24/7, it doesn’t help that anything I do is 10x more difficult than it is for the average person.  From getting dressed to typing to even something as simple as taking a breath, life can be exhausting.

Naturally things take longer for my staff and I to accomplish. This forces me to rush tasks that in the so-called normal world would take time.  This puts pressure on me as well as the person helping me. Say I have help for a two-hour time slot and I need to use the washroom and have a shower.  This could take over an hour start to finish.  What if I have to have a meal at this time as well?  The time can go by very quickly, so usually I have to go without.

This is just average day to day tasks, add on top of that being a business owner, hockey coach, writer, advocate, and also sitting on many different committees, my days are full.   So how the heck do I fit in my future, the present and just basic of life’s tasks? With great concentration and effort. 

The scary thing is, in someways I feel like my life is just getting started and I am not being allowed to live it.

Physically yeah life is difficult and I am not getting any extra help; however, this is not the only thing that aging does to me. Mentally, when you have a disability life can mess with a person.  Looking around, see my family and friends, expand their life, hurts.

I wish I could just live life and go with the flow, instead of having to plan out every minute of my day.  It would be so nice to have a regular job and save up for retirement. To just be able to dream about the future. What most do not realize is, as I get older, I am losing control of life.  As age grabs me and squeezes me every day, it’s up to me what comes out.  Is it determination or procrastination?

I understand my life will never be the same as other individuals, but I should have the same chance to succeed. All I want to do is show society, that anything can be overcome. A person must keep pushing to achieve a goal. When I keep pushing for more help to live a better life, I often get this response, “if you need more help, why don’t you ask your friends and family?”  My parents are older now and simply cannot help me like they used to. My brothers have moved away and started their own families.  When it comes to friends, they are just that, friends.  I mean there’s a very fine line between caregiver and friend.  If I have company over or go out with buddies, I just want to have a good time and not have to ask them for “personal” help.

I could let life pass me by but instead, I raise awareness about all aspects of living with a complex disability.

People often ask me ‘how can I help?’ To this I say, “share my articles anyway you can.”  Together, we have the ability to make change.