Life: X,Y and C

Highly functioning people with disabilities are caught in a trap created by what we have been taught, shown, lead to believe and how we portray our lives because of it.  The hardest part isn't realizing or accepting that, it is leading your life differently going forward.

The term "super crip" emerged within the disabled community in the 1980's.  A person with a disability who appeared to be so far above their disability on the surface: The clean cut athlete, the genius scientist, the parent with a disability.   The modern poster child who never seems to break a sweat or shed a tear unless they want to.   The non disabled world has its heroes, we in the disabled world have our role models--problem solved, regularly scheduled programming may now resume.

Unfortunately, poster children, whether the classic image used to raise money through pity wrapped in awareness or the modern image used to show how "normal" we can all be, is a public relations image.   We, as higher functioning people with disabilities, are taught that nobody really wants to know what is involved to get there, they want to see the end result, know that it is amazing.  Feel pride for us, relief for themselves and be done with it.

So we spend our lives perpetuating that image hoping that it helps us get where we want to be. Knowing the opposite would certainly get us no where.  Such a strategy though is unsustainable.  As with most things in life, the truth has to come out, eventually.   And after years, decades, and perhaps an entire life time of keeping the reality secret, the truth never comes out smoothly.

Early on, I was the master of reassuring hype.  During the second interview for my first job out of college at a local TV station, the ops manager confided in me that there was a worry if, because the company was a start up, they did not offer me a full time permanent position at the end of my initial contract that the parking lot would be full of protesters complete with negative PR.

I wrote an eloquent letter to the hiring committee.  Basically assuring them that I would be the model 22 year old employee with nary a worry or complaint if they would just give me a shot.  Furthermore I disavow any alliance to those "crazy handicapped people".   After I got the job and was acting very 22 in every possible way, quotes from that letter were a popular way to mock me.

In addition to being very 22, there was a clock ticking that only I could hear.  My physical ability clock was moving and moving fast.  I no longer had a gym and pool at my disposal, I no longer had PT, I was regressing in silence.  The harder it got to move around, my brain started to slow down too.  My dexterity started to decline as well.  Typing, video editing, became harder each day.  My fear and frustration mounted, so I was not the most pleasant guy to be around.   When my layoff did come in November, just before Thanksgiving that year, it was a relief.

I went back to work almost instantly, working part time, at a local radio station.  I wasn't doing PT or physical training then either, but I only had to hold it together for a few hours each week.  In the spring of the following year, I was promoted to Ops Manager, full time again.  Within 6 months I was burnt out again and quit on my own.

In fairly short order I got the reputation for being a decent guy, hard working but inconsistent.  Basically a "slacker" with a lot of potential.  Not unlike what was said about me in school for decades, which had its roots, in the same cause.   But it, in my mind, it was better to be know as a slacker than a "sick person".  That I was under performing by choice rather instead of the reality that I couldn't keep up with a typical schedule.   The thought of me asking for something to be adapted to make my life easier was, until very recently, right up there with burning a flag--I'd rather set myself on fire first.

Now, at 45, firmly planted in mid life, not only can I not do this anymore, I really don't want to.  For people on the receiving end though, the reality is overwhelming.  I was on this path before my Dad died in August but feeling my own mortality now, the pace as quickened.  My father was 66 when he died, just 21 years my senior.  His father was 77 when he died, 32 years my senior.  I know how fast those years will click by, I'd like to make the most of them if I can.   In order to do that, the truth must come out.

In order for me to maintain my high level of physical function, in the rage of where I am now, I have to spend, 14 hours a week in physical therapy and physical training.  This isn't for a beach bod or to compete in some kind of sport, this is a bare minimum requirement.  This isn't a social activity that I do with a group of friends because my pace is slow and I need help to navigate around the gym more often than not.   And this is not temporary, this is for life, if I want to have a functional life.   For me, this is the 1 mile walk that your doctor says you should take after dinner or during your lunch hour everyday to maintain a base level of fitness.   And this time commitment doesn't include the follow up doctor visits to keep my insurance carrier happy verifying that I am still disabled.

As I said, once all that is done, I am at my base level.  In addition to that, I have to find time and stamina to work, maintain my household and, hopefully have a social life of some sort.

Everybody has their stuff, I know this.  People work hard and make sacrifices everyday, and certainly there are those who work harder and sacrifice more than me.  More often than not though, their sacrifice has a tangable result or some kind of end date.   They do what they do to run whatever life race that they need to be run.  Marathon or sprint, there is a start and there is a finish.

Kids grow up and graduate from college, Cancer is cured or it kills you, degrees are worked for and eventually conferred, dues are paid, promotions are given.  Good or bad, long or short, there is a start and a finish.  More often than not, an effort and a reward, or at least a goal.

For me, and others like me, we do what we do, simply to get to the starting line.

I have had more than one person suggest that I just use a wheelchair full time to make it easy or move into some kind of care facility to have more of a life.  They say it with genuine care and concern for me but with a level of ease that shocks me.   Makes me feel like when someone once told me that I had it easier than someone who was paralyzed in an accident later in life, because I don't miss what I never had.   Oh, don't I?   (But that is another subject for another time)

When I hear that I think of old western movies when the bandit comes up behind someone, puts a gun to their head and says "your money or your life".  That's how it feels, more often than not.

There are certainly options, strategies and alternatives, but none of them are easy.   For me, I realized after several years of struggling with the same cycle in 9 to 5 jobs, I realized that the only way I might actually have a sustainable work life and home life was to be self employed.  Seven years later, I am still working out the balance between wellness and wealth.  Clients, banks and investors don't care about your commitment to a highly functional life takes, of course, how can they, if, like most of you, have never been told the whole truth.

This is a small start to changing that.

I'm not looking for a medal here or to kick off some kind of pity party.  I'm just peeling back the layers of what I was told and taught to keep to myself.   I'm not angry, I am just tired and lonely.  Wondering if all have done, all the progress I have made, is going to pay off beyond personal satisfaction.  Have I waited too long, will it really make a positive difference?

I've never dared to ask those questions publicly before now, I hope I can handle the answers.