The good news is that it does get better. It’s not the “every day will get a little bit easier” that people like to tell you, but everyday we do get more acclimated, a little smarter on how to do things, and a little stronger. The thing that would break you the day before becomes a more natural fiber of your day the next.
We’ve learned and experienced much in the last few weeks. A few of the biggest eye openers:
The world isn’t flat. When Thomas Friedman wrote the “World Is Flat,” he definitely wasn’t sitting in wheelchair. If he was, it would have likely been retitled “The World Is Riddled with Potholes, Uneven Sidewalks and Unusable Ramps.” For any daredevils out there, forget skydiving. If you want to get your heart racing, trying navigating the sidewalks of Cranford or Westfield in a wheelchair. It’s not for the faint of heart.
Paralysis isn’t misunderstood. It’s not understood at all. I think this partially fuels the first problem. People don’t understand the issues—medical, tactical, emotional which makes it hard to help solve them.
A few of the many myths:
Being paralyzed means you can’t feel anything. While it’s true you often can’t feel touch, heat, etc., you can feel pain, not phantom pain (as people often quickly conclude as soon as they hear this), real pain coming from nerve damage, spasms, etc. Your body has been short circuited. It flares up trying to make a connection that it can’t make and the result is searing pain when the body can’t satisfy the signal.
Paralysis simply means you can’t move. That is just one symptom—the one that people see. There are many and they are serious. They are lumped into a classification of “secondary complications.” For anyone paralyzed these secondary complications are anything but secondary. Managing them becomes the focus of your day because they are serious, and only through never-ending vigilance throughout every hour can they be managed. These secondary complications, not the inability to move, are what will land you in the hospital and take a psychological toll often exceeding that of not being able to walk down the street.
One secondary complication is skin breakdown. Normally the body fidgets, even minutely, constantly. This shifts weight and pressure points on your skin. When you are paralyzed, these ongoing micro-movements don’t happen. The skin on your pressure points breaks down—quickly—and once broken it is very difficult and a long road to heal. A great irony is that paralysis lands you in a wheelchair—and that is the absolute worst place for you to be if you want to avoid skin breakdown. Unfortunately, you need the chair to get out in the world and live your life.
The ultimate end game is to be walk again. While yes, walking again is what any paralyzed person hopes for, it’s still just a means to another end of gaining what has been lost—all the life experiences that have been taken from you. The intrinsic human experiences that most of take for granted. For some this might be holding their child. For others it might be the ability to stand at the stove and cook a meal for their family. The experiences lost aren’t a handful, they are many.
Last week we took the kids to the pool. They wanted daddy to come and we are grateful he was able to. When we got there, they waved to daddy and show them how much better their swimming had gotten this summer. But it was still bittersweet. Past years it was Dennis in the pool teaching them to swim. This summer he can’t. If given the choice between being able to be hands on teach the kids how to swim, ride a bike, play soccer, etc. versus simply walk again, Dennis would unequivocally jump at the first. There are experiences that each person misses that far exceed the actual walking—it’s what that ability affords for in life moments.
Lastly, I spend a lot of time playing charades—actual charades—trying to have people visualize why something they are suggesting to me as solution for one of the challenges we face isn’t feasible. When I try to explain to someone why an “accessibility solution” they are offering to make something work for Dennis and our family won’t actually work, they tend to look at me like they are trying to patient with me because they are thinking what they are offering should work. The reality is that what looks okay on paper often doesn’t works in practice. People are especially surprised when they are following “accessibility guidelines.” Another myth to debunk –these guidelines are band aids at best and often don’t accommodate someone in a wheelchair.
For example, we moved into a handicap accessible building as we prepare to renovate our home. Last week I realized that I had been with Dennis each time we left or returned to our building and that I had always opened the door for him. It dawned on me that the way the door was designed, there would be no way he would be able to open it on his own—the angle would be too awkward for him to be able to lean forward, try and pull or push it open.
I made the request to the building to adjust the door, explaining why the current door wouldn’t work. They were confused. It should work. They did what they were supposed to. They had followed accessibility specs. They tried to show me (standing up) “how Dennis could open the door.” I began doing charades of why that thinking was flawed. “Well, Dennis will be opening it from about this height. You are directly next to the door, he will have a few feet of himself and the chair between him and the door so it’s harder to get leverage the weight of the door…” They were still confused.
When I start recounting this exchange, people start getting upset. “How dare they! They should know better! Aren’t there laws in place to make sure things like this don’t happen!?” But the truth is that the people that run our building really do care. They thought they had done the right thing and followed the design that they needed to. They truly were just dumbfounded that it hadn’t been enough.
It was only later that day when they asked Dennis to come downstairs so a team (!) of people could watch him try to open the door that they understood the flaw in their design and their thinking –and understood it immediately. They are putting in a button to automatically open the door in our building—and future buildings they are constructing. They thanked us for pointing this out to them. They didn’t comprehend that there was shortcoming until they saw someone in a wheelchair trying to use what on paper was handicap accessible.
This episode had a happy ending, but it still makes me sad. I have a lifetime of experience being, ahem, persistent to get what I want. The building management was eager to help us. And it still was so hard—just to put in place a way that my husband could come and go from the building where we live. Most people don’t have these two sides of the equation working for them, which means vast majority of the time the outcome will be less successful.