Dennis
has been home from Kessler rehab for a few weeks now. We were warned by
many that the hardest days after being paralyzed aren’t when you get
the diagnosis, it’s those first days home. This rang true. It’s when you
are ejected from the bubble of people caring and catering to you, and
returned to a world that you once walked through with ease, that you
realize that you are now living in world that is not built for you.
There are band aids here and there to try and make things a bit easier,
but overall you are now an outsider, an instant minority, you need to
find your own workarounds for almost everything, because no one else is
going to do it for you.
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.
When
I pray it’s always for hope, strength and healing. But understanding
needs to be added to that list. I do believe that people want to do the
right thing. They want to assure the best quality of life possible not
only for Dennis, but other people also suffering from paralysis and
other handicaps. They just don’t understand the full extent of the
challenges and the solutions needed to make this possible.
