You
know the movie Happy Gilmore? Of course you do. Do you remember the
"jackass" guy, Donald? "You will not make this putt you
jackass!" I feel like the jackass guy every time someone tells
me that they hope I feel better. I feel like a snarky comeback is what they
deserve. But I don't. Usually I give them a disinterested half-smile and just
ignore that they said that.
One
time, in Germany, the woman I shared a hospital room with had a short
conversation with me before she left the hospital. I was VERY depressed - like
I have been almost every day since finding out about my disease. This woman was
wishing me farewell, and told me to feel better soon. It was aggravating. It's
about as annoying as someone telling a cancer patient that they hope they feel
better. I think a cancer patient (having known several) would rather hear
"I hope you kick cancer's ass!"
My
disease is not a curable one. It is one that can be maintained, yes. The people
who find out in the earliest stages of the disease are incredibly rare - and
therefore extremely lucky. Their chances at maintaining the disease are a lot
higher. They may never have pain again in their life. The reported population
of the USA in 2014 was almost 319 million people. Of course, when you think
about the roughly 150K people in the USA that have the disease, and probably
half of them know it, the chances of someone being diagnosed early is about as
rare as having a set of quintuplets naturally. (Which BTW, was reported by the
NOMTC in 2011 as only 41 total in the USA. http://www.nomotc.org/). So
think about that for a minute. If 75,000 people in the USA know they have
Kienbock's disease, and only a fraction of them have been reported in the earliest
stages of the disease (Stage I/II), we're talking like maybe 10-20 people tops,
at any given time. Fractions of fractions equate miniscule percentages.
Why?
Kienbock's is so rare, that doctors don't know about it, and don't know to look
for it. It is commonly misdiagnosed for years or lifetimes. Less than 1/2% of
the population has the disease. Think on that. That is a tiny number of people.
The size of a small city like the size of Peoria, AZ or Irvine, CA.
Of
course, not everyone understands this. They think that like cancer, Kienbock's
can be fought. Well, sort of. It can be slowed down, maintained, or stagnated.
People who are rare and lucky enough to have early detection will encounter
this easily. They may have minor procedures or splinting/casting, and then
they're good for most of their lives. But people like me are not so lucky.
People
like me live in constant pain, fear and danger. Something as simple as turning
the handle on something could break a bone or cause a major interference.
Driving is a nightmare; I do it one handed mostly. I have to wear my big bulky
cast to do it too, and it makes preparation and defensive driving nearly
impossible. I dread anyone ever hitting me while I'm driving the car. If I'm
holding onto the wheel, it could shatter my bones because they are so fragile
and thin from surgeries, calcium deficiency, and sawing them in half.
It's
really quite frustrating that people want to "mean well." I get it, I
really do. I hope that my friend who lost her father recently finds comfort and
peace. It was a tragedy. But, I know she doesn't want to hear that. And I've
been in her shoes. She, like me, wants to hear "That sucks!" Because
it truly does. "I hope you feel better," is a brush off. You don't
matter. Your disease doesn't matter. I'm not really interested in how you are,
but I want to me happy so you be happy.
SMH
Look,
the next time you're around a friend who suffers from MS, cancer, diabetes,
IBS, chronic pain, or anything else ... you tell them what you really think and
feel. Tell them you love them, trash the disease and have a rant-fest, give
them assistance without asking, hug them or hold their hand and be heartfelt.
If you don't care, don't say anything at all because in their heads, their mind
is reeling the same comebacks mine is, and then they will smile at you and nod,
or just say "thanks" because they have nothing nice to say. They'll
make every effort to get out of your presence. They're replaying every moment
in Happy Gilmore where Happy is told he's a jackass and wishing they could hold
your head down in the toilet to give you a swirly.
I hope you feel better too ... you jackass!
