I Hope You Feel Better Too

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!

I'll Never Be Who I Was

Some revelations are so profound that I often have to push them out of my mind. Recently, a family member who pays little attention to me asked me the question everyone asks when they find out I am a musician. "Can you still play?" Sad smiles don't even begin to cover the immense shame and pain that I feel when people ask me this.

I was talking to a gentleman at occupational therapy yesterday who asked me some very pointed questions strangers shouldn't ask someone. But, we're all at hand therapy and a few of us can be kindred spirits. Sure, why not? I answered his questions becuase he clearly had no idea who I was and what I deal with.

I didn't catch his name but we can call him Tom. Tom is an arborist who has severe pesticide and chemical damage to his hands and feet. Tom says "You injured yourself pretty bad there, did you?"

"Um, no it's a bone disease." I do that to cut of curiosity seekers - you all know that the majority of people don't care or show a passing interest.

"It's a what?"

"It's called Kienbock's disease."

"WHAT?" Clearly Tom is not a disinterested person. He thought I was just there after doing something stupid like dropping a concrete block on my hand or something. I mean, I can sympathize because in his line of work you have to be a big risk taker if you deal with pesticides and chemicals constnatly so maybe he thought that he had  a bird of his feathers or something.

So, I sat there and explained to Tom. His face looked crestfallen while I explained what my disease is in short, and how that affects me. He asked me some poignant questions and what I did for work. When I told him I teach music in the evenings he looked like he was going to cry or hold my hand - but his hand and my hand were both in electrode wraps.

I don't normally connect with people. I have a very dangerous past that disallows me the comfort of connecting with people as I am very damaged emotionally. For some reason, this man didn't bother me. Typically it bothers me to talk about myself to just about anyone. I was never able to talk to my mother when she was alive, and forget talking to my dad or my sister and brother. My best friend and I have an understood silenece about ourselves in which we don't need to talk about things - our presnece is just comfort. But, this man was different. I think it was a good thing for me. For once, it was a good thing to connect iwth a person.

It really hurts me that people don't really want to know about you when they ask. It hurts me just as bad when people who you do want to know you, don't want to know you. this was fdifferent somehow.

I'll never be who I was. I'll never play the piano the way I used to when I was 18 and in my prime and a student of one of the best pianists I've ever had the plasure of working with. I'll never play those Chopin Nocturnes my husband loves, and I 'll never perform again publicly or play for church. From our short 10 minute onversation, this man knew that and felt my struggles and pain. He asked me what I'm going to do. I said "What can I do? This is my life. I have to live with it and deal with it." I'll never be that person again. I was never meant to be that person.