The Chains We Wear

April is Parkinson’s Awareness Month, and World Parkinson’s Day is April 11 this year. It’s my eighth year with an official diagnosis of early-onset Parkinson’s disease, but roughly my 23rd year with the disease.

During those eight (or twenty-three) years, I and those like me have climbed out of bed on the order of 2,900 (or 8,400) times and tried to do something good with our lives.  Every month is Parkinson’s Awareness Month for those of us battling the disease, and for our friends and loved ones.  We don’t need a special month or day to be aware of the disease – we have no choice.

Consequently, I prefer to think of April as Parkinson’s Action Month. I mean no disrespect to the founders of Parkinson’s Awareness Month (and I tried to find out who founded it and when the first one was, so I could be more specific), but my opinion is that simple awareness is just an opportunity for a false sense of accomplishment.  Awareness by itself is valueless, except possibly as a salve to the conscience of the person being aware, unless it’s followed by action.  There are a lot of diseases out there that demand attention, though, and only so much capacity, money, and resources to go around.

Parkinson’s is not a fatal disease. It is progressive, degenerative, and incurable, however, and the degeneration it causes generally means our end of days comes from some related factor. Sometimes it’s pneumonia, brought about by aspiration of food due to swallowing difficulties; sometimes it’s malnutrition and general systemic failure brought about by the same swallowing problems.  Sometimes it’s head injury or complications from broken bones caused by falls.  Sometimes it’s the complications of slow gastric motility (I know it’s unpleasant to consider, but constipation can actually kill you).   Unfortunately, sometimes it’s brought about by the cognitive and emotional degeneration the disease causes (apathy and depression can be killers, too). Those of us who deal with the disease every day know these things, but we don’t dwell on them, by and large.  Life itself is invariably fatal, and everyone on earth has an invisible alarm clock hanging around their neck.  No one knows when their alarm will ring, but ring it will.  It is simply the human condition. How’s that for awareness?

Simple awareness is not only valueless, it can be actively harmful.  I am aware of my own mortality.  If I thought that the measure of my life was based only on longevity and the avoidance of discomfort, I think I’d be a little concerned. Parkinson’s is not pretty – it can cause discomfort and distress, and both physical and emotional suffering.  I am aware of all of this, and I choose not to stop with awareness.  For my own survival, I choose to move past awareness to action.

Parkinson’s disease is particularly insidious because it tries to steal our will to act, and replace it with despair, depression, immobility and inaction. We fight it every day, and most days we win.  On the days we don’t, we have to resolve to win the next day.  So how do we win when every day is a new fight?

People with Parkinson’s are the bravest people I know. Waking up every day to join in battle with the same foe that put you to bed exhausted the night before is not only brave, it’s damn near heroic. But, everyone fights something.  It’s helpful for me to remember that my struggle is no more imposing or difficult than anyone else’s just because it’s mine.  The world is full of heroic people.  A combat-wounded veteran who has to put on his legs before he can get out of bed is heroic.  A single mother working two jobs, spending almost everything on child care, rent, and food, and still managing to put three kids through college is heroic. A teenager living in poverty who manages to avoid gangs, drugs, and violence and make it through medical school is heroic. Anyone, ANYONE, who faces fear and does the right things anyway, shows heroism and courage.

What are the right things? That’s the rub, isn’t it?  I have a friend who likes to say, “I’d love to do the right thing, if I could just figure out what it was.” I’m full of opinions (or something – maybe it’s something else, and I just THINK it’s opinion; you’re free to judge), so I’ll give you a short list of what I think the right things are.  I think they apply to both living with PD, and everything else; I never claimed to be humble.

  1. Acknowledge that you’re not in control of everything.  There’s ample evidence it’s true – you might as well bow to it. It’s a bit liberating to realize that you don’t get to call all the shots. I do this by believing that God exists and that the world we live in ultimately makes sense, even if I can’t see it and don’t understand it, but that’s me.
  2. Acknowledge that, even without control, you have the power to choose.  You can’t always choose your circumstances, but you can ALWAYS choose your responses and your attitude.  Don’t squander your ability to choose, but don’t wring your hands about the outcome of your choices if they’re not what you want – just choose again.
  3. Be guided by the highest principles you can muster when you make your choices.  For me – God again, and the Golden Rule.  Hate and selfishness are bad bases for principle – I’d suggest avoiding them.
  4. Overcome your fears and act.  Everyone is afraid.  The ones that pretend they’re not are usually the most petrified. Act anyway.  Nothing good ever happens without action.

Get off your butt and act.  Take control where you can.  Exercise.  Learn something new.  Water the plants naked at 3 AM.  Join Toastmasters and overcome your fear of public speaking.  Write a book. Walk the cat (let me know how you accomplished this if it works out).  Learn to play the kazoo. Teach calculus to teenagers. Sing in the grocery store.  Call him/her and say you’re sorry. If you love your friends, tell them.  If you don’t love your friends, find new friends.

Life is precious, with or without PD.  Don’t just be aware – act, with a full heart and the expectation of success.  And if you don’t like what happens, choose again.  And act.

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