This is a reprint of a blog post I wrote for the Northwest Parkinson's Disease Foundation.
One of the biggest drawbacks of Parkinson’s Disease is
the terrible potential it has to isolate an individual. Getting out of
the house, engaging with the World is one of the things that make us
human. Shut yourself away from the ebb and flow of human affairs, and
your time here on Earth will likely be shorter, and more miserable than
it otherwise would have been. Though it will seem longer, by far.
Studies have found that social interaction lessens depression, a common problem associated with Parkinson’s, and that interactions with family and friends increase mental stimulation. These, are well-recognized factors in their importance in coping with PD.
Unfortunately, in yet another sample of the thorough and twisted logic of Parkinson’s, the disease and its many symptoms work against our healthy impulses to go out in public.
It’s hard to get out for physical reasons alone. We have difficulty moving, which is just the first barrier we must overcome. Then we have our inability to speak loudly and clearly. This can isolate a person effectively even if they do go out. It is demoralizing to attempt to contribute to a conversation, only to be ignored because you can’t muster the volume to get the attention of others. Further, we may be embarrassed by a tremor, or by drooling. And the mental image of parading your shuffling gait in front of an audience, or gyrating wildly as you careen around a restaurant like a drunk, attempting to maintain your balance, is a serious deterrent to going out.
And then there is all the extra paraphernalia to wrangle, like canes or walkers, and God forbid you forget the pills that now must accompany you wherever you go.
But the biggest thing we have to carry out there is our vulnerability. The fact that we are sick and cannot hide it makes us uncomfortable, partly because it makes the rest of humanity uncomfortable. How? The fact is that if we are vulnerable, so is anyone, and everyone. Why else did Rush Limbaugh famously mock Michael J. Fox? Because Limbaugh is afraid. To belittle Fox is to minimize him as a threat, to put him in a different category, to deny his vulnerability is a shared vulnerability.
The uncomfortable truth is, we all do share that vulnerability. To defer to it by hiding ourselves away not only cuts us off from the rest of humanity, it cuts the rest of humanity off from us, and from the brutal reality that we represent. We are an important reminder to the rest of the race that all are subject to the whims of fortune. Until we can cure this disease, it can and will continue to mysteriously cut individuals out for suffering that carries no explanation or justification.
Humanity is in a position to do something about that. A cure can be found. It is just a matter of time and priorities. As long as the stricken lay low, we make it easier for the rest of the World to ignore our plight. By enabling others to ignore the disease, we come dangerously close to collaborating with it. Because as long as it is ignored, it will continue to claim more sufferers, slowly wring the joy from their lives, and extinguish them.
Your disease has been making you uncomfortable (to say the least!) long enough. Time to let it make someone else uncomfortable. Don’t go out for your benefit, much as it will benefit you. Do it for the rest of humanity. Do it for Rush.
Studies have found that social interaction lessens depression, a common problem associated with Parkinson’s, and that interactions with family and friends increase mental stimulation. These, are well-recognized factors in their importance in coping with PD.
Unfortunately, in yet another sample of the thorough and twisted logic of Parkinson’s, the disease and its many symptoms work against our healthy impulses to go out in public.
It’s hard to get out for physical reasons alone. We have difficulty moving, which is just the first barrier we must overcome. Then we have our inability to speak loudly and clearly. This can isolate a person effectively even if they do go out. It is demoralizing to attempt to contribute to a conversation, only to be ignored because you can’t muster the volume to get the attention of others. Further, we may be embarrassed by a tremor, or by drooling. And the mental image of parading your shuffling gait in front of an audience, or gyrating wildly as you careen around a restaurant like a drunk, attempting to maintain your balance, is a serious deterrent to going out.
And then there is all the extra paraphernalia to wrangle, like canes or walkers, and God forbid you forget the pills that now must accompany you wherever you go.
But the biggest thing we have to carry out there is our vulnerability. The fact that we are sick and cannot hide it makes us uncomfortable, partly because it makes the rest of humanity uncomfortable. How? The fact is that if we are vulnerable, so is anyone, and everyone. Why else did Rush Limbaugh famously mock Michael J. Fox? Because Limbaugh is afraid. To belittle Fox is to minimize him as a threat, to put him in a different category, to deny his vulnerability is a shared vulnerability.
The uncomfortable truth is, we all do share that vulnerability. To defer to it by hiding ourselves away not only cuts us off from the rest of humanity, it cuts the rest of humanity off from us, and from the brutal reality that we represent. We are an important reminder to the rest of the race that all are subject to the whims of fortune. Until we can cure this disease, it can and will continue to mysteriously cut individuals out for suffering that carries no explanation or justification.
Humanity is in a position to do something about that. A cure can be found. It is just a matter of time and priorities. As long as the stricken lay low, we make it easier for the rest of the World to ignore our plight. By enabling others to ignore the disease, we come dangerously close to collaborating with it. Because as long as it is ignored, it will continue to claim more sufferers, slowly wring the joy from their lives, and extinguish them.
Your disease has been making you uncomfortable (to say the least!) long enough. Time to let it make someone else uncomfortable. Don’t go out for your benefit, much as it will benefit you. Do it for the rest of humanity. Do it for Rush.
3 comments:
This is a 'must' read.
Very well written. Thank you for your thoughts.
I found these words to be so true. If you can, be there to support a friend, neighbour or relative with Parkinson' disease. Help them by taking them out shopping, to the movies, out to lunch or join them in some gentle exercise. We are still the same inside although we may look a little different, everyone needs to know that they are special and cared about.
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