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Wednesday, June 10, 2015

Living with Parkinson's #10 - Getting Rid of the Tight, Pointy Shoes

Okay, folks, I have some earth-shattering news to tell you. I know this will shock you, so please, if you are standing, sit down. I would hate for anyone to get hurt. Are you ready? Okay, so here goes: I am NOT courageous, I am NOT an amazing woman, and, (gulp) I am NOT a tzadekes.

Almost every day, and sometimes several times a day, I get a phone call from a stranger or am stopped on the street by an acquaintance who starts gushing about my articles in Binah. The conversation usually goes something like this, "Debbie, I loooove your writing. It's the first thing I turn to when I get the magazine and it gives me such chizuk." So far, so good. Actually, I am flattered to receive such positive feedback (after all, I DID tell you that I'm not a tzadekes!). But then, almost every time, the conversation continues, "I am amazed at your courage and at how you are so open about what you're going through. You're an incredible woman, a real tzadekes. I.…"

At that point, I feel like screaming, "HEY! Do you honestly think that I chose this? If I had been asked, I can assure you that I would have said, 'No way!' I am NOT courageous. I am simply dealing to the best of my ability with what Hashem gave me." And as for being open and honest about what I'm going through, I'll let you in on a little secret: I only write about universal things, those emotions that are common to people with Parkinson's or anyone facing a physical challenge. Most of us are human, (at least I hope so because if we’re not, well, the opposite of human is inhumane), and I can assure you that I have a long way to go to reach the lofty madreigah of tzadekes. I am still very much a work-in-progress, a real live human being who too often gets upset or even angry. On too many occasions I rush through my davening or bentching, and (gulp) I'll even finish all the ice cream when no one's looking. And on Yom Kippur, I need to klap "al cheit" just like everyone else, because just like all the other people in shul, I have what to do teshuvah for (and that is rather personal, so as curious as you might be, that will remain between me and my Maker).  

I'm dealing with my Parkinson's in the same way that I deal with any new challenge: First I learn everything I can about whatever it is that I have to deal with, which, since I tend to analyze things rather than emotionalize them, is my way of coming to terms with and learning to accept the challenge. Empowered by my knowledge, I do whatever I can on a gashmiyus level to improve the situation. At the same time, I daven and try to improve myself spiritually so that I will become a kli worthy of a true yeshuah. Finally, I work on my emunah, on my confidence in the idea that if despite all my hishtadlus, things don't work out the way I had hoped they would, it's really okay, because there's Someone here in charge, and He certainly knows what is best for me, even if I don’t.

If, for example, I were to suffer from an ingrown toenail (which I don't), I would read anything I could on the underlying causes of ingrown toenails (IT for short), various methods to deal with IT, including researching possible cures, practical advice for coping with the symptoms, and measures to prevent IT from reoccurring. I would contact the Fictional Association of People with Ingrown Toenails (FAPIT for short) to hear what they suggest, as well as the Imaginary Foundation for Ingrown Toenail Research (IFITR) to read about the latest results of medical research. I would also try to find the nearest chapter of SSIT (Silent Sufferers of Ingrown Toenails, who thanks to their very popular support groups are no longer silent about their suffering) to connect with local PWITs (People With Ingrown Toenails) and see if there are any activities in my area that might educate me or provide me with skills to cope with ITs. And if I was really brave, I might even consider joining WAIT (Women Against Ingrown Toenails) to lobby for laws to be passed against the shoe manufacturers who produce shoes that cause ITs.

Then, when I would go to the podiatrist for treatment, I would be able to ask educated questions about how to care for my toes. And I would have sufficient knowledge to know that even if he doesn't mention it (and he probably won't, as there's only so much that a doctor, or podiatrist, can say in a fifteen-minute appointment) I would throw away all my tight, pointy shoes and make sure to cut my toenails properly.

On the ruchniyus side I would ask close friends and family to daven that my IT be miraculously cured. I would attend to shiurim to develop my emunah and bitachon so that I could accept the IT challenge in a way befitting a true bas Yisrael. And of course, I would turn to Hashem to ask Him for a refuah shleimah while trying to become the type of woman who deserves to be able to walk on two healthy IT-less feet.

And then, if, after doing everything possible to get rid of my IT, if it would be resistant to all treatment and become a permanent painful feature (known as a RITS, or Resistant Ingrown Toenail Syndrome), I would be content in knowing that had done my utmost to remain IT free, and that this is what Hashem has planned for me.

But not everyone deals with challenges in the same that that I do (and I'll admit, I am somewhat obsessive in my hishtadlus), and that's perfectly legitimate. Plenty of people prefer to blindly follow their doctor's advice without empowering themselves with the knowledge to ask educated questions. They need to understand, however, that they might inadvertently continue wearing tight, pointy shoes, never realizing that that was the underlying cause of their problem. As for being open about my condition, let's just say that I'm basically a coward who is in need of as much chizuk as she can get!

Here in Yerushalayim, and I have heard that it is the same in most other places, neurologist appointments are scheduled at three-month intervals. Between appointments, if I have any questions about symptoms (is this really normal?), there is no one to ask. And as for turning to one's general practitioner, most have very limited experience with Parkinson’s (I'm my doctor's only PD patient!). 
So where do I turn when I have a question, be it about my symptoms or my medication? One amazing source of information is the PDF (Parkinson’s Disease Foundation)  Hotline (phone: 800- 457-6676 email: info@pdf.org). Their team of information specialists answer questions about Parkinson's disease, symptoms, treatments, complementary and alternative therapies as well as provide information on the latest scientific studies. Personally, I was, and continue to be, impressed at how the information specialists at the PDF respond with a unique combination of empathy and professionalism. Each time I have called them, my inquiry was followed up with an email providing additional information, phone numbers and links of helpful resources in the community and, when applicable, an informational webinar providing in-depth information relating to my question.

And when you do call them, you have my permission to let them know that you got their number from the nudnik in Jerusalem.

Well, at least I'm an educated nudnik.    

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