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Wednesday, May 13, 2015

Living With Parkinson’s #6 Bringing the Goat In

Debbie Shapiro, a fun and inspiring woman (and a great writer, too) who just happens to have Parkinson's.

Hashem really does work in amazing ways, and although we sometimes tend to forget it, He really, truly knows what He is doing. Okay, I know this is no chiddush, at least not for Binah readers, but there are times when something happens that brings this idea home.

This year, my son with his amazing wife and beautiful (pooh, pooh) family invited my husband and I for the entire Pesach. On one hand, with so much on my plate and limited energy, the idea of not turning over my kitchen for Yom Tov (and no matter how organized I might be, those 36 hours when everything is topsy-turvy are always much more exhausting than I could ever imagine!) really sounded enticing. Yet, there's something incredibly uplifting about making Pesach. At the end of all that hard work, we really feel as though we are LIVING the exodus. 

Everything is so sparkling clean, and the Pesach kitchen is just, well, so Yomtovdig.
There's nothing like sitting around the table on Chol Hamoed cracking nuts while cracking up with the grandchildren. And of course, what’s Pesach without my special Pesach kugels or the beet preserves that I make each year from a recipe that was handed down through the generations in my mother’s family.

I vacillated between the two options, until finally, at the urging of our children, I decided that this year we really would go away for the entire Pesach.

It was a very good decision.

I'm sure you are all aware of the villager who went to his Rebbe complaining about the crowded conditions in his house. The Rebbe instructed him to bring various animals into his home. A few weeks later, when the Rebbe told him to send the animals away, he suddenly realized that his home was actually spacious. Well, that's how I feel right now. No, my home has always been more than adequate, but if I ever felt overwhelmed from dealing with Parkinson's, now that the proverbial goat has been brought into my home in the form of a different medical crisis, I realize that everything is relative, including health challenges.

Right now, as I write these words, I'm stuck in bed with cellulitis and multiple blood clots in both legs. This is after spending a total of 10 days in the hospital! Less than a month ago I had found it challenging that the balance issues associated with Parkinson's was making my walking difficult. Now, however, it is no longer difficult; it is downright impossible.
I can barely hobble to the bathroom.

Exercise, especially dancing, is out of the question.

My home has been turned into a miniature hospital, with intravenous antibiotics and an entire staff of nurses and modern day blood suckers (you know, the fellow guys who stick that needle into the arm to draw blood) to take care of me. And my poor husband, who faints at just the thought of blood and becomes nauseous from the smell of antiseptic, has taken on the role of an amateur nurse replete with the sterile pads and syringes necessary to hook me up to the intravenous antibiotic drip several times a day.

By the time you read this, Pesach will be long gone, and hopefully this whole painful nightmare will have become nothing more than a vague memory, but for me, technically at least, it is presently the day before bedikas chametz.  A few minutes ago I looked out the window to the very large parking lot and adjacent playground underneath my apartment. Surrounded by four large buildings, each with over 80 families, the area is always brimming with life.  Today, however, there are even more people than usual, and they all seem to be in a mad rush, somewhat like a film in fast motion. While the world is hectically racing against the clock, trying to somehow complete the endless number of things that absolutely must get done before the bedikas chametz deadline, I am relaxing in bed, reading books, or, when I have the energy to sit up, writing articles and responding to emails.

The crazy thing is that I actually miss being part of the Erev Pesach race. I have a deep desire to scrub the kitchen sink and start cooking! And to add insult to injury, this morning I received an email from a friend saying that knowing me, my entire Yom Tov is most probably in the freezer and I'm sitting on the sofa, relaxing with the Binah. Hah! 

My head is foggy from the combination of pain, pain killers and massive antibiotics. This is definitely NOT how I envisioned spending Erev Yom Tov. I keep on reminding myself that if, despite my doing whatever is necessary to try and make the situation better, this is the way it is, then this is the what Hashem wants for me, and it’s obviously the best thing for me. And of course what better way to remind myself of that truth than by writing an article about it. Hopefully, some of my words of bitachon will actually rub off on me!
*                *  *

One of the great things about writing is that you can put an article aside for a few days and then continue at a later date, which is exactly what I’m doing now. So although you’re most probably busy with the blintzes and cheesecakes, I’m still finishing up the last of my Pesach laundry and sending grandchildren to the stores to restock my pantry. And yes, I am still spending most of my time either sitting or in bed, with my legs elevated, trying to curb my desire to get up and DO something.

Pesach was wonderful, although very different from what I had expected. Our son and daughter-in-law were (and still are!) the greatest. They treated my husband and I like royalty. During the eight days of Yom Tov, my every need was taken care of, so all I had to do was lounge on the sofa and enjoy being part of a busy and noisy household. And since my daughter-in-law had arranged for us to to stay in a neighbor’s empty apartment, when things got to hectic for me, I could just close the door and savor the quiet.

These last few weeks have been an incredible learning experience. One of the first things I am discovering is that when you are not feeling well, you need to look as though you are very ill, at least when you go to the doctor, otherwise you will not be taken seriously. The morning after I returned home from the hospital, a visiting nurse came to my house to assess if I was eligible for home care. After speaking with me for half an hour, she looked me straight in the eye and said, “You’re problem is that you look too healthy. You’re sitting on the sofa, dressed nicely and smiling brightly while telling me that the pain is so intense that you can’t put your leg down.  If I hadn’t examined the leg and read your discharge papers, I would have never guessed that anything’s the matter with you. You have to learn to moan a little.”

Talk about challenges (sob, sob)!

The other thing that I’ve been reminded about from this entire experience is how quickly things can change. One morning, I was literally dancing and feeling on top of the world, and had the next three weeks all planned out in my head. That same night, I was so sick that I couldn’t even stand up without fainting, and, of course, by the following day all thought of those well-thought out plans had flown out the window. I had been feeling so smug about sticking to my exercise regime and was finally beginning to see the results of all my hard work – in addition to losing 10 pounds, my walking had actually improved, at least most of the time, and I was shaking less. But now I’m back to step one, or, to be more accurate, minus step one. Being immobile has exacerbated my Parkinson’s symptoms.  Once again I am reminded that our duty is to do our utmost, yet understand that we are not responsible for the ultimate outcome.

So (kvetch) I’ll finish off this week’s column (moan) with another insight. Life is full of challenges (oy), so we should never feel smug about our accomplishments. One little naughty germ can topple a million dreams. But then again, when the going gets rough, and things seem down, there’s only one way to go – up (but don’t forget to kvetch a bit well you’re scaling the new heights!).  

Or as my good friend Chavie always says, “Oy veys mir, NISHT.”

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