Living with Parkinson’s 7 - Tough Questions

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

A few weeks ago, I asked readers coping with a neurological disorder to share their challenges. The following letter I received brought me to tears.

 Hi Debbie,

I’m so grateful for your new series, though I’m sorry to hear about your situation. I have recently been diagnosed with the early stages of Alzheimer’s. Although it is very different from Parkinson’s, I think the one thing it has in common is the degenerative aspect. I am 63 years young and used to be a real go-getter. I’ve slowed down a lot and it has made me be so angry.  It’s not anger at any particular person or Hashem, but feel more like I want to throw a temper tantrum at life in general. You seem so accepting of your diagnosis. Is that really the case? Are you never angry?

 Also, I have begun to have so many fears about the future. I’m worried about being a burden on my family (much as I know they love me) and frankly, I’m not ready to die yet.

 Unlike you, I’m too ashamed to write my name, but I allow you to print my letter as I really need your chizuk and look forward to hearing your response.

Dear Anonymous,

As I read your letter, I remembered something that happened to me over twenty years ago.  I was lying in the recovery room following an emergency C-section when the nurse, accompanied by a doctor, informed me that my baby had died. The pain was overwhelming. I was drowning in a searing sense of loss, and it was compounded by the fact that, due to medical complications, this baby's death signaled the end of my child-bearing years. As the tears flowed, I had a strange sense of cognitive dissonance.  I knew that my child had accomplished her tikkun, I knew that I had had the zechus of enabling her to do so, I knew that there was a reason that I had to go through all of this.

Yet this knowledge did not mitigate the pain. I was in emotional agony, grieving for both the loss of my baby and for the loss of my ability to have more children. 

We grieve over a loss – any loss – including loss of our health and cognitive abilities. I feel pretentious even discussing what I'm going through in dealing with my Parkinson's, as Alzheimer's is a totally different ballgame. You ask if I was accepting of my diagnoses, and the answer is that it took a while until I was able to even say the P word! Even though it was clear to both my husband and I that I was having neurological difficulties that pointed to Parkinson's, I waited over six months until I was emotionally ready to make an appointment with a neurologist. During those months several times my husband gently suggested that I see a Parkinson's specialist, but each time I countered, "I will when I'm ready." Even though I intuitively knew what wrong, I couldn't face the finality of hearing the words, "You have Parkinson's." 

I'll let you in on a little secret: there are aspects of Parkinson's that terrify me. Parkinson's is often associated with dementia. It can be a side effect of the pills that are given to lessen the dyskinesia, and dyskinesia is a side effect of the pills that are given to relieve the symptoms of Parkinson's (Chad Gadya, Chad Gadya…), while at other times it’s part of the disease itself. In addition, people with Parkinson's often lack facial expression, causing them to have a "blank look," which makes them appear to be lacking in intelligence.

However, since by nature I am very pragmatic, and at present I do not yet have to deal with these things, I try to focus on what I CAN do. On a ruchniyus level that means davening, strengthening my emunah and looking for ways to grow spiritually and emotionally through this nisayon, which includes using my experience as a chessed to help others going through a similar challenge. On a derech hatevah level, it means doing my hishtadlus to slow the disease's progression and maintain my health.

Sometimes, however, I am given no choice but to face the monster, and to put it mildly, it is not a pleasant experience. Last week, while waiting to see a doctor (where else?), I got into a conversation with a woman whose husband was in a wheel chair at the far end of the waiting room. His aide was there to take care of his every need, including giving him to drink and wiping away the spittle. I assumed that he had suffered a stroke.

The woman shared that her husband had Parkinson's and then proudly continued, "He founded the Israeli Parkinson's Foundation sixteen years ago." Although outwardly I continued smiling while holding up my end of the conversation, inside I was shaking. This man must have been a real powerhouse, yet today he can barely control his head. I couldn't help but ask myself, "Is this what I’m going to look like in another sixteen years?"

Somehow I found the courage to walk over to him to thank him for what he had done for the Israeli Parkinson's community, explaining that since I have Parkinson's, I am one of the beneficiaries of his chessed. He broke out in a lopsided grin and then, with slow and slurred speech, asked me what I'm doing for my PD. I responded that I'm taking minimal medication combined with lots of exercise .  "That's great. You're doing the right thing," he said, but then added, "But in the end, nothing really helps."

When I came home, I was NOT in a good mood. I would probably call it anger, although I wasn't angry at anyone or anything (it’s a good thing I didn't break any dishes!) So yes, I guess you could say that I'm normal, at least most of the time, and normal people do get angry and upset. 

It's frightening to think about the world continuing on without us there trying to control it, but that is reality. I have so much more that I want to accomplish, so much more living to do, so, in a way, knowing that my time is limited (which, of course, it is for all of us, but we tend to forget that) impels me to try, despite the slowness and exhaustion, to grab more of those things that are important, as well as find a way to convey to my family the precious things that I want them to remember, including an ethical will and a family history. Being aware that I need to do this as the clock is running out (for all of us.) is a chessed, a bitter chessed, but still a chessed.

 We don't understand why Hashem put us in This World, what we have to contribute, or what is our tikkun. But what we do know is that the things we have to go through, however difficult they may be, are the tools that enable us to complete our task and accomplish our tikkun.

But then again, there is a huge gap, for me, at least, between understanding that this is darchei Hashem and bringing that realization to an emotional level, which, I would imagine, is our main avodah at this point.

B'hatzlachah and a refuah sheleimah b'toch kol cholei Am Yisrael,

Debbie.