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Wednesday, June 3, 2015

Living With Parkinson's #9 To Tell or Not to Tell (Only Her Neurologist Knows For Sure…)

Writing this series has given me an opportunity to get to know, via email and phone calls, other women living with Parkinson's. I never cease to be amazed by these incredible nashim tzidkaniyos who continue to be positive and function as wives, mothers, and yes, even professionals, while coping with a debilitating medical challenge. I've also been exposed to outlooks and ways of coping that are very different from my own, yet totally legitimate, for just as Parkinson's manifests itself differently — for some, the first signs are tremors, for others, it's walking issues, or problems with balance, a dragging foot, or difficulty with fine motor tasks — each woman has her own unique way of dealing with the disease.
I'd like to share with you an exchange of emails and phone calls that I had with a lovely woman who decided to keep her diagnosis a secret. I am sharing this with you after receiving permission from this reader and minor changes were made to protect the writer's privacy:

Hi! I'm a young(ish) mother with early-onset Parkinson’s and am wondering if we could correspond. I haven't told anyone about this (even my children don't know) and it is sometimes very difficult not to talk about what I'm going through.

From a, baruch Hashem, coping (although a bit tired) mother

My response:

Dear Coping but Tired Mother,

It would be my absolute pleasure. I would also be interested in organizing a telephone support group.

Waiting to hear from you,


Her response:

Dear Debbie,

I would like to ask a few questions. How did your children react when you told them about your condition? I'm afraid that mine will become hysterical. And since none of my children are married my oldest will be coming out of the freezer this summer while my second is graduating sem I'm worried about shidduchim.  Other than my husband and one or two other people, no one knows about my condition. I admire your incredible courage to put into words the emotions I go through, but at the same time I am worried that people will recognize me through your very moving description of your (our) condition.

A coping (although a bit tired) mother.

Following this above exchange of emails and a very meaningful telephone conversation where we both articulated our struggles, we continued corresponding. Although most of the subsequent emails were private, but I can share the following excerpt from a longer email she sent me:

I always feel strange when I hear people talking about people with Parkinson's saying things like, "Nebech her husband has Parkinson's," or "She's busy looking after her mother who's sick with severe arthritis AND Parkinson's." I just nod dumbly, not daring to say what I really think: "Hey, what's so nebech about it?" Parkinson's can, with Hashem's help, be managed and im yirtzeh Hashem, hopefully there soon will be a cure for it. It's not a tragedy, for heaven’s sake!" But I don't say it; I just feel uncomfortable. I sometimes think that if they would know my secret, they would jump a mile.  After all, you never know, Parkinson's might be contagious....

About the same time as I received the above email, a different reader put me in touch with an Israeli woman, my age (we actually share the same birthday!) who just "happens" to live around the block. She was diagnosed nine years ago, at age 52. Since then, she's married off several children, will be marrying off a daughter before Sukkos, and has a high-school age daughter still living at home.  She is very upfront about her condition; she informed her friends and family about it almost as soon as she was diagnosed and has educated her family about the many different symptoms. When I asked her if this impacted her children's shidduchim, the response was, "Shidduchim are in Hashem's hands, but baruch Hashem my children all found excellent spouses." She did point out, however, that when she started using a cane, her then twelve-year-old daughter was concerned about what her friends would say and was very upset.

A few days later I received a phone call from an amazing woman who, despite her illness, continues to teach half a day. As she explained to me, "At work, no one would dream of what I'm struggling with, of how I return home shaking with exhaustion, barely able to cope. Although my immediate family is aware that I have Parkinson's, I don't want people outside the family to know. I'm afraid that once people would find out, I'll lose my job." 

As you can see from the above three women, there are many different ways of coping with a diagnosis, and all of them are perfectly fine. As for myself, although I had symptoms pointing to Parkinson's, it took me over six months before I was emotionally ready to see a doctor, but once I got over that initial hurdle, I was also ready to tell my family and close friends – although, to tell you the truth, I never considered going public about it. Originally, I planned to write these articles under a pseudonym, but changed my mind after one of the editors convinced me that the impact would be greater if I use my own name. And from the many letters that I have received, she was right. My favorite was from a woman whose thirty-year-old husband has Parkinson's (and yes, Parkinson's is not only for old people, although it is more common in older people – and I hope to write about that in a future article): "My husband never used to read Binah, but now, every Monday morning, he opens up to your article and feels validated and understood! I told my husband, 'You don't get it. She's a famous author, not just a random lady....'"  If my not being a random lady will give chizuk to others, then I am grateful that I am using my real name. (When I showed the email to my husband, his response was, "I would never have just married some random lady," and that, of course, made me feel great!)

But having the world know definitely has its drawbacks. Sometimes, when I'm feeling absolutely wonderful, full of energy, with a youthful spring in my step, I'll meet an acquaintance and the first thing she'll say is, "Debbie," accompanied by a barely audible under-the-breath oy, "How are you? You're looking great. I would never know…amazing!"  And the truth is, when I feel great — and since early-stage Parkinson's has very definite ups and downs, I do often feel perfectly (while, almost perfectly…) fine. I really don't appreciate people asking me how I'm managing, and of course it goes without saying that I never appreciate being the object of anyone's pity. I am managing perfectly fine, thank you (at least most of the time, and that is probably true for most of us), and when I'm not, I'll let someone know. I am not a martyr.

On the other hand, when I am struggling to balance two bags of vegetables while desperately attempting to fill another bag with onions, and someone who knows me offers to hold my groceries while I choose the onions, or when I get on a bus and an acquaintance takes my bus card and hands it to the driver so that I can quickly get a seat down before the bus starts to whiz around the corner, I am grateful that my condition is no secret.

So the question remains: Should a person disclose that he has a degenerative disease before the symptoms become obvious? I really don't know. I would imagine that whenever one chooses to makes such a revelation, the people we're close to will be shocked and upset. Coping but Tired Mother" wrote, "How did your children react when you told them about your condition? I'm afraid that mine will become hysterical."  I totally related to that, as it was not easy for my immediate family to accept my diagnosis. One daughter cried for hours until eventually she came to accept the fact, but I imagine that would have happened no matter what stage the disclosure.  And as for shidduchim, for me, at least, that is not a deterrent, as we are, baruch Hashem, well past that parashah. 

However, as one woman with a different degenerative disease (who I "met" via email as a result of these articles) pointed out to me, "If Hashem wants to make a miracle, it usually comes when only a few people know." Although I have no doubt to the truth of that statement, I also know that as a result of my being open, many people are davening for my recovery. I am sure that that is having a powerful impact b'Shamayim, so thank you to all those who mention my name in their tefillos.

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