Inspiring you to live well with Parkinson's disease
As I laid down with my youngest daughter tonight, as I usually do while she drifts off to sleep, she looked at me and asked in a tired but inquisitive voice, “Were you born with Parkinson’s”. “Well, it’s a little complicated…” I began. This is just one of many questions I’ve fielded from my girls over the years. “Does your medicine make you feel better?” “How can you swallow so many pills?” “Mama, why are you limping? Did you hurt your foot? ” “Why can’t they find something to make you better?” And my favorite “If I hold your hand forever, will it stop shaking?”
I still marvel at the matter-of-fact nature of the conversations we have about Parkinson’s and the comfortable manner in which our girls discuss this disease. It’s exactly the way I had hoped my Parkinson’s would be perceived by my daughters – as a part of life’s challenges that can be dealt with, not as a frightening life stressor. Children these days are having enough difficulty navigating the world, dealing with school, peer groups, hormones and so on and the last thing I ever wanted was to add to their burden.
Let’s face it, this disease doesn’t just affect us, it inevitably affects our whole family unit and that includes those especially vulnerable, our children. Not sheltered from the reality of this disease, many children observe the challenges grandparents, other relatives and sometimes (as in my case) their own parent faces. This can be said for any chronic disease. Bearing witness to these changes if not explained, can lead to a normal fear of the unknown and anxiety.
Even though we never wanted this disease to dominate their lives, Parkinson’s has always been a part of my daughters’ experience. I was diagnosed before any of them were born so for them, Mama has always been shaky at times. She’s always needed her medicine. Sometimes she’s good at coloring pictures or polishing their nails and sometimes not so much. Sometimes she needs a bit of time before she can do an activity, sometimes she can jump right in.
That has been and is their reality. The only difference is that in the last couple of years my title of “shaky Mom” has graduated to “Mom with Parkinson’s”. (Truthfully I’ve always been “Mama”, plain and simple.) The decision to actually put a name on my illness and to disclose more detailed information on the disease unfolded quite naturally at a time that we felt our girls were ready to learn more and when they were becoming more inquisitive. They reached a point where they began to ask for details!
So a couple of years ago, we were having a family discussion about the Michael J. Fox Foundation charity event in New York that my husband and I had just returned from. We asked the girls, “So do you know why we attend all these Parkinson’s events?” My oldest, Sarika, had no clue (she always loves that I point this fact out!) but my 10-year-old Neha, said, “Because you have Parkinson’s.” which floored us, because we never discussed it. But she’s so intuitive (and listens to whatever is being said whether directed to her or not) and I guess she put two and two together. Then they all said “Mama, we’re going to start giving our allowances to The Michael J. Fox Foundation for Parkinson’s Research because we want you to be better.” Somehow I held it together, we hugged and it was a really amazing moment. This discussion them opened the door to educating them more about the disease itself and further opened communication about how our family was going to approach this challenge together.
That was in essence, how we chose to disclose my diagnosis of Parkinson’s with our girls, a slow evolution. Of course, every family is different. The age of your children and their level of understanding will guide you in terms of when, how much and what to disclose. There are some other general guidelines to consider when having this conversation.
1) Be honest in your disclosure because children are extremely intuitive. They often sense there is something wrong and the stories they make up in their head are probably much worse than what the reality is. It makes a child much more uncomfortable if they feel a parent is hiding something from them.
2) Use words that are directed towards their education level. Try to limit the complexity of your explanations but do try and educate them about some of the more common technical terms. Take into consideration their age and maturity level when deciding what information to share with them.
3) Always express hope. Children are remarkably resilient and their perspective is usually far more optimistic than our own. Honor that optimism. We could learn from them because truthfully, every situation does have a positive perspective. Make that your main focus even if you sometimes don’t feel that way. I’m not advocating dishonesty. My girls know that at times I don’t feel well or I’m in pain but they also know that overall I’m coping and that I have not succumbed in spirit. They rely on my reassurances that I will take the necessary steps that are needed to feel better, emotionally or physically. In fact I have found that in reassuring them, I invariably reassure myself.
4) Empower them. Having a loved one with a chronic illness is a lot for a child to handle and sometimes they can start to feel helpless especially when like this, it’s something that’s not within their control. But by giving them concrete ways to help out, be it with daily tasks such as housework or more proactive activities such as fundraising, they feel more empowered.
So how did our family reach a certain level of peace with this issue? It is in part due to heeding the above points I mentioned but also in large part due to the way in which we relayed the appropriate information. We recognized very early on that in most cases the reaction of our daughters was really dependent on our own. We have all seen young toddlers look at their parents when they first fall down or bump themselves. If the parent panics, then the child will inevitably cry but if it’s not too bad of a bump and the adult reacts in a very matter of fact way, they will often just pick themselves up and toddle on. A child’s resilience is a true virtue. This is the general manner in which we approached this our discussions with our girls and the everyday challenges that present themselves. Because we don’t act distressed, that gives them a sense of security and allows their natural optimism to guide their emotions. It seems to have worked so far.
As I now look at my sleeping beauty I feel a deep sense of gratitude that this potentially stressful process has taught my girls such valuable life lessons in empathy, compassion, charity and kindness. It has also taught them what took me decades to learn - that life has its challenges and it is how you approach those challenges that define you.