An Alert, Well-Hydrated Artist in No Acute Distress
The story of two artists with incurable neurological disease sharing fear, frustration and friendship as they push to complete the most rewarding work of their careers.
One morning while she was getting ready for school, 7-year-old Sarah told Hadley, “My dream catcher isn’t working anymore.” Dream catchers, small hoops decorated with beads, string and feathers, were originally crafted by Native Americans to protect their owners from bad dreams. Sarah had been intrigued with them ever since making one out of pipe cleaners in preschool. When she spotted one at an airport gift shop, Hadley bought it for her and she slept with it every night. Now, she explained to Hadley that she thought the dream catcher was too full to catch any more bad dreams. “I dreamed you’re going to die on my birthday,” she said.
That winter of 2014, Hadley was working as hard as she could on the designs for Montana Women’s Mural in her home studio. Sarah would often find her collapsed in exhaustion on the living room couch. She knew that her mother’s Parkinson’s made her tired and slow, but Hadley didn’t think it made sense yet to tell her the diagnosis had been changed to multiple system atrophy. Now, Sarah needed her reassurance. Not wanting to make the promise that she wasn’t going to die, Hadley simply told her, “We’re going to have a wonderful, long time together.” The fact was, Hadley didn’t feel at all close to dying. She’d read that MSA can either progress really fast, or slowly for ten years and then fast; intuitively, she felt she was on the slow track.
Sarah is almost ten now. She has never known her mother as a totally healthy person. She’s adjusted to changes, even welcoming Hadley’s use of a wheelchair as it allows them to walk home from school together or go to the park on weekends without relying on others to drive them. Hadley wonders often how Sarah’s feelings about her disease will shift as she moves into adolescence.
For those of us with children, one of the hardest aspects of having Parkinson’s is contemplating how it will change our relationships with them. We want to be the strong, reliable person they count on for comfort and advice, building family bonds, moving them into their college dorms, celebrating the events of their lives. The last thing we want when we bring a child into the world is to imagine we will be a burden on them before they’re even grown.
My diagnosis in 2009 came only a few months after our younger child, Tobias, left for his first year of college. Our daughter, Elena, was a college senior and both of them were 3000 miles away, in New England.
Because they were home for Christmas vacation the day I was diagnosed, I told them about it right away, stopping by their rooms to give them each a short elevator speech about Parkinson’s, explaining that it progressed slowly and was not life-threatening. They were quiet and had no questions for me, but I imagine as soon as I left the room their minds were busy — if only for as long as they would let themselves think about it. They were 19 and 22 — too old to not feel self-conscious about spontaneously revealing emotion and too young to feel, or at least express, concern for me.
In the 7 years since then, conversations about Parkinson’s with Elena and Tobias have been initiated by me and have revolved around stories about my Parkie friends or PD events I’ve attended. I joke with them about my slow movements and clumsy walk. I’ve assumed they haven’t asked about my PD because they’ve been taking their cues from me about how I’m doing. And the reality is I appear to be, and am, doing quite well. This doesn’t mean I believe they’re not affected by my Parkinson’s. Walking on the beach with Elena in 2013, I was sharing Hadley’s frustrating quest to get a diagnosis and I realized she was brushing away tears. Very empathetic by nature, she might have been feeling Hadley’s pain. More likely, the news had struck at her fears about me.
I asked Elena recently how she’s processed my Parkinson’s over the years. She said she consciously avoided researching the disease because she knew it would scare her and that only a year or two ago, she finally looked it up on Wikipedia. This year, she decided to go into medicine and has become more curious about Parkinson’s. She wrote to me:
I think the most interesting thing is that I remember feeling a little twinge of guilt around the time of my college graduation in 2010 that I had never considered going into medicine. So many people’s story about wanting to go into medical school is that they had a family member who became sick, but I initially didn’t feel that your diagnosis was affecting me in that way, and felt bad about it, especially given my interest in science. But I think the gears might have started turning a little, because all your stories about doctors made me realize what a difference thoughtful providers can make in the individual lives of people close to me. In addition to having my own physician friends whom I admire, I think this contributed to my shift in mindset about medicine as a field I would find challenging and rewarding. When people ask me why I want to go to medical school, I usually cite “being able to help family members and friends with their health care” as one of my strongest motivations, along with my general drive to serve others and to seek intellectual challenge.
We never stop being parents and our roles with our kids become more complex and essential in new ways when they’re beginning their independent lives. Nevertheless, I was relieved that Elena and Tobias had been “launched” when I got my diagnosis, if for no other reason than they didn’t have to be reminded every day of my Parkinson’s. It also meant that my time was more my own and I had the freedom to take care of myself however I needed to.
For my friend Karen Jaffe, getting a diagnosis at 49 in 2008 when her three daughters were teenagers still living at home was a very different story. Because Karen had a busy OB/GYN practice and worried that her PD diagnosis would affect her work as a surgeon, she kept it a secret from everyone but her husband, Marc. She felt that telling their kids and then asking them to keep it a secret it would be too big a burden on them. She also didn’t want to shake up their lives just as the older girls, Alena and Jana, were getting ready to leave the nest.
Five months after Karen’s diagnosis, she and her youngest, Sarah, 13, were alone in the house one afternoon. Bored, Sarah decided to look for the family journal in which Karen and Marc recorded funny things the girls had said over the years. In her parents’ bedroom, she discovered Karen’s own journal in a drawer. On the first page, Karen had written, “My name is Karen Jaffe. I am 49 years old and I have Parkinson’s disease.” When Sarah tells this story, she says she was stunned. She had no idea what Parkinson’s was. Was her mother going to die? She flipped through the pages, reading words KAren had never said aloud: neurologist, diagnosis, tremor, medication, symptoms. She checked the date of the first journal entry: July. It was now December. In tears, she ran downstairs and confronted her dismayed mother, who hugged and comforted her. Later, Karen, Marc and Sarah sat down to talk. When Karen explained they’d planned not to tell the girls about the diagnosis until they’d all left for college — in five more years — Sarah realized the full significance of the secret and felt she’d done something very wrong by uncovering it. So, when Karen and Marc asked her for more time before they told her sisters, the rest of the family and the community, Sarah says she was understanding. But the secrecy would prove to be tough for her:
For those full three months, I dreamt every night of the day that I could look my two sisters in the eye and tell them what I had been keeping from them for so long. It was a fantasy of mine — telling my two older sisters who thought I was this naïve, immature little sister that I, in fact, was given both this responsibility and burden for the past several months. More importantly, I wanted to show them that I was trustworthy; that I never cracked under pressure by telling them, even when a stupid argument would prompt me to consider doing so. In my fantasy version, we would all be sitting down in the living room, and Mom, Dad, and I would say to Alena and Jana, “We have something to tell you.” Then, after Alena and Jana processed everything and gathered their emotions, they would come over and hug me tightly and ask me a ton of questions about how I managed to carry the burden and how I possibly didn’t spill the beans. And finally, after three months, I would feel a sense of solace.
Instead, one night in March after Sarah returned from a week away with a friend, the family was together at the dinner table and someone said the word “Parkinson’s.” Sarah was crushed to learn that while she was gone, her parents had told her sisters about Karen’s diagnosis. She felt cheated out of the moment she’d anticipated for months, when her older sisters would show respect and empathy for all she’d been through. In retrospect, Sarah says she doesn’t think her sisters understood the weight of the secret until it was passed on to them.
Jana, Karen’s middle daughter, was 16 that March when she learned about her mother’s Parkinson’s, and she remembers feeling scared, angry and confused. Scared, she said, because she thought PD meant her mother was going to die, and confused about what the diagnosis meant for her mother and their family, and why it was so important to keep it a secret.
To help her daughters with their fear, Karen set up a meeting for them with her neurologist. Jana told me it was extremely valuable to be able to be able to ask questions about Parkinson’s without her parents present. But she couldn’t help feeling a little angry that Karen and Marc hadn’t told them about the diagnosis sooner; her family had always been honest with each other about everything. She was somewhat resentful that she had to keep it a secret. Because Karen and Marc grew up in Cleveland and Karen was a well-known physician, Jana and Sarah frequently ran into family acquaintances who would ask how their mother was. It was painful to have to lie. Karen would gradually reveal her diagnosis to people throughout the next couple of years, but it was not completely out in the open until 2011.
Over the years, Sarah and Jana have felt frustrated by how they perceive Parkinson’s has in some way taken over their mom. Early on, Karen got busy networking with members of the Parkinson’s community; soon she would become a member of the Michael J. Fox Foundation Patient Council. Then came plans for annual PD fundraisers and co-founding InMotion, a non-profit Parkinson’s wellness center. Karen’s phone and laptop were lit up at all hours and she became a kind of one-woman PD nexus. Her daughters were missing her. Was it the Parkinson’s itself, the medication she was taking, or had they just not noticed their mother’s obsessive tendencies because, as a physician, she had been away from home so much?
Sarah and Jana have openly discussed these concerns with Karen. Jana and Karen shared with me letters they exchanged two years ago, when Jana was 20. In her letter to Karen, Jana wrote:
When will be the next time that I spend with my mom that is free from all talk, mission, aims, goals, plans, accomplishments, setbacks and anything else PD-related? A conversation that if someone were listening in, they’d have no idea that you or anyone you know has PD? I know that you cannot escape this disease, but I can tell you that it is suffocating our relationship. I want to hear about all the good you’re doing and about all the bad this disease is doing to you. But I want you to acknowledge that there is still a world outside of PD.
Jana entreated her mother to take a break from PD and make a list of all the things she used to enjoy before Parkinson’s. Karen responded:
I wanted more than anything to write this note to you on a beautiful piece of stationary, hand written with a very fun stamp, but you would not have been able to read a single word so forgive me this one time.
Jana, your letter was sincere, truthful and honest and I bear you no grudge for that. In fact, it touched my heart so deeply that I have folded it up and have tucked it in my wallet where it will be close by…where I can read it again and again…and if I need to, again.
You are mature and brave beyond your years…just as your two sisters are. Your wisdom is kind and so powerfully expressed. I am so lucky that you are my daughter and that you knew that you could send this note to me without fear.
So what I have to tell you…what I need to tell you is that I am sorry. You know what that means so I will not enumerate the laundry list of ‘things I am sorry about’. I love you and your sisters so deeply that the thought that I have made these past 5 years harder on you than need be is very sad. But as you said in your own letter to me….”we still have reason to hope”.
The other night while waiting for you to arrive home after the ballgame …I found myself reading Doris Kearns Goodwin’s introduction in the Annie Leibovitz book that Ellen had just given me, appropriately titled Pilgrimage. And I paused when I read the following.
…“Ironically, the catastrophe proved to be a liberating force. It opened up a new path for Eleanor. No longer tied to her old world in the same way, she became involved with …(long list)…for organizing people and calling them to action. She found her voice and became one if the most influential women of her age.”
And I decided that perhaps this notion of bravery…of facing adversity, requires balance and that is what I think your advice to me was…strive for a healthy BALANCE.
So thank you for every word so thoughtfully written on those 2 1/2 pieces of paper. I love you dearly and I heard every word you wrote. I am proud to be your mother. I am proud…and grateful that you have taken something that has been hard for all of us and with it found your way. I know that your compassion and kindness will serve you well. You will be a physician who is loved by her patients…and I, for one, cannot wait to see it be so.
I love you,
When Karen and I discussed her correspondence with Jana, I wondered aloud whether talking about Parkinson’s all the time in front of our kids might be kind of like a member of a SWAT team expounding to his family the details of his day at work — scary stuff for one’s offspring. At the very least, perhaps Jana had competed for her mother’s attention with her medical practice, and now was frustrated to be faced with another “intrusion,” PD. I thought, but did not say, that it was also possible the dopamine agonist Karen was taking might be creating her hyper-focused preoccupation with her disease and related social networking. Karen saw my points and concluded, “You know, at the end of the day, we are the ones with this disease; our family and friends cannot presume to know what it is to stand in our shoes, and it is our life to live the way we need to.” I thought about this and re-read the quotation of Eleanor Roosevelt’s that Karen had included in her letter to Jana. It’s true that while we strive to protect our loved ones, it’s very difficult to make a larger impact on the world if we’re always wearing our parent or caretaker hat, worrying about how our feelings, our struggles, work and personal missions are going to affect those closest to us.
For Jana, Karen’s diagnosis had a silver lining; she credits it for helping her find her calling in life, to be a neurologist. For a year, she had a job that allowed her to work with Parkinson’s patients, and she has just begun medical school in Cleveland, where she grew up. She says that living in the same city as her mother means that she’s more aware of Karen’s disease progression. While she finds this disheartening in ways, she feels the regular exposure has helped “desensitize” her so her mother’s physical changes don’t seem quite as scary. Still, she finds herself worrying: How fast will the disease progress? What symptom will appear next? When will she not be able to take care of herself anymore?
Karen was very grateful to Jana for pressing her to think about the need for balance in her life. She has been working hard to find that balance while carrying on as one of the most effective activists the Parkinson’s community could hope for. In the meantime, the challenging, heartfelt and honest conversations with her children that began with Sarah’s discovery of her diagnosis continue to bring them all closer. In Sarah’s words:
My mom is a remarkable woman: strong-willed, passionate, determined, and focused. After years of feeling like I had lost her to a Parkinson’s junkie (as weird as that may sound), she’s finally starting to feel like my mom again — the mom I knew before our world was turned upside down. My family has grown stronger, both as individuals and as a whole, because of this disease.