It’s challenging to be a bubby. For those of us blessed with a large family who in turn are themselves blessed with large families, we are often forced to decide how to divide our very limited time and resources among our growing tribe. And when we are bubbies challenged with a chronic illness, well, those decisions become even more difficult. I host my children often, and I love taking my grandchildren on outings, but I also pay the price. The nachas leaves me both invigorated and exhausted — invigorated with a combination of gratitude and pleasure, exhausted from the physical exertion combined with the sheer noise level of being involved with so many little, and big, people.
I took my exhaustion to a new, unprecedented, level and traveled halfway across the world, from my home in Yerushalayim to Portland, Oregon, where I attended the World Parkinson’s Congress, a four-day learning experience for medical professionals, paramedical professionals, Parkinson’s researchers and plain, old ordinary people with Parkinson’s. Although I was the grateful recipient of a grant that covered most of my expenses, the decision to make this journey was not an easy one. The congress concluded less than a week and a half before Rosh Hashanah, which meant that after traveling for close to twenty-four hours, I returned home and literally plunged headfirst into my erev Yom Tov preparations.
Yes, the trip was exhausting, and jet lag made it difficult to fully take advantage of everything that was offered during the four days that I was there (I had a tendency to doze off at the lectures). And of course, returning home so close to Rosh Hashanah was far from ideal. Yet, despite the fact that it took me close to a month to finally return to normal, I am glad I went, and would do it again if I had the opportunity.
Think back to when you had your first baby, and how you loved connecting with other new mothers. They, too, were juggling a whole slew of new roles while attempting to remain rational, balanced human beings. They, too, struggled with nights that seemed to begin at dawn, and tried to keep to a schedule that can only be described as a consistent variable. In their company you felt understood and validated.
That’s how it is with Parkinson’s. There’s a part of me that no one, except other people with Parkinson’s, can understand. During the four days that I spent at the World Parkinson Congress, I met dozens of people from throughout the world determined to live a rich, full life, despite their Parkinson’s. I was motivated by their enthusiasm, and learned from their experience.
Thanks to Sparks of Life, a Lakewood based organization devoted to helping Orthodox Jews living with Parkinson’s, I enjoyed glatt kosher meals and was able to connect with other frum people sharing the same challenge. Yes, the lectures and workshops were both enlightening and fascinating, and I even learned a few interesting tips, but what I really found exhilarating was being together with others who truly understand that unique part of me, even though it left me exhausted.
And that was a real lesson for me.
I don’t know about you, but I tend to get into a rut. I have a schedule, I stick to it, and I try my hardest to avoid anything that takes me out of my comfort zone. Traveling across the world is challenging. Coming home right before Yom Tov is even more challenging. And, of course, it turned my entire schedule completely upside down (Literally! There’s a ten-hour time difference between Jerusalem and Portland.). But I stretched myself and took the plunge. It wasn’t easy, and I paid for it dearly, but had I not done it, I would have lost immeasurably.
Waiting for the bus this morning, I met one my “writing friends,” and asked her about one of her neighbors, a woman whom I view as a very dear friend, although we almost never manage to speak with each other. “Oh, Sarah?” my writing friend smiled, “I just got an email from her. She wrote it in Singapore (Singapore?!) while waiting for her connecting flight to New Zealand. She’s visiting her son there.”
“Wow!” I responded. “This fits right in with an article I’m writing for Binah. I admire Sarah so much because she refuses to let her schedule take over her life. Although she’s well into her sixties, she continues to grow and experience new things, even though she knows that she’ll have to pay the price. The importance of that vibrancy, that willingness to explore and grow, is what I want to convey to my readers.”
My friend nodded. “I hope you succeed,” she said. “It’s such an important message.”
And that’s exactly what I am doing now.