Last week we “celebrated” Rare Disease Day in NYC. Though our schedule was dictated by available openings at the hospital, I did consider it serendipitous that we were in the hospital in the city that day. It gave us an excuse to “celebrate” with dinner and a beer at a local pub and add a little fun to a long day of medical appointments.
My daughter lives with two rare diseases that we know of, and possibly more that have yet to be discovered. One causes lesions in her brain which hemorrhage and multiply. The other causes a fluid buildup requiring the use of a shunt to control the pressure in the brain.
Both these conditions have no cure and have caused her to have numerous brain surgeries. She is the exception to all the rules. That’s one reason why I consider her to be exceptional.
As my daughter ages, (she’s 21 now), the gap widens between her and her peers and the disabilities become more apparent. Johanna lives with us but has a full-time aide who takes her and her service dog out into the community. She has a few jobs in the area working for local business owners doing simple but meaningful tasks in exchange for goods and services. She gets paid in coffee, lunch and crumb cakes (my personal favorite). Now, if she could work on a farm for produce and eggs and a brewery for beer, we’d cover all the necessary food groups!
Traveling with Johanna is like traveling with a celebrity. The other day, her neurologist introduced us to another doctor as “the dynamic duo,” as he recounted how we sing and present together at conferences and performances and that we’ve been in the news a few times over the past twenty years. Life is always interesting when you’re raising a child with a rare disease.
People stop and talk to Johanna all the time to ask her about her service dog, Rae. Rae is not supposed to solicit attention, but if she smells dog treats on a person, she stares with her human-like eyes and tries to engage them, hoping to start a conversation that could possibly — though not likely — end in a reward.
One of the skills these dogs offer is to be a social bridge between the disabled person and the rest of the world. It’s a huge help, really. My daughter goes from being an invisible person walking with assistance or in a wheelchair, to being noticed as a lovely young lady with a really cool dog. People approach Johanna more because she has the dog and they start (mostly) meaningful conversations.
This past week, I was struck by the invisible nature of these rare diseases. Sometimes it takes people a while to realize the impact that these diseases have on my daughter because she is very social and has strong intuitive intelligence, compensating for the cognitive impairment.
I also live with invisible autoimmune diseases which cause exhaustion, brain fog, and balance problems. But unlike my daughter’s issues, which can be more apparent to people who take the time to watch and listen to her, my struggles are barely noticeable to the untrained eye.
Many people like me with autoimmune diseases can live healthy, normal lives. But it doesn’t mean that the invisible diseases are any less real.
In some ways, I think it’s harder to live with an invisible disease because people expect you to keep a normal schedule and pace when your body just can’t keep up. After days of appointments and running IV therapies for my daughter at home, my body needs a lot of rest — so I pull away from the running to reset myself and catch a breath.
When we went to the doctor after the brain MRI and the exams, it was time to see what cannot be observed with the naked eye. The lesions in Jo’s brain are innumerable and the evidence of continuing hemorrhages is a bit startling as the images spread across a large computer screen.
The good news is that there is nothing there that requires immediate surgery. The startling reality is that it’s an MRI which would land most people in the ICU.
However, things are not always as they seem.
With radiographic studies, we see a brain which has been injured because of two active rare diseases. With the naked eye, we see some of the impacts of those diseases on my daughter’s cognitive and motor functions.
But there’s still another perspective which does not readily meet the eye. My daughter is not defined by the disabilities we see or by the rare diseases which we cannot see. She defies it all to be truly her own person, with her own purpose.
Recently, Johanna and I were discussing goals and what it meant to find one’s life purpose. I asked Jo if she wanted to compose a purpose statement to work on and possibly put up on her wall in a pretty painted design.
After some discussions about her gifts, Johanna said, “My purpose is to make sense out of my disabilities for myself and for others — to bring life and hope to all.”
I agree. In grappling with her own disabilities, Johanna helps others to see that every life has meaning and purpose and the ability to bring hope.
Some people don’t like using the word “disabilities” when describing these limitations. We do because we have found it’s important to recognize your limitations so you can rise above them. How else can we adapt things if we don’t acknowledge that they are broken?
I’ll give you a practical example. Sometimes, the doctor orders IV fluids and medications for my daughter, to be given at home. The therapies can take up to four hours a day. We started them again a few weeks ago, just as there was a break in the weather and a hint of spring.
We could have stayed inside for four hours, watching the beautiful afternoon drift away before our eyes. But rather than sitting home in the recliner, we attached an IV pole to Johanna’s stroller and took her for a walk to the beach.
We were gone for about two hours enjoying the view of the Long Island Sound rather than sitting at home. Acknowledging our limitations helped us find ways to rise above them.
The spiritual principle I see in this temporal reality is described in 2 Corinthians 4:18: ”So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”
It works both ways. We can’t always see on the outside, the unseen struggles people are battling from within. Likewise, the struggles we do see — disabilities or impairments — are not limitations on a person’s value and life purpose. Unseen strengths and purpose emerge from the struggles that we see and even from those we do not. We have only to look beyond what our eyes see to discover the realities and the gifts that lie within each unseen life.
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