“Is there any history of brain cancer in your family?” asked the MRI technician about as casually as you might ask someone to pass the potatoes.
Suffice to say, that was not a question that my wife Sarah was expecting.
We are so alike in so many ways – and yet so different. I suppose that it’s like that in most any relationship.
Me? I can stub my toe and immediately want to post it to Facebook. Sarah, on the other hand, is an intensely private person.
Previously known to only a select few, we now both live with “invisible disabilities.” Those who know me know that my life was changed forever a few years ago by a traumatic brain injury. Daily, I suit up and show up for life with an invisible disability. If we were to meet at our local market and exchange pleasantries, you would most likely never know of my challenges.
They aren’t called invisible disabilities by chance.
And last fall, as the leaves here in New England began their endless march from green to yellow to gone, Sarah had her dance card punched and is now a card-carrying member of the Invisibly Disabled Club.
Without a doubt, it was the scariest time of my life. Nothing even holds a remotely close second place to it. Autoimmune disorders are notoriously hard to diagnose. There were endless tests, possible diagnoses that were spine-chilling and enough fear coursing through my veins to power a medium-sized city.
From brain cancer to Muscular Dystrophy, from Lupus to Fibromyalgia, the parade of tests and doctors visits seemed to go on forever. The thought of losing her was unfathomable. Living with “we don’t know what you have, but you have something,” is far from a cakewalk.
We hunkered down, us, together… like we have done since time out of mind and let the process unfold. Life as a brain injury survivor has taught me to be patient with the process
“Whatever it is, we’ll get through it,” Sarah shared repeatedly. But when you don’t know what “it” is, leaps of faith become hard. I just wanted her to feel better. Nothing more.
And the diagnosis was confirmed – Fibromyalgia.
From brain fog to unrelenting pain, she now lives, like so many other souls that I hold near and dear to me, with a lifelong condition. And though the lyrics are different, the music is hauntingly familiar.
Over the years since my own injury, we have had much spirited debate over the term “caregiver.” I know of so many who are in need of part-time and in many cases – full time care. I am blessed beyond measure with my lot in life. I am able to drive, to work at an almost full-time pace, to go out to the market for a few things, to be relatively independent.
Not everyone with a traumatic brain injury fares as well. Rest assured I still have issues that many of those who walk undamaged would find unfathomable, but I still seem to muddle forward.
Sarah calls herself, “the wife of a brain injury survivor.”
But I don’t kid myself for a moment. I would not be here today had I not had her as my soulmate – watching over me.
And so we find ourselves in a role-reversal. I so want to say that I am now a caregiver, but I’m not. I am the husband of someone I love – who also has an invisible disability. I watch over Sarah who watches over me. An endless circle of love.
At times unasked for, fear creeps in. I am compromised and am often afraid I might miss something important – really important – as it relates to Sarah’s health.
Since my accident, I no longer sit on the front seat of the Awareness Bus. I’m closer to the back of the bus in terms awareness more times than you’d expect.
There is an endless list of invisible disabilities. From Lupus to autism, from brain injury to Fibromyalgia, millions walk through life appearing “normal” to those unaware.
Next week, Sarah and I will be celebrating our five-year wedding anniversary. Five years ago, under a warm summer sun, oceanside, barefoot in deep green grass, and in the company of people who love us, we professed our love and commitment to each other. “For better, for worse, in sickness and in health…”
Little could either of us have imagined the life that has unfolded for us both.
Slow-by-inch, her hand forever in mine, we move forward in life… grateful for the comfort that comes only in the deep and heartfelt realization that you are spending life with your best friend.
And that together… we can walk through just about anything.
A Short Afterword…
Weeks ago, I asked Sarah if it was OK to write about this. Her right to privacy will always be something I honor. I know her like no other and knew her answer before I asked – but asked anyway. Unconditional love is like that. While I know that her still waters run deep, that’s just how we roll.