Lessons from a rude awakening
Everyone suffering from sarcoidosis has a unique story to tell. There is nothing cookie-cutter about how the disease presents itself, how it is diagnosed, how it is treated and how the course of the disease will run.
So, here’s my story
Where shall I start?
Like so many of us, I had never heard of sarcoidosis before I learned that it was my fate. What began with the relatively benign diagnosis of carpal tunnel syndrome, rocketed to a death sentence of Stage 4 cancer, and ultimately settled in with the diagnosis of sarcoidosis, both in my spinal cord and lungs.
And the first signs that something was off?
My symptoms began to emerge in 2001, when I was 44 years old, in otherwise excellent health and focusing on work and family. It all began with progressive numbness in both hands. As a professional writer and journalist, I had seen numerous colleagues and competitors deal with similar symptoms. To a man, and woman, it invariably turned out to be carpal tunnel syndrome… something a wrist brace or two could take care of.
I wasn’t so lucky.
The numbness in my hands worsened and didn’t respond to any treatments, medications or devices. To make matters worse, the numbness quickly spread to my feet, legs and chest. My doctor was a bit concerned and had me scheduled for an MRI.
I wasn’t overly concerned, at least not until my doctor’s office called. They wanted to have me come in to speak with the doctor and suggested (strongly) that my wife come along with me. While I knew this wasn’t a good sign, I had no idea of just how bad it was going to be.
“Stage 4 astrocytoma”
What? Yes cancer. No hope for painful months. Recovery. Six months to live. Six months to live. As in six incredibly uncomfortable and painful months.
Did I mention that my sons were 17 and 14? The older one, a senior in high school deep in the midst of the college application process. The younger guy? An eighth-grader just beginning to embark upon adolescence.
Given the initial diagnosis, in something of a daze, I proceeded to get my proverbial “things in order.”
I won’t say I “accepted” the death sentence, but I tried to deal with it as an inevitability. I would miss seeing my young sons grow into adulthood. I’d miss my “golden years” with my wife. I could only speculate how my life would have worked out and what impact – if any – I’d have on the world had I lived to a ripe old age.
Since the diagnosis was “only 99.5 percent certain,” I was scheduled for a surgery designed to make the diagnosis a 100 percent certain one. What was far less certain was my surviving the surgery or, if I did, emerging from it completely paralyzed.
Oops.
It took seven hours on the operating table for the surgeon (digging over and over again into my spinal cord) to finally concede that his diagnosis was wrong. I woke from the surgery with my tearful wife at the foot of my bed who informed me that I wasn’t going to die after all.
It was something called sarcoidosis instead. Oddly, there was no relief in his voice only what seemed an annoying clear disappointment that his diagnosis was way off base.
While I had never heard of sarcoidosis and had no idea of what that meant, it certainly sounded better than an early, painful, death.
After weeks of paralysis and months of recovery and rehabilitation, I began a sarcoidosis journey that has continued to this day.
Following surgery, I was paralyzed from the waist down for several terrifying weeks. Neurosarcoidosis wasn’t cancer, but it certainly wasn’t a walk in the park. Before I could focus on what the future would bring, I had to deal with the uncertainties; whether I would ever walk again, whether I would ever work again, whether I could adequately be a father to my children, a husband to my wife and be a contributing member of society.
There was some uncertainty about my being able to walk again and even more uncertainty about my living a relatively normal life going forward. Cutting to the chase, I wasn’t paralyzed and was back on my feet within a month and walking shakily but unaided within two months.
The doctors refused to give me a long-term prognosis because, this being 2004 and doctors ever familiar with sarcoidosis were few and very far between, they had no idea of what that prognosis might be.
What I’ve learned is that sarcoidosis is scary, frustrating and confusing.
Scary?
As an orphan disease, there is more we don’t know about it than we do know about it. Scary? New symptoms seem to appear out of nowhere. Scary? No organ is immune from the possible spread of the disease. Scary? I never know how I’ll feel when I wake up each morning.
Frustrating?
It’s hard to plan for the future (let alone next week). Frustrating? I do everything I can, take every medication prescribed, and still feel like my health is a crap shot.
Confusing?
Every doctor has a different plan for dealing with the disease. Confusing? I don’t know whether it’s kind or cruel to get close to my grandson. Confusing? I can’t plan my life two years from now, let alone 20 years from now.
What’s next?
If you are reading this, you have sarcoidosis, care about someone with sarcoidosis, or share my hopes and dreams for a better understanding of the disease and its treatment. For all of you, based on my experience alone, here are a few ways I’ve learned to cope over the years:
- As hard as it may be, stay positive.
- Negativity can only mess with your mental health, it can wreak havoc with your physical health.
- Remember your place in the world.
- People still depend on you.
- People still love you.
- People can still learn from you.
- People can even be inspired by you.
If this sounds pessimistic, it shouldn’t. There are many negatives surrounding sarcoidosis, but it is crucial to focus on the positives. Allow the disease to make you stronger, smarter and more resilient. Every day is a gift and we must treat each as such.
You will have times when the disease will get you down, but keep them to a minimum. It may sound cliché to be as positive as you can be, but isn’t that what life should be about!
Hate to say it, but we all die. The best we can do is make the best for ourselves, for those we care about, and for those we love!
By Jon Gelberg
