Why I don’t share the ‘F-bomb SMA’ attitude
Brutal as it is, the disease can also bring benefits — at least, to an optimist
For years, slogans with the “F-bomb” (for a certain expletive) have expressed utter contempt for catastrophic diseases, social injustices, or whatever else riles folks up. The first such campaign I remember was about cancer. I certainly didn’t disagree with the desire to eliminate the ravages of the disease, but as I don’t spew profanities, I wouldn’t have said it or announced it on my T-shirt.
Call me old-fashioned … or just old.
It didn’t take long for the same slogan frenzy to target other maladies, including SMA. “F-bomb SMA” began appearing on social media, apparel, decals, tattoos, and more.
I remained mum.
Life as we knew it … poof!
By the end of summer 1996, my husband, Randy, our children, Matthew and Katie, and I had adjusted to almost a year of rural life in the North Carolina mountains. Sufficient bumps in life kept us alert, but rarely was anything overly calamitous.
And then came fall. Randy scrambled in his new coaching and teaching job while I helped out at our family’s lodge and volunteered at Matthew and Katie’s school. Randy’s schedule and mine rarely matched until we collapsed at night, so the positive pregnancy test was quite the shocker. And that is quite the understatement.
Jeffrey arrived in mid-May 1997, three days after my 43rd birthday and two weeks ahead of schedule. He was beautiful, easy, happy, and strong!
Within weeks, “strong” petered off the list. Our bonus baby was diagnosed at 2 months with a severe case of the deadliest known form of SMA, type 1.
Despite our unwavering efforts, our sweet little guy snagged his wings less than four months later.
On being an optimist
With the exception of trying to fit into old pants, I lean toward optimism. That doesn’t mean I’m never pessimistic or downbeat. Thankfully, however, I inherited a bounty of good-naturedness and conviction that things would fall into place as they should. My late mother dubbed me a Pollyanna.
That might be a bit annoying to others at times, but it’s been a godsend to me. If I’m not genuinely upbeat, I often fake it until things truly do look better. I’m grateful for that, as I had to do a lot of regrouping after SMA knocked our props away.
“F-bomb SMA” didn’t cross my mind, though.
Why not?
SMA — a blessing?
There are blessings in adversity.
I’ve had this discussion before. Some probably think I’m not quite right in the head, while those who cling desperately to God’s hand while dangling over a proverbial precipice understand completely.
SMA wasn’t adversity. It was outright devastation. We’d just been informed that our baby — an unplanned gift from God — had a rare, insidious disease that would likely snuff his life within a couple of years.
I didn’t grasp God’s possible rationale until I realized a few things.
The biggest epiphany came in the midst of fervent prayers that shifted gradually from “Please save Jeffrey!” to “Please help us stay strong!” to “Please take him!” Repeatedly and convincingly, the power of faith and prayer propelled us over numerous rough patches.
Because of our SMA journey, we were also awakened to comforting, mind-boggling signs.
We learned how laughter counters despondency. Matthew and Katie unwittingly manifested a perfect blend of concern over their baby brother’s well-being and innocent humor. While outsiders wondered how we could possibly find anything remotely humorous, we needed to do just that on occasion to release unfathomable stress.
Oh, the people you meet
Another crucial discovery was the importance of the friendships and instant camaraderie that I would’ve missed without SMA. And, oh boy, would I have missed them.
Others understand about friendships. Sherry Toh and Brianna Albers are fellow SMA News Today columnists and best friends. Sherry recently penned a heartfelt tribute to Brianna for her encouragement, determination, and help, especially with getting her started on Evrysdi (risdiplam), a beneficial SMA therapy not readily available to Sherry in Singapore.
Is ‘F-bomb SMA’ warranted?
The lead of my columnists’ group, Halsey Blocher (who has SMA), devoted a column to whether having a disability was a good or bad thing — something I’d discussed with parents of a few of my students during my teaching days. Responses varied, with one parent insisting that she’d never wish that her child had been born without a handicapping condition. I didn’t understand the sentiment until some years later.
Our brief SMA assignment afforded us a closer connection to God. I made invaluable friendships and “met” extraordinary folks I would never have met otherwise. And those signs!
Not everyone experiences the same SMA journey. Many face intense, frightening crises with traumatic medical interventions for years. Remembering Jeffrey’s scary episodes during his brief earthly stay, I can’t imagine enduring years of that. I easily understand if those families want to holler the “F-bomb SMA!” mantra and am not about to stop them.
That said, Pollyanna here prefers focusing on the brighter side.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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Comments
Mike Huddleston
Hey Helen -
Interesting article and I enjoyed reading it. Long time SMA Type 3 patient of over 45 years here. Since I was diagnosed as a teenager, I will admit that there were initially periods of anger and perhaps resentment about living with SMA. The challenges it presented and would present throughout my life. The loss of the ability to do some things I loved - particularly sports. The feeling of being different and the often cruelty of peers my age was certainly a battle to overcome.
Over the years, I realized that being angry and feeling sorry for yourself was no way to travel life's journey. And it was not helpful and people just didn't or wouldn't want to be around someone mad all the time. My anger was further alienating me - so compounding the issue, not making it better. Even if it was understandable, at least at times, I knew this was not the solution. I also had an attitude adjustment when it occurred to me that life needed to be experienced - the good and the bad, the easy parts as well as the challenges. And I also realized that I could still have a complete life without sports and other joys from before my diagnosis. And most importantly, I had no real right to complain when there were and are 8 year old children dying of cancer and other conditions. They are the ones who are truly missing out and the devastation to their parents and families must be enormous. Save for a minor blip in my DNA, I could have been a Type 1 and been gone many years ago.
So, I decided to embrace life and find joy where I can. And that's in a lot of places as well as people I've met through SMA. So, thank you for writing this and for the reminder we all need.
Helen Baldwin
Thanks so much, Mike, for taking the time to comment and sharing your insight into this topic!
I can only imagine how tough it must have been to lose the abilities you had at an older age, especially with sports. And I understand about the cruelty of children. Our granddaughter, a new second-grader, is dealing with several physical issues (not SMA), but she is so bubbly and ahead of her years in many ways, I'd like to hope that maybe she won't face the same cruel teasing my generation faced... or maybe she'll be better equipped to ignore it. I'm an optimist :)
My aunt and uncle had one child. He and his buddies grew up snooping through caves and rarely let anyone know where they were. When my cousin was in high school, another student, who was 'playing around' with a firearm, shot him in the neck. My cousin survived as a quadriplegic, instantly unable to do anything he'd done before, other than speaking. The biggest positive of that horrific incident is that no one had to worry that he'd be trapped in a cave 'somewhere' and would never be found. I imagine it took years of attitude adjustment on his part (and that of his folks), but he ended up moving to Mexico, marrying his Mexican nurse, and fathering a child. He became a pro at writing with a pen in his mouth, and my uncle made sure he had the newest in computer equipment (Apple was just appearing). I tried not to complain much after realizing how much my cousin's life had changed.
However, it took our SMA assignment many years later for so much to seemingly fall into place. I learned to FULLY appreciate that God (not I!) was in charge - a huge relief in all ways. I began considering it an honor that God had entrusted Jeffrey to our care, and I learned that one cannot pray too much, and that no prayer request is considered insignificant by God.
And I simply cannot stress how much the friendships have meant over the years. Even if I don't keep in touch on a regular basis with most of the families I met online in the beginning years, Facebook has enabled me to see some of what's going on with them. I can't imagine what I'd do without one of my best friends ever, whom I met because of SMA.
I know many share these sentiments and many do not, and I understand. I'm grateful, like you, that I've learned firsthand that determination to make the best of a rotten set of circumstances comes with plenty of rewards.
Again, thank you so much for responding! Continued optimism to you :)