The Monster Wave of Getting Diagnosed with MS
Hearing the words "you have multiple sclerosis" for the first time can be scary. And by scary, I mean FREAK-OUT-INDUCING. Getting diagnosed with MS—when you were expecting your doc to say "it's just a pinched nerve"—can utterly flatten you, throwing you into a terrifying tailspin. That monster wave of discovering you have an incurable disease suddenly makes you question everything about your future. But guess what? You are hardly alone. And you can get through this. Even if you get hit with a literal monster wave....
6 min read
When Life is Turned Upside Down
After your MS diagnosis, inevitably you are going to hear from well-meaning friends and family about how "it could be worse." As if that is going to make you feel better, sorta like the kind of comforting reassurance you might get after your parachute fails to open after skydiving from 10,000 feet instead from 15,000. And you land in a field of grass instead of a Kohl's parking lot. Your degree of pancakedness is less! Hoorah?
The story I'm about to share with you isn't that. It isn't even about MS. Oh, it's still majorly icky, sure. I mean, it goes from bad, to worse, to "you've got to be kidding me." But read to the end, and there are lessons about resilience that you can forever keep in your back pocket for motivation. This is a tale of a friend who got hit, literally, by a monster wave. And, after a hard road (ahem, a really, really hard road) got back up....
I met Jeff, then a high school teacher, years ago when I was the editor (and eventual co-owner) of a car magazine. His passion for sports cars and knowledge of how to boost them for maximum performance led him to ultimately write for our publication. Our paths passed frequently at car shows and he became a reliable contributor—and a friend. But while driving fast was a fun hobby for him, nothing compared to his true love: surfing.
Jeff was an expert surfer and regularly traveled the world to find monster waves. Hawaii, Indonesia, South Africa, California, French Polynesia. The bigger the better. In 2010 he was on a remote island in Indonesia catching cherry waves while I was moping about my feisty multiple sclerosis back in the States. I so wanted to switch places. And then.
Waves can be unpredictable. And unforgiving. When Jeff was riding in the swell of 14-footers, nothing too crazy, he got too low in the barrel of one. The punishment was immediate amid the furious churning froth of the ocean—his hip had been snapped in two. Fortunately there was a support boat that raced to his aid. Fellow surfers dragged him aboard and sped to shore, each jarring wave amplifying the blinding pain. But that was just the beginning.
Once ashore, Jeff was hurriedly lifted into a modified 4x4, necessary to navigate the deeply rutted roads to camp just a mile away. It felt like a thousand. Every pothole and bump was a hot poker of stabbing agony. But then, disaster: the rescue truck got mired in thigh-deep mud of the humid Indonesian jungle. The men jumped out to push, but as the wheels spun, the truck sunk deeper. It wasn't going to budge without help. After an agonizing wait, another truck arrived with a tow rope. It snapped. Out of options, the team was forced to carry Jeff in a makeshift gurney, trudging through the inhospitable terrain as quickly as possible. When they arrived at camp, he was set down on the facility’s lone solid surface: the dinner table.
He lay there, trying desperately to ignore the pain, for 15 hours. Finally, medical aid was at hand and he was airlifted to a hospital on a nearby island. He could not have known his nightmare was only beginning. During the emergency 5-hour surgery he awoke to sounds of drilling as doctors were trying to insert multiple pins to stabilize his damaged hip, which surgeons discovered was dangerously close to severing a major artery—meaning certain death—if he moved just the wrong way.
Inconceivably, it wasn't over. His life had been saved, but the pain was unrelenting. Five days later, doctors at the rural hospital made a horrifying discovery: the epidural had been inserted incorrectly. Finally corrected, only then could Jeff see through his tears.
Rising from the Ashes
Stable, he was flown home to the US. After Jeff’s third operation, doctors finally concluded his femoral neck bone could not be saved. Eight more months were spent without a hip, requiring complete immobilization and an IV drip 24 hours a day. Two more operations followed including a full hip replacement. After being bedridden for a year, Jeff was demoralized, but he was not going to give up. His muscles totally atrophied, he spent the next year walking in chest-high water to build up enough strength to walk with a cane. But the waves called. Could he surf again?
Day after day the former expert surfer watched beginners stand up on their first try—it took him four struggling months to accomplish the feat. He was not going to quit. In 2014, Jeff retired from teaching, moved to Bali, and started surfing every day. There were many times he could not get to his feet, but eventually he was catching waves on a long board. Then a short board. Life has changed, but life goes on. “I still limp, I can't run, and I am in pain all the time, day and night,” Jeff says. “But I can surf, I can walk, and I am thankful for every wave… every step.” What does this tale have to do with MS? Well, on the surface, nothing—it’s just a hella-crazy story. But duck under the waves and you’ll see how this parallels those first days of getting diagnosed with multiple sclerosis.
This wasn’t supposed to happen, I know. You weren’t prepared for that monster wave. Yeah, I’ve been there. Many of us have been there. You feel like you are drowning in an ocean of uncertainty—what does your future hold? Will you still be able to do the things you love? Will you end up in a wheelchair? Dunno, dunno, dunno. I can, though, say from experience that it’s not worth obsessing over (certainly, for gosh sakes, not when you are in bed trying to fall asleep).
I have an MS friend in Australia, Col, who breathes surfing. It's his elixir, his escape from our shared disease, even when he is not in the ocean. He knows intimately the power of Mother Nature's energy passing through water. “Waves are the heartbeat of the planet. The ballet of the sea, and the symphony of life. They heal, they calm, they exhilarate and they destroy, but always with immense beauty.”
Like Jeff and Col, you’ve been hit by that wave and nothing—nothing—is going to change that. Now dry off. You’ve got one hell of a life to live. As someone newly diagnosed with multiple sclerosis, right now you likely are going through what is one of the hardest stretches of living with this disease. Emotions are fragile. Waterworks are normal. Uncertainty reigns. It might take months, maybe longer, but you'll emerge from that just-diagnosed pipeline stronger than you ever thought possible, trust me.