Raising Half a Million Dollars for MS Nearly Killed Him. Here’s What His Story Means to Me.
After a recent diagnosis of MS threw my life upside down, I started cycling to try to out-pedal my fear. Then I met Larry.
Less than 2 years ago, Larry Sachs was lying on his belly and struggling to breathe, his body bloodied and twisted in all the wrong directions.
A longtime cyclist, Larry had been speeding joyfully (too fast, he admits) down a steep hill in Pittsburgh in August 2019 when an unexpected patch of gravel on a tight turn threw him upside down on a pile of rocks. Bouncing once, he landed face down. The resulting injuries left him wondering if he’d ever walk, let alone ride a bike, again.
Larry, now 63, told me about the crash while we were climbing yet another hill in rural western Pennsylvania together one recent Sunday morning. The two of us were on a group training ride, preparing for an upcoming athletic event — the Bike MS Escape to the Lake ride, planned for June 12, 2021, which raises funds for the National Multiple Sclerosis Society.
Larry and I bonded earlier while joking about which of us was slower. It turns out we both had our excuses for being tortoises. His was that he was still recovering from his devastating accident. Mine was that I was training after being thrown upside down myself by a recent diagnosis of MS.
Multiple sclerosis, or MS, is an unpredictable autoimmune disease that damages the central nervous system, including the brain. For me, diagnosed just 4 months ago at age 38, MS currently means weirdly numb feet, stiff legs, and a few other random but thankfully only minor symptoms.
But that’s just me. MS wreaks its havoc on the central nervous system with the predictability of a thousand-sided dice roll — which means no patient’s disease course ever runs the same. The wide-ranging grab bag of symptoms can include everything from debilitating fatigue and near-paralysis to impaired vision and cognitive decline. There’s also the infamous “MS hug,” which patients describe as a tightening pressure on their chest that feels like they’re being strangled. A hug is a cruel name for it.
Before my diagnosis, I’d barely even heard of MS. Meanwhile, for Larry — and many on our fundraising team — it’s been a part of his life for decades. For several years now, Larry’s been riding in this event as a part of the legendary Hungarian ExCycled Racing Team. (The team and its founders, Alan Iszauk and Bruce Ungar, were recently featured in Momentum, the National MS Society’s magazine.)
New to MS and new to Pittsburgh, I recently joined their team as a way to meet others taking part in the June event and train on some new routes in the area. That’s how I met Larry.
“My team nickname is ‘Not Dead Yet,’” Larry announced when we first met. I laughed politely, thinking it was just a joke about his age. (In my defense, you hear a fair amount of those jokes when you’re cycling with a bunch of Lycra-clad men in their 60s and 70s. And this is despite the fact that these dudes can out-pedal most people 30 years younger, including me, mind you.)
But as Larry and I struggled up those hills together, I learned just how real his nickname was.
“Were you unconscious?” I asked, after he described how his horrified teammates discovered his prone body 15 feet off the side of the road, and how the paramedics lifted him from the rocks into an ambulance.
“Unfortunately, no,” he replied, with a wry laugh. He certainly had a great sense of humor over his ordeal — you could give him that.
The crash left Larry with 7 broken ribs, a punctured lung, fractured vertebrae in his back and neck, two wrecked fingers, a broken upper arm, and a shoulder so badly smashed to bits that he had to get a whole new one. Between all the surgeries — including an unexpected open heart surgery last May — Larry said, “I look like someone who lost a knife fight.”
He sent me a picture of himself post-crash in the hospital. Covered in splints, bruises, and bandages, his legs in pneumatic compression devices, he’s somehow still looking determined. Maybe it’s the old-school Tom Selleck dark mustache that gives off that effect. Or maybe it’s just the stubbornly defiant glint in his eye.
Fast forward less than 2 years later, and Larry’s back on his bike again. This year will be his 30th Escape to the Lake Bike MS ride. He’s on the precipice of a huge fundraising goal, too. By the final deadline for this Bike MS event, Larry hopes he will have raised a cumulative total of $500,000 since he first began riding. He’s currently only a few thousand dollars away from reaching that epic milestone.
Alan Iszauk, a captain and co-founder of our MS fundraising team, was riding with Larry the day of the 2019 crash.
There’s a photo of Alan, Larry, and two other teammates from that day. They’re posing at the top of Mount Washington, one of the highest points of Pittsburgh, with a view of the city skyline in the background. The sun is shining, and the men are smiling. Larry is wearing a bright yellow Bike MS jersey from 2003.
Less than 5 minutes after that photo was taken, there were no more smiles. Two hundred yards from the bottom of that very hill was Larry’s crash site.
“I am still haunted with occasional nightmares about it,” Alan told me. His normally cheerful voice was heavy when he described the aftermath. “It was one of the most frightening things I’ve ever seen. When we first came upon him, knowing the circumstances, knowing the road, I assumed he was dead when we first saw him.”
Alan described Larry’s extended time in intensive care, the hospital, and weeks incapacitated at home. The injuries were so serious, Alan said, that he honestly never believed he’d see Larry at a Bike MS event again.
But Alan laughed when he shared how, even right after the bike crash in the hospital, Larry took every chance he could to continue fundraising. “He was soliciting all the doctors, all the nurses, anyone he could talk to for donations.”
Alan is a long-time and passionately dedicated fundraiser for MS himself. But Larry, he admitted, “is in a whole other league.”
Alan said it took him years to recruit Larry to join his fundraising team. Now, he’s grateful and thrilled that Larry’s amazing recovery means they can continue their journey together. They’ve already taken new group photos, smiling in their helmets and Lycra. But Larry’s not wearing the same bright yellow jersey anymore.
“The paramedics had to cut it off of me,” Larry lamented. “That was my favorite jersey.”
Larry credits his survival to his bike helmet that day. The helmet was crushed and badly mangled — but his brain, thankfully, was not.
“I still have the helmet,” he shared proudly as we rode together on our training ride. He keeps the deeply dented hunk of white plastic in a closet now, as a reminder of what he went through.
I found myself pulling at the chin straps on my own helmet as he told me this, wondering if they were tight enough. Larry’s story is a very real reminder that cycling is not without its risks. His crash came from too much speed and not enough traction on a tight turn. But actually, most cyclist fatalities occur when riders are struck by a driver in a car or truck.
I thought about this as a red Dodge Ram pickup truck passed us somewhat narrowly on the left. The human body can withstand a lot of things, but a 3,000+ pound hunk of speeding metal — not so much. Are my lights bright enough? Should I get a new helmet?
No, wait, I realized. Here I am, thinking about my risk of a bicycle crash, when I’m still coming to terms with another painful crash. That is, the one where the news that I have MS came crashing down on my head. The one where the sudden uncertainty of what my life might be like in 10 or more years became my new reality.
Yet, maybe there’s a comparison I can make here, too.
Right now, I think of my MS diagnosis as crystallizing something that was always true. Try as I might, I have no idea what’s around the next bend. But do any of us? This is the time of the pandemic, after all — the unexpected gravel patch that collectively upended us all. No one can predict what sharp turns life has in store.
What will the future hold for me? Will it be a wheelchair? Cognitive disability or blindness that keeps me from working, from writing? A bladder infection, worsened by my medication-weakened immune system, that lands me in the hospital?
Or… will I be more-or-less completely, blissfully fine? My chances of avoiding the worst are really quite good, thankfully — but it’s still a dice roll in a game I never signed up for.
I’m also aware that this sort of que sera sera “who knows what’s around the bend?” mentality is its own kind of luxury. Thanks to a recent wave of powerful disease-modifying therapies, newly diagnosed patients like me have a relatively great long-term prognosis. (“There’s now a less than 10 percent chance that you’ll even need a cane in 10 years,” as my statistics-loving neurologist told me on the day of my diagnosis. Ok, then.)
For many people with MS, however — especially those with the more aggressive or advanced forms known as Primary and Secondary Progressive MS — they know what’s in their future. They know it because it’s already their lived present. They know pain, limited mobility, cog fog, and progressively worsening disease, with medications that only partially alleviate their symptoms.
There’s a reason why a diagnosis of MS automatically disqualifies you from signing up for long-term disability/care insurance. Despite the recent advancements, MS is still a disease without a cure.
There are approximately 10,000 people living with MS here in the western Pennsylvania region like me, and nearly a million in the United States. In addition to no cure, so far there’s no known single cause for the disease, either — only a collection of risk factors ranging from vitamin D deficiency to a genetic predisposition to autoimmune diseases. Maybe MS is caused by a virus, some say.
Or perhaps, like a fast downhill turn gone awry, it’s just a stroke of random bad luck. That’s how I feel some days, at any rate, wondering why my brain decided it would be a good idea to start eating itself like a misguided zombie. (I mean, when I wonder why my immune system decided to start attacking the myelin sheaths around the nerves in my brain, that is, if you want to get technical.)
I was thrown into the world of MS thanks to a startling MRI report, and all that followed. But, I wondered, how did Larry get so involved?
A naturally gifted talker, Larry’s happy to tell me the story, and then some. Thirty years ago, he said, he joined his first Bike MS event because he was looking for a long distance bike ride and a cause. He had no connection to MS himself at the time.
Larry’s tales of his early days as a Bike MS fundraiser are centered around competition. He set a goal to be the top fundraiser every year, and much of the time, he made it. Larry can rattle off many of his yearly fundraising rankings by heart. With a background including time as a college-level competitive gymnast, a regional collegiate backgammon champion, and a 30+ year career as a prosecutor in the District Attorney’s office, it’s maybe no surprise that this man thrives on winning.
Over the years, though, Larry’s commitment to the MS cause solidified as he got to know those whom his fundraising affected. He told me about a woman he met in an online backgammon game who was wheelchair-bound due to MS. When she learned about his fundraising ride, she sold her van and wrote a $4,000 check. With tears in his eyes, Larry also described a woman who stunned him at a fundraising event by thanking him profusely for his work, telling him that both her mother and sister suffered from MS.
At this point, Larry says that he’s become such a prolific fundraiser for the National MS Society — sometimes pulling in more than $25,000 in a year, without any corporate sponsorship — that he would feel guilty if he quit because of the dent it would put in their budget. Money raised through Bike MS — including the nearly $500,000 from Larry’s 30-year efforts — funds cutting-edge research and critical services to help people with MS live their best lives.
This feeling of commitment to keep riding, to keep fundraising for the National MS Society and the people they help, fueled Larry through his 18 months of grueling recovery. It kept him working hard at every twice-weekly physical therapy session, pushing through the pain and frustration.
And, against all odds, Larry’s resilience paid off. “My surgeon says the range of motion in my replaced shoulder is one of the top two recoveries he’s seen,” Larry notes, ever keeping score.
“Was it hard to get back on the bike, knowing first-hand now how dangerous and brutal a crash can be? Why put yourself through that risk again?” I asked him.
Larry shrugged. “Bad things can happen. We do what we can to protect ourselves, but sometimes, we can’t.”
He told me that he’s been on three rides over the last few decades where a cyclist has been killed. He was somber recounting the stories, but stubbornly resolute in not letting them stop him.
“You can’t live your life afraid, because then you have no life,” Larry said. “The MS Society needs what I can give them, and I’m happy to be able to do it.”
He echoed the words of our team captain, Alan: “When people ask us how long we plan to keep doing this ride, given that we’re no spring chickens these days, we say this: We ride until whenever a cure is found, or when we’re physically unable to do it.”
These men humble me.
For me, cycling’s been my way so far to push past the anxiety of the unknown. Exercise is good for my brain, in more ways than one. I want to out-pedal the fear, climb the mountain of acceptance, and coast into some feeling of control in a newly chaotic world.
That’s what I was looking for when I signed up for this Bike MS ride. The unexpected benefit has been meeting people like Larry, Alan, and our teammates. The immense gift has been learning from them how much kindness, empathy, and sheer stubborn grit there is out there in this new MS world.
“Make sure you mention in your article how you kicked my butt on the training ride,” Larry insists. I’m not so sure about that. But, comments like these are just one of the many tiny ways that Larry and the entire team radiate encouragement and support.
I may have MS, but I also now have countless people out there who care about me, even those who’ve never met me. I see how hard Larry and Alan and many others work to make a difference in people’s lives, sometimes at great personal cost — like losing a shoulder, or much, much worse. I see how many generous people give what they can to support this cause. And I see that, just one pedal stroke and one donation at a time, this world gets changed a little for the better.
Sure, this road we’re on is not always easy, whether we choose it or not. But in spite of that — or maybe even because of that — Larry, Alan, me, and so many others in the Bike MS community — well, we plan to just keep riding.
I’m with them now. I’ll ride until there’s a cure, or as long as I can. Who knows what tomorrow will bring. But until then, you can find us spinning our pedals through the countryside, the warm sun on our faces, the breeze at our backs.
