By Wendy Marco
Wendy Marco wrote this essay a few weeks before her husband, Jeff Marco, attempted his first climb of Mt. Whitney in March 2012.
It was a chilly sunny day in early March 2011. We had left our toddler, Cierra, with my mom and headed to the mountain for a day of snowboarding. We were on the chair lift when my husband turned to me and said, “The left side of my lips are burning really badly. Do they look chapped?” They weren’t chapped, but the burning got worse and less than a week later, when Jeff was reading Cierra a bedtime story, he sounded as if he was drunk, slurring and stumbling over the simple words of “Good Night Moon.” Within a day he was unable to get his lips to form the shapes necessary to speak at all.
A trip to a neurologist followed – the second time he had been. Two years prior, after a bout of serious fatigue and facial paralysis, he had been told he just needed rest. This time they administered a myriad of tests, and by the time the trees had their spring leaves, he had a diagnosis: multiple sclerosis. MS, I learned, is a progressive debilitating disease that over time strips its victims of physical function. There is no cure.
I remember the moment it hit me. I was driving to work and I had to pull over, because the tears that swallowed my eyes made it impossible to see the road. I just kept thinking about the life we had planned and the things we most loved to do together – snowboard, rock climb, hike, water ski. Now I was wondering if in 20 years he would be in a wheelchair, unable to walk our daughter down the aisle on her wedding day.
What I don’t remember is the moment it hit him. I grieved, he didn’t. He didn’t tell anyone, not his family, not his best friends. Some might call it denial. I actually think he was just plain mad. He finds pity objectionable, and he certainly didn’t want anyone feeling any for him. If he was fearful, the fear was far overshadowed by the anger he had for even having to entertain that emotion.
I wanted to “fix” it, so a few months after his diagnosis I participated in the MS walk. The deal we made was that I would reach out to my friends and acquaintances, but not to his or our shared friends. The support of the hockey community was overwhelming. Players and their families showed up and walked with me and helped raised money for the MS Society. Right after that, however, Jeff completely retreated. He didn’t want to meet or see anyone that knew he had MS. He avoided everyone associated with my world, and I learned that his disease was not something I could talk about with anyone anymore. So, for the next 10 years, until just a few weeks ago, I did whatever I had to do to help keep his secret.
Once the slurred speech of that first exacerbation subsided, it was easy for Jeff to hide his disease. For almost a decade, as far as anyone could tell, he looked like everyone else. No one but those of us inside the walls of our home were aware of the severe pain in his legs, head, neck and back. Others didn’t realize that when he walked, his right leg was numb, nor could they see the welts on his body from the drug injections he gave himself daily to keep the MS exacerbations at bay. They didn’t know that he suffered from a disrupted sleep cycle, typical of MS, and that insomnia made it impossible for him to sleep through the night. He would regularly pace at 2 a.m., or I’d find him asleep, face first on the floor of his office most evenings, as he tried but failed to work through extreme fatigue.
Jeff didn’t just hide MS from others; he was stubborn about admitting the changes to himself. No matter how bad it got, and how obvious it was to the kids and I that what he was going through was a result of his disease, the majority of the time he just flat refused to accept that MS had any impact on him whatsoever. The pain, fatigue, tingling, mood swings, weaknesses… all of it he would attribute to something else.
Since he was diagnosed so soon after we were married, I’m not actually sure if it’s just who he is or who he became, but Jeff never rests. He is always busy getting things accomplished. Despite the challenges of his disease, he’s built a successful career with a large medical company. We had our second daughter, Kylie, just after he was diagnosed, and he is an active dad who gets both girls off to school each morning while I teach. He often volunteers at their schools, and he coached both of their soccer teams.
Multiple sclerosis symptoms are much worse in heat, and patients are advised to avoid hot conditions. Coaching soccer in the very hot and humid D.C. summers triggered many MS symptoms. The team parents had no idea that Jeff was self-conscious about his short runs on and off the field, deeply embarrassed by what he thought were clumsy warm-up kicks to the goalies, or that he would be in pain and physically and mentally drained for several days after coaching through hot weekend summer tournaments.
The reality of MS had begun to set in, but it would be a short jog through the woods this past summer that would be the turning point – the exact moment Jeff would no longer be able to hide his disease from anyone, most importantly, himself.
Our neighbor, and Jeff’s very good friend, Brent, invited Jeff to do a “Spartan Race” with him. One of Jeff’s favorite activities has always been trail running. So, with obstacles, mud, and other craziness thrown in, Jeff jumped at the chance and signed up right away. It had been a while since he had gone for a run. He didn’t realize that in the time that lapsed, lesions in his brain and spinal cord had grown, and his MS had progressed to a point where his light run would bring on a personal low that would alter the course of his life.
Jeff was less than one mile into his planned five-mile run when his right leg began to drag. His foot and leg swung as if he were a wooden puppet with his only control at the hinges of the knee and hip. It felt like his leg was asleep. He simply couldn’t run. He hobbled home. When he came through the door he didn’t speak. He didn’t have to. I knew.
A few days later he tried again. He returned home muddy and bloody. He had fallen multiple times. This time he spoke, but the words he used to describe himself were so crude and demeaning that I just can’t bring myself to put them on this page. It had been more than 10 years since his diagnosis but it had finally hit him: He had multiple sclerosis, a progressive, debilitating disease for which there is no cure and whose cause is unknown. It wasn’t just that he couldn’t run anymore that was so hard. It was the realization that MS was now taking away function, his body was beginning to succumb to the disease and his future was unsure. In his own way, Jeff finally grieved.
Jeff called the people running the race and asked them to withdraw his registration and donate his registration fee to a charity. Then he called his friend Brent and told him he wouldn’t be able to run the race with him. He then told his good friend of five years the truth – that he had MS and that he was no longer able to run. Making this phone call was excruciating, a difficult blow to a man as proud, athletic, and self-reliant as my husband.
For the next three weeks Jeff was miserable to be around. The kids and I had lived through the waves of severe depression his drugs had caused before, but this time was different. Before, he had been short-tempered and angry; this time he was emotionally absent. When he was home, he disappeared into his office and wouldn’t eat with the family. Then one day I came home from work and found him on the family computer looking up Mt Kilimanjaro. I hadn’t seen my husband smile in weeks, but there it was, a smile on his face when he looked up at me and announced, “I’m going to Africa and I’m going to climb Mt. Kilimanjaro.”
Any spouse who lives with a person who has MS has challenges, and while I can’t say I’ve been perfect every day, I have always tried to be supportive. But this time I found myself saying out loud the first thing that popped into my head, the least supportive thing a wife in this situation could possibly say: “What the hell?! You can’t even run through the backyard!” There’s no excuse for my reaction, but there is a reason; I knew all too well that determined look in his eyes, and this new approach of his to “beat” MS terrified me.
After a little more research, Jeff decided that Mt. Kilimanjaro – while challenging due to the altitude – was “just a hike.” He wanted to do something harder, a more technical climb that would allow him to push his physical limits, so he set his sights on an alpine climb of Mt. Whitney in California, the highest mountain in the lower 48. This is no small feat. The summit of Mt. Whitney stands 14,505 feet above sea level, and then there is the snow, ice, and cold to contend with. I begged him to try climbing something smaller first, to test his abilities and then climb Mt. Whitney a year later, but he said “I want to climb it while I still can and I might not be able to a year from now.” His last MRI showed new lesions, two in particularly worrisome spots on his brainstem and spinal cord. He’s right; his future is uncertain, and there was simply no changing his mind.
Among the things Jeff loves to do but can’t anymore is run, and it does bother him, but that loss lit a fire in my husband. Now that he’s striving toward this ambitious goal with a new training regimen, Jeff is genuinely happier than I’ve seen him in over a decade. It took 11 years, but Jeff is no longer embarrassed to admit that he has multiple sclerosis. He is proud and happy to share his story. He is hoping that his quest for the summit of Mt. Whitney will inspire others with MS or other challenges to look for the things they CAN do, to find joy in setting goals and striving to achieve them.
Editor’s note: Jeff Marco came within 350 ft. of the summit of Mt. Whitney in 2012, but reached the summit on his second attempt one year later.
Wendy Marco is the owner of ColdRush, a company in suburban Washington, D.C., that provides ice hockey skating instruction. She works with children up to NHL players. She has a communications degree from Texas A&M University with a minor in Theatre, and was a television news reporter before she started ColdRush. She grew up on the ice and was a competitive figure skater for over 10 years.