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MS Through A Photographer’s Eyes

Hannah Laycock's vivid photography shows life from the perspective of someone with multiple sclerosis.

Hannah Laycock was diagnosed with relapsing remitting multiple sclerosis in 2013. As a photographer, Laycock has started to explore what it means to live with a degenerative disease through her art. Her photo series, Awakenings, explores her journey through diagnosis to find a new normal in a changing body. contemplative and sensuous work on MS contributes to contemporary photography, and to wider illness narratives. She’s exhibited worldwide, and her latest photo series, The Vessel, was recently commissioned by Fòcas Scotland.

Contemplative and sensuous, Hannah’s work not only is making an impact in the world of contemporary photography, but in the wider narratives of illness and what it means to be normal. She’s exhibited worldwide, and her latest photo series, The Vessel, was recently commissioned by Fòcas Scotland. Folks sent Amy Mackelden, a writer living with the same condition, to talk with Hannah about how her diagnosis has changed her, how she incorporates the condition into her art, and what she hopes to accomplish next.

When were you diagnosed with relapsing remitting multiple sclerosis, and how did it change you?

I was officially diagnosed with MS in July 2013. I’d recently started to play squash again, which I hadn’t since I was about 16 years old. After the first session, I noticed a pain underneath my right shoulder blade, which progressed into numbness across my chest and down my right side. It was something I had never experienced before.

My doctor did some preliminary blood tests, but couldn’t find anything. I discussed my family medical history, my main concern being that my dad has Motor Neurone Disease (ALS). I was referred  to neurology to have an MRI scan.

I wasn’t expecting the news—that I had multiple sclerosis. Because my symptoms had faded and it was my “first” attack, they couldn’t quite make the diagnosis official until I had another relapse. In July 2013, the news was confirmed and I was then offered drug treatments. The whole experience felt like a dream; as if I was in someone else’s body.

An artistic photograh of a nude woman standing with her back to the camera with a cut down her spine.

Nervous System by Hannah Laycock.

I wasn’t expecting the news—that I had multiple sclerosis.

What was your career like before you were diagnosed?

After creating a project about my dad’s Motor Neurone Disease for my final year project at Brighton University, I felt creatively and emotionally jaded. Most of my energy went into my day job working as a Studio Manager and Production Assistant for a fast-paced creative digital agency. Although I enjoyed where I worked, it was stressful.

Why did you decide to start using your body in your photographs?

The fact that I use my own body in a lot of my work, almost like a performance piece, I don’t recall it being a conscious decision. It was more of an intuitive process. I was organically drawn to use this method as a way of translating how I felt, and still feel, living with a chronic condition.

It felt like a natural thing to do, being that I work with the experience of MS and how this affects my feelings and emotions. I feel at ease translating that through the use of my body. MS symptoms make me acutely aware of my body and what it feels, or in some cases, what I no longer feel.

It also gives me a sense of liberation, being playful with my body. Instead of MS choreographing what my body does, I work with it, rather than going against it and letting it consume me. In this way, the work makes me feel free and unrestrained.

Instead of MS choreographing what my body does, I work with it, rather than going against it and letting it consume me.

How do you come up with your ideas?

Ideas come from various sources, such as a passage from a book I’ve read, poetry, or the work of other artists. Ideas can come from something that appears quite mundane or simple. When I’m not trying to think up an idea, that can be when it strikes.

A woman standing in the forest with a cloud of smoke hanging before her face.

Brainfog by Hannah Laycock.

Your photos are often raw, exposed, and extremely intimate. Are you ever nervous about this approach?

I think with anything, it’s always healthy to feel some nerves. However, when executing raw and intimate subject matter, you need to have a healthy balance of assertion with exposing yourself in conjunction with those nerves. After all, if you are going to expose yourself, then you need to be sure of what and how you feel and why you are doing it. Otherwise, the work can come across as insincere and, perhaps, a little naive.

People do find some of the imagery quite intense, but I don’t see that as a negative. To me it means the work is translating what I had intended; it lays bare the reality of emotions people can experience with MS.

What does your MS medication mean to you? How does it affect you?

I was very much against medication for the first two and a half years after my diagnosis. I’ve never really been someone that felt the need to rely on medication.

If you are going to expose yourself, then you need to be sure of what and how you feel and why you are doing it. Otherwise, the work can come across as insincere

Prior to MS, I had been a healthy young woman from healthy stock. But before commencing treatment, I had experienced some pretty major changes in my life, such as relocating back to Scotland after living in Brighton and London (in the south of England) for 10 years. My body took the brunt of all the changes. My health deteriorated and I relapsed pretty badly. I lost the hearing in my left ear; my balance was way off. I had vertigo and had to use a walking stick and stop driving. I was majorly fatigued and felt like I was sinking fast into ill health. It was at that point that I decided medication was the only way forward to help me climb out of what felt like a bottomless pit of decent.

Two and half years later, I’m still on the same medication. An IV infusion every four weeks, which means I have to go to hospital each month. But since then, I’ve been relapse free. I still deal with daily MS symptoms, but they have become my “norm” and I am able to manage most of them. Others, I’ve had to have medical procedures to get a handle on.

In the grand scheme of things, I now live well. I have a sense of being back in control of my life. The only part I feel conflicted with is the fact that I have to go to hospital each month to have my dose of medication. This makes me feel a little locked in at times, and not as free as I would like, to just spontaneously disappear on a trip somewhere.

A woman with her face underwater in a bathtub, bleeding from her mouth into the water.

Forced to Gasp by Hannah Laycock.

Do you work in any other mediums aside from photography?

Not to the same extent as photography. Sometimes I dabble with a bit of drawing. I have also taken up embroidery for the first time this year. The plan is to incorporate that into new work that looks at the fragility of the human body from the perspective of disease. It will be quite a lengthy process; an installation piece working with textures and color. Color tends to play a big part in my work and is how I communicate what I’m experiencing.

What do you hope viewers take away from your photographs?

Curiosity to find out more about MS and other chronic conditions. A sense of confidence and empowerment within their own lives. To help others through times of adversity.

My next project, The Vessel, is about the experiences of relationships and intimacy through the lens of disease and diagnosis. I was once a person of a loved one diagnosed (when my dad found out he had Motor Neurone Disease), and then I became a person diagnosed myself (MS).

Don’t wait until you’re diagnosed with a serious illness to make you really appreciate all the things in life that bring you joy.

If you could let the world know just one thing about life with MS, what would it be?

We don’t get many chances in life, if at all. Don’t wait until you’re diagnosed with a serious illness to make you really appreciate all the things in life that bring you joy. Pay attention to the little things. Start appreciating everything now.

Hannah was interviewed by Amy Mackelden, who also has relapsing remitting multiple sclerosis. Amy is the weekend editor at Harper’s BAZAAR, and is developing a project about chronic illness called MS Is My Boyfriend.

Health & Fitness

Jumping For Her Life

This doctor-turned-jump rope champion tackled her multiple sclerosis diagnosis her own way, racking up gold medals in the process.

According to Lucie Linder, sometimes you have to do the most ballsy thing in order to find yourself.

While this sounds like something you’d read on a motivational poster, after a few minutes in Lucie’s company, it’s clear the 50-year-old New Yorker is not one for empty platitudes. After all, this is a woman who left a promising medical career to become a jump rope athlete, and later, tackled an MS diagnosis in her own singl—minded way.

Lucie Linder, posing with some of her many jump roping medals.

Raised in a French Caribbean family in Queens, Lucie excelled at high school. Encouraged by her family, she went on to medical school, graduating at the top of her class and going on to work out her residency at Montefiore Hospital in the Bronx. However, two years into her career, her world came crashing down, as the abusive childhood she’d so effectively repressed came flooding back during a pediatrics placement.

“It was getting too close for comfort,” Lucie says. “I’d locked all of this stuff up tight, but it just started coming out. I’d finish an 18-hour shift and go home and cry all night. I started thinking about why I was here. I realized it wasn’t what I wanted to do. I did it because I wanted to please my family, to get love and attention from my mom.”

“I started thinking about why I was here. I realized [being a doctor] wasn’t what I wanted to do.”

Lucie decided to turn her back on medicine. She calls it an epiphany. Her friends and colleagues called it crazy, and her family wanted nothing to do with her. “People thought I was insane, or depressed. How could I step away?”

But step away she did, moving into a new era of her life that saw the self-described Type A overachiever turn her obsessive need to succeed to a new goal: becoming a jump rope champion.

Around the time she quit medicine, Lucie had been jumping rope for a year or so. As someone who was “never athletic,” she was surprised when she picked up a rope at a gym one day and found she had a natural sense of rhythm and coordination. Jumping rope was easy, and she loved it.

“[Jumping rope] is such a high, I feel like I can do anything. It requires so much skill and co-ordination; it’s beautiful when you jump rope beautifully.”

Jumping became her hobby, and then, her therapy. That is, until late one night, when she saw something on television that made her sit up straight with excitement.

“[Jumping rope] is such a high, I feel like I can do anything.”

“One night, I sat down on the couch and turned on ESPN and saw kids jumping rope really fast. I wanted to do that.”

With characteristic single-mindedness, Lucy got in touch with USA Jump Rope, the leading American jump roping body. It took a lot of calls, but eventually, she convinced them to let her compete in the 2005 National Championships without going through any qualifying rounds.

“They told me, ‘good luck, because you’re going to get destroyed out there’.”

She wasn’t destroyed: Lucie wound up winning three gold medals in her age group. “I was the oldest in that group and I beat the best in the US.”

Lucie Linder has found jumping rope to be critical in her fight against MS.

Her success spurred Lucie to create a business around her skill, a jump rope gym where kids could get healthy, and go on to compete, becoming “an army of champions in New York.”

But in 2007, she hit another speed bump. This time, it wasn’t her past, but a glimpse into her future that tipped her world upside down.

“I started having numbness in my fingers, my eyes started burning, and I had severe headaches. The doctors thought it was because I’m highly strung, or maybe I was depressed because I left medicine. But I’m a doctor, I knew something was wrong.”

Tests showed Lucie had multiple sclerosis. “I said, what? No,” she remembers. “It can’t be. I was jumping rope like a fiend. My motor function skills were on point. You can’t tell me I have MS.”

“I was jumping rope like a fiend. My motor function skills were on point. You can’t tell me I have MS.”

But when an MRI scan highlighted the lesions on her brain, she knew it was true. “They told me not only would I not be able to compete anymore, but that in eight months I’d be in a wheelchair.”

Lucie started a course of Rebif (interferon). Determined to not lose any ground with her exercise regime, she kept up her punishing jump rope routine and kept to a healthy diet. But eventually, she tired of the side effects, as well as the cost. At two thousand dollars a dose, Lucie couldn’t afford to go on paying for the treatment.

“I decided to go the holistic way. My doctors told me I was crazy: I had numbness, my knees were buckling, I was walking with a gait. But five years ago they’d also told me that I’d be in a wheelchair in eight months.

Lucie doing what she does best in her new home of Stockholm.

“Scans showed the lesions were still there. My doctor was confused that I wasn’t getting any worse. I’d been doing something that was keeping this from progressing.”

Four years down the line, Lucie’s pretty stable, although she still suffers from headaches, tingles in her hands and knee weakness. She’s also seen more change in her life: after a whirlwind romance in 2013 with her now-husband, Staffan, she moved to Stockholm, Sweden.

Her new life has thrown up a whole lot of challenges, including an initial decline in health. The stress of adjustment sent her to the local MS clinic for an intravenous course of Solu-Medrol.

Determined to create an army of Swedish jump ropers, Lucie’s teaching the sport in schools and to children in the city’s poorer areas.

There were also a few unexpected cultural differences. Determined to create an army of Swedish jump ropers, Lucie’s teaching the sport in schools and to children in the city’s poorer areas. She’s built up a successful business, but it hasn’t been easy. Swedes are generally reserved, says Lucie, and people sometimes don’t know how to respond to her natural exuberance.

“Sweden is very white, people are shocked to see a big, black, loud woman, coming here trying to shake it up.”

But Lucie’s persisting. And no matter what’s going on in her life, she still jumps rope every single day. “It’s exhilarating, I lose myself in it. It’s the crack cocaine therapy of my day. It makes me feel that no matter I want to conquer, I can do it.”

Profiles

How Frida Kahlo Helped This Burlesque Dancer Recover From Paralysis

When Irene Delgado was diagnosed Guillain Barré, channeling the Mexican feminist icon helped her recover, and get back on stage.

The day after she left the hospital, Irene Delgado was on stage, in a floral crown, peasant blouse, turquoise skirt and black Mary Jane flats. She stripped her costume to reveal a medical corset, just like the ones Frida Kahlo wore. At the end of the act, Irene broke herself out of the corset, put her arms in the air, and cried, “I’m free!”

It was a fitting gesture. Like Frida, Irene had suffered debilitating pain, undergone intensive tests and diagnosis: X-rays and spinal taps, blood transfusions and physical therapy, after six weeks in the hospital.

Irene has soulful eyes, a shaved head, tan skin and a free, infectious laugh. She’s 48, but it’d be hard to guess her age, and harder to tell that beneath her small frame is a whole lot of fortitude. Irene was born and mostly raised in the Bronx to Puerto Rican parents. For the past 20 years, New York City had been her home, while she worked as a burlesque performer and costume designer and stylist and other odd and end jobs.

48-year-old NYC burlesque performer Irene Delgado.

One early morning in November 2016, she woke up with a strange, pulsating sensation going down her legs. The painful sensation continued through the day. As she sat, cutting fabric, she felt her muscles spasming. When she attempted to relax, later, the sensation returned: a shock of numbness and electricity, pins and needles. Not only was it going down her legs and feet, but it had started moving into her arms. “I freaked out,” Irene said.

On her first visit to the emergency room at her local hospital, she waited for five hours, in so much pain that she couldn’t think. When she stayed in any position for too long, she started to cry. Her legs were jerking, out of her control. “I didn’t know what was going on. If I had experienced something like this before, then I could pinpoint it.” But the pain was completely foreign, and the doctors gave her few answers. They sent her home with an anti-inflammatory shot, and blamed the pain on anxiety.

She returned to the hospital three more times over the next two weeks. Each time, she left without a diagnosis. In the meantime, the pain escalated. She was so weak that she could hardly eat. She started losing the ability to use her hands. When Irene had to finish a costume for a client, she asked a friend for help, and directed on exactly what to do. For a short while, she grew hopeful that the pain had plateaued. But when it returned, it started to fire up her lower back. She couldn’t sit down and limped when she walked.

Finally, a friend who worked as a ER doctor drove her to NYU Langone to find answers. When she went into the ER that day, her heart rate was 138 rpm, beating so rapidly that she was gasping to breathe. It wasn’t her anxiety that was causing her suffering: something was going on inside her body.

She stayed at the hospital for the next six weeks. Every day, there were a series of tests and attempts at diagnosis. Three vials of blood drawn every day, MRIs and CT scans, X-Rays, procedures that Irene had rarely experienced before. “There was a piece of me going everywhere, all over the United States,” Irene says, laughing.

Doctors speculated that she might have had Multiple Sclerosis, and she tested positively for Lyme disease. Then they noticed the excessive proteins she had in her spinal fluid. After a spinal tap, they told her that she likely had a version of Guillain Barré Syndrome, a rare autoimmune condition in which her body viewed the proteins in her spinal fluid as foreign invaders and started to attack itself, damaging her peripheral nervous system.

For treatment, she underwent five days of plasmapheresis. The doctors hooked up a PICC line from her neck to her heart. The line filtered out her blood and replaced it with fresh plasma. Irene didn’t know what the illness meant for her future, but she and her partner, photographer Adrian Buckmaster, tried to make the best of the stay. Buckmeister recreated the iconic photo of Frida Kahlo in her hospital bed with Irene’s costume. They befriended the nurses and attendants, and spent a happy Christmas in the hospital, when a steady stream of visitors brought food and coquito liquor from “ten in the morning until ten in the evening.” Irene’s friends created a GoFundMe, and in three days, it raised enough money for Irene to pay her rent until June.

In the next three weeks, Irene slowly relearned to use her limbs. “I felt like I was a newly born baby.”

In the next three weeks, Irene slowly relearned to use her limbs. “I felt like I was a newly born baby.” Not only had the illness disrupted her nerves, but the extended bed-rest shortened her muscles. “When I left, I couldn’t walk properly, couldn’t think, I was taking nine different medicines, I was very emotional.” It was hard to explain what she’d gone through, hard to explain the intensity of her experience.

After getting sick, Delgado turned to Frida Kahlo for inspiration.

The night of her Frida Kahlo performance, Irene took two Oxycodins and channeled the artist on stage. Frida had always been Irene’s favorite painter, but now, she had a different understanding of the artist’s work. In her paintings, Irene says, “you can see her loneliness, her fragility… and you can see her strength.”

It was a physically and emotionally grueling experience. The actual stage time lasted only five minutes, but there were hours of waiting and prepping and primping. For Irene, simply sitting down was torture. But she wanted to keep her performance slot: “I didn’t want to be forgotten about.”

Over a year since the illness hit, Irene is still numb from her knees down to her feet — “if I were to scratch my leg, I can’t feel it.” The worst of illness has passed, but Irene thinks she’ll live with the residual numbness for the rest of her life. Irene is still sewing gowns and coats, and performing on stage. The illness has changed her life in one major way: it helped her start a new business, a line of scented creams and lotions and body oils and bath salts, scented and lovely and infused with transdermal magnesium, which she discovered while fanatically looking for ways to reduce pain.

The afternoon we spoke, Irene’s partner was Photoshopping each product in the line, adjusting the curves to reflect the warm or cool shadow of a face cream. She sold the line for the first time this February at a market at a kinky art salon and mixer, and plans to open an Etsy shop. Adrian and Irene have been together for twelve years, but in the skincare line, Adrian saw something different. “This is very special, “Adrian said. In creating the line, he saw something in Irene manifest, something he thought she could do all along. “I guess it took going through the pain,” he said. “You changed your view of the world in many ways.”

Irene made creating the skincare line look easy, because she loved it. And perhaps she’d been gearing up for it all along: Irene had worked for Sephora when it first opened as a boutique in NYC, and had spent years traveling the country doing Dr. Brandt’s microdermabrasions on clients. “I sold the hell out of other people’s products,” she says, “now it’s my turn to build my own.”

Health & Fitness

Pumping Iron With Multiple Sclerosis

Dave Lyons was diagnosed with multiple sclerosis late in life, but it didn't stop him from becoming a bodybuilding champion.

For bodybuilders, the ultimate reward is the chance to compete and win. That’s a reward Dave Lyon knows well.

Although he started at 50, Lyons, a California bodybuilder and personal trainer, has stood on the victor’s podium many times. Yet ask Dave what his greatest achievements have been, and he won’t talk about the highs of pumping iron, or the thrill of competition: he’ll cite his contributions to fitness advocacy for the disabled, which led to him winning the Lifetime Fitness Inspiration Award from the Global Bodybuilding Organization in 2016. (His second proudest moment? Meeting Arnold Schwarzenegger when he was presented with the Health Advocate Lifetime Achievement Award in 2015).

Initially misdiagnosed with brain cancer, Dave Lyons found out that he had muliple sclerosis late in life after experiencing pain and numbness through his whole body. Rejecting doctors’ claims that he would be confined to a wheelchair for the rest of his life, Dave pushed himself into his training, eventually leading him to develop his MS Fitness & Wellness Specialist course, which teaches personal trainers how to work with clients who have MS, and even support them as they enter the fitness competition circuit.

Folks spoke with Dave about fitness, positive thinking and living with MS. Dave’s answers have been edited for length and clarity.

Tell us about life before your diagnosis.

Bodybuilder Dave Lyon competes despite his diagnosis with MS.

Before I was diagnosed with MS, I was a healthy and very active fitness professional who owned gyms and trained clients in California. I trained as a boxer and martial artist, and later, I entered the competitive bodybuilding circuit. I also pursued the entrepreneurial life with a TV and film production company, called Bishop-Lyons Entertainment. Between that role and bodybuilding training, my days were packed from early morning until evening. I had endless energy, slept very little and was always looking for my next accomplishment.

Tell us about the day of your diagnosis.

Initially, I was admitted to a cancer hospital, due to a major physical attack on my nervous system that left me paralyzed from the chest down. On the fifth day of tests, including MRIs and a spinal tap, I was informed that I didn’t have cancer after all, but multiple sclerosis. The information would have knocked me off my feet, but I was already sitting down! I took in all my doctor had to tell me, and tried to process this outline of my new life, but I couldn’t. I looked the doctor in the eyes and told him: “You may say I will be wheelchair bound within a few months but my faith and my will is stronger than your diagnosis.”

What were some of your initial concerns or fears?

Initially, I had no fears. I am a fighter and I face every opponent with the confidence I would win. MS was no different. But that changed quite rapidly. As I surfed the Internet and read so many horror stories about healthy people like me who were now in wheelchairs or bedridden, my fighter mentality took its first devastating punch. The odds were against me: I began to worry that I wouldn’t be able to beat MS like I thought. I started to fear that the numbness, pain, and other symptoms would end my athletic dreams, including bodybuilding. I became depressed [for about a year] until I said: enough with the pity party! I still had to try to fight.. So I set my mind on the Rocky theme, and got to work.

How did exercise help you to adjust to your diagnosis?

I knew, from my years as a trainer and athlete, that if I could strengthen my body, I could beat MS. Exercising and bodybuilding made me feel like I could connect my mind to my extremities, despite the nerve damage standing in the way. And it seems to have worked. Once I started training again, I regained all the muscle I had lost during the year-plus I spent wallowing in my diagnosis. I was now headed to a bodybuilding competition at 50 years old with MS. No one had done that before.

What have been your greatest challenges?

The hardest part of bodybuilding with MS is coordinating the weights without injuring myself. I’ve torn muscles because I couldn’t feel I was pushing too hard. Despite those challenges, though, I’ve learned to listen more carefully to what my body is telling me, and never try to ego lift: only ever lift what I know I can do without hurting myself.

How important is mental strength when learning to live with a chronic condition?

Your mind must be mentally fit before the body can follow. In my book, Everyday Health and Fitness with Multiple Sclerosis and my fitness trainers’ course MS Fitness Essentials, I speak extensively on this topic. Mental Fitness is the core of being able to conquer any obstacle in life. Set your mind in a positive, goal-driven place and all else will fall right behind it.

What are some of your biggest fitness accomplishments, after your diagnosis?

Dave and his wife, Kendra, cofounded the MS Fitness Challenge charity to raise awareness about the importance of fitness to people with multiple sclerosis.

At first, my goal wasn’t to compete, I just wanted to work out again. Then, almost two years after the diagnosis, I realized I could do it. That year, I won the Most Inspirational Bodybuilder award at the 2009 Flordia State Championships. After that, my wife Kendra and I founded the MS Fitness Challenge (MSFC) charity to raise awareness on the importance of mindset, fitness, and nutrition in the battle against MS. I was honored by Arnold Schwarzenegger with the Health Advocate Lifetime Achievement Award, and have stood on stages at the National Fitness Hall of Fame with the Special Recognition Award; the Global Bodybuilding Organization with the Lifetime Fitness Inspiration Award; and also received other accolades. It’s been a humbling but extremely rewarding journey.

What lessons have you learned during this time?

The most important lesson I have and still am learning is I may be strong, but I am not Superman! There is a time I need to say to myself: STOP! I have a tendency to push too hard and too long at everything I do. So the importance of slowing down and recharging my body is a lesson I have had to learn after being diagnosed with MS. I have also learned that MS is not who I am, but it’s what I have. I control it, it does not control me. And I hope to instill this same mindset into others, inspiring them to do what I did, and turn the worst day of my life into a reason to achieve better fitness.

What do you want people to know about MS?

MS is just two letters… period! It does not define your life or limit your goals unless you let it. Yes, MS has some terrible symptoms, and it may be incurable, but there are many ways to manage it. Stay active, stay motivated, and focus on winning, because replacing negative inaction with positive action can make a tremendous impact in your life with MS.

Essays

My Brother’s Keeper

The hardest thing about marrying off my brother was trusting his new wife could care for his multiple sclerosis.

It’s Caregiver Week on Folks! This week, we’ll be telling stories about the people who provide physical and emotional care for the people they love most. Learn what PillPack can do to help caregivers here.


When I remember it, the sound my brother’s head made as it struck the foyer wall still makes me cringe.

This, the same cowlicked head I nuzzled up against as a child. This, the same head I consoled, close to my chest, after formative teenage breakups. This head, which bobbed gently in time with mine on summer nights, as me and Matt drove home, singing along to the radio at the top of our lungs.

That sickening thud: How could Matt’s skull make such a sound? And will his new wife–the one who will need to take care of him from now on–know what to do when she hears it?

It was after midnight, a day or two before New Year’s Eve in 2014. Although our social lives were happily intertwined, we’d made different plans that evening. By the time I came home, Matt and my parents were both asleep, so I sat down in the living room to watch TV.

Dan & Matt Hajducky at Jones Family Farms in Shelton, CT

Out of the darkened hallway he came, his legs wobbling beneath him. There was untold helplessness in his ashen eyelids and pallid cheeks.

Matt was 23 at the time, a former high school linebacker who had gone on to play Division III football at Springfield College. He was the type of player that anchored a defense, a team leader who caked his cheeks in eye black before the game, who threw down heavy weights with cacophonous aplomb. He seemed to dream about Friday night lights all week long. Weakness, mental or physical, was simply not in his DNA.

So I assumed he was drunk. But I should’ve sensed something else was wrong.

“Been there, buddy!” I said, prepared to tuck him into bed with a bottle of Advil in the nightstand.

Sweat glistened on his forehead, his body hot to the touch.

“No, no. I didn’t have…anything…to drink,” Matt whispered through shallow breaths. 

Hunched over the sectional, cushions clenched tight in each fist, he glanced around the living room. “I don’t feel…so good, Dan,” he gurgled, a far-off look in his eyes. 

Then he released the couch cushions, stood upright, and lost consciousness. I caught him.

There’s a terrifying heaviness to caressing the forehead of an unresponsive family member. I put a pillow beneath Matt’s head. He was disoriented; his eyes were fluttering. He wasn’t speaking. I screamed for my parents, then called 9-1-1.  

There’s a terrifying heaviness to caressing the forehead of an unresponsive family member.

At the hospital, Matt had a CAT scan for a possible concussion and was treated with fluids for a bacterial infection. While the IVs dripped, we passed the time watching Nickelodeon until morning, talking about anything but what had happened. 

The doctors told us there was no concussion, but there was an awful lot of smoke for there to be no fire. Matt wanted to get an MRI. But it took months to get any answers.

In May, I was five months into a new job when Mom asked if I could leave work early. There was finally news with Matt, and it was better discussed in person. Sitting on the same living room sectional Matt had fainted in front of that night—the “bad news sectional” where, in previous years, I had learned of Mom’s breast cancer and Nana’s Alzheimer’s—Mom and Dad said that doctors had found lesions on Matt’s brain. The tingling fingers he’d complained about off-and-on, which we had all long assumed were pinched nerves coming from football, were actually the warning sign we’d all been missing.

Matt had multiple sclerosis, or M.S.

Matt Hajducky, seemingly the picture of good health.

My father is a stoic man, not one for tears; to see him sobbing rattled me. But my mom, a cancer survivor who comforted her mother through dementia, was more optimistic. 

I digested and asked the necessary questions:

“Did they catch it early enough?” (“Yes. He’s young. Usually M.S. isn’t caught until later on, which is when things get complicated.”)

“Will he have to get treatments?” (“Once-a-month injections for now. Later, depending on progress—his and modern medicine’s—hopefully just a pill.”)

“How’s he doing?” (“Really, really well. Although his doctor says he shouldn’t have gluten anymore—so your homemade pizza nights might be tough.”)

With that, I nodded, hugged my parents, and went out to water my garden. I pulled weeds and plucked cucumbers and tomatoes from their vines. I stockpiled basil for pesto I would make later. In some strange way, I thought that if I could tend to fruits and vegetables, maybe I could tend to what was wrong with Matt,.

 Matt came home from work a few hours later with the same all-encompassing, room-illuminating smile as always, as if nothing had happened. He took his diagnosis in stride, adapted to his circumstances. Must be in the genes.

From then on, our entire family came together to take care of Matt. We did our best to make dinners sans gluten. (Admittedly, gluten-free pizza dough was a trial-and-error process.) Matt started running 5Ks and dove into his—admittedly new—workout regimen: less weightlifting, more cardio. One weekend in April of 2016, we gathered a crew and went to a walk for M.S. in Baltimore. Hundreds of people, all affected by the same unpredictable illness, smiling and laughing while brandishing t-shirts that read: “Together, we will end MS forever.”

In its own way, MS had drawn our family closer around Matt, while simultaneously bringing us into a larger family in the multiple sclerosis community.

In its own way, MS had drawn our family closer around Matt, while simultaneously bringing us into a larger family in the multiple sclerosis community. Yet when it was time for me to welcome another person into our family, and turn over caregiver duties to someone else, I paused.

Matt and his new wife, Courtney.

In October, Matt got married to his long-distance girlfriend of more than half a decade, Courtney. I like Courtney; I know they’ll be happy together. But even as I gave my best man speech, the emotions I felt were bittersweet. I’ve always been my brother’s keeper, but now, our life together was seemingly ending. Yet could Courtney really take my place, especially with Matt’s M.S. as a factor? Will she know what to do if Matt loses consciousness? On the bad days, when he feels everything and nothing, will she be able to make him laugh? When he feels disillusioned with the hand he was dealt, can she bring him back down to earth?

Time will tell. These aren’t questions to be answered in haste. But Matt still makes it to movie and board game nights, he’s still a regular at trivia, and pumpkin picking has never been so competitive. Only now, my sister with the Southern drawl comes and I’ve never seen my brother happier. For the first time in more than six years, the woman he loves lives a fingertip away. The other night, we gathered for dinner and the Patriots-Falcons game at Mom and Dad’s house. Around the beginning of the second quarter, Courtney started to nuzzle into Matt’s shoulder and fall asleep. But Matt kept on talking football with me, laughing his full-bellied chuckle, discussing Halloween costumes and making plans to see Justice League.

It was then that I realized how wrong I’d been. A new chapter didn’t mean ours was over. A chapter is, by nature, forever entwined with the ones that come before and after. We might be older, one of us married, but we’re still the same boys who played Whiffle Ball at Nana and Papa’s, basking in the sun’s glow after sliding into home. We’ve just got some tread on our tires now.

Profiles

Mastering Mountains With MS

Nick Allen hasn't let multiple sclerosis get in the way of his love of mountain climbing.

It’s been two years since Nick Allen climbed out of a wheelchair, and up a mountain. It sounds like a textbook success story, but Nick says there’s a lot more to it.

Nick was the kid who dreamed about scaling mountains. His great Uncle was part of the team that taught Sir Edmund Hillary mountaineering, the man who went on to be the first to conquer the world’s highest mountain, Mount Everest.

A map of Everest was pinned to the ceiling above Nick’s bed, and he spent nights planning his own climbs, while getting outdoors with his father at every opportunity.

But, at age 19, Nick hit a wall. He began to lose function in his legs, then bladder. No one could tell him what was wrong. His health steadily declined, and two years later, he dropped out of school in South Carolina and returned to New Zealand to live with his parents.

He says those years, when he had no diagnosis, were some of the hardest.

“Because people keep saying “just harden up,” you start thinking maybe they’re right, maybe this is all in my head. You really have to fight that internalized stigma: it’s a whole other exhausting battle on top of your illness.”

“People keep saying “just harden up,” you start thinking maybe they’re right, maybe this is all in my head.”

Despite being in a wheelchair by the time he was 24, Nick kept fighting the expectation that if he didn’t push, you were less of a person–which he says probably made him worse.

Then, six years after he started getting symptoms, Nick was diagnosed with Multiple Sclerosis (MS).

“It was weird. I had this massive relief at conformation, at having a label. I went into the meeting with my neurologist and I was actually excited. But I came out and burst into tears. I was overcome with the realization of the permanence of this disease.”

MS affects over 2.5 million people worldwide. It has no known cause or cure. Attacking the central nervous system, its symptoms can include loss of balance and mobility through to paralysis, blurred vision, poor coordination, slurred speech, tremors, numbness, problems with memory and concentration, and extreme fatigue.

Selfie of Nick Allen.

But for Nick, his diagnosis didn’t slow him down for long. Determined to get out of the wheelchair, he started making radical lifestyle changes, which included challenging work in the gym and a strict new diet (the famous Terry Wahls protocol).

He regained the use of his legs, and began training for the climb that would consume his life for the better part of two years.

“I sold the wheelchair and bought a camera,” says Nick, who works as a photographer and writer. He also runs the charitable trust Mastering Mountains, which aims to help people with MS get outdoors, and is studying a PhD.

Nicks says the climb itself was the culmination of six years of work at the gym. He took the last nine months off work to train fulltime.

In 2015 at age 30, five years after his diagnosis, Nick climbed Nepal’s 20,000 foot Island Peak.

“Physically, climbing is so brutal. I went to Nepal weighing 187lb (85kg), and came back 143lb (65kg). I have a friend whose husband spends the month following a climb on the couch eating ice cream, and that’s as much about putting weight back on as it is the need to rest.”

But Nick didn’t take a break when he got home. Instead, he started writing a book.

To The Summit, is an autobiography that spans Nick’s life, an the struggle for a diagnosis and the aftermath, as well as the climb itself. Writing it was an unexpectedly emotional chore.

“I had to revisit the day I got diagnosed, the day I got out of the wheelchair… I was writing it in the university library and I’d stop, go out to the car and just sit there and scream and cry, because of how much stuff I hadn’t processed. It was very draining.”

Nick Allen on Kala Patthar.

The book was published by last year, and now Nick divides his time between work for the trust, his photography, a day job, and studying. It seems like a very full workload.

“I have a problem with overcommitting,” he laughs. “I went to a course recently about managing fatigue. It reminded me that I need to be better at saying no to things.”

But everyone wants a piece of the man who mastered the mountain, and the Trust alone demands a lot of his energy.

Mastering Mountains, which Nick set up before his climb, raises money for people affected by MS to overcome obstacles, change perceptions surrounding MS, highlight the importance of nutrition and exercise, and provide community.

Nick raised the first $10,000 for the Trust during his climb. Since then they have signed an official partnership with Multiple Sclerosis New Zealand, and awarded their first scholarship to a young woman last year.

“It’s exciting to be able to pass on some of what’s been given to me, to pay it forward.”

“It’s exciting to be able to pass on some of what’s been given to me, to pay it forward.”

He says it’s a privilege to meet other people with MS and hear their stories, but he struggles when anyone says what he’s done is inspiring.

“Sure, I have achieved some stuff. But it wasn’t just me. I’ve had so much help: my parents especially, for example. I lived with them when I got diagnosed, and the diet I do–no red meat, sugar, dairy, or fats–they made the meals and did it too. Dad would massage my legs for 45 minutes every night just so I could sleep.”

Mastering Mountains is a nonprofit Allen started to help people like him mountaineer.

Meanwhile, he’s working on the PhD exploring 150 years of writing about mountain climbing in New Zealand.

“It’s interesting to see how it’s developed. Now, people write about going climbing not just to conquer the mountains, but their own inner demons.”

He says that he was looking for some of those demons during his own climb, and the study is helping him figure out who he is now.

“My sense of masculinity before I got sick was so tied up in feats of physical prowess, and now I’m unable to do a lot of those things. So what is my identity, as someone with MS?”

As for what’s next, Nick says MS has helped him focus a lot more on the present. He says his biggest challenge is managing everything he wants to do within the confines of MS. He’s already started planning another climb for 2018.

“The future can look daunting, but that just reminds me to stay in the now and make the most of what I have.”

Q&As

When Jennifer Met Dan: An MS Love Story

When multiple sclerosis cost Jennifer the use of her legs, she never thought she'd date again. Then she met Dan.

Though it’s estimated that each week more than 200 people are diagnosed with multiple sclerosis, “the most widespread disabling neurological condition of young adults around the world,” it’s fairly rare to find two people diagnosed with the disease living together.

But that’s what happened when Jennifer Urick met Dan Digmann at an MS awareness event in rural Michigan in 2002, fell in love, and got married. True story: MS actually brought Dan and Jennifer Digmann together.

Though they both have a different form of MS (Dan, 44, has relapsing-remitting, while 42-year-old Jennifer’s secondary progressive MS took away her ability to walk at 28 years old), they both function as partner-caregiver to the other.

They have made it the mission of their marriage to speak out about the realities of living with MS–through their blog and book, as well through the National MS Society and various organizations around the U.S.–and they have taken their advocacy on behalf of people with disabilities to Washington, D.C.

Folks caught up with the Digmanns following a keynote speech they gave in March at an MS fundraiser in Houston.

Jennifer and Dan Digmann met each other during their own individual battles with multiple sclerosis.

Jennifer, when I hear you tell your story about how you were diagnosed fresh out of college, right at a time when young people feel most free and independent, it guts me. How did you process those feelings?

Jennifer: I think because I got involved with the National MS Society right away, I always met a lot of positive people wherever I went. I knew, ‘This is not going to break me.’ There was a self-help group in Flint, and they needed a leader. It was a challenge I knew I could do. I couldn’t necessarily be a speaker at that point, but I could put together a meeting, I could buy donuts.

Before I met Dan, I didn’t think I would ever date anyone. I had MS and I was in a wheelchair. I just wanted someone to be with, someone who understood what I was going through. … And for as much as it sucks now, tell me I’m not living a dream. Both my parents are here, I have awesome caregivers, I have an amazing husband.

Before I met Dan, I didn’t think I would ever date anyone… Tell me I’m not living a dream.

Tell me about one of your most trying times.

Dan: When I pulled my back out this past summer … I’m on the floor, and Jennifer’s on the floor. I couldn’t transfer her [to her wheelchair]. It was all I could do to call the paramedics. They got her on the bed, they got me on the stretcher. The whole time Jen’s alone in bed, and I’m in my hospital bed recovering, texting her. She called her mom and brother to help. You realize how much you depend on each other, you start thinking about everything we had planned …

Jennifer: That was, pardon my French, a shitstorm. That was when Cooper died [the Digmanns’ beloved cat ran away in the commotion]. I think we both said, ‘God is telling us to slow down.’ It’s just the reality that it took my mom and brother to do what Dan does, and they were both tired at the end of the day.

Have you ever had the thought that you weren’t going to make it?

Dan: I never thought that we were never going to make it. We have too many people behind us, we’ve got God on our side. I think it’s just being patient, asking, ‘How the hell are we going to get it done?’ It sucks, it happened, I hated it. But are you going to make room for better experiences to take up your time? We’ve had vacations or trips when there’s just really bad stuff that happened. You don’t let the bad stuff win.

What word do you use, humble? We’re positive, but we’re not Pollyanna about it. This is hard. I never said, ‘Why me?’ Jennifer was the answer to my prayers. That’s what you do, you find the lessons.

Photo: Emily Mesner

Jennifer, you’ve said that in your dreams you can walk again?

Jennifer: Yes, I have a lot of vivid dreams, I have dreams where I’m walking, and Crystal, my caregiver, has dreams where I’m walking. I believe that I will walk again. I have to believe that.

I never said, ‘Why me?’ Jennifer was the answer to my prayers.

How do you deal with the vulnerability that comes with disease and disability?

Jennifer: I feel pretty vulnerable right now. Not to get too political, but with all of the talk surrounding cuts to Medicaid, I fear the possibility that the Medicaid waiver program could be in jeopardy. Without that program [which provides 32 hours of paid in-home caregiving each week], I wouldn’t be able to live in my house. I would potentially have to go live in a group home. I don’t dwell on that vulnerability. I know it exists, but I also know I have good neighbors, good caregivers.

Does your advocacy work help you feel less vulnerable?

Jennifer: With the advocacy and the public speaking, it makes me feel stronger just knowing that at least I got my voice out there. Plus, we meet so many people. The networking really helps. And today was pretty darn good.

Dan: We knew there were going to be over 400 people [attending the fundraising event]. I just looked at her today, and she was talking, and I was so impressed and mesmerized. She just hit her stride, she was so in her element. We were in our element. No one can do what we’re doing, no one can tell our story.

Jennifer: And none of this would be possible without

Dan: Well, none of this would be possible without you.

Top photo by Steve Jessmore.

Q&As

Paralyzed by Multiple Sclerosis, A Writer Dictates His Novels

Acclaimed writer and guitarist Anthony Weller has been paralyzed from the neck down since 2010, but continues to pen novels by dictating to a live typist.

For two hours a day, Massachusetts-based writer Anthony Weller lies on his back, stares at the ceiling, and dictates to a typist the fictional “memoir” of Lorenzo Da Ponte, an 18th-century Italian librettist who collaborated with Mozart. Stricken with a rare and vicious form of Multiple Sclerosis a dozen years ago, Weller is paralyzed from the neck down. “Writing is the only thing I can still‘do,’” he says, though he can no longer type nor write by hand. Like many beloved authors before him—including Henry James, John Milton, Mark Twain, and Jorge Luis Borges—Weller dictates his work. Superhumanly prolific, Weller’s Da Ponte “memoir” will be his fourth book written using dictation.  

Born in 1957 in Macon, Georgia, Weller learned to read at four. Entranced by Peter Pan and The Wind in the Willows, he started writing little stories by age six. “I have a solid memory of lying on my stomach on the wooden floor of my room, scribbling away at a story on unlined paper, and of the satisfaction it gave me to put quotation marks around dialogue, because they made it look like the real thing,” he says. “I soon began clacketing away at my mother’s black portable typewriter from the 1940s. It took all the strength I had.”

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Anthony Weller on assignment during his journalism years, pre-diagnosis.

At thirteen, he published a poem in an anthology of science fiction. Postcards from his globetrotting father, the American novelist and Pulitzer Prize-winning foreign correspondent George Weller, stoked his desire to become a writer. His mother, a British classical ballet teacher, nurtured a love of music. Instead of settling for one passion, he would go on to dazzling careers in both music and writing. After studying jazz and classical guitar at Yale and moving to New York, he recorded with the likes of Stéphane Grappelli. Writing for magazines like The Paris Review, Forbes, and The New York Times Magazine took him to five continents.

In 2002, Weller began to experience the first symptoms of Primary Progressive Multiple Sclerosis, a severe, non-episodic form of the disease that never goes into remission. It moved from his feet to his legs, leading him to require a cane, then a wheelchair. It spread to his arms and hands, destroying his guitar technique. By 2010, he was unable to walk or play music. His wife, Kylée Smith, left her profession as a yoga therapist at the Boston Ballet to manage his constant care. Their resources were soon depleted. Now, a crowdfunding campaign on YouCaring.com, called “Hands for Anthony,” financially sustains the couple. It’s through this campaign that Weller has been able to continue writing.

Here, Weller discusses the perpetual fear that accompanies chronic illness, why no one ever asks him what it’s like to be paralyzed, how the dictation process affects his writing, and dreams about playing guitar.

How do you separate your physical illness from your sense of self? How do you keep a condition that’s ravaged your body from affecting your mind and your ability to write?

Determination. It’s better than watching TV until I die.

I suppose I’m “lucky” to have the more severe, rarer version of MS, which seems to leave the mind fairly intact amid a mercilessness toward the body.

How did you become a writer and a musician?

The cover to Anthony Weller's latest novel, The Land Of Later On.

The cover to Anthony Weller’s latest novel, The Land Of Later On.

The primary source of my writing was that I loved books from a young age. If I could devour [books] with the healthful gluttony and remorseless speed of boyhood, I might be able to at last consider myself well-read.  I used to wake through some internal pressure by five in the morning and read in bed until it was time to get up; and because schoolwork came easily, my main memory of early years in Macon, Georgia, is of lugging heavy piles of books home from the library every couple of days.  It didn’t matter to me, much, what I was reading; I could grind up anything and swallow it by sunrise.

My mother, a Londoner, was a teacher of classical ballet and also knew an immense amount about classical music and music around the world. She was interested in all musics and always favorable to whatever I brought home. This open-mindedness was a great gift to me, and kept my ears open to finding the music that was “right” for me. When I found the guitar, it seemed to attack me and therefore I wanted to attack back.

Many famous authors — like Henry James, Richard Powers, Milton, Mark Twain, Borges — dictated their work. What have you learned from these authors’ approaches?

In those cases, the writers (geniuses all) were able to rely on their memories when they had to. The chief drawback is you’re not able to control your sense of the whole; you have to rely on other people to turn pages for you, even if they’re only reading aloud a few lines of a sonnet.

The lesson? Not to give up. I have no excuse. They did fine, so can I.

How does dictating feel different from typing or writing by hand? Are there any aspects of the writing process that you think dictating improves?

For me, dictating hasn’t improved anything. I miss terribly writing by hand, which is a sensuous as well as a creative experience. Dictating doesn’t feel like anything else. Words can no longer dance in the hand, and if you don’t have your book’s voice, I can’t imagine that speaking them aloud will help you find it. I could be wrong, of course.

The lesson? Not to give up. I have no excuse. They did fine, so can I.

I tried dictating using software on three books, and switched for my most recent novel to a live typist, who’s much more efficient. No doubt it helped that this novel is a first-person narrative.  Unfortunately, whether you’re using dictation software or a live typist, there doesn’t seem any way around the problem of instantly having to verify what you’ve written, so the objective mind is always threatening the subjective mind.

How has your writing process changed since shifting from typing or writing by hand to dictating, both with software and with a live typist?

The problem with dictation software is if, like me, you have an unreliable voice, then you’re in a constant state of frustration and anger, and those aren’t fruitful even if you’re trying to compose a laundry list.

Writing for me was always a solitary activity, even when I did it in a crowded laundromat in New York to keep warmer than in my badly-heated flat. It’s no longer solitary. It’s important to get over any sense of shame or violated privacy if you’re using a live typist. Anyway, when you write you mustn’t worry about what other people think. Dictation to a typist rubs your face in that.

How does the revision process work when dictating novels?  

You’re constantly revising, alas, because you’re constantly checking what’s just been typed. It’s much easier to catch errors immediately, when you still remember what you thought you said.

Because it’s so difficult to look backward because I’m totally paralyzed, I’m at the mercy of my memory more than I’d like. Many nights I’d lie awake and think back on prior chapters and try to seize what I’d inadvertently left out, then remember these lapses so I could correct them.

What are some of your favorite books?

Too many to list. I like books that I wish I’d written, of course. And we all like books that are a bit off the beaten path.

Within the 20th century, I suppose my favorite fiction includes Mister Johnson (Joyce Cary), and just about anything by Cary. Anything by Chekhov, of course. His Monkey Wife (John Collier) and “Pale Fire” (Nabokov). A House for Mr. Biswas (Naipaul). Anything by Flannery O’Connor, who wrote about the Georgia where I grew up. Anything by V.S. Pritchett. The Swell Season (Josef Skvorecky).

I try never to complain, because complaining doesn’t improve anything.

I don’t keep up with what’s out there. I mainly look at favorite passages in books I’ve already read, novels and poetry and travel. In the last five years, for example, I’ve only read three superb contemporary novels—The Old Turk’s Load (Gregory Gibson), The Gold Eaters (Ronald Wright), and My Notorious Life (Kate Manning).

What do you wish more people understood about MS and your experience with it that they tend not to understand?

I don’t think people understand the torment you live with constantly. I try never to complain, because complaining doesn’t improve anything. In my own case, there’s the added certainty that I’ll never get better, today’s always better than tomorrow, and so on. Anybody who waits for a miracle cure is an imbecile. This is psychologically very tough on me, and of course on my wife.

Anthony Weller was an accomplished guitarist.

Anthony Weller was an accomplished guitarist.

In an op-ed for the Wall Street Journal, you write about how nobody ever asks you what it’s like to be paralyzed, and that this may stem from concern about hurting your feelings. Is this concern unfounded? Why are so many people uncomfortable with openly discussing illness?

I don’t know why people are so uncomfortable. Guilt, I suppose, at having dodged the bullet. Or worry that they’re next. Yes, this concern is unfounded, because if you’re paralyzed you’re forced to very rapidly get used to your situation and come face-to-face with it. It’s not as if somebody’s going to surprise you by pointing out the obvious. There’s not an instant in the day when you’re not fully aware of your limitations. If your elbow itches, you’ve got to get somebody else to scratch it. That implies there’s somebody else willing to do it, and it’s worth their time.

How do you still engage with music?
I still listen enthusiastically, and every night I imagine I’m still playing the guitar while trying to sleep. Beautiful dreams.