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Chronic Illness

When Lightning Strikes Twice

Just because you make it through one diagnosis doesn't mean you're immune to others. When it comes to chronic illness, lightning does indeed strike twice.

“We’re safe here,” my dad said as we sat in his burgundy Buick in the parking lot of the White Hen Pantry just forty-one miles south of Chicago. A thunderstorm had rolled in. My younger sister and I sat in the car staring out the window as my dad explained the logistics of the storm and our safety.

“Cars are grounded by the tires,” he said. “If lightning strikes, the electricity will travel around and go straight into the asphalt. It won’t hurt us.”

“How do you know?” I asked.

“Because it happened to me in high school,” Dad said. “My friends and I were hanging out in a parking lot when our car got hit. It was loud. The car lit up, but we were safe.”

I was eight years old. I never questioned my dad’s logic or his story. His role as protector has always been clear. At thirty-eight I just googled this safety phenomena. While his explanation was a little off scientifically—the tires aren’t what grounds the car –he was still correct. We were safe.

A young Cory Martin with her dad and sister.

Lightning Strikes

From that moment in the parking lot on I preferred to spend storms in a car or resorted back to what my sister and I had always done as young girls –climb into our parents’ bed in the middle of the night and cuddle between them. Whatever raged outside would not touch us until it did.

Lightning struck one summer day a couple years later. We were all at home inside playing a game in the family room, counting the seconds between when we saw the flash and when the resounding boom echoed through the house. As the rain came down harder, the seconds went from 5 to 4 to 3 to 2 to BOOM!

There was a bright light then an immediate bang followed by the distinct smell of smoke. Our parents called 911. Sirens roared and the engines pulled into the driveway. The firemen went into the attic, then climbed onto the roof. The electric bolt had hit the chimney. A few bricks were knocked free from their masonry place, but the burnt smell was just an after effect of a few wires being burned. There was no fire. The house was safe.

There was a bright light then an immediate bang followed by the distinct smell of smoke.

From then on, all major appliances including our Apple IIGs were plugged not directly into the wall but into a circuit protector that was then plugged into the house. The firefighters had said we were lucky. Next time we might not be. We should take proper precautions.

“But lightning doesn’t strike twice, does it?” my mom asked.

The firefighters shrugged. “Better to be safe than sorry,” they said.

And so, we lived under a veil of protection. Circuit protectors, a Buick, then a Jeep, then a Ford Taurus. When I was in high school, we lived in a different house where the basement was finished. We spent storms of the ferocious kind hiding ten feet under.

Author Cory Martin on Venice Beach.

Then Came MS

When I left for college and moved from the comfort of Midwestern suburbia to the heart of Los Angeles, there were no real storms to fear, just an occasional rumble of the earth. I didn’t need the protection of four Firestone tires or the calming presence of Mom and Dad. I was an adult now, ready to face the world.

And I did. I studied writing and literature in school. I graduated. I secured a job. All was calm and as it should be.

Then another storm came. Its bolts more intense than I’d ever seen. When it struck my body, I was unprotected. There was no safety of a car or the arms of my parents. The lightning had two names. Multiple Sclerosis – an incurable, unpredictable disease that silently destroys the coating on your nerves like the lightning that had melted the wires of our childhood home. I was twenty-eight years old when the doctor diagnosed me. I had lesions on my brain, numbness in my arms, and cognitive difficulties.

There was no circuit protector for my nerves. I was left to lie in wait and subjected to a spinal tap that landed me in the ER.

There was no circuit protector for my nerves. I was left to lie in wait and subjected to a spinal tap that landed me in the ER. The professionals were looking for more answers and guidance on a treatment plan, instead, the hole they poked in my spinal column failed to heal. The cerebral spinal fluid that protects the grey matter inside my head and my spinal column drizzled out into my body causing my brain to bang against the inside of my skull. The test had left my brain completely unprotected. It was a storm I’d never experienced before. I had no clue how to walk through it.

My parents flew out from the Midwest to be with me in the hospital. I was an adult who needed their protection once more.  

When the leak was plugged and I was deemed safe to return home, I sat on my couch and cried into the shoulder of my dad. I was exhausted. Scared. And unable to see a future that wasn’t destroyed by disease. For thirty minutes my dad said nothing as the tears flowed from my eyes. We were in the Buick. Grounded. And I finally felt safe once more.

Cory Martin is determined to weather the storm.

The Second Strike

Lightning never hit our family home again. All the precautions my parents took were for naught. There was no reason to fear, yet the circuit protectors remained. Just in case.

For the next ten years, I had no other choice but to keep moving forward. I was lucky that my symptoms were manageable and that the lesions on my brain remained stable. The storm of MS held the possibility to spin into a tornado, but I learned to live with my own DIY circuit protector. I created a bucket list of sorts and powered through with the attitude of saying yes to every opportunity.

For ten years, I lived believing that I had it all figured out. That because I’d contemplated the future with MS, understood the possible outcomes of the what if and what now and what then questions, that I knew exactly what my future held. I thought I was prepared. I thought I could handle anything.

I thought I was prepared. I thought I could handle anything. Then it hit me. Straight on.

Then it hit me. Straight on. There was unbearable pain in my bones. Inability to exercise. The pain I felt was a marathon. The fatigue made work impossible. My writing became jumbled.

I went to the MS doctor looking for guidance. She ran some tests, but she couldn’t make sense of it. The lesions on my brain hadn’t multiplied—she didn’t think it was MS causing my pain this time. My primary doctor ran tests too, but she didn’t have an answer either. She sent me to a rheumatologist. By this point I couldn’t walk up a flight of three stairs without needing an hour-long nap. Still, he didn’t think I had any of the diseases he normally sees, but to cover his bases he drew some blood. When I returned for results, I went into the appointment expecting to hear that it was a fluke thing – a virus, a lack of vitamins. My body had already been struck once. Surely, it wouldn’t be struck again. But his words said differently.

You have Lupus. Take this drug. See you in two months. BOOM! I was struck once more. Unprepared.

 Every Storm Is Different

Even though I tried to predict what my future held with MS, there was no way to predict a future with Lupus. There was no way to know how it would feel to be told I had another unpredictable, incurable disease.

After living with MS for a decade, I thought I had iron clad armor. A steel chassis to redirect the electric current. I thought I was immune to any more blows to my health. And even if I wasn’t immune, I thought that no matter what happened I would know how to deal. But I was no more prepared for Lupus at thirty-eight than I was at twenty-eight when I was told I had MS.

Every bolt is different. Every electric surge a new voltage.

So now here I am. No rubber tires. No circuit protector. Just me and the symptoms of my new disease. Attempting to adjust and move through it all. But how? That I’m not sure.

Yet I do know this…They say lightning never strikes twice. But it does. In fact, it strikes over and over again. It’s just that the same lightning never hits twice. Every bolt is different. Every electric surge a new voltage. You never get struck by the exact same current, but you are guaranteed to get hit more than once. It is a fact of life I now accept, but that doesn’t mean I can’t keep searching eBay for a 1987 burgundy Buick to hide out in until the storm passes.

Disability

Sex Is Better Now I’m Sick

Post-diagnosis, I'm having the best sex of my life, despite MS. But getting here wasn't easy.

Six years ago, I didn’t know about the degenerative disease lurking in my brain. My health hadn’t been great, but doctors chalked it up to post-viral fatigue, suggested I get some exercise, get out more, get a hobby. They ran blood tests, and sent me to an allergy specialist. Every result complied with the healthy diagnosis continually thrust upon me, but I knew something was wrong.

Then I was diagnosed with MS.

Before finding out the literal, physical limitations I have as a result of MS—such as intense fatigue, and near-constant nerve disturbances—I wasn’t thrilled about my sex life, but it also wasn’t a top priority. Despite being with a long-term partner, we had sex infrequently, and my overtures were the ones usually being turned down. Those rebuttals made me feel needy and insecure, but before diagnosis, I accepted the status quo.

MS changed the way I looked at my sex life. Finding out I was disabled pushed me to consider what I wanted to experience from life, especially life with a degenerative condition. And I wanted to experience sex.

Sex After Sudden Disability

The desire to experience a fuller sex life became even more urgent after a relapse left me numb from the waist down. With intermittent sensation in both of my legs, and sporadic nerve pain—ranging from electric shock prods to the spine to the feeling of a thousand needles pricking my thighs simultaneously—I worried what my sex life would look like, and if I’d even have one.

Finding out I was disabled pushed me to consider what I wanted to experience from life, especially life with a degenerative condition. And I wanted to experience sex.

I set about regaining my lost orgasm with a lot of solo work. It was a long and pretty lonely journey, with multiple moments in which I thought my sex life was doneso. Meanwhile, my relationship was suffering. My partner’s regular rejections of my overtures became even more personal and hard to take, post-diagnosis. I desperately craved an intimacy that I didn’t have. And with an incurable, unpredictable disease ready to pounce at any moment, I realized that the window left in which to develop my sexual side was time-sensitive.

Reclaiming My Sex Life

Even after my relationship failed, though, I refused to give up. Perseverance was key, and my nerves found new ways of sending signals as my body rewrote its wiring. And let me tell you something. When your body has been ravaged by the uncontrollable specter of illness, achieving a moment of pleasure is the truest triumph.

It was the first step to me reclaiming my sex life, which is today better than it has ever been. With a new partner, it’s the kind of sex life that I, as a disabled person, once believed to be impossible.

When your body has been ravaged by the uncontrollable specter of illness, achieving a moment of pleasure is the truest triumph.

A big part of improving my sex life involved accepting my new body: not just its painful limitations, but the strange sensations it creates on a daily basis. Which means sometimes accepting that sex just isn’t going to happen right now. Before, when I had a bad day of flaring symptoms, I would fixate on everything I couldn’t do or achieve in that moment, especially sex. But you have to feel good for sex to be good, as I have learned to accept from experience. So when fatigue is hung like a meat-hook from my skin, I don’t attempt intimacy, knowing it will do me more harm than good.

Never Give Up

It helps that my partner is supportive. Despite the anxieties that come from being intimate with a disability, he is never upset or impatient if I have to hit pause part way through, whether for an impromptu bathroom break caused by my irritable bladder, or a springing nerve pain reaching for my skin’s surface. He’s in no rush. He’s happy to take his time, always fine with switching things up if it’s not working for me, and never blames me if there’s an awkward moment or clumsy movement, which there will be.

And look, truth time: accessories matter. My vibrator’s more important that it every was before diagnosis. In fact, along with lubrication, it’s essential to my life as a sexually active disabled people.

The health of my sex life is not determined by [my] limitations: it is determined by how I manage them.

On a good day, sex is the ultimate escapism from the unconventional temple that is my body. It can be better than drugs, as endorphins wipe out my discomfort in a way that prescriptions can not. Yes, I have limitations, but as with so many things in chronic illness, the health of my sex life is not determined by those limitations: it is determined by how I manage them.

Being diagnosed made me realize that it’s okay to ask for what I want in my sex life. One day, my sensation might make sex even more challenging than it is right now, but that’s okay. I understand now that great sex doesn’t just happen. The key is to never stop trying.

Disability

The Disabled Filmmaker Turned App Maker Trying To Map The Accessibility Of Every City

Jason DaSilva, who has multiple sclerosis, won't stop until the whole world is accessible to people with disabilities.

Several years ago, after being diagnosed with primary progressive multiple sclerosis, filmmaker Jason DaSilva gradually lost the ability to walk. Constrained to an electric scooter in New York City, he soon experienced what many mobile-impaired do, the frustration of urban inaccessibility. “I would be out with my friends going to some place and there’d be a stair or two. There was no way for me to get in, so my night would be over,” he recalls. But DaSilva had an idea: who better to know which places are accessible or not then the disabled themselves. If such knowledge was available on a single map, life would go a lot smoother.

In 2009, as the iPhone was becoming popular, DaSilva launched AXS Map (AXS as in “access”), an app which crowdsources accessibility information and lays it out on an interactive map powered by Google, which has supported the project with a grant. It has since become one of the most widely used disabled apps on the market. It is very much still growing. DaSilva, through his organization AXS Labs, hopes to include as many cities and places as possible. Right now, it is especially popular in New York, where DaSilva lives. Toronto, Vancouver, San Francisco and San Diego also boast lots of users, he says. The more users, the more comprehensive the app can be. “We’re getting a lot of information,” says DaSilva. “We have over 170,000 places rated.” But, he adds, they need more. “It’s not something that just we can do alone. We all have to work together.”

Prior to his diagnosis, DaSilva led a disability-free life. He was successful a filmmaker with two critically-acclaimed documentaries under his belt. Then one day, at age 25, while on a beach with his family, he fell and could not get back up. “I went from walking, being totally fine, to going into a scooter then into a wheelchair,” he says of the transition. Encouraged by his mother, DaSilva decided to document his tribulations which he then turned into a film, When I Walk. It debuted at the 2013 Sundance Film Festival. He is currently working on a companion film, When We Walk, which he hopes to release this year. DaSilva also regularly travels to speak about his story and AXS Maps. Recently, he was in Istanbul. He has also spoken at the United Nations Zero Project Conference in Vienna. We reached out to hear more about the app, his filmmaking and how technology is changing the way the disabled navigate the world.

Director Jason DaSilva at work.

Prior to his diagnosis, DaSilva led a disability-free life. Then one day, at age 25, while on a beach with his family, he fell and could not get back up.

What is AXS Labs?

It’s our non-profit, around since 2008. Its mission is to serve people with disabilities through media and technology. It’s focused on the app as well as my film projects. We’re also trying to do some things around changing national healthcare policy but we don’t want to take on too much. We’re growing, but not rapidly. We’re keeping stable. The team is small, just four people. But we have room to grow. We just need funding to make that happen.

What makes a place accessible or not?

When I conceived of the app, I originally was looking at if a place displayed accessibility signs, does it have a ramp or stairs, an accessible bathroom, etc. But the longer I’m in this field, it’s got to be across disabilities. It has to include the hearing impaired, the blind, the immobile, people with cognitive issues. There’s a lot to think about.

You mentioned that New York is ranked pretty highly in ter ms of disability-friendliness. Who decides such a ranking?

There’s a report that’s regularly released called “The Case for Inclusion”. It’s done by the United Cerebral Palsy Foundation. They ranked the states. That sounds very general but it’s based on their medicaid support services, not on their medicare, which is equalized everywhere as a federal program. Medicaid is a state program. At the end of the day, it’s about independent living for people with disabilities. I don’t think I know anyone who wants to be in a nursing home. But that’s the other option.

AXS Maps aims to crowdsource accessibility data from a team of dedicated users.

Are accessible businesses getting more disabled customers now as a result of AXS Maps?

I haven’t done the work to know but that would be something a research team could do, to see what the potential market impact is. I would like to do that at some point.

What sorts of responses from users have you received?

They say that they love the app, that it’s great. But it’s crowdsourced, which means you can review a place as a five then someone else can rate it as a three and it’ll do an overall rating as a four. The reason for that is I may be in a scooter that can’t go through doors or up a big long staircase or a big winding ramp but somebody else may be able to use a cane and get in fine. So they’d review it as a five where I’d say a three. Different equipment and different means.

What are some future plans for the app?

Multiple sclerosis is always changing and my vision has been getting worse over the years. Now it’s at the point where I can’t properly see my own app. Machine learning or artificial intelligence is really interesting to me now. That’s where I think it’s really going to help people with disabilities. I could say, “Hey AXS Maps, tell me what coffee shop near me is wheelchair accessible” and it would give me a return. I’ve got the data now to do that. It just needs to be programmed in that way.

Multiple sclerosis is always changing and my vision has been getting worse over the years. Now it’s at the point where I can’t properly see my own app.

Are there other similar apps now on the market?

There are. But we are definitely one of the first ones. We are the biggest one for North America. It’s a free app. Currently there’s no premium version. I thought it crucial that this app remain free for the people that need it. There could be ways of making a premium model but we just haven’t done it. I’ve been focusing on getting robust data. We also have just put out some awesome t-shirts.

What is your new film about?

It’s called When We Walk. It’s about me, my life and my legacy that will be passed on to my son. I have not been able to be in the same place as him because I’m in New York, which supports people with disabilities, while my son was taken to Texas, which is the lowest ranking state [for people with disabilities]. Because of that I cannot be with my son. The best way for him to know me is through a film. It’ll be out shortly. We’re just waiting for a good festival to pick it up.

Chronic Illness

Why I’ll Never Be Okay With Having A Chronic Illness

Everyone expects me to be okay with my condition. I'm here to tell you that's not how it works.

After my mom died, my doctor told me that grief was a gradual process. He also implied that there was a time limit on it. “Three months is normal,” he told me. “Six starts to seem long.” But when you’ve lost a part of yourself, there is no estimable time within which you’ll be better, no deadline in which you forget. And I’ve found the same to be true of the expectation that I’ll “come to terms” with having MS.

Multiple sclerosis is a disease of the nervous system. Faulty antibodies attack the body instead of protecting it, crossing the blood-brain barrier to cause inordinate damage to the brain and spinal cord. The condition creates lesions on the protective coating on my nerves, meaning signals get interrupted or confused, leading to nerve pain, tingling and itching, spasms, immense fatigue, mobility issues, cognitive impairments, increased disability… the list goes on, but you get it.

I was diagnosed with relapsing-remitting multiple sclerosis in 2013, around 18 months after my mom first found out she had cancer. While her initial treatment and operation were successful, ridding her body of that first tumor, it came back with a vengeance. By then, my own health issues were in full swing, too. Both diagnoses changed my life irreparably, and I’ll never be okay with that.

An Off Switch I Don’t Control

Both diagnoses changed my life irreparably, and I’ll never be okay with that.

Even though finding out I had a chronic condition explained a plethora of symptoms that went previously unexplained, learning that I was now disabled was about as digestible as the wrapper on a Big Mac. The only things that kept me going during the dirge that followed were an insatiable appetite for pop culture, and my support network on social media. Rewatching Felicity got me through, when you’d think meds would suffice.

My diagnosis floored me. There are literal physical things I can’t do anymore, and goals I’ll never achieve, because my body had developed its own turn-off switch that I’m not in control of. For instance, I can’t keep up with my friends, and traveling is way more challenging than it once was. I have to abide by a different timetable from the masses, and make sure that I exercise to stop my muscles giving up altogether. I don’t look too far towards the future because my body has the potential to deconstruct like the mission in a Tom Cruise movie, and that terrifies me. And before anyone starts, that’s not negativity—it’s my reality.

Any initial relief I had in explaining why I am the way I am—and no, it’s not in my head, and I’m not lazy, either—was soon replaced by a generalized dread that doesn’t really subside, nor should it. I’m living with a disease and it’s degenerative—how exactly should I feel about that? How much longer until I accept it with the ease of a Netflix cancellation? Answer: NEVER.

My Life Before Diagnosis

I’m living with a disease and it’s degenerative—how exactly should I feel about that?

Prior to diagnosis, I made theater shows. From applying for funding, to writing scripts, to performing the work myself, I was forging a career in the arts and trying to do it on my own terms. In some ways, performing had been my dream since high school, but I was never a natural at it—too awkward a human being to smoothly navigate a stage believably. But funding bodies and arts organizations continued to support me, so I went where my career seemed to take me.

A week after wrapping the tour of my second solo show, I ended up in the hospital with what turned out to be MS. While I’ve tried to write theater shows since, it’s a much trickier affair. My body can’t handle a nine-to-five, or fit into another person’s schedule.

The word accessibility is often bandied about, but the truth is, it only serves to make able-bodied people feel better. In meetings since I’ve been told that theater takes everything and might not be for me if my heart isn’t in it. But my heart isn’t the problem—it’s my debilitating and energy zapping sickness that’s the barrier, and desire won’t suddenly make that shit possible. Plus, I can’t change elitist attitudes which make the arts an exclusive arena that’s difficult to enter for most, near impossible for the disabled.

The word accessibility is often bandied about, but the truth is, it only serves to make able-bodied people feel better.

Just think about the movies and TV shows that have chosen to cast able-bodied actors in disabled roles. Arguments that “the best person for the job was hired” persist, and should prove just how far accessibility has to go before disabled people don’t feel disappeared into the background, erased from their own stories and character arcs.

After being told “we all feel tired” and generally having my symptoms minimized out of existence, and it being suggested that theater’s 24/7 work week wouldn’t suit me, I’m more determined than ever to put up a fight. I won’t go quietly into the night about this chronic illness I didn’t ask for.

A Diagnosis Is Not A Tidy Bow

Some therapists and healthcare professionals would like a diagnosis wrapped up neatly with a bow or placed in the correct trash can for recycling. A reusability. A sense of understanding or acceptance within a respectable timescale. However, learning to live with a new normal doesn’t just take time, but the effort of rebooting a beloved franchise. And as any sick person knows, effort is something in extremely short supply. My phone battery is running at 4% constantly and the wire to my charger is dangerously frayed.

Obviously, it’s not my job, nor anyone else’s, to make onlookers “feel better” about the disease that I have to live with. And the same goes for grief. If you’re uncomfortable because I’ll be mourning my mother forever, in my own way, then that’s your problem, not mine. My body has refused to conform to any supposed “norm” and my brain’s following suit.

I’m probably coming off as negative which is… well, accurate. I didn’t want this disease anymore than I wanted Ben Affleck to play Batman, but I learned to love him in his own way, even in those dead-eyed Justice League reshoots. And I’m learning to love my MS, and handle other people’s reactions to it in the same way that Affleck handles criticism to his superhero casting—by literally not giving a shit.

In case it needs stating: There is zero reason that anyone with a chronic condition should perfectly process their diagnosis, apart from to make other people feel better about it.

But just because I refuse to accept the chronic condition I’m stuck with, that doesn’t mean that I’m not living. I live in spite of my condition. Multiple sclerosis isn’t all of me, although on some days it consumes me, tries to convince me I’m dying. I might never shift the anxiety it’s amped up in me like a Christmas drink in Starbucks—too much syrup, a sickly cinnamon sprinkling, a heart-pumping, insanely sugary, caffeine explosion. And I sure as hell will never be happy I have a degenerative disease which requires monthly IV infusions. And my mom’s still dead, in case you forgot (I didn’t). I will never be okay with either thing, and not being okay is absolutely the only way for me to be.

Disability

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.

Disability

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.”

Immune & Autoimmune Diseases

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.”

Chronic Illness

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.

Disability

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.

Disability

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.”