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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

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.

Profiles

MS and Sickle-Cell Can’t Keep This Motorcycle Mom Down

Rona Wiggins was told it was too dangerous for her to get pregnant. But there's more than one road to becoming a mom.

Rona Wiggins’ childhood was filled with limitations: Don’t fly on a plane. Don’t ride roller coasters. Are you sure you want to be a cheerleader? Isn’t that too strenuous?

Then there was the most disheartening limitation: You must never birth a child because it might kill you.

Rona Wiggins with her beloved motorcycle.

 

At first, Wiggins accepted the limits placed on her by caregivers. As a girl, she didn’t realize there were other people like her, with sickle cell disease: a debilitating blood disorder that contorts red blood cells into a sickle shape. The shape hinders the supply of blood, causing a lot of pain and a crisis that usually has patients hospitalized.

According to the doctors she’s seen through the years, Wiggins, now 43, isn’t supposed to be here. She was given “death dates” at 13 and then 21.

Today, she’s living well with sickle cell disease, whether she’s helping others like her through patient advocacy, or riding her beloved motorcycle. The last time a doctor proclaimed she wouldn’t live long, she defied that prognosis and celebrated with an “I’m still here” party at age 35.

But her journey is certainly filled with twists and turns. Soon after her party, Wiggins was diagnosed with relapsing-remitting multiple sclerosis.

“I was angry with God. Was I not a good steward of sickle cell?”

“I was angry with God. Was I not a good steward of sickle cell?” she remembers asking after the MS diagnosis.

Still, Wiggins has tried to remain resilient. She is determined not to let these conditions stop her from becoming a mother.  The Virginia native who lives in Murrieta, Calif., spends her days preparing to foster, then adopt, a child.

Becoming A Mother With Sickle-Cell

At 18, Wiggins experienced an ectopic pregnancy miscarriage. Later, she held off on having children until she found the right partner.

“As a child, I had dreams to be married by 21 and have a child by 23 and the next child by 25 but that was not my story,” she says.

But for several years, motherhood was tugging at her heart. She considered adopting a child, so she contacted an agency to see if she was qualified as a single, gainfully employed  woman living with sickle cell.  All was good, except for the sickle cell.

Rona staying sassy in the hospital.

“I was told that due to the nature of my disease I would need an extensive care plan in the event of my untimely death or untimely hospitalizations,” she says. “I had family but they were busy taking care of my ailing grandmother and they did not have room for anything else. So, I abandoned my hopes of adopting a child and prayed for a husband.”

Then, at 39, she married Antwoine Wiggins and became an instant mother. He was already the father of six, including one child who was deceased and one who was adopted. When the couple moved to California, they brought his son with them, and a daughter later joined.

Before the two teens graduated from high school, the Wiggins began talking about options to expand their family.

Roadblocks

The Wiggins explored surrogacy, but with Rona’s condition, and her husband’s G6PD deficiency (which can cause anemia in certain situations), they’d have to do a lot of “tinkering with the egg and the sperm to get a child without these illnesses.”

The Wiggins family.,

“I even asked the oldest daughter if she would be willing to carry our child but she is having such a hard time with our second grandchild that she said she will not be having anymore,” Wiggins says.

So they considered adopting a newborn from a mother who was giving her child up for adoption. However, they were uneasy about the potential for the mother to change her mind. It was a situation they weren’t sure they could handle.

The next logical option was becoming foster parents with the goal of adopting.

“With that option, we would know for sure that the parental rights had been legally terminated and that the child would be ours,” Wiggins says.

The process has been long and tedious, filled with state clearances, fingerprints, tuberculosis tests, physicals and classes.  In classes, the coupled learned about discipline without hitting, mental health issues, effective communication, transgender and sexual issues in children, water safety, and CPR.

But the end is now in sight. They expect to have a child in their home no later than April.

“I’m looking forward to the heartaches, the anxiety and the sleepless nights,” she says. “But nothing is guaranteed.”

Keeping Faith

Meanwhile, Antwoine was recently deployed.

“With or without my husband, my desire to be a mother and raise a child has been in me and continues to burn in me,” Wiggins says. “I have the gift of helps and I know that raising children can be stressful but when you have a loving husband, supportive parents and God on your side, you can accomplish anything.”

Given her dual diagnosis of sickle-cell and multiple sclerosis, Wiggins notes there may be days where her limbs don’t work right, where it will be hard to make her appointments with doctors and specialists. But to hear her tell it, these are challenges for every parent.

“I keep encouraging myself knowing that there are people in the world who are worse off than me yet they are successful parents…”

“I keep encouraging myself knowing that there are people in the world who are worse off than me yet they are successful parents,” she says. “Tomorrow is not promised to anybody but all we can do is do the best with the skills, knowledge and abilities in which God has bless us with.”

She adds, “In all of my anxiousness, my disappointments, my stress, my range of emotions, my heart continues to long for a child that can join our family and can make memories for a lifetime.  I do not want to be an old lady with this desire still burning in my heart.”

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.”