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Chronic Illness Essays

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.

Chronic Illness Essays

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 Q&As Uncategorized

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.

Chronic Illness 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.

Chronic Illness Genetic & Congenital Diseases 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.”

Disability 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.”