I was born with sickle cell anemia, a hereditary blood disease that deprives normally round cells of oxygen, and causes them to collapse into a “sickle” shape. This results in restricted movement of blood through vessels, and further deprives the body of much needed oxygen. The condition is chronic, lifelong and causes periodic attacks of pain, as well as strokes and damage to internal organs. In my case, both parents passed the sickle cell trait down to me and my sister. (Actually, it can be passed down if only one parent has it.) And yet I have resolved to live a life that is not defined by my illness.

I was introduced to this ticking bomb inside my body in the 1960s when I was a child. Always sickly and skinnier than most kids, I still played outside, kicking balls and climbing trees, sometimes into the night. I had a strong will, even if my body didn’t always back me up. When I came down with a cold or the flu, I often felt an ache deep in my bones. Sometimes, during the night, I felt pounding pain in my legs or arms, and all I could do was cry. I’ve gotten used to the pain, however, and over time, have developed a high tolerance to it.

When I was growing up, there was not only no cure, but there were few treatment options. Doctors could help ease the pain, but the weakness that sickle cell caused was something I had to learn to live with.

Sometimes I could literally hear the pounding of blood trying to flow through my limbs. I listened, as my body tried to keep up with the demands of my sickling blood, and my blocked veins and arteries groaned from the lack of flow. All I could do was moan. My favorite escape from this reality was my annual summer camping trip with my sisters. I loved it because I met new friends and experienced wonderful adventures. This particular summer, we were going to a new camp, sponsored by a Catholic church and managed by nuns. It was at 6,000 feet in the mountains, and I was so excited.

The morning started off like any other first day of camp: We packed one suitcase full of shorts and another full of T-shirts, and drove to the church pick-up point. The buses were there, motors running, and children waited in lines, eager to board. I jumped out of our still-running car, said “goodbye” to my mother, and ran towards the person holding a sign-in sheet for our group. I gave them my name and they motioned me towards the correct bus. I hopped up the three bus steps.

The bus ride along oak-lined winding roads with river views was so exciting. I felt the weight of the world lift from my young shoulders and flow out of the window into the wilderness. I was happy and pain-free.

When we finally pulled up to the camp grounds, we immediately dropped off our suitcases and rushed to the mess hall for lunch. Smells of ham, turkey, mashed potatoes, green beans and hot rolls wafted through the room. After such a long ride, I was hungry, and the food was laid out like a banquet.

After that delicious meal, we went to our cabins to settle in and get ready for the rest of the day’s events. But while unpacking, I threw up. I lay down on my bunk bed and threw up again. In fact, I couldn’t stop. The camping staff carried me to the nurse, who laid me down in her office. Unfortunately, my condition got worse. I began to shiver. Finally, I blacked out. Just an hour or two after my arrival, camp staff had to call my mother and tell her to come and take me home.

This was my introduction to the disastrous combination of high-altitude and sickle cell disease. The higher the altitude, the thinner the air. As a result, my blood could not get enough oxygen to function normally, which caused me to have a sickle cell “crisis.” Luckily, the nurse knew to get me out of the high-altitude quickly, so I would not sustain damage to my internal organs.

Later that year, my mother discovered that there was a newly formed sickle cell clinic at a local hospital that planned to conduct a study in the Los Angeles area on people who had the condition. My sister and I were included. Each week, kind and knowledgeable doctors greeted us, took our blood, talked to us about pain, and told us why we were experiencing it. For the first time in my life, I could tell someone how it felt, and they understood. They finally helped me identify the cause of my pain, and taught me how to manage it. It was comforting to hear that it wasn’t my fault.

As a teenager I began to develop a new relationship with my body through dance. I was introduced to it by my older sister, who was a modern dance major at UCLA. One day, she turned on some music and started to sway and move in rhythm with the beat. I was mesmerized by her mastery of her own body. I loved music, but had never seen anyone move to music with such grace and beauty. Each beat seemed to have a meaning, and each change in tempo a purpose.

I discovered I could use my body to tell the stories of its struggles. Dance gave me the assurance that my body could take care of itself. Beyond hopelessness and pain, dance offered me hope, strength, love and respect. Moving and stretching also helped me find peace.

While there is still no cure for sickle cell, universities and other research centers around the world continue to study the disease. I don’t know if I’ll see a cure in my lifetime, but I will dance on.

A CLOSER LOOK

Let’s break down the components of sickle cell anemia. Anemia is a general term meaning abnormally few red blood cells. There are a few different types of cells in the blood: The white ones, for example, which fight off infection, and the red one—typically
disc-shaped—that attach themselves to oxygen molecules called hemoglobin to carry oxygen to the cells that make up our organs.

Due to an inherited gene, the sickle cell anemia hemoglobin molecule is defective. The defective hemoglobin causes several problems. While normal red cells, which are made constantly in the bone marrow, last a few months, the abnormal sickle cell red blood cells live only a few days. The shorter lifespan of the red blood cells leads to anemia.

The sickle shape of the red blood cells poses another problem. Because they’re malformed, they don’t flow well through blood vessels. They tend to clump, which results in poor circulation and inadequate oxygen to the organs. The resulting symptoms are myriad: fatigue and shortness of breath. Headaches, chest, arm and leg pain are often common. Complications may include stroke, blindness, lung damage, and multiple organ failure. Infection can be a problem, too.

Sickle cell patients are often hospitalized at least once and sometimes several times a year. Blood transfusions and intravenous hydration are usually used to relieve pain and improve blood flow. Occasionally, the disease is cured with bone marrow transplantation. Researchers are now exploring gene therapy as a possible cure for the disease.

P. Allen Jones

Sickle Cell

Hello everyone, I just wanted to introduce myself before I start on my first column for ABILITY Magazine. My name is Ashley Fiolek, I am 18 years old, I was born deaf and I live in St. Augustine, Florida. I am a women’s professional motocross racer, and I race the WMA (which is a series of races here in America) and the FIM (which is a series of races in Europe).

I’ve been riding since I was about 3 years old, but I became really interested in racing and wanted to race when I was 7. I have been racing for over ten years now, and it is my life!

I want to say I am excited to get the chance to write a column for ABILITY Magazine; hopefully I can bring all of you into my race world and you will better understand the sport I love: motocross!

Last year I started going to Europe to race. I was racing with girls from all over Europe. Some spoke French some Italian, German…various different languages. There was not really a common language, so for the first time in racing I was not the “different” one. Everyone had to try and figure out different ways to talk to one another, but we did, and we all got along really well and had a great time together! I think being able to race and ride lets me express who I really am, and I am never held back in any way. If you have ever raced, you know what a terrific feeling it is and how free it can make you feel. I am lucky to be able to do it for my career.

When I was in France last year, I met a couple of fans who came over to me and started to sign. I thought I missed something, and I asked them to sign it again. Then I realized they were deaf like me and were signing in French sign language! I had no clue what they were saying, but at the same time I was thinking “Wow this is really cool!” I guess I just assumed signing was all the same..haha. But obviously it is not and I have a lot to learn if I want to be able to sign in France! It was also pretty cool to know that there are deaf French people out there who love motocross as much as I do!

A couple of funny things happened over in Europe because of different language situations. My dad is hearing and he actually struggled with the language barrier thing a lot more than I did! On one of the trips we took we realized we forgot our adapters for our plugs. So we went down to the front desk and out to the stores trying to find the converter/adapter that we needed. To everyone my dad asked he used the American sign for plug. So everyone looked at him like he was from another planet! Obviously, being deaf, I am used to trying to make hearing people who don’t know sign language understand me. I told my dad, “Let me handle it.” I made up some simple gestures for the people to explain to them what we were looking for, and they understood me right away! It was kind of funny because my dad was just stuck on the whole “signing” thing because they couldn’t understand English!

The next funny thing that happened was in Italy when my dad tried to order a pizza. The waiters didn’t know any English and couldn’t understand what my dad was trying to order. So my dad again tried to “sign” to them and used the American sign for pizza! They still didn’t get it..ha ha…I stepped in and made a circle with my finger and “sprinkled” toppings on. Guess what?? They understood me!

Ashley Fiolek

Over the years, our daughters have brought home various young men to ‘meet the parents.’ After a long, dry spell, our California daughter, Melissa, had someone she hoped we’d welcome to the family. She had gotten lucky through one of those .com mating sites.

In keeping with her interest in politics, she and Charlie met through an on-line dating service for Democrats. Melissa waxed particularly enthusiastic because he had a serious interest not only in politics, but also in medical research. She assured my husband and I that we couldn’t help but like her new beau. But having met some of her previous prospects, we were less than certain.

When Melissa and Charlie flew from Sacramento Valley, CA, to our home in Neptune Beach, FL, in June 2007, we discovered that she was absolutely right. Charlie is gregarious by nature with an optimistic outlook.

For his visit, Charlie had one request: Since he’d never seen the Atlantic Ocean, he wanted to go to the beach. Not an unusual request for our part of the country. Who wouldn’t want to bask in the warm, salt air off the Atlantic with its magnet pull of sand and sea, shells and birds? But this outing required some planning.

For the past 12 years, Charlie’s had multiple sclerosis. When he and Melissa arrived, he used a cane around the house and a wheelchair for longer excursions.

Right away, I began to research how Charlie could have his day at the beach. I’d seen the Life Guard Station at Jacksonville Beach many times, but had never had occasion to call on their services.

We found the young lifeguards friendly, polite and eager to help. I discovered that they do more than guard swimmers and save lives, they also make the beach accessible to people who are physically challenged by the very things that make the beach so enticing: sand, uneven surfaces and resistance. Leaving Charlie’s wheelchair as collateral, we borrowed a beach-going wheelchair at no charge; it looked much like a cushioned deck chair or patio chair with large wheels.

We couldn’t have picked a more ideal day—sunny with a cooling breeze off the ocean. Melissa pushed Charlie through the soft sand. After she’d gone a short distance, a young lifeguard, sporting a beautiful tan, sprinted across the sand, helping her guide the chair to the beach and firmer ground nearer the water. As Charlie and Melissa moved up and down the beach together, his smile was as glorious as the ocean at sunrise. At one point, he rose and walked part of the way using his cane.

Spying the beach-going chair they’d abandoned, I walked over and sat down. That’s when a gentleman came up behind me, gripped the chair, and asked if I’d like him to push me to where Melissa and Charlie had walked. At first I declined, but later accepted the offer. I found the beach chair comfortable and the passing view appealing. The kind stranger asked me to tell him when to stop. It was such a treat that I remarked that he could just keep going and going, at which point he informed me that he didn’t intend to push me all day! Oh well, all good things must come to an end, even Melissa and Charlie’s day at the beach. Still, it was satisfying to see two people in love share that moment together, and Charlie said the negative ions off the coast were good for his body.

A former Nevada resident, Charlie has since moved in with Melissa and her 17-year-old daughter, Katie, in Sacramento. His two children are still in Nevada, attending college.

Charlie and Melissa are still settling in: Her involvement with animal rescue spurs his determination to participate in various activities-more than might be advisable at times. On occasion she nearly runs people over as she pushes him in his chair, which can lead to a dirty look or two. But they’re making it work: She does more of the physical chores; he handles the finances, which pleases Melissa beyond words.

Melissa first had an inkling that it could go the distance during their initial date. They began e-mailing in the spring of 2006, when he was still living in Nevada. One Saturday he planned a trip to Sacramento for an adaptive golf lesson and suggested they get together for lunch. Neither of them had spoken in detail about his MS, which he had simply mentioned in passing—and not by name—as his “little problem.”

“We met at a little Chinese restaurant,” Melissa recalls, “and he was tired from his lesson. He came in using his cane, and as he made his way to the table, he knocked a potted plant over. He looked at me with a What should I do? expression, and I mouthed Leave it, gesturing with my hand that it wasn’t important.”

“That was a pivotal moment for me because in other relationships,” Melissa says, “I had never been asked for guidance in handling a situation. I knew Charlie would continue to respect my opinions on things. That’s huge for me. I was impressed too that even though he had to lean on a cane, he had very good posture. We were perfectly at ease with one another from that first meeting.”

A fifth grade teacher with a bent for research, Melissa went on to find out more about his health. Charlie’s MS is progressive, so they know that further challenges lie ahead. They have hope for new advances in treatment, yet they know that life won’t be a romp at the beach. The beauty, however, is in all the little moments that they get to share together.

by Ruth Coe Chambers

MY MS EXPERIENCE

In 1995, my ophthalmologist told me that I was dying. I went to him about blindness in my left eye caused by my multiple sclerosis. That day he informed me, rather insensitively I might add, that MS “is a disease of the central nervous system that results in death.” I sat there stunned, scared and mad.

I was 37 and married with two young children. I worked daily. I was buying a home. I played sports, officiated football, skied, paid my taxes, volunteered at my children’s grammar school, performed community service, coached youth baseball and soccer.

Fortunately, I was prescribed an intravenous prescription that restored my eyesight within days. Still, I was concerned about the future. So I went back to my neurologist for more information, and continued to doggedly research this monster that had shown up uninvited at my door. I discovered that the parts of my brain that controlled facial nerves and jaw muscles had been damaged. I joked that I supposed I could live with a drool cup, if necessary.

As I continued to read up on my condition, ask questions and learn as much as I could, I found out that my ophthalmologist didn’t have his facts straight: MS is not fatal. In fact, I had as great a chance of dying of MS, as I did of getting hit by a Mack truck. That said, MS is still quite formidable; it can cause blindness, dizziness, loss of cognizant function and mobility, incontinence and other dastardly ills.

In those early days after I was diagnosed, I was not told about management drugs for MS, and thus did not start injections at that time. Today’s medical strategy calls on starting a management drug as near to one’s diagnosis as possible. There remains no cure for MS, only management of it. Fortunately, I went into remission for several years.

In 2000, MS came barging back in again like a mad bull. I began to lose leg mobility. After 10 years as a football official, I had to resign. I gave up coaching. I quit skiing. I no longer volunteered in the community or at my children’s school. I stopped traveling overseas for work. I was able to hold onto my job, but not my marriage, though I’ve always stayed in touch with my children.

I began to adjust to the new reality, but refused to surrender to MS. After conquering my self-inflicted pity parades, I began to learn to cope. I struck the word “can’t” from my vocabulary, asking myself instead, “How can I?” I joined my local MS association chapter, and volunteered at its MS 150 Bicycle Fund Raiser. In the following months, I purchased a hand cycle, training to ride in the MS 150 the following year, raising nearly $3,000 for research.

I learned of an adaptive ski program, and the following year went back to the slopes. I had the biggest smile at the ski resort that day. Later, I discovered an adaptive golf program for people in wheelchairs and others unable to walk the course. The following year, I golfed for the first time in a long while. Finally, I traveled to Florida to see the Atlantic Ocean, and delighted in wiggling my toes in the sand.

Before the Florida trip, I was cautiously optimistic about a new disease modifying drug (DMD) that I had begun taking for MS. Though researchers continue to seek a cure for my condition, progress is painfully slow and filled with numerous “almosts.” In this case the DMD started out strong, but soon lost it effectiveness. In just three days, I went from striding down the beach holding my sweetheart Melissa’s hand, to staggering down the hallway.

MS changed my life, and I’ve had to re-invent my self. Aside from finding alternative approaches to my goals, I’ve learned to take pride in the simplest accomplishments, whether it’s pulling myself up the steps in a movie theater, making it through an airport for a flight, or taking a roll and then a stroll down the beach. The thing about life is that there is always a way.

by Charlie Kuhn

Tucked alongside the railway that cuts through Laguna Niguel, the Mugs Away Saloon has perhaps been best known for its boisterous patrons, frothy drinks, and its unique “train mooning” ritual. But Saturday night’s visitors to the hangout may have noticed that a new moon is dawning at Mugs Away—and it’s the sort that doesn’t require unbuckling of pants.

Long into the night, the saloon played host to a fundraiser concert for ABILITY Corps, a volunteer organization through which people with disabilities aid in the construction of homes for others with disabilities. The organization, founded by Orange County local Chet Cooper, aims to help people with disabilities secure employment and shatter misconceptions about limitation.

With a mix of local rock bands, stand up comedy, and a raffle that offered everything from a boudoir photo shoot to a motorized scooter, the fundraiser drew visitors away from the train tracks and toward a stronger sense of community and philanthropy.

Jeff Charlebois, a self-described “sit down” comic, kicked the evening off with self-effacing witticisms about his life as a wheelchair user. Big Toe, a rock band fronted by guitarist Mark Goffeney, jammed on covers of Collective Soul and Green Day. Some Mugs Away regulars were so caught up in the music they failed to notice that Goffeney, born without arms, manipulates his instrument entirely with his feet.

Led by vocalist Tobias Forrest, the funk rock band CityZen offered up an eclectic, high-energy performance that incorporated electric violin, saxophone, keyboards, and every sound under the moon. Forrest, who was 22 when an accident at the Grand Canyon left him a quadriplegic, demonstrated no shortage of stage presence or vocal command.

Also included in the entertainment line-up were local bands—the StubBurns, Opal Jones, Lobster Repair and Lazy Brad Lewis. All rocked the house.

The fundraiser was a rousing success for ABILITY Corps, for the friendly staff at Mugs Away Saloon, cinematographer Mike Neved, photographer Nancy Villere, event producer Darcey Stubblefield and perhaps most of all for the notion that disability is no obstacle for raw talent.