• Will: Surfer and extreme athlete, now a homeless youth

    by Erika Fiske

    Will used to be the epitome of a California surfer— muscular, a boyish look, a pro in gymnastics. He could ride waves as easily as most of us walk. He could do it all. But not anymore. These days the 22-year-old wakes up on fire, with his feet in buckets of cold water, and his dreams gone.

    Will is one of many homeless youths who call the streets of Monterey Peninsula home. But unlike the others, he must deal with a rare and painful neurovascular disorder for which there is no cure— erythromelalgia. The disorder involves blood vessels which become blocked off and on throughout the day, causing severe burning pain in the lower extremities and feet. The heat and pain can be triggered by anything from high temperatures, pressure and mild activity to exertion, insomnia or stress. In other words, just about anything.

    These days, instead of striving to be the best and brightest, Will just tries to survive. That can mean finding a place to park his motor home at night, where police won’t come knocking on the door; or hanging his red, hot feet out the window on a cool night; or asking a passerby for change, so he can save for day-to-day expenses.

    What happened to Will could be blamed on bad decisions, or just bad luck. He probably pushed himself a little too much. At his website, he says he was an “extreme sports athlete,” coaching and practicing gymnastics daily, surfing every morning, biking to work as a lifeguard, teaching kids to swim, and working toward a bioengineer- ing degree. Then, one day, he started limping in pain. The pain was diagnosed as plantar fasciitis, in which the connective tissue on the sole of the foot becomes painfully inflamed.

    Will went to doctors. He was told to ice and rest the foot. That didn’t work. Then he was told to wear a soft cast. That’s what eventually led to the erythromelalgia.

    Last week Will stopped at A Safe Place in Monterey to have breakfast with a small group of homeless youths from the area. Seated at the table, surrounded by food, he looked like a boy of 14.

    “Erythromelalgia is extremely rare,” Will said. “One in 300,000 get this. I have burning pain if I’m too warm, or if I walk or stand about 20 minutes. And it’s incurable.”

    The throbbing and burning began while the cast was in place. “It cut off my circulation and killed the nerves,” he said. “Sodium channel overactivity resulted in extreme burning. When it’s 75 out, it feels like 120 to me.”

    To cool off, Will soaks his feet in bowls of cold water. He’s suffered from erythromelalgia for three years now.

    At his website, this is how Will describes his life: “Every day wake up feeling like my feet and legs are on fire. I force myself to wake up and get out of bed and quickly dunk my feet in the water that I keep next to my bed. It instantly feels like the fire is being put out, but at a price. To put out the fire feeling I have to change my body temperature drastically, and it feels horrible. The instant I touch my feet to the cold water I cringe, because of the painful cold sensation . But it’s way better than feeling the fire. The fire is horrible. It feels like a chemical burn all the way down to the bone. I feel this every day, and it drives my crazy.

    “After 30 to 40 minutes of dunking my feet in cold water, I stick them under a fan for even longer. When the water leaves my skin, it makes my feet feel even colder. I do this on and off until my feet feel literally like ice cubes, and they are black/purple at this point. This is when I can walk. And this happens every single morning, and every time I try to walk, and every time I get too warm. I have erythromelalgia, and this is my life. I follow shadows, jump in freezers at the store, anything to stay cold. If I’m not cold, I’m on fire, and it’s the worst feeling I’ve ever felt in my life.”

    Because of his disability, Will applied for SSI. “I’ve been denied twice,” he said.

    Will can’t really turn to his parents for help anymore. Dad has other children to care for and lots of bills. Mom just isn’t well. “My Mom is in L.A. and suffers from PTSD (Post Traumatic Stress Disorder). She’s a street person, and she’s really, truly crazy. She uses a lot of drugs, and her friends are the same way,” he said. The stress that impacted Will’s mother came in part from having a daughter with major medical issues.

    Despite all her problems, Will’s Mom was able to help him in one way. When a friend went to jail, she was given a motor home, which she then passed on to Will. He now lives in the vehicle with a girlfriend who suffers from a vasospastic disorder called Raynaud’s Syndrome. “She’s really cold and I’m really hot, so we neutralize each other,” he said.

    For money, Will does whatever he can. He’s always looking for books and such to sell on eBay, and he published a book of his own through Kindle— The Plantar Fasciitis Survival Guide. At his website, williamserythromelalgiasuportsite.weebly.com, one can read about his struggles with erythromelalgia, look at photos, browse through his college records, or make a donation.

    And finally, there’s always begging on the street. “One time I made $140 in a hour of begging,” he noted.

    Will had to give up on his dream of a career in bioengineering, making prosthetic limbs and building robots. If he uses his hands too much, the erythromelalgia worsens. Now he’s planning on a degree in counseling at CSUMB. Someday when he’s sitting at a desk, talking with clients, he’ll have those burning feet in bowls of cold water, out of sight, under the desk.

    Will is a survivor.

    posted to Cedar Street Times on November 9, 2012

    Topics: Homeless Chronicles

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