Breaking the stigma

It was a pleasure to see a friend of mine, Tom Albright, in Denver a few weeks ago at the National Hemophilia Foundation meeting. Always cheerful, always proactive, he’s the kind of guy whose goodwill stays with you long after he’s gone. You’d never know he had suffered so much, but read his story, and listen to his message. As usual, he’s inspiring!

“Some of you may have lead a life similar to mine. My limbs and joints were damaged by hemophilic arthopathy at a very young age. The many bleeds I had as a baby, toddler, and adolescent destroyed, deformed, and limited my joints. This led to many other secondary problems: major orthopedic surgery at ages 5 and 7 (once on each ankle to lengthen the Achilles tendons); countless pairs of braces, crutches; traction; being bed-ridden and wheelchair bound. All this led to severe muscle atrophy, limited joint movement, altered walking gait, and altered standing positions.

“Now, my left foot is really messed up from the Achilles tendon lengthening surgery when I was 5. That foot is a size 8 1/2 while my right is a size 10; my feet have been that way since I was 5. I lost all my left ankle joint motion from that surgery and the weeks I spent in a cast afterwards.

“I was embarrassed to show my legs by wearing swimsuits or shorts in public for a long time in my life and still have to deal with the stares from others even though I’ve gotten over being embarrassed. I realized a long time ago that people come in all shapes and sizes; and this is the way God made me! Still I can’t help but notice some hemophilic Bro’s feel like me and hide inside shoes and pants most of the time.

“It used to be most embarrassing for me when it came to courting girls in high school; adulthood brought me girls who didn’t “see” the deformities. My wife of 20 years is the last one of those girls. Once I was married I knew I was always going to be faithful to my wife, so I said “to hell with embarrassment” and started wearing shorts and sandals all the time. It was great! I wear shorts and sandals all the time now even when the cool dudes are wearing pants in the summer heat. Nobody ever makes me feel uncomfortable about my skinny, deformed legs and arms. I bring it up more than anyone else, just to joke around.

“To me this as an issue is not discussed enough, if at all; maybe because people find it embarrassing.

“Let’s break this ‘stigma.’ The only way to do that is to bring our deformed limbs out of the closet. I think others need to see them. I know I do. I feel alone when I don’t actually see the same hemophilia limb deformities in others. We all see Bro’s with the “Hemophilia Strut” walking around at hemophilia meetings, so it’s no secret that these deformities exist. Proudly showing our limbs, or showing photos of hemophilic limb deformities, could be useful to help any of our brothers who struggle with self-image. We could be positive role models and mentors for them!”

Tom Albright is a 45-year-old with factor IX deficiency who lives with his wife Sue in Arkansas.

Good Book I Just Read
Learning to Breathe by Alison Wright
A photojournalist who travels to all ends of the earth for her exciting profession survives a devastating bus accident in Laos in 2000. This book chronicles her accident, her injuries (unbelievable, even to the medical profession), how she stayed alive for 14 hours with no medical care, and her eventually recovery. She not only recovered, but set the bar higher in the subsequent years while still in chronic pain, by scuba diving, white water rafting in Africa and the ultimate, climbing Mt. Kilimanjaro. It’s almost too preposterous to believe, but Wright is no ordinary person. Her travels throughout Asia had put her in touch with Buddhism and serious training in meditating, and she leaned on her techniques to survive. Wright uses “breathing” as a metaphor for her life after the accident. In meditating, breathing is a technique of focusing on the moment, in an effort to slow life down and slow our thinking, to enjoy the present, and thus life. Wright survived with many scars and many years of surgeries, but came out wiser, more sensitive and with even greater adventure. You’ll be amazed by all the activities she does. The story is gripping and motivating, but the writing style I will admit is a bit flat, especially considering the incredibly rich places she has been and things she has seen. Wright is obviously more comfortable telling stories through her photos; this one could have benefited from more sophisticated editing and writing to do the story and places justice. For most people, the story itself will be enough. Three stars.

Camp: Dancing, Swimming, Learning, Bonding

Yesterday was so busy at camp I didn’t have a second to blog. The day started with some wake-up exercises on the lawn, in this case a dodge ball game. All the campers and staff are wearing T-shirts with the camp name on it–“Yo si pudeo!” After breakfast, the campers listened to a lecture by a lively orthopedic surgeon who used Bob the Puppet (renamed “Pepe”) to demonstrate joint damage in a kid-friendly way. Then off to the pool! Wow, did the children come alive! All campers are divided into groups, who give themselves team names (like the Stars, or Alpha-Omega), chaperoned by teens with hemophilia, who used to be campers themselves. And they were wonderful! Like big brothers to their little “hermanos” with hemophilia.

After lunch came another lecture, then arts and crafts, with board games for those who opted out of arts and crafts. Then practice of the big event–a talent show! And what a time it was. What imagination! Each team presented a skit, something to do with hemophilia and empowerment. No one told them what to do. They just instinctively wanted to do skits that showed how they were empowered and who anyone could be empowered. Most of the skits were hysterical, showing comical situations and exaggerated characters. But one took a serious turn when it showed a father coming home drunk and striking his child with hemophilia, the mother helpless. Domestic abuse is a huge problem in Latin America and the boys deftly integrated this social problem with hemophilia. Prizes were awarded to everyone, and then the real fun began. Dominicans are expert dancers and the DJ (Horatio, former camper) pumped out some wild merengue and salsa for everyone to dance to. Not even hemophilia and arthropathy can keep these boys from dancing. We had a conga line, contests, and everyone–from patient to staff to hematologist and nurse–got in on the fun.

Today was a bit more subdued. At least no bleeds as a result of the dancing, thankfully! The camp celebrated a Catholic Mass in the pavilion after breakfast, followed by heart warming testimonials from the older boys about the role faith plays in their life with hemophilia. They spoke directly to the younger boys, instructing them to pray and keep faith even in the darkness of a bad bleed. Later, everyone went for another swim, and then had lunch. The weather was beautiful, sunny and hot.

Though camp was only two and a half days, close bonds were formed, even for the new boys. We enrolled more boys into Save One Life, to help them financially. Tomorrow we will visit some of the boys in their humble homes.

Visit here to see all camp photos.

The bus arrived and everyone departed back to Santo Domingo, a quick jaunt, to congregate at the Robert Reid Cabral Hospital and to await some anxious parents. Happiness shown on the faces of both parents and child as they were reunited. The boys were armed with toys donated from the New England Hemophilia Association, and infused with factor donated from Project SHARE. Does it get any better than that? It was a great camp; it seemed so effortless, but tremendous planning and coordination goes into a project like this. We will miss all the boys dearly as another year passes. Hasta el proximo año !

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