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Sunday, December 07, 2008

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 (unbelivable, 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.

9 comments :

Anonymous said...

Tom Albright is my nephew and I am proud of his accomplishments and his readiness to show others that because a person is different physically doesn't mean they are different in the heart. I was there when he was born and there during some of his earlier years. Our family suffered along with Tom and his parents Vern and Charlene Albright as they struggled to keep on top of the bleeding and surgeries and hours of blood transfusions.

Marlene Gresham Bonney
Strawberry, Arizona

Anonymous said...

I have a big smile on my face in almost every photo taken of me as a child even though I was usually going through tough times. I still like to be happy and smile with others.
Tom Albright

Robbins' Nest said...

We met Tom shortly after we moved to the same town. We have a 1 year old severe hemophiliac and Tom's been an amazing resource for us! (I believe they are the only 2 hemo's in our area). Thank you Tom, for sharing your story and for being such an inspiration to us and our little guy. The Robbins' family.

Anonymous said...

I am Tom's cousin. I attended the NHF in Denver with him. The article is very accurate in talking about the "hemo strut". My oldest son had serious knee issues and due to better understanding, has less of a limp than they anticipated. I am in awe of the men who still get out there and live in their circumstances. What a blessing to know that there is a great support to "strut your stuff" even when it doesn't look like everyone elses stuff. Keep the faith guys and don't be afraid to change the language to fit the life you are living. I love the ideas of calling yourself as you see you.

Amy Maeder
Atlantic, Iowa
maeder@metc.net

Anonymous said...

Tom is our son and we are very proud of him and know that he has beat the odds they gave him as an infant. We are blessed that he received treatment at a young age at Shriner's Hospital as no one else was willing to do the surgery he needed...

Charlene Albright

Anonymous said...

Dear Charlene, You should be proud. Tom, with or without hemophilia or disability, is simply a lovely person to know. Always happy and upbeat, always proactive. He makes the world a better place. Happy holidays to all the Albrights and their families and friends! Laurie

Anonymous said...

I am also Tom's aunt....he has several!! I am the grandmother of Ben and Anthony who also have hemophilia. I like your legs Tom!

We are proud of Tom and all the other grandchildren/gr-grandchildren/gr-gr-grandchildren in our family.

Each of us carries a different burden and blessed to be called Children of God.

Anonymous said...

I am Tom's wife and I do remember him not wearing shorts, sandals or swim trunks when I met him. It took quite awhile before he gained the self-confidence to wear these items outside of the house (or in front of me). I remember asking him why he always work jeans and long pants during the very hot summer months in Phoenix (where we met). I never noticed anything any different with him physically than any other man. Once he overcame his shyness of wearing comfortable, cool clothing and footware, he just seemed so much happier and so "free". I'm very proud of Tom overcoming this obstacle and everything that hemophilia has him go through.

To the men with hemophilia:
Don't let hemophilia stand in the way of being truly happy (and comfortable) in life. Life is too short.

Susan Albright
Rogers, Arkansas

Colleen said...

Hi, my husband is the most amazing man I know - complete with severe hemophilia, two 'new ankles' (cadaver transplants) and a brand new elbow, er, less of elbow, after synovectomy/radial head excision a month ago. Every ounce of him is warrior and beautiful. As his wife of two years, but best friend and partner of 12 years - I see his scars and body changes as a public display of his courage and the challenges he's taken on and succeeded at. He prefers 3/4 length shorts for the same calf-shape reasons, but doesn't seem to mind his new elbow on display, although it is ACE wrapped most days. Every person and family I've met with hemophilia over the years has given me such great pause to understand the incredible compassion and heart we know, show and share, while having experienced so many challenges that can only be described as suffering sometimes. I'm so proud to contribute healing to our unique community and 'civilians' who care to listen, see, hear and understand as well. Thanks warriors all. Special shout out to the warrior wives and Moms. My Mom-in-law (Louise Cobb) is just an incredible teacher! Blessings all! Thanks for the Blog Tom!

 
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