My Story~ Tommy Marker
I am the 4th of 5 sons. None of my three half-brothers nor my one full brother has LMBBS. My infancy was difficult as I was born with an ulcer in August, 1958. The doctors quip that I am worried about Khrushchev. As an infant I also have a bout of pneumonia, coming close to dying before I ever have the chance to live.
My mother notices early on something is not quite right with me as I am not growing. A pale, sickly and thin little boy, I am booked for an extensive stay at Riley Children Hospital in Indianapolis but the sabbatical results in no diagnosis, only that I am in the lower two per cent of size for my age.
First grade, the blackboard is but a blur. So I start wearing glasses. Throughout my schooling and even into college, it is assumed that I am much younger than I really am. The weight begins to rise around the sixth grade or so.
Try as I might, I cannot get the knack of riding a bike or mastering roller skates or many of the other normal childhood activities which require balance. When the family camps and marvels at a star filled sky, I look up and can't share in the spectacle. Later in college I take Astronomy. When the assignment calls for drawing the night sky I inform the professor that I am night-blind and cannot make out where the stars are located. He cuts me no slack. I get lost in a darkened movie theater and fall off front porches while Trick-or-Treating. I assume I am just a klutz.
In Jr. High the other boys begin to grow and develop muscles and facial hair. Voices deepen. Meanwhile, here I sit, the shortest kid in class with nary a sign of manhood. I read that some boys mature later than others. And so I wait.
Drivers Training. Flunking the eye exam for my trainer permit, I burst into tears. Dad is angry and ashamed because his 15 year old son cries in public. He makes me street signs on the way home.
And I'm still a boy physically. Fifteen years old and gym class is a nightmare. Forget that I cannot do a chin-up. Not important it takes me 15 minutes to "run" the mile. When I go back to take a shower, I am petrified someone will know, that everyone will know, Tommy doesn't have the "stuff" to be a man. Oh God, when will it happen?
A better prescription of eye glasses puts me over the line just enough to get my drivers license. At least I have that experience to share with others my age.
May 1976. I graduate high school. 17 years of age with the body of a chubby 9 year old. I wonder to myself. Is this a record? Do I qualify for The Guinness Book of World Records? Or rather, do I fit in more with the freaks I read about in Ripley's Believe It or Not? Dad walks into my room one day without knocking and finds me searching for adult characteristics. More embarrassment. More anger.
Mom tells me she has made me an appointment to go see our family physician, for my weight. Well, with college in sight, it would be nice to slim down a little so I agree. He walks in, says absolutely nothing to me, yanks down my pants and in two minutes the jerk is on the phone making me an appointment at the Cleveland Clinic. I seethe with rage, feeling that my parents have betrayed me like this.
Enrolled now in college, I am faced with choosing a P.E. requirement. So, I choose billiards.
No showers after billiards. Who said a liberal education was a waste of time? My other option was bowling but the shoes don’t fit. In fact my shoes never seem to fit. I grow up with feet as almost as wide as they are long. And the shoes I am forced to buy at exorbitant prices are always plain black, plain brown or some other god-awful design.
Mom and I go to Cleveland. I meet with specialists in the field of endocrinology. After a comprehensive interview, they discover my vision problems so they also send me to an ophthalmologist. When everyone is done testing and interviewing, two diagnoses emerge. Retinitis Pigmentosa (they tell me I will probably go blind by my 40th birthday) and a rare disorder call Laurence-Moon-Biedl Syndrome. I think of Lawrence Harvey, Rev. Moon and Beetle Bailey. Way my mind works, I guess.
I became quite a novelty around the hospital. No one had ever met anyone with LMBBS before. This was the Cleveland Clinic circa 1976! They have me laid out in my birthday suit and parade classes of male and female wannbe doctors in to prod and poke and gawk. I think to myself "This must have been how the Elephant Man felt."
And then there is my flabby chest. Man-boobs, or so I thought. Nosirreebob, a hormone imbalance has produced actual female breasts with female nipples! Surgery is scheduled to correct my gynecomastia. At no point does anyone suggest I might want to talk to a therapist about what all this is doing to me emotionally or psychologically. I try to put my best face on it all but secretly I wonder how I will ever be able to live a normal life.
They put me on a male hormone. The shots are painful. I need them in my hip twice a week. They tell me that I can go on Delatestral one shot every three weeks but my chances for fathering a child are greatly diminished. Me? Father a child and have him grow up like I did? No way. So Delatestral it is. Each day the search for manhood continues. Then, “IT” happens. June 15, 1977. Exactly 18 years and 10 months of age. First thing I do is what every red-blooded American boy does given these circumstances; I call my mother. We do the dance of joy on the phone. She asks me how I know. "MOTHER!!!" I begin a list of girls who might go out with me.
In the next 18 months, my body changes. My height increases 3 inches to 5 feet 2 inches tall. The hypogonadism unfortunately is not affected. The testosterone has two other effects, one positive, the other not so much. 
I find the Lord. Or to be more theologically correct, the Lord finds me. I wasn't really looking for Him but He sure was pursuing me; my heart, my mind, my soul and yes, even my body. I surrender to His authority in my life but still struggle with my libido.
1981. 23 years old. Debbie is back in my life. We knew each other in high school and even went to the prom but we were never high school sweethearts. After graduation we went our separate ways and even lost touch. But mutual friends intervene (as does the Lord) and in 3 months we are husband and wife. Before that day, though, I tell her all about LMBBS. I want her to know all the ramifications, including no children and one day possibly going blind. This deters her not. She is one incredible woman. Even certain "inadequacies" do not seem to bother her. She loves me as I am. Life is good.
September, 1982. Less than a year after being pronounced husband and wife, I flunk yet again another vision test to renew my drivers license. This time, no prescription is going to save me. I am declared legally blind, never to drive again. My mother, my wife and I sit in the doctor office, stunned. If it was a question of acuity, says the doctor, we could fight it. But my visual fields are measured at 5 degrees. Tunnel vision. We can't fight that, he says.
Another difficult period follows when all our friends begin having babies. Adoption is not an option for us because we always hover near the poverty line. Adoption is expensive and our home situation is never stable enough financially. Debbie would have made a wonderful mother.
In 1986 we sense the Lord's leading and enter Bible School at Moody Bible Institute in Chicago. In 1990 we move to a quiet hamlet in western Kansas (population shift from 3,000,000 to 50 in 24 hours!) to begin ministering in a Baptist church.
Around 1998, I begin having problems. I run into walls in my own home. I am close to my 40th birthday. I remember what they said at the Cleveland Clinic and begin considering guide dogs. Then I have cataract surgery and my vision is restored to the point I can function again. I still cannot drive, but the rod-cone dystrophy (a better diagnosis) never seems to progress much over the years.
Not to say there is no change. My vision deteriorates in a number of ways including depth perception and an oversensitivity to light. Twice since the cataract removal in the late 90s has the cloudiness threatened to undo me but my vision improved each time with laser treatments. My weight tops out at just under 260 in the early spring 2011. By the summer, however, I have it back down in the 240s.
After being denied by the state of Indiana for financial assistance in 1982, they came through in 2005. After moving to Pennsylvania in 2007, the state set me up with cane training and a number of wonderful gadgets that help me fulfill my professional and personal responsibilities. No longer do I consider myself a freak but rather a child of God made in His image. I have value and purpose as does every person, regardless of our physical limitations. I continue to be buoyed by an awesome God, a devoted wife, a supportive church and an on-line family second to none that I will treasure forever.
Blessings,
Tommy
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