My Story

I am the 4th of 5 sons, the only one with LMBBS. Born with an ulcer in August, 1958, the doctors joke 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. I am not growing. I am pale, sickly and thin. An extensive stay at Riley Children�s Hospital in Indianapolis results in no diagnosis, only that I am in the lower 2% of size for my age.

First grade, I can�t see the blackboard. So I start wearing glasses.
Third grade. A substitute teacher scolds me for playing on the wrong side of the playground. Why am I not on the other side with the other Kindergarteners? I defiantly inform her that indeed, I am in the third grade. Sixth grade or so I begin gaining weight.

I try but cannot seem to get the knack of riding a bike or mastering roller skates or any activity requiring 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�m night-blind and cannot see the night sky but would be more than willing to do a book report,. He cuts me no slack) I get lost in a darkened movie theatre and fall off people�s porches while Trick-or-Treating. I assume I am just a klutz.

In Jr. High all the other boys are growing, developing, and 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.

Driver�s Training. I flunk the eye exam for my trainer�s permit. I burst into tears. My father becomes angry because his son is demonstrating emotion in public. He makes me try to read road signs on the way home.

And I�m still a boy physically. Fifteen years old and gym class is a nightmare. Forget that I can�t 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 the 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? My father walks into my room one day without knocking and finds me searching for adult characteristics. More embarrassment. More anger.

My mother tells me she has made me a doctor�s appointment, for my weight. Well, with college in sight, it would be nice to slim down a little so I agree. The doctor walks in, no hellos, pulls down my pants and in 2 minutes he�s on the phone making me an appointment at the Cleveland Clinic. I am enraged that my parents have tricked me, betrayed me like this.

I enroll in college. For my P.E. requirement I choose billiards (a liberal education is so great!)
No showers after billiards. It was either that or bowling but the shoes don�t fit so I choose billiards. In fact my shoes never seem to fit. I grow up with feet as almost as wide as they are long. And they 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 diagnosis emerge. Retinitis Pigmentosa (they tell me I will probably be 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 begin to be treated as a novelty (No one had ever met anyone with LMBBS before. This was the Cleveland Clinic!) They have me laid out in my birthday suit and parade classes of co-ed wannbe doctors in to prod and poke and gawk. I think to myself "This must have been how the Elephant Man felt."

There is another problem. What I always thought was just a flabby chest was indeed breasts! Surgery is scheduled to correct my gynecomastia, a hormone imbalance I guess. 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. My metabolism shoots thru the roof and I achieve my lowest weight (124). But my sex drive is also off the scale and I am not yet married and find myself surrounded by co-eds all day long at a Big Ten university. Some men reading this will think "So what�s his problem?" But a significant event in April of 1978 makes this situation practically intolerable.

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. She doesn�t even mind certain "inadequacies" but loves me anyhow. 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 driver�s 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�s 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.

Looking for answers, the Lord directs me to His Word, specifically John chapter 9, the man born blind. His disciples ask Him, "Lord, why? Did his parents sin? Are you punishing this family for something his mother or father did wrong?" Jesus looks at them, kind of wondering where anyone would come up with such a preposterous theology as this and replies "No way, boys." This man was born blind so that God may be glorified." The man is healed twice. First, Jesus restores his physical sight. Later, the man receives his spiritual vision and the Lord indeed is glorified. This passage of Scripture serves as a cornerstone in terms of my life and faith. It is also the text of my first sermon that I ever deliver in a small Choctaw church in southeast Oklahoma while on a spring break missions trip.

Another difficult period follows when all our friends begin having babies. Adoption is not an option for us because we are always 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 can�t drive, but the RP (actually, retinal dystrophy is a better diagnosis) never seems to progress much over the years. I pray it never does.

Update!

Since writing this story, I have seen my vision deteriorate but improved with laser treatment (the follow-up to cataracts). Going from bright light to dark or vice-versa is difficult. Depth perception is greatly diminished. 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.

My weight has steadily risen since college and tops out at 242. I tried going on testosterone again but all I experienced was side effects without any of the benefits.

Blessings,
Tommy



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