In researching Kallman’s, I found the following:
“The features of Kallmann syndrome vary, even among affected people in the same family. Additional signs and symptoms can include a failure of one kidney to develop (unilateral renal agenesis), a cleft lip with or without an opening in the roof of the mouth (a cleft palate), abnormal eye movements, hearing loss, and abnormalities of tooth development. Some affected individuals have a condition called bimanual synkinesis, in which the movements of one hand are mirrored by the other hand. Bimanual synkinesis can make it difficult to do tasks that require the hands to move separately, such as playing a musical instrument.” http://ghr.nlm.nih.gov/condition/kallmann-syndromeSo that’s why I could never get the hang of playing the piano, despite lessons! I simply can’t get my right hand to do something different from my right. (Then how come I can type?) I do have a weirdly shaped mouth and crooked teeth (that piece of skin under the nose and behind the lip is very long). However, my hearing is very acute, my kidneys are super, and while I am very nearsighted, I don’t think my eyes move abnormally. I’m really quite healthy, except for the normal old age stuff.
Sorry—I got a little snarky there. I am so used to all those things, even the lack of smell, that I don’t mourn the loss of them. I consider myself so incredibly blessed—mostly because I did have a child—that all those other quasi-symptoms seems small (although I have to admit a non-functioning kidney would not be a quasi-symptom, nor would a cleft palate).
Now, in terms of the child, it went like this: I took Perganol injections. It makes a woman produce lots of eggs, something I could never do naturally. This is how we get Octomoms. Except that I had a very wise doctor who wanted to avoid multiple pregnancies and law suits, so he made sure eight eggs would not be fertilized. He wasn’t even crazy about twins, although I thought, at the time, that twins would be cool and would save money—two for the price of one.
I had Perganol injections in Fall of 1987, and they didn’t work; I had them in March of 1988 and they did, and I had my son in December, four days before my own thirty-third birthday. When he was two and two-and-a-half, I went through the procedure again, but neither time was it successful. My dream of a sibling for my son never materialized, and that is one of the regrets of my life. I would have been willing to adopt, and actually would adopt a baby tomorrow if someone handed me one, but we had too many personal problems back then to get past the home study.
By the way, if anyone is wondering:
I like sex and I don’t know if my experience of it is any different than anyone else’s. I think knowing I couldn’t get pregnant helped, rather than hurt. This would lead into a discussion of sexual experience in general and my faith. We are not bodies; we are not souls imprisoned in bodies; we are souls who get to live in bodies. To treat the bodily experience as evil is to deny the rightness and validity and value of the incarnation of Christ. Sex is important and pleasurable, but it is not a need like food or drink or shelter. It must be within marriage. These ideas are so foreign to most today that I might as well be writing it in Mandarin Chinese. However, don’t take this to mean that I have put sex on the shelf because of this severe hormonal deficiency I live with. Even now, totally off my hormones, sex is a good thing. Just not as often, but that’s another story.
Second, about the lack of smelling ability. We Kallmanners don’t have olfactory bulbs; something about the pituitary gland not sending signals to other parts in utero is involved. I do not pretend to understand the genetic end of it. I really, really have a poor educational background there. My parents have a sense of smell; my son does. I do not know of anyone else in the family who has or had this condition, and I come from an incredibly large family. My maternal grandmother had eighteen grandchildren. My paternal grandmother had twelve children. There are a lot of us Grahams and Fraleys and Roses running around.
I’ll be the first to say the lack of smell is just a plain nuisance. I could never smell my son’s poopy diaper; I had to look—or feel. I can’t smell farts, B.O., bad breath, stinky feet. It’s all the same to me. If the car or the house has some odor of fatal gas or chemical, I would be dead before I knew it. And cooking: Oh, my. How many arguments have my husband and I had over that. If it’s burning, how would I know? A few years ago a friend brought banana nut muffins to work and I was enjoying them. “So this is what banana nut muffins are supposed to taste like.” She looked at me quizzically. “I think I always burn them,” I explained. “I can’t smell them.” My sense of taste is not acute, but I don’t think I suffer too much from the lack of smell. I depend a lot on the texture of food; trust me, I enjoy food too much, as my extra 25 pounds will attest. Last week my husband ordered a dish from a Chinese restaurant. This establishment cooked it with lots of squid. I couldn’t smell the squid, but I surely had a nauseous reaction to it (ate it in Italy; fishy, rubbery baloney was my impression).
Obviously, some social problems can come from not being able to smell. I am always fearful that I just plain stink. I take care not to, but it still happens. All smell is vicarious, surrogate. I worry that my writing will lack an authenticity because of this deficiency. Close family members have no trouble telling me if I do. My mother used to tell me my hair smelled like a dog’s, that is, when I was growing up she would say that. My husband lets me know that I have on too much perfume. My son is quick to notice smells; his taste and smell are even more acute than his
father’s. At least I can enjoy the dogs whether they have a stench or not.
But the real question is that of sexual identity. Do I feel like a woman? Of course I do. I have all the working parts; they just didn’t have any gasoline. I like most things women do: a clean house (which is rarely achieved); clothes (very much—one of the reasons I love old movies is the beautiful outfits of the ‘30s, ‘40s, and ‘50s); children and being motherly. But I don’t like fru-fru, don’t see the need for 50 pairs of shoes, can take or leave a girl’s night out (although lunch with friends is one of the joys of living). I despise romance novels, finger- and toe-nail polish, the thought of plastic surgery for other than medical purposes; and I am indifferent all the celebrities I am supposed to love (Brad Pitt down to Oprah and on to The View ladies.)
What defines womanhood anyway? I really don’t know. I do not feel now that I am any less of a woman, but in the past I did. And don’t women have more freedom to be androgynous than men do? A man who knits is berated; a woman who likes to shoot guns is “cool.” A man who wants to be an elementary school teacher has to fight for respect from many (until he becomes the principal); a woman who wants to be a doctor is respected already. This is not to say discrimination does not exist; it does. I work in academia and despite their propensity for left-wing causes, academic men can sometimes be dreadful chauvinists. A woman who knows what’s she’s doing and isn’t afraid to speak her mind with tactful firmness surprises men and some women, and she will have to work hard to convince people she is well-meaning even if self-confident.
In looking through Kallman’s related websites, I came across the term “Intersex.” Apparently some folks are equating Kallman’s with some sort of hermaphroditism. I definitely don’t see that; in fact, I think that just makes any self-esteem problems worse. And intersex person would either have indicators of two types of sex organs; or, he/she has neither. As I said, Kallman’s sufferers have the working parts of their gender, they just lack the hormonal fuel to get it going. And sometimes this condition can be idiopathic, in that it is not genetically traceable. Along with the intersex “accusation” is that Kallman’s should be considered in a similar category with LGBT people. Now, anyone who knows me well would know my feelings on that one. Would we now have LGBTIK activitists?