July 17, 2019

One thing they don’t tell you about rare conditions is that the testing can be grueling. The doctor just wants to make sure they know what you have, so you feel confident that you know what you have. But the tests… the tests can be nothing short of torture. For one of my conditions, I spent overnight in a hospital with an IV so they could inject something and then test my blood. They did this every hour, even when I was “asleep.”


That was in my early 20s. In my teens, I had to run up and down a set of stairs on an empty stomach and then have blood taken two or three times during that ordeal. I’m not what you would call athletic so this was already difficult. But I think what made it especially hard was that I hadn’t gone through puberty, so I didn’t have the muscle mass of a normal teenager. This is, of course, what they were testing.


Kallmann’s Syndrome is a condition that you’re born with and according to the National Library of Medicine is:


a form of hypogonadotropic hypogonadism, which is a condition resulting from a lack of production of certain hormones that direct sexual development


The mechanisms in my endocrine system that trigger my sex hormones did not develop in utero. Though I was born male and consider myself a man, my body never developed into manhood, at least not without medical intervention. After going through this battery of tests, they confirmed this diagnosis. Kallmann’s Syndrome is marked by a distinct symptom, seemingly unrelated to the endocrine system: a lack of sense of smell. I’ve never been able to smell, but I really became aware of it when I was about 6 years old. So, I’ve always known something was off. But after that test, running up and down the stairs, I knew for sure. That was more than 30 years ago.


Chronic conditions require “maintenance,” regular treatments and testing. If you’re lucky, you can settle into a regular maintenance routine. For me, that’s hormone replacement therapy, a weekly intramuscular injection. It’s taken me decades to get comfortable with this process. (I’ve tried others--patches and creams--but none are as effective.) Years of uneven compliance set my hormones on a rollercoaster, but the moment I could be consistent about it, the better I felt. With the endocrine system anyway, the body wants a constant and regular dose.


You think once you’re on your maintenance regimen you’re done. You think, I can live life like a normal person. And then you remember comparing yourself to others isn’t very self-compassionate. The truth is that I’m no more or less normal than anyone else. Everybody’s got something. And when you’ve got something, you can’t help but be reminded of it, even when the treatment is working and you’re keeping up with it. Chronic conditions weave their way into every aspect of your life, such that even when you think you have it under control, it finds a way to make you distrust everything all over again.

It’s called maintenance, but the truth is we aren’t vehicles or appliances. We’re human beings. And nothing is regular and everything is intertwined.


When I was 34 my wife gave birth to our first kid. If you’ve put two and two together you’ll have guessed that getting pregnant was no walk in the park. If my body doesn’t produce its own testosterone, it definitely doesn’t produce its own sperm. But that’s a story for another essay. (In truth it can produce hormones and sperm, but the mechanisms for signaling these processes are broken.)


But we did it. Here we were, parents by the miracle of modern science. He was a perfect baby. And here we are, 13 years later, and he is a perfect young man.


My son is going through puberty, hitting him earlier than it hit most of his friends. He’s got hair where he once did not, and his voice is dropping. He’s growing -- nearly 5 inches in the last year. He stands taller than his friends, and the boys among them are still high-pitched and without browning fuzz on their upper lip.


I look at him and feel lost. I don’t know how to help him, unable to counsel him in what he’s going through. My puberty was rushed, artificial, and sometimes I feel like it was incomplete, subject to my erratic compliance with the treatment. And suddenly those feelings of insecurity that plague every teenager--but come from a different place for me--those feelings flood my soul, now combined with the inherent pride of parenthood. Look at the man he’s becoming! How can I guide him when I don’t really get what he’s going through?


So one of us grows fast and the other grew slow, and tremendous in my field of vision is the gap between us, a gap created by Kallmann’s Syndrome. It’s every parent’s anxiety, about the growing space between themselves and their child, and yet Kallmann’s Syndrome makes it bigger. I look at the gap, and I think on my experience, and I despair that I shall never overcome this, that I shall never be the father he needs me to be.


This is what makes Kallmann’s Syndrome insidious. At once relatively easy to maintain and treat and yet snaking its way into every aspect of my life, striking only when I feel confident in my control over it. Just like every time before, my identity is drowned out by this single aspect, the condition, as if it is the single governing aspect of my existence.


Part of coping with a chronic condition is understanding its contribution to your identity, while acknowledging it isn’t the totality of your identity. No matter how much it tries to dominate your field of vision you are more than the condition. I am more than Kallmann’s Syndrome. Understanding that is what let me overcome all the gaps that came before, made larger by Kallmann’s Syndrome always lurking in the background, but overcome nonetheless. These are the gaps that stood between me and a career, between me and a lasting, loving marriage, between me and parenthood. And I overcame all of them.


There’s no single aspect of my identity that motivates me more than fatherhood. Parenthood, at almost every level, is trying to be your authentic self, but also pushing yourself to be more than you already are. So here we are: he grows fast and I grew slow. But we both stand out--sure in different ways. Everyone remarks on how tall he’s getting. Everyone used to tell me that I’d appreciate looking young. What I know for sure is that, at that age, no one likes to stand out from the crowd. And here’s our common ground, our bodies introducing challenges where we wished none existed. Despite Kallmann’s, or maybe because of it, I have more to offer my son because I’m more than just the condition.






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