I was trolling through my usual 3 online gay news sources(365gay.com, towleroad.com and advocate.com) when I ran across an article that I had to just nod as I read it. (mce_temp_url#) While I am not HIV+, the basic message is the same regardless of the actual illness. It is a rare gay man that can face a major illness in a potential partner and decide the risk (of death, of degeneration, of loss of mobility, so forth) is worth taking. Very rare, indeed.
I have Hereditary Neuropathy, specifically Charcot-Marie-Tooth type 1a, to be exact. This is a situation of genetics and eventual nerve and muscle degeneration. I get weaker as I get older. My hands shake as if I have a perpetual vibrator hidden in my wrists, on a low setting when I am calm and dialed to the max when adrenaline hits my system. I have constant pain that I have ignored most of my life but has gotten worse with age. I have constant fatigue that won’t go away regardless of sleep or lack of it. When I push my body too far and too hard, I get flu symptoms: fever, ache, upset stomach, more fatigue. If I REALLY push hard, I may end up flat on my back for as much as two weeks unable to move as my body throws a tantrum and goes on strike, literally.
One of the things that makes this such a pain to deal with is that no two people with CMT have exactly the same symptoms, even in the same family line. It mutates each generation, steadily worsening in effects and severity. True, the women folk in the family seem hit harder than the men, but I am worse than my grandmother and mother both. I can do anything your average person does, with a difference. It takes twice as long for a signal to travel along my nerves as it does for someone neuro-normal. So, the equation looks like this:
Twice the effort for half the result equals normal. My energy expenditure is part of the fatigue factor. I have a limited amount to deal with normal daily routines such as work, social, personal and family. I simply can’t do it. I rarely see my family now as I approach 40. Very rarely. Socially, I am a total homebody, content to wander the internet and Netflix. Work is becoming more difficult each year and is the major energy expenditure in my life. Which means my personal life is shrinking. Ask my husband.
This is where I tie it back to the gay men and phobias about imperfect health. Very few gay men stand outside of the body conscious and youth worshiping culture. Health is a jealous god and must be fed the sacrifice of gym memberships, vitamins, scrupulous weight watching, all without fail. A person with a disability has a hard time in that culture. I have experimented with watching reactions to my using a cane to when I do not. Eyes avoid and turn away. The discomfort is thick enough to bludgeon Harp Seals with. Often, the specter of HIV is pondered as I wind my tired way through a crowd of gay men in a bar or club. I must have it, since neuropathy can be one of the major symptoms of HIV and/or side-effect of HIV meds. Naturally, one leads to the next. The discomfort becomes acute and I politely withdraw my ill presence.
I was fortunate, somehow. My husband and I met at a bar. Cliche, true, but that is how it happened 16 years ago this September 9th. Yes, I remember the exact date we met. I had given up on dating again. It just didn’t seem worth the heartache and trouble to go through it over and over and over. So, I went to my local gay bar, not to browse the meat market aisle, but to get out of the house. I liked playing pool and that was my focus for going at all. I had a few friends there and a few who disliked me. Normal stuff.
One thing leads to another and I find myself rescuing my future husband from a complete villain who was not taking no for an answer. I couldn’t help overhearing the conversation and it finally got on my last nerve. I intervened and rescued FH(future husband from here on) from the dastard. Fast forward, making out in his car when he drove me home. We had spent 5 hours together at the bar. I finally gathered my will and pushed FH off of me with a firm no. I was not looking for a one-night stand, no thanks. As I got out of the car, FH wheedled my phone # out of me.
Over two weeks, he courted me daily with phone calls. We talked and conversations wandered the topical map as they do. I told him my condition. I figured that would put an end to the business and I could go back to my complacent aloneness in peace. Imagine my surprise when that wasn’t what happened. FH got on the internet and researched my condition. He learned all he could about it. He considered the immediate, short term and long term likelihoods of where I may end up physically. He found he could accept it. My jaw dropped and I scratched my head in sheer amazement. See, his particular thing was whether my condition is of a terminal nature… which it is not. That was the only thing he felt he could not handle or invest emotional ties with.
So, I got lucky. I count my blessings constantly. We have our ups and downs. He takes on more housework than seems fair. The agreement is that we need me working and bringing in money for the time being more than he needs equality in chore distribution. I just don’t have the energy for work and home chores. I do what I can, when I can. Now and then he needs to vent and I accept it. Compromises, partnership, communication. These make the marriage work.
Maybe it comes down to this: the majority of gay men are really gay little boys. They’ve not grown up. They haven’t really gotten past the ‘me, me, me’ stage and moved on in their emotional development. I am just as guilty, in all honesty. Still, it fits. That little boy arrogance. The self-centeredness where all life must revolve around him. The sheer joy in bullying others to conform to our standards. These are all traits little boys have and eventually grow past. Mostly. Gay men seem stuck. The objects of our discourses mature. Our vocabularies soar. Yet… our reactions, actions, emotional states and over-all maturity stagnate.
We still play the cooties game. We still turn our backs on those that are too outside our inner design for the universe and how it should be. We still lust for toys (clothes, cars, phones, fashion, homes), they just cost more. Our fears grow more exotic, but how we don’t deal with them stays the same. We fear to be less than perfect, for the world would reject us. Naturally, we know this because WE reject the less than perfect. Tit for tat, an arm punch forfeit.
So, the point? I have rambled on to the sound of my voice for so long, I seem to have lost it. Oh! There it is. Get over the fear. Accept that perfection of any kind is a wonderful ideal and completely impossible to achieve, ever. Accept that we are all flawed, often majorly, in some fashion. Live with it. Acknowledge the flaws and seek the positive traits. Weigh them. If the positive outweighs the negative in a way that you find you can bear, go for it. Take chances. Just maybe, you might grow up.