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Home / Thoughts / Other's Thoughts / Late night ritual, dream come true

Late night ritual, dream come true

Written by Eric on Tuesday, March 4, 2008

My wife is in bed right now. When she goes to bed early, I often will use the late night hours to read the posts on this site and to wander the net, looking for others that have feelings like mine. It’s a bizarre ritual that I am finding myself growing ashamed of.

My wonderful wife does not know about my feelings, and I don’t know if I have BIID or not. I have chosen to hide this from everyone, and once in a while I will get the overwhelming urge to buy another "toy" but I don’t. I know she might find it–she might wonder what the hell is going on and where it came from. I can’t imagine that she would understand, and I would have to lie to her. I hate to lie. I suppose that, technically, it’s not a lie if someone doesn’t know about something. But if I were faced with a moment where I had to come clean, I would treat it just like I did when I told my family that I needed to change my sex. I would just say it. I know I can’t control the actions and emotions of others.

I’ll be 30 years old on Wednesday, but ever since around my freshman year of high school I have had back problems that have grown progressively worse: numbness, tingling, weakness, paralysis, pain (lots of that). I have had many doctors examine me through the years, only to hear them say they either cannot find a problem or they just hand me Vicodin. Those doctors were horrible!! How could they just give someone powerful narcotics without so much as a test?? An EMG, a cat-scan, an MRI, something?!?!

Two weeks ago I finally had an MRI, after a three-week long battle with my right leg and hips in agony, and what my doctor found is disappointing and thrilling all at once. He found that I have a genetic degenerative nerve disorder, one without a real name and one that effects many members of my family. My uncle has it, three of my cousins have it, my mother has it, my grandmother has it, my baby sister has it. It’s one that takes your legs from you, slowly and painfully, by removing the cushion between your vertebre. The spinal cord swells and the pressure causes excrutiating pain, loss of sensation, and mild paralysis. It’s affected my L5-S1, the degeneration is moderate and worsening, and it will move up my spine as time goes on, getting worse all the while. There is nothing doctors can do but perform physical therapy and eventually, give you canes and meds. My grandmother uses braces and canes and says her legs feel like logs. My mother has had many surgeries, epidurals, everything, and is looking at the possibility of another surgery before summer to assist with the pain by fusing 5 vertebre together in hopes of relieving some pressure. My baby sister is petrified. For some reason, I am happy.

At first I thought I was happy because I finally had an answer to my pain. I knew why I was hurting all the time, and I thought, "What a relief to finally know." But something happened… I felt happy that I was going to experience this forever. I felt happy that I would eventually need the chair I have wanted so badly, for so long. There is a part of me, probably the social worker inside me, that is livid about that. The rest of me is anxious and ready. He’s really smug; he says, "Bring it on."

So I found some websites with forums and conversations between people with degenerative nerve conditions–places where people talk about having issues in society and being looked at like they’re faking it. My mother thinks the entire family thinks she’s lying about her condition, though there is no payoff to lying. She gets no more attention (no one babies her) and she doesn’t take heavy drugs for her pain because she says they don’t work and only make her nauseas or cause her to puke. There are so many out there who feel a certain shame because there are people who lack the understanding and actually accuse them of faking their pain, and I thought about everyone here and all the people who don’t comment but come here everyday to read and know and not feel lonely… and I heard my wife say to me, "So that means that I am going to have to take care of you?" She said it tongue in cheek but with total flat truth at the same time. I said, "Yes." She said, "Well, I suppose I can do that, since you do things for me. But don’t get used to it." And I wanted to tell her.

My wife is in bed and I am on here at 2:30 in the morning, typing a story that no one has ever heard before. I can’t help but wonder whose life is affected more by this–mine, hers, or the people who read this post–and if it will even matter to me anymore when my legs stop working completely. Knowing that it’s only a matter of time doesn’t make it easier, also knowing that while I have gotten my wish, it’s a crap shoot. I might never use a chair, but this gives me a reason to say I need one. Only with time will it make any sense, and I can get my wife to accept it without knowing the truth.

You can’t fake this. People with BIID don’t fake it, they just test themselves with real life experiences. If it feels better when inside the identity, stay there. If not, well, you don’t have BIID. My advice: Be careful what you wish for.

Tags: BIID, Epidural, Surgery, Truth, Pain, Nerve Disorder