Sex and Intimacy following SCI

 Written by Anonymous

Illustration by Jessica Oddi

I injured my spinal cord early into my 20s. 

A young man about to begin his life. Life was turned upside down inside out back to front and I had to learn a whole new language. The language of spinal cord injury (SCI). Push is the new walk, sit is the new stand, roll is the new run and the question ‘why?’ is the most frequently muttered, thought, yelled, sobbed and spoken word. 

Along with my legs not working followed my bladder, my bowel, my body temperature regulation and then in my mind, near on most importantly at that age, the part that distinguished me from a woman, my reproductive system and all that would follow. 

Sex was a regular thought for me, as it would have been for anybody at that age discovering life with a partner. I had been with my girlfriend at the time for nearly 4 years.  It was a way that we would connect emotionally romantically and experimentally. Looking back now, it would legitimately be one of the best parts of being a young independent man. 

"I'm young fit strong and invincible" I would think. How wrong I was. 

Waking up one day completely paralysed, realising that you are now a quadriplegic and learning all of the things that were to follow as a result of paralysis was tormenting and heartbreaking for not only myself but everybody around me. With each day would come a new lesson, it would almost be as if I would have a memorial service for a part of my body that I would say goodbye to or a function of my body that would no longer exist. Never in my lifetime did I ever imagine becoming a quadriplegic, I would look at people in wheelchairs, give them five seconds of my day thinking about how hard it might be, but never invest any more emotion or time than that. “Not me,” “I’m young fit strong and invincible” I would think. How wrong I was.  I was soon one of those people. Nor could I imagine the adversity they would face on a daily basis.  The physical and mental torment.

I just wanted it to work like it used to, that natural movement, the natural response and amazing explosion of feelings and emotions with the pleasure and climax to finish. 

Early days we would try to defy the odds, do the medically impossible. I had my girlfriend hold me up in a standing position to see whether my legs would suddenly and miraculously start to work, I tried to empty my bowels without the use of any medication, use a normal toilet seat, tried to squeeze my bladder like I used to to wee, put chopsticks in my fingers to see if they would work. Surprise surprise, nothing worked. One night shortly after my accident I wanted to ‘get back on the horse’. It had been nearly 5 months and I was really starting to wonder what would happen down there.  Even with an indwelling catheter, I tried with my girlfriend to have sex, nothing was going to plan. The mind was willing in both parties, however the body wasn’t in one of them. I could not hold an erection, I could barely feel what was happening and I was starting to get really upset and frustrated. I just wanted it to work like it used to, that natural movement, the natural response and amazing explosion of feelings and emotions with the pleasure and climax to finish. This was the start of the end, sexually, for me.  Fortunately for me, my girlfriend was and is an amazing human being who saw through any of my deficits and shortfalls, she accepted everything that came with a quadriplegic and treated me no different.  

After that unsuccessful sexual experience, we left it there for sometime. There were occasions where I was still willing and we tried again and again. Through the assistance of viagra I was able to maintain erections, however the sensation wasn’t there for me, therefore I wasn’t enjoying it as much or at all but at the risk of being selfish I went along with it and eventually enjoyed parts of it.  However, in my mind, if I wasn’t doing it like I used to, I wasn’t doing it at all.  

It is courageous and brave to admit vulnerability, to show weakness and be extremely honest with everybody around you.

Now being nearly 7 years post injury I have learned a lot about connection on different levels other than sexual, I am now so much more emotionally aware and able to give affection/show love and give pleasure to my partner without my taking part like it used to happen before my injury. There are many times where I sit back and wonder if it will ever return, the enjoyment and freedom of sex. If you were to ask me what I would want back first if I was to get any function back, sexual function would be number one. We have experimented with a vibrator type product that would create an ejaculation for myself, however there was no pleasure in climax, rather the opposite. I have extreme autonomic dysreflexia and we said farewell to that toy. I have searched the internet far and wide and I have felt like a bit of a creep with the keywords that I have had to enter and potential forums I have had to go into and ask certain questions. Unfortunately, there just isn’t an outlet/info source out there at the moment for me.  

Fortunately I have made peace with my injury and nearly made peace with everything else that follows. I have accepted that some things are in the past and some things will never return to what they were. My relationship with my partner is amazing, honestly there’s nothing I would change about it, no SCI and all that follows would be nice and blatantly obvious! 

It is courageous and brave to admit vulnerability, to show weakness and be extremely honest with everybody around you. This is something my partner and I do daily, we support each other on every level, the emotional support that we provide each other goes far beyond the void that the lack of sexual function or activity that exists in my life has created. Spinal cord injury is debilitating, however, it has also shaped me and strengthened me in ways that no dumbbell, work out or exercise I could’ve done as an able-bodied man could ever have.

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Jessica Oddi (@oddi.jessica) is a disabled graphic designer in Canada with versatility to spare. She is particularly interested in collaborations involving much needed representation, inclusivity and empowerment.

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