I’ve tried to come up with a “classy” way to talk about sex with a disability and I don’t think I can do it. I don’t want to discuss sex now but I did experience something last night that I thought was worth posting about; mainly because I think my disability is fascinating.
There are a lot of medical terms I could throw at you to describe what I go through every day but I’m trying my best to simplify. To keep it brief, brain damage caused by stroke often leads to conditions that can have a variety of effects on the way the brain reads and translates physical sensations. A couple unavoidable terms are: Paresthesia and central pain syndrome (CPS). CPS is a condition where you feel pain throughout your body. It is nerve damage usually caused by brain or spinal injury. It can be disabling for some people as the pain can be constant and intense.
Then there’s paresthesia and hemiparesthesia. Paresthesia is when neurons incorrectly read stimuli to your skin, possibly resulting in pain and discomfort. Most people have experienced this. Just think of your leg falling asleep. When a body part falls asleep, it’s different every time, right? Sometimes you don’t realize it’s asleep until you stand and feel like someone replaced your leg with a stick; you don’t feel anything except that your weight is on something unstable. Sometimes you feel it right away because there are tingles that feel like static.
The difference between CPS and paresthesia is one can occur without provocation. What I’ve learned is that, like each time your leg falls asleep the sensation is different, the same can apply to your affected side. Four years with this has also taught me that it can come in degrees from mild to severe and that it can be splotchy. I don’t have CPS because I only feel pain that I can usually explain (like joint pain related to pressure change). My left body is, however, without correct feeling and often misreads sensations from external stimuli.
What does this have to do with sex? It has a lot and a little to do with sex. I’m not one for pain during sex. I don’t mind a spanking or some hair pulling when it fits but I’m not into hot wax or whips. When I first found out I was paralyzed on the left side I had no feeling or movement whatsoever. Within a week or two I started to feel again and it was near unbearably painful any time my skin made contact with anything. I often described it as feeling like Indian burn (not very PC, sorry) with hands wrapped in high-grade sandpaper at the lightest touch.
I learned quickly that I don’t feel anything at room temperature, I have a slow register to heat and anything the slightest bit cooler than room temperature is my enemy. A lot of this has gotten better which is common; they call it chronic and not permanent for a reason. But there was a long adjustment period. Kasper was afraid to hurt me by touching me so sex was awkward; he was also worried I’d stroke out again. To this day, anytime he rubs my back he only rubs my right side. I told him to rub it all or don’t bother but what I haven’t told him is that the “pain” his touch causes is pleasurable. It kind of feels like his fingertips have a thousand tiny sharp points on them. I get shivers thinking of it now. When he does touch my left back it sends a ripple of tingles radiating throughout all of my left backside. How could I not enjoy that? I think it registers as painful because it’s like jolting your nerve endings awake from a deep slumber; they go back to sleep the moment the touch has passed.
Sometimes my left boob hurts for no reason. It feels heavier than my right boob. Sometimes my left nipple feels like someone is holding an ice-cube to it while I’m sitting there watching TV or trying to cook dinner. It doesn’t feel very good. Sometimes I have to hold my boob to lighten the load; sometimes I have to massage my nipple which can be really awkward in public (pregnant women/mothers, you know what I mean, eh?). I have no idea if these things are normal for hemiparetic people or non-pregnant women or both but they are incredibly irritating. It’s only my left boob so I assume it’s related to my disability, explaining why it’s suddenly intensely painful.
Like I said, I’m not into painful sex but I don’t stop a party from going where the passion brings it unless I’m turned off. I don’t know about other women, but I’ve never found anyone playing with my nipples enjoyable. I don’t hate it, I just get nothing out of it. I think Kasper picked up on this at some point during our ten years together because he fondles my boobs for his enjoyment and I don’t mind. But last night, as I sat on the couch, he reached over and grabbed my left boob knowing I wouldn’t feel it then started tweaking my nipple just for fun, knowing I wouldn’t feel it and…I felt it. Like I said, I’ve never found anything exciting about anyone messing with my boob buttons before and then BAM all of a sudden I was like
After I convinced him to help me experiment (it wasn’t difficult), I learned I can only feel him touch my nipple. Not my under boob, not my side boob, not even the part closest to midline where I start feeling my right body. Naturally, we had sex. It was only logical to take this experiment to the next level. And I discovered that pinching my nipple during sex is absolutely amazing. But only the left one, the right one is a boring old lady wishing you’d keep the noise down.
I am once again reminded that the body and the power that controls it are absolutely mind boggling and amazing.