Should I Talk About Sex?

I want to talk about sex. The challenge is that I am not sure what to say, how to say it, what to talk about, what to leave alone, what to share, what to keep private. The reality is that sex is an important part of my life. I know this may seem creepy for my kids, maybe even for my Mom. I know that this topic is awkward for some of those who are close to me, perhaps even moreso for those who interact with me on a daily basis. Sex is taboo, especially when it comes to those of us with challenges in this arena. Add a terminal illness and you have an impossible recipe for non-disclosure. Nobody wants to hear about sex from a terminally ill 59 year old in a wheelchair.

Yet I know this is an important topic. I know there are lots of people out there struggling with the same things I struggle with. How do you maintain your sexuality when you lose so much of yourself with this disease, or any other disease like this? How do you do what you want to do when your body completely fails in its assigned tasks? How can you be sexual with the same person who helps you bathe, or shower, or get in and out of bed, or dress? How can you feel intimate with the person who, just a few minutes ago, had to clean your penis or vagina because you can't do it on your own?

Human sexuality is such a complex question, becoming even more complex when you intermingle the challenges of illness. I hear from any number of men and women with ALS that their identity as a sexual being goes missing quickly, almost immediately as their lover turns into their caregiver. I hear from women who want sexual contact but can't get it thanks to the ravages of this illness. I hear from men who can still get an erection but can't move their body in the ways that intimacy desires, can't do what is so natural and simple for so many others.

We with ALS are not all elderly, or even approaching elderly. So many are so young, in their 20's and 30's and 40's. So many of us are at an age where sexual contact, sexual intercourse, sexual fulfillment is a critical part of our internal image. We are sexual creatures; ALS steals that from us, making us into creatures needing care instead of creatures needing physical passion. I remember one woman saying to me that what she really wanted was for her husband to have sex with her, but he wouldn't; he was afraid he would break her. Our bodies desire yet cannot deliver.

So what do I say? How graphic do I get? How much of this matters or is even of interest? Nobody really wants to know about my sex life, yet that very discussion might help many who struggle with the damning combination of wheelchairs, diminishing strength, loss of control. Plain and true, I just don't know what to say. But it matters. So someone tell me. I need to know if I should, or if this is the one topic that just shouldn't make it into my blog. Tell me!