As a patient here, I have proven that I can not take care of myself. That means other people need to do everything for me. You know it's bad when you can't wipe your own ass. (I stopped being able to do that years ago.) What's really awkward is having one or two CNAs or nurses asking you why you are making noises as they examine and wipe your most private areas. I am on my back with my legs wide open, and I can feel what they are doing. I know it's necessary, and they are just doing their job, but it is a testament to who they are normally examining that they do not expect anyone to react.
When I was first diagnosed with MS, I was not dating anyone, so I did not realize how much sensation had diminished down there. I had never needed anything but myself to get things going, but now was a different story. The complete and utter non-response of my body scared me, but I dealt with it the only way I knew how. Denial. I didn't attempt anything again for years. Somehow, I was fine leading a completely asexual life. It just didn't occur to me.
I had dated someone for a few months in 2000, I was diagnosed in 2002 (when nothing happened), and the next time I thought about sex was 2014. I turned around and realized there had been nothing sexual in my life for nearly 15 years! It worried me a little, but “Oh well,” I thought, “I guess that part of my life is over.” Not so fast, little missy.
In the summer of 2014, my mom and I traveled to an expensive old hotel in Waikiki for a family friend's wedding. For me, the best part happened as I was waiting for my sister to pick me up and take me to the airport. I asked someone near me if they could watch my luggage as I went to the restroom. “Sure,” he said “I'm a Marine.” Then you are more than qualified to watch my bags, I thought. We struck up an amazing conversation. 20 minutes later, I had to tear myself away to go to the restroom. When my sister arrived, he grabbed my bag and walked me to her car. “Let me give you my email so we can keep in touch,” he said. Yes, please! I thought.
When I got to Maui that evening and was lying in bed, as I was reviewing the encounter, a rush of feeling came over me. Oh, I thought, I just hadn't found the right person to unlock all the pent-up tension I had. From then on, I thought about nothing but sex 24/7 until I was able to find a guy on Maui who could help me do the deed. What followed was 5 years of different physical relationships until my interest in sex petered out once again. The difference this time is that I am not completely dead down there.
What I now realize was that I was not looking simply for sex per se, but for connection or intimacy. While I don't need sex now, being changed and cleaned can be a challenge. As I say, the only thing worse than being wiped is not being wiped. At the same time, I am glad I feel things. The CNAs and nurses equate a noise with pain, so I grit my teeth and noiselessly make faces as they work on me.
If it's connection and intimacy I want, my cat Humphrey more than fits the bill. It can be a lot to ask someone to look past my flaccid, atrophied body and realize I am still a whole person. Humphrey just sees me as Mom, the courageous lady he chose to go home with almost 11 years ago. He's my biggest fan, and I am his. There is nothing better than feeling him lean against me and having him turn and lick my hand. Grooming me confirms he sees me as family even as he slowly removes a layer of my flesh. I will never stop him and I will cherish the red mark it leaves behind.
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