My Mind Is Still Working

I miss the warmth of a woman's touch, that kind little whisper in my ear that, regardless of content, says "I love you." I miss the small gestures, when she gets me a coffee or brings me a snack, when she laughs at my bad  jokes or when she finds a small treasure, a gift that becomes mine and mine alone. I miss having that reason to get up in the morning, that reason to share a space, that reason to love, and to live.

There are wonderful life partners out there, women who can take an awful day, a bad day, and with a moment of care turn it into a great day. There are women out there who can lift up a spirit, embolden, encourage, support, encourage; I know they are out there, I've met them. Unfortunately I don't have one of those wonderful creatures in my life of late; I am still, sadly, single.

We all want the perfect partner in our lives, even those of us with ALS. I talk to a great many PALS, both single and in relationships, straight and gay. There are a few lessons I have learned from these conversations. First, and absolutely foremost, PALS in loving relationships live longer. It's just true that those of us who feel loved and cared for do better with this disease. It's not surprising that troubled relationships crash on the racecourse of ALS, obliterating everything that carried the relationship beforehand. This disease is deadly to every part of life and any part that is weak simply crumbles before those three letters. It's the "loving relationship" that counts.

Second, single PALS still want the right person in their life, the perfect person, in the same way everyone else does. Just because we have ALS doesn't mean our dreams and hopes should change. Just because our future is uncertain and our bodies are broken doesn't mean we should take a lesser stance on our worthiness. On the other hand nobody is more aware than I am that my body is far from perfect, that I am damaged by this disease. Someone said to me recently, "Perhaps you should lower your standards." Well, perhaps. But then I would probably be in one of those troubled relationships, and ALS will destroy that. So why set myself up for failure? No, I think I will hold out for the right relationship, short or long. In the meantime though, I wouldn't mind a big of a fling.

You see, that's the other thing I hear consistently from PALS; no matter what condition your body is in, your mind is still active and sex is still important. It's frustrating for both PALS and their lovers to have this body fail. It's even more frustrating when those who were once your source of passion become your source of care. More than once I have heard how caregiving takes over everything and physical passion flees as the need for care takes over. I had one woman say to me "He is afraid to make love to me; I think he is afraid he might break me." Yet the need, the want, the passion, is all still there. You don't even want to know what some of the men have to say about what they want, but want they do.

Imagine the frustration of being trapped alone inside a body. Sex begins in the brain and nobody else can get in there with you. As a woman I met online once said to me in one of the many frank discussions we have had about this, a woman whose onset was in her hands and arms, "Imagine having a working libido, having the urge, being horny, being alone, and having hands that don't work. There is nothing more frustrating."

You see, even with ALS we are real people, people who want and seek a life and love, both physical and emotional. If there is anything I could say to my future lover, it would be "Don't forget that somewhere in there my mind, in all its glory, is still working".