If anyone should ever write my life storyFor whatever reason there might be,
You'd be there, between each line of pain and glory...
I met an old man this weekend who has spent more than two decades caring for his wife. She's been sick with Parkinson's since they were in their forties. We had breakfast together a few days in a row, and each day, he talked about caring for his wife. He talked about the surgeries she's had to find some relief for the muscle spasms and pain she experienced. He talked about her daily medication regimen. He talked about taking her to doctors and the ways that the various doctors' weren't caring for her properly. He was a thoroughly pleasant old man, and his love for his wife was apparent even though she hasn't been herself for decades. Her memory was affected by one of her surgeries, and she is often confused. She is completely incapable of caring for herself and requires his 24-hour care.
There was an undercurrent of sadness in everything he said, although he seemed content with his role as his wife's caretaker. He said he can rarely leave home without her because she is prone to seizures and he worries that something will happen if he isn't with her at all times. He gets a bit of reprieve when he takes her to daycare, but it's only enough time to run errands, so he doesn't get much time to himself...
This old man's life story, now, is the story of his wife's illness, and hearing him talk made me think a lot about my own life and my role as my husband's caretaker. I thought about whether or not I wanted my life story, which I'm recording, diligently, here for you, to be the story of my husband's addiction and my response to it. I don't think that I want that to be what I've done with my life.
I don't think that when I'm very old, I want to have that hint of sadness in my throat when I'm telling someone about my life. I don't want to explode, to foam at the mouth, with the story of my husband's disease, its transference to my own life. I don't think I want it. I don't know.
It also made me think a lot about marriage, connection. I know that my own husband would not care for me if I suddenly became unable to care for myself. He's too self-absorbed, too unpredictable, and too sick to be able to be responsible for another person.
And it confuses me, too...I want a partner who could, who would care for me if I were to be unable to care for myself. The agreement to provide care to your spouse if he or she is sick is one of the fundamental marriage vows...in sickness and in health. My husband, now, is in sickness, and I am growing increasingly tired of standing by that vow. I would want him to do it for me, and I don't want to do it for him. I'm conflicted about what that means for me...
I've heard many people describe addiction as a disease like cancer, suggesting that while yes, you'd care for your spouse if he or she were sick with a cancer, you might become frustrated if your spouse wouldn't seek help...wouldn't take medicines properly or visit doctors. (Blog BFF and recent real-life BFF MPJ described it beautifully as a nasty bowel disease.) You might not leave your spouse under those conditions...but you might, and you might do it with a cleaner conscience than if you just abandoned a sick spouse because you didn't have time, energy, or inclination to deal with the disease and its ramifications for your own life. One thing that confuses me, though, is that one of the symptoms of my husband's disease is that he doesn't want to seek help. Addiction masks itself so inkily from the addict...when he is spiraling, he can't see that he's spiraling. When he is saying that he doesn't need to go to meetings because he isn't like the other addicts, it's a side effect of the sickness...
I don't know. I don't know. I don't know.
Sometimes I think I'll never leave because I find the disease itself to be so fascinating. Other times, I think I will never leave because I find my husband to be so beautiful. All the time, I think of all the reasons why I will never leave.
I'm making my life, every day, and every moment of every day. I'm thinking clearly about who and where I am...but I'm not sure what to do with this clarity. Nothing changes in what I want: a healthy, happy partner who can take care of himself and be fully engaged in his own life as well as the life we're sharing. Nothing changes in his inability to be that person...there are brief, beautiful steps forward and then long slides back. I wish I could step back and get a bigger perspective, see really how I'm growing, if he's growing, and what we look like as a married couple...
I don't know.
Art by Mark Tansey
