American Idol

My guilty pleasure is that I watch American Idol - regularly. I love to hear beautiful music come from unexpected places, and people. When a mountainous voice comes out of the mouth of teeny, tiny, sixteen year old girl who looks like she should barely be able to muster a whisper -- I smile. When a nerd sings opera or a geek rocks out, I smile again.

One of this season's sagas is about a young man with a beautiful voice who was engaged to a vital, intelligent, active woman. She, tragically suffered serious brain injury in an accident and is wheelchair bound and has difficulty communicating.

The Idol contestant says, "I was about to make vows just two months from the accident – through thick and thin, 'til death do us part, for better or worse,' he said. What kind of guy would I be if I walked out when she needed me the most?"

He stands by her side; he sings for her.

I have tried to imagine myself and my sweetie in their roles in their situation. I discovered that I honestly have no idea what I would do. Would I stand by my man -- and for how long? Would I make sure my man was well cared for in a facility and visit as often as possible? Would I still be able to sing? If I were brain damaged, would I want my sweetie to stick by me; or would I want him to move on? Would his presence be too much of a painful reminder of what we were supposed to have? Or would his steadfastness give me courage?

What are your thoughts? Do you know what you would do if you were the man? or the brain damaged partner?

Aging and Illness

Those of us who have been living with illness or a chronic condition (as either the ill or well partner) understand too well the deals we make with life and with each other. The biggest one is that illness must now be a part of our relationship and our choices. We can't take the commonplace for granted. Illness won't let us. The ordinary comes with the caveat - if I'm feeling well enough....

It is estimated that in the US, by the time we reach age 65 we will have one illness or disability, and by the time we reach 85, we may have 3 or 4. And if both partners are aging, the complications of managing multiply. Can we both stay in our home? Do we, and can we afford, help? Live-in help? What about assisted living? And what if one of us needs a nursing home and the other doesn't? What difficult choices!

A few weeks ago an article in the New York Times discussed the issue of aging and illness. It's a good read, and has, imho, a great title:

In Sickness & In Heath by Paula Span

Here's how it begins:

"For several years, the professor and his wife, who has Parkinson’s disease, managed in their house in Cambridge, Mass. But two years ago, finding living on their own too difficult, they moved together into an assisted living facility.

The professor, retired from M.I.T., was in good health and didn’t need personal care. So I wondered: Why not move just his wife, whose mobility would deteriorate, and visit her regularly from his own home?

He sounded puzzled at the question. Live apart? “That never occurred to me,” he said. “She’s my wife.”

As is often the case, though, assisted living proved only a temporary solution. His wife developed intensifying dementia and needed more care than the facility could provide. In November, at 85, she moved to another facility in a neighboring town. The professor stayed behind in assisted living. Now 87, he is living alone for the first time in 55 years."

Grands Rounds is Up

The weekly collection of posts from the health care world is up at Suture for a Living. Have a look.

Divorce and Chronic Illness: One Woman's Story

A reader's comment on a previous blog post deserves attention and the good thinking of other readers. I post it here, and share my thoughts underneath:

"I am now in my 4th year of suffering with RSD pain. I have no family in my state. My husband started out somewhat supportive & helpful. Now he sees me as a setback to the things he wants to do. He has told me that he doesn't drag race, go to metal concerts, and other things he enjoys b/c I make him feel guilty for enjoying his life. I have one daughter that is away at college. Only one close friend. Basically I don't have a support system. Spousal support is the most important thing one can have when trying to overcome the pain of this illness. What do you do when you don't have it? We are only days away from our 24yr anniversary & I'm feeling like its time to let go. I don't want this feeling of being the cause of his misery and him the cause of mine. Any advice on how to make it through a divorce when you're so weak and beat down? We would have to stay in the same house until the market is better for selling the home."

My Thoughts:
Divorce is the best solution in some situations -- especially when there is the presence or threat of emotional or physical violence. But divorce is hard, especially on women. Hard socially and hard financially.

Sometimes divorce becomes the visible option, something concrete to talk about, when the couple has a hard time talking deeply and authentically, without shame or blame, about the issues that lie beneath the divorce talk: resentments, jealousy, depression, rage, loneliness, fear, sex, and more.

If you'll permit me to speculate, I can imagine that you and your husband can get caught in a self-defeating loop (as many other couples do). You can't help having an illness that limits your activities. He feels obligated to curtail his activities and then resents you. You feel guilty and depressed, which probably exacerbates your RSD and leaves you more pained and less physically able to participate in activities with him. He gets resentful, and you get guilty, etc. etc. You naturally think about ending the relationship to end the hurtful pattern.

I wonder if there may be ways to intervene in this cycle, short of divorce (which is always an option). And I wonder what you have tried already? One thing to keep in mind is that you have an illness, but you are not your illness. There is a you that is much bigger than your symptoms and the things you cannot do. It's probably that "you" that your husband fell in love with. I wonder if you can tap into that "you" and find aspects that take you out of guilt (and your own resentments) and reach out to him from your core, your essence. Perhaps there are ways for you to introduce both of you to just being together and to engaging in activities that you can tolerate (and giving each other permission to also engage in solo activities).

Another perspective: When illness enters into the couple relationship, things change, often drastically. When we continue to apply pre-illness approaches to our changing reality, they often don't work and frustration and disappointment result. Couples can wind up blaming each other instead of joining together and lamenting the losses illness has caused both people. (and at some point, some couples wind up appreciating the unforeseen "gifts" illness brought into their lives -- e.g. having to slow down and learn to communicate). I wonder if there is a way for each of you to stop (if only for a moment) seeing the other as the cause of your own misery and to see illness as the disruptor for both of you. It may be helpful to talk together about what illness had done to your lives -- both your lives, separate and together. Listening with openness and empathy to each others' feelings can create shifts in entrenched patterns that allow for new possibilities --- and new solutions. A third party - therapist or clergy person - can help keep this conversation on track.

Some couples decide to stay together, but have essentially separate lives. Some couples decide to live separately, but remain in close and supportive contact. There are any number of permutations.

If you do decide on divorce, it sounds like it would be useful to build your support system first. You will need people to talk to and people to help you out. Are there chronic illness or divorce support groups near you? A family agency or hospital social worker could probably put you in touch with groups and other useful resources. And most people use a mediator or lawyers to help negotiate the terms of the divorce.

You are in a very tough situation. I will hold you in my thoughts and hope for outcomes that bring you more peace.


Any other readers have thoughts or experiences to share? Please join in.