When I married Nancy, I think probably sex was foremost on my mind. We had a passionate courting, and while there were other aspects of ourselves that drew us to one another, I was probably a little single-minded as far as the sexuality went.
I admired her mind, believe it or not. Nancy was writing at that time, she was a student at Wheaton, and there was something very engaging about her art. She was very open about it and shared it a great deal, and I think somehow I thought that would be part of our lives together, and for heaven's sake it was. We've been married for 30 years, and that's become a very very important part of our lives, particularly now that she's disabled; it pulls us out of our circle of safety here and pulls us out into the world.
We travel, we go to colleges around the country. We meet fans, people who have heard of me, with whom I have a strange sort of one-way relationship. People will ask me what's happening with the cancer. A few bold souls have even asked me about my extra-marital affairs which Nancy has written about, and that's a heck of a way to meet a stranger. So, yeah, the sexual enthusiasm has continued, and the love of her art.
I have to admit, I can do caregiving, I can be with her and give her chocolate ice cream sodas or change her urine bag or whatever, and I do it with a certain determination, and I'll keep at it. I would feel a terrible failure if I couldn't continue. Sometimes that upsets me. Looking at it the other way around, I'm locked into something, and I'm aware of that, and I think to myself, my God, I can't get out of this, I'm locked into this and isn't that awful for the rest of my life I might have to do this. So that's a very dark side to caregiving for me that comes up from time to time.
I'm not confined to a wheelchair, I have choices. I can get up and get out, and that takes some of the pressure off me. There are certain times when I would like to get up and get out. Rarely have I bolted. I need breaks; Nancy understands that I need breaks; she's good about providing those for me. And vice-versa -- I try to provide her with space where she can get away from me. And I know that some of her feelings are very much like mine, but her limitation is different from mine. Mine is self-imposed, and she is really just stuck.
Caregiving only works, in my experience, when it's circular -- and I want to give Nancy opportunities to care for me, sometimes I do that consciously but not always. Sometimes I just genuinely need her to just touch my hand, to say it's all right.
My having cancer was an extreme example. I had stage 4 melanoma, it had metastasized to a tumor in my bowels. Most people apparently die of that. I guess the odds of that are pretty much against my having survived that but it's been 10 years, and I'm sure I have survived that in part from the nurturing I have received from Nancy. She was quite disabled 10 years ago when I was hospitalized for this surgery to extract this piece of my bowels, she was quite disabled but she insisted on having a bed in my room, and being there with me during my times of confinement.
I'm sure that has something to do with my being here today. I know that she was, if not calling to me aloud, telling me that I was needed. So that's what caregiving is, and yes, there's still that circularity. And I don't think that we would continue if it weren't somehow that way. Giving round and round.
I've always sympathized with couples whose paths have diverged. I have an image of our paths remaining parallel somehow. Not always in the same direction, zigging up and down, but somehow always in reach of one another. I don't know why that happened. I think we're blessed; we're lucky, I'm a spiritual guy, I'm very grateful and when I pray my prayers are prayers of gratitude. It's a wonderful parallel course that we somehow wound up on.
If we look at everything we receive as a blessing, MS is a blessing. It probably has kept us together. If we hadn't had illness as part of the mix, I can imagine that we might not still be together. I can't imagine what our lives would be like without illness. It would be a heck of a lot easier. This daily routine -- I don't know what I would be without all of the time I put into getting Nancy ready to go during the day and then maintaining her during the day, and then in the evening, reversing the whole process. What would I do with the time?
Burnout is an issue that looms large in caregiving. I have taken with a caregivers course, I have joined a caregivers group. I found that in the group the other people were all caring for elderly disabled parents. And that was interesting. I know that I'm not alone in caregiving for a spouse, but perhaps spousal caregivers keep more to themselves; I'm not sure. But talking in groups and to other individual caregivers, burnout is a key issue that caregivers talk about.
I've talked to counselors, and social workers, and they all advocate first of all, getting away, you must have space. You have to schedule on a regular basis and you have to have I think a crisis arrangement also. So that before you break, when you've bent as far as you can, you can call someone and get up and leave. It certainly has helped me to have other people to talk to also.
Nancy and I are very open about what we're suffering, and it's our choice, of course. But still, we're pretty open about the suffering, but it isn't sufficient that I talk with her about those times that I want to get up and get out. It would help particularly to talk with another guy who's caring for his spouse. I know he would share those same feelings. So those are two things that I think any caregiver realizes he has a need for -- the counseling and the time away.
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