Help!

Ann drives me to my internship, a 20 minute ride, two mornings a week. Then, I work for four hours and take the bus home, a one and a half hour ride. Ann would drive both ways, but I insist that I take the bus. Maybe it seems to you like I should be better about accepting help (I've been told this before), but it's complicated.

Before my tumors, Ann and I were careful to share responsibilities. We each cooked and cleaned, gardened and shopped. One week, I would do the grocery shopping and cook and Ann would clean the kitchen and do the laundry. The next week, we would switch. We gardened, hiked and biked together. We practiced yoga together. It was lovely.

Sometimes, one of us would do something the other didn't do, but we balanced that, too. For example: I made the bed and the travel arrangements. Ann fixed things and took the spiders outside.

Because we both worked in education, our salaries were usually comparable, so we contributed evenly to the household expenses. When one of us made more money than the other, that person contributed more. Usually that was Ann, but sometimes it was me.

Having grown up in a Southern culture where, it seemed to me, the women did more than their share (and it was unpaid), it was important to me that Ann and I balance the work in our home. Ann acknowledged her own tendency to do more than she really wanted to and then to feel irritated about it. So balancing the work was important for her, too. It was an important part of our relationship.

My tumors, however, have upset this balance. With my disabilities, I can't use fire or sharp implements safely, so I don't cook or light candles. I fatigue easily, so I seldom do all of the laundry or the cleaning myself. I don't garden because of balance and fatigue. I don't shop. I don't drive. Biking (tricking) and hiking are more complicated. We practice yoga at different levels and attend different studios. I miss doing all of this together.

I need a lot of help. The day before I left the hospital after neurosurgery, nurse Joey sat beside me. I remember her because she was the only nurse who ever sat with me and because of her admonition. 

She'd watched me for the three weeks that I was on her floor, and in a little lecturette she said to me, "You're going to have to learn to accept help." I found the admonition strange because at the time Mom and Ann were flushing the toilet for me.

If you read this blog regularly, you know that poetry usually sings to me, but along this theme I find myself singing a Beetles song:

When I was younger (So much younger than) so much younger than today
(I never needed) I never needed anybody's help in any way
(Now) But now these days are gone (These days are gone), I'm not so self assured
(I know I've found) Now I find I've changed my mind and opened up the doors

Accepting help is sometimes a little hard for me. Friends give me rides, slow down with me, and let me sleep on their couches (or their beds) during visits. When they come to our house, I say good-night before they leave, and they don't razzle me about it. 

Accepting help from Ann is mostly okay, too, but she has so much responsibility in our home that whenever I think I can do something on my own, I try to. Sometimes this may look to outsiders like I am stubbornly unwilling to accept help. But really, I'm trying to learn to be a good partner who needs help often, but not always and respects Ann's need to be independent, too. 

Ann and I are in our twentieth year of living together. I feel lucky every day, every moment, for our relationship. Most couples who've been together for decades talk about the hard work. 

In many ways, we have not had to work hard at this relationship. When we first got together, we did not promise the future, but the present: we promised to be as honest as we could be with ourselves and one another. Each of us promised to be true to who we were. 

Early in our relationship, we had "Saturday morning talks," where we would review the week and talk about anything that might be nagging at the corners of our minds. In our later years, such talks have become habitual, part of our everydayness in being together. We have not reserved these conversations for Saturday mornings, but hold them as the need arises. One of us says, "Can I talk to you for a minute?" We sit on the couch, hold hands, and talk. 

My brain tumors, treatments, and disabilities have in some ways disrupted our ways of being together. Because Ann is twenty years my senior, we had always assumed that one day I would take on much of the household responsibility and that she would precede me in death. Instead, she's taking care of me a lot, and we are more aware of our vulnerability, of the possibility that either of us could go first. And that it will be hard for the one left behind. 

In this, one of my favorite poems comes to mind--Sonnet 73 from Billy Shakespeare:

That time of year thou may'st in me behold 
When yellow leaves, or none, or few, do hang
Upon those boughs which shake against the cold, 
Bare ruin'd choirs, where late the sweet birds sang. 
In me thou see'st the twilight of such day, 
As after sunset fadeth in the west, 
Which by-and-by black night doth take away,
Death's second self, that seals up all in rest. 
In me thou see'st the glowing of such fire 
That on the ashes of his youth doth lie, 
As the death-bed whereon it must expire 
Consum'd with that which it was nourish'd by. 
   This thou perceivest, which makes thy love more strong,
   To love that well which thou must leave ere long

In this fall of our lives, our love is strong. The challenge for me remains: how do I remain true to myself and clear about who I am beyond the bounds of our coupledom, when I need so much help?

In settings with people who live with disease and those in our lives, Ann is often identified as the "caregiver." I certainly prefer this term to "caretaker," which sounds like someone who cuts the grass and trims the hedge, and puts me in mind of an undertaker, but I am still uncomfortable with the fact that the term identifies her in terms of me. Yesterday, at my practicum at the National Multiple Sclerosis Society, I read the term "care partner," which I like better. 

We are partners in this, as in all things, and we are learning how to live our lives in this new way, committed still to honoring each of us as an individual within this marriage. 

P.S. I shared this entry with Ann before posting it to make sure it seemed okay with her to share with you, and she said, "You make our relationship sound perfect." To tell you true, I guess it's not perfect, but it's pretty darn good. Once, when Ann told our neighbor Robin, "I think Mary's pretty special," Robin said, "That's how it should be." So I think Ann's pretty great, and that's how it should be, but I don't want to be maudlin about it. I just want you to know that disabilities challenge our ways of being together.