Making Peace with a Body at Odds with Your Life Goals

Hummingbird in fuchsias

When Your Body’s at Odds with Your Life Goals

This last week I haven’t been able to do much, by which I mean, move, shower, or leave the house. I got an infection which triggered my MS symptoms and my body does not want to work. It does not want to eat, sleep, or move around properly. I feel nauseous all the time. I can’t concentrate. My legs give out from under me at random times. I’m so frustrated because, yes, my body is at odds with my life goals.

Friends who have perfect health, good for you. Please enjoy it. Everyone else, what can we do? Yesterday a friend was reading downtown at Open Books, but instead of being there, I was sleeping. It was a perfectly beautiful day outside, which is saying something for Seattle – 75 degrees and sunny. My flowers were blooming. The hot air balloons went up and down in the morning and evening. I was surrounded by beauty. I just couldn’t do anything with it.

How to Accept Your Losses

I’ve always been an A-type, goal-oriented human. The problem with that is when you can’t achieve your goals, do you consider yourself a failure? Do you forgive your body for betraying you? I think the trick is to enjoy and appreciate the moments when you can do things, and the rest of the time, you have to be okay with the fact that your body isn’t going to work all the time. Which is tough. We live in a society that values doing things, not being things. I used to, for instance, earn good money as a tech-writing manager. Not anymore – I’m lucky to break 15K a year as a writer and editor these days. (Just being realistic, people. This was also true when I was working as an adjunct!) Am I worth less as a person because I make less money? I’m still writing. I still send work out to be published, just maybe not as fast. The poet in me says: this downtime is allowable. It does not make you less of a poet. But the A-type, goal-oriented part of me says: what are you even good for these days? It is angry that I’m not able to do even simple things every day – go to a bookstore, or a garden, or hike by a waterfall – that bring me joy. I can’t socialize every day anymore.  Those feel like losses to me. I love my friends, my spouse, my garden and my cats, all of whom have put up with me in my new, broken condition – one that is fragile, and somewhat unpredictable. I need to be able to accept my new condition as well.

This has made me think about Emily Dickinson, who was home-bound for most of her adult life. She didn’t get out much, although single women couldn’t do as much in her day even if she had been totally well, which some historians thinks she was not. She did have a fabulous garden and greenhouse (concreted over by the next owners of that property, by the way, to make tennis courts – the shame!) She famously wrote a poem about what might make a life worth living (“If I Can Stop One Heart From Breaking”) so I think she also struggled with, having not attained publication or fame during her lifetime, and not getting married or having a family (women in those days didn’t have much chance of having any type of career) seeing herself as a failure, coming up with coping mechanisms for not being able to achieve her goals. “Victory Comes Late” is one of my favorite of her poems, because it deals with bitterness and loss from the perspective of achieving goals, but late and at a time when it no longer brings a thrill. (Did she foresee her own post-life fame, I wonder?)

Moving Forward

So, how does one move forward with this? I know that I have good days and bad days, and I’ve had a pretty bad, say, month. I know that MS can be worse in the summer, and that has definitely been the case for me. So I have to roll back some of my expectations. It’s beautiful outside, but I’m lucky that I can enjoy some of that from my deck, where I can watch over my flowers and birds (and occasionally, rabbits and deer.) There are a lot of things I’d like to do – take a day trip up to Port Townsend, go downtown more often to see art or poetry readings, or just see the rose garden at the Woodland Park Zoo, or the lavender fields. I miss those things. But I have hope that I’ll have more good days again, that I’ll get this MRI on Tuesday (checking my brain and spine for more lesions) and see my neurologist and maybe those will give me some answers. I pray (and also donate money that support this cause) that they are going to find an MS cure soon. They are working on new drugs – because most of the ones that exist, sadly, don’t work very well (40 percent or less effectiveness, which is not great) or have terrible side effects – like death, or cancer. I hope they get some new drugs soon that help people like me that struggle to do their everyday things. I’m working hard to find a new primary care doc that doesn’t just blow me off or get overwhelmed by my complexity. In the meantime – I will continue to do the things I can. I will try to forgive my body on the days when it’s hard work just getting out of bed.  I still have goals – writing, submitting, getting out in the world – even trying to edit or review books when I can – I just have to accept that some of the time, my goals have to be smaller and more manageable, or not depend on the “zing” of accomplishment to feel okay about my life. I have to be okay with my hummingbirds seen from a window, the undependable nature of flowers, blooming or getting eaten by deer, variously. The hot air balloons a symbol in the distance of lightness and movement, of hope.