Coping a new.

Whenever I am trying to get my head around things, I turn to the dictionary. I’m not sure what is so satisfying about that process. Maybe it’s a control thing. Don’t we all want a little more control?
So here’s what Dictionary.com says:

Cop•ing-noun
1. to struggle or deal, esp. on fairly even terms or with some degree of success (usually fol. by with): I will try to cope with his rudeness.
2. to face and deal with responsibilities, problems, or difficulties, esp. successfully or in a calm or adequate manner: After his breakdown he couldn’t cope any longer.
—Synonyms 1. wrestle, strive, persevere.

I think we should add one to that to better reflect the unique brand of constant coping that those of us use to manage our constantly changing completely unpredictable disease.

How about this:

3. a successful effort to persevere in spite of the odds when managing health changes in the face of uncertainty. ie. The ability to constantly reinvent yourself.

That is a bit more empowering and optimistic in my book. A friend of mine, who is also “coping” with MS wrote this most significant passage to describe her experience. It helps me to read, and reread it as I’m carving out my path. I imagine you might find it helpful too.

How often, as a healthy person do you concentrate on the division of mind and body- of soul and physicality?

We are one with our hair and our legs and our arms and our hearts and our bladders. They just work. They do what they are supposed to do. At times they hurt, or malfunction; we use words like stomachache or headache or leg cramp. But we don’t remove the leg cramp, hold it up to a light, examine it, ridicule it, scoff at it, cry about it, agonize over it and try to discover the physical and existential implications of it. A stomachache isn’t a dusty window into our future. Our minds and our bodies pass together through life with minimal conflict.

When you are diagnosed with MS a great divide suddenly emerges. What was once a happy synchronicity between body and mind becomes at worst a war and at best a dialectic. I am well. I am sick. I am a combination. I am a healthy person that lives with a disease. I am a diseased person with moments of healthy. My arm is numb because I slept on it funny. My arm is numb because my T-cells are attacking my myelin. My arm is numb because I imagine it to be that way. Suddenly you are engaged in an unceasing dialog between mind and body.

On the best of days you can mute the conversation while you are engaged in being a student, or a professional, or a mom. But at the end of the day, when the quiet descends and the work is put away and children are asleep, the anxiety of newborn aches and pains, of sound futures uncertain tuck themselves in between your sheets and lie with you at night.

And so begins the dialogue of emotional healing. You begin the negotiation between mind and body. You build coping mechanisms and you rebuild and restructure until you are able to find a way to live at ease within your body and its numbness and its foot drops and its dizzy spells. You find the peace you need, and you get through a day, a week, a month, then suddenly there is something new. A nerve misfires or fails to connect and suddenly your body begins the conversation anew and you begin the negotiations again. This time, though, a little stronger, fortified by the fact that you made it to ‘ok’ before and can get there again. It is a challenge in a world when tomorrow always seems to be in focus while today is a blur, to stay centered on the here and now. Today I walk, I wheel, I think, I love, in the best way that I can—with the tools that I have. Tomorrow I will do it all over again.

I am so moved by this piece. I find myself reading it over and over again. We all have different experiences with this disease. We all have different mechanisms for coping with our own variation. But what we do all have in common is described exactly in these words. Thank you for letting me in to read about your experience. It means the world to me.

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