This is the story about my friend being brought to her knees.
Amy was invincible and then she wasn't.
She went to bed on a Monday night four years ago and woke the next day, at 7:30 a.m., with a migraine. She'd never had one before and she hasn't been without one since. One long headache later, we sat down to talk.
We've known each other since we were in our 20s. In Amy's 20s she traveled alone through South America, climbed into altitudes lesser humans would not attempt, had tumultuous love affairs (with beautiful men I would never have dared to speak to), memorized poetry, acted in plays, didn't read the memo about wearing a bra, rode bicycles without a helmet and had a group of zany friends. She was reckless and carefree and brave with a capital "B."
She got married, had children and streamlined her charisma and life experience into being a therapist and super momma. Amy was not a "get sick" kind of person. She had too much energy to get sick, too much zest. But that's not how things get decided. When she got the unrelenting migraine her energy became divided between illness and her adult, married-with-children and working-full-time-woman life. How one copes with illness while living fully was where our conversation began.
I figured there were moments she was pain free: hours, maybe a day or two? No. She doesn't have an occasional migraine. She has a syndrome: Daily Persistent Headache with Migrainous Features. She has a migraine every single day. The headache has receded enough that instead of pain that rendered her shocked and stunned, she now has ice skate blades cutting into the top of her head and vices on the side of her head. She has learned to cope with and run her life around and within an unimaginable amount of pain. I watched the woman give birth. Her migraine is right up there with giving birth, all the time.
Amy's perception of herself changed. She's no longer sure she's strong and up for anything. She's become mortal and been humbled: her word. She had always felt in charge. And then she wasn't.
She considers her migraines a disability. An invisible disability that she carries around silently. There are no access ramps or handicap parking spaces for her. There is no extra consideration for what she might need: no doors held or extra patience extended.
I didn't know how much my perception of Amy had changed until she was 30 minutes late for our tea and talk and pick at food date. I texted her. I called her. In the past, before she got sick, I wouldn't have been concerned. When she scaled mountains, pre-cell phones, no itinerary and no way to know for sure if she was okay, I was sure she was fine. But now I think of her as a body with a match stick head, enough friction and she could burst into flames.
How has her interaction with the world changed? Amy paused, and then told me that before getting sick she wouldn't have traded her life for anyone else's. After getting sick she found herself bargaining with the losses she saw other's toting. A man without a leg. She would trade a leg for no migraine. And on and on. She also imagines there are people all around her in discomfort she never considered. Since her disability is invisible, how many other's are as well?
None of us is invincible. Amy spent years mired in shame and guilt. Surely, she had done something that created a ripe environment for her head to explode. Surely she had. We always want to know what misstep created illness. But sometimes, no misstep exists.
Early in her quest for a cure she had an abundance of hope. She believed that with the right treatment, she would find relief. And why not? Many people do. But as one year moved into two and so on, she has come to accept that she might not ever get rid of the headache. Instead she has made a sort of peace with the an univited houseguest.
Tea cooled. An hour flew out the window. I wondered how do those of us who love a person who is ill -- and not with a cold that we can attend to with soup -- love in a way that the love can be received? I always ask how Amy is feeling. She always tells me. She knows who wants to know the details but mostly, Amy tells people she's fine. Even people who know she's not really fine.
People get tired of a person who is sick. It's a downer. Our capacity for empathy for something we can't imagine runs thin. Or does waning support mean something else? Amy brought up an interesting point: People don't like to see other people in pain. Amy thinks that often why people don't ask or don't want to know stems from that. We don't want to know there is pain that we can't alleviate. Pain that lives without permission, in a person we love.
She has not given up hope. She has a team of doctors and one even told her she might get better. Why? Because she got the headache as an adult. How come, Amy asked, does she never hear about those people who get better? Well, the doctor told her, because they stop coming to the doctor. They're better.
Amy emailed me a list of 39 modalities she has used in her efforts to be pain free. The list included surgery, dietary changes, medications and meditation. So far, she is still seeking an answer.
If you know someone or are someone with New Daily Persistent Headaches (NDPH), Amy recommends:
- All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache by Paula Camin.
- Living with NDPH, a blog written by an NDPH sufferer.
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