I just had a birthday this week, and it was one I wanted to ignore. I turned 63 and if I was a normal person I would be celebrating with friends and family, perhaps going out on the town, having a birthday cake with 63 candles (that I had minus the candles). I did receive well wishes from so many friends that I have made over the years, and it made my day more special than I can ever tell them, or perhaps than they could imagine. But my day, as usual was capped off by an acute migraine, medications, more medications and not much sleep.
I do have things to celebrate. Today, August 16th, my little 4″ x 4″ self-portrait which was submitted to the Brooklyn Art Library for exhibition will be up in their gallery for one day only. I don’t know if anyone will see it, but I will send a reminder to two of the people who may be able to go – I just want to know it is there. Even though I paid a fee to enter the work, and I don’t know if everyone who submitted something is being exhibited, it is fun for me. In all the years of doing art or design in one form or another, this is my first exhibition of any of my work. May it be the first of more to come.
My migraines – no longer referred to in the headache community as “migraine headaches” – headaches can be migraines or something else. Migraines are migraines and not headaches. Migraine is a disease that has no cure. I am still trying to understand this, and how it affects me going forward with my life. I don’t feel like I have a disease. I don’t look like I have a disease – except on my really bad days. But ever so subtly, bit by bit, I am not the person I used to be, and I want that person back.
I spoke with an old friend the day after my birthday and she told me, ever so gently, that many times she could not talk to me because I was in pain so much, and could go on about it for an hour without taking a breath, without asking how she was, and she had to, for her own protection, make limits on the amount of time she could talk to me. Migraines had so taken over my life; there was nothing she could do but listen and it was hard to listen and not be able to help. It was, in fact exhausting. So she called me when she had only 1 or 2 minutes just to check in, and would call for longer conversations when she had the energy given the context and complications of her own life. I asked her why it took her so long to just tell me that? People with chronic pain have an enormous amount of empathy and sensitivity for others. They also prefer the truth and not a vague excuse. They know when people are avoiding them. I knew. I just did not know why. Had she told me the truth about it, I like to think I would have understood. I may not have liked it. It probably would have made me think about things. I have always been a very generous and understanding to other’s problems, and a good listener. The person who cried when I was upset, who wanted me to be someone else when I was around her, was just another version of the same thing – although her request that she could be friends with me at all unless I was my funny and witty self, had more to say about her needs than mine. The truth was I had become a walking Migraine. My head, eyes closed on one side, and a distinct line down the middle of the head, one side huge and bulging, throbbing, red, and obviously in pan, and the other perfectly normal, eyes bright, looking forward.
So I am now looking at migraine as what they have become. They have turned into my profession. They are the first thing I think of when I get up, and the last thing I deal with before I go to bed. The chronic pain, how I am feeling, the weather, the sun, exercise, activity, plans, appointments, food, everything I do revolves around Migraine the Profession.
Looked at in this light does not give me any enthusiasm for the future. It does not make me feel positive, optimistic, or have energy to go forward. I have had many “professions” during my life. At one time I thought, like many of my generation thought they would not make it past 30. Making it to 63 is a milestone. I realized long ago, most of us have a long life. At 20 one does not realize how much can be done in that time, nor at 30. And although I may get a stroke, or cancer or some other dreaded disease, I feel like I have lived with my “disease” for 44 years. A cure will not be found before I go, and I will carry it to my grave. That alone is enough suffering for one lifetime. I would like to live as fully as I can for whatever time is left to me, be it 5, 20, or 30 years. I would like to find the person I have only seen in pieces through the lens of this disease. I would like to undo this kaleidoscope of a fractured self, held together only by the migraine chronic pain that has been the constant during the last 44 years of my life.
I have to go back to the title of this post, “My migraine, my profession”. This started out to talk about how migraine affects my life, how I talk about it to other people, how it has changed over time. It is not a simple question to answer. I am not eager to continue behaving with others the way I have been. I don’t want the sadness, the loneliness, the isolation. Just writing that down makes it more real for me. I will always be living with migraine. I will always be taking medication. I will always have triggers, bad days, acute attacks, daily migraines and the other lovely aspects that go with this disease. There will be new medications coming out as research proceeds. They may work for me, they may not. I may have good periods, and bad. I have co-morbid conditions: I am bi-polar, I suffer from PTSD due to childhood incest from my adoptive father, and can sink into deep depressions which have been hard to control, but are less frequent now with the meds I take. These are my realities. No one, except those very close to me, need know about them. They are not for daily conversation with someone I do not know, an acquaintance, a new relationship, or in passing. They are for my private, personal world. I have professionals to deal with them, websites I can give to others in the same position, and support groups I can join where my frustrations can find a place to vent without judgement, withdrawal or fear.
I am going to get my real self back while I continue to live with migraine disease. That witty, charming, elegant person that could tun heads just by walking into the room needs attention. The person who could make anyone laugh, with a quick repartee and a good vocabulary needs company. The person with endless curiosity about everything, willing to try anything – at least once needs cohorts. The friendly outgoing person, not hiding in the dark waiting for the pain to subside, or just get enough energy to get up and cross one or two things off the list has to leave to make room for the person underneath who wants access to the world. Bit by bit, I can rejoin the world. I can start to smile more, listen more to others, and keep my reality to myself.
I will be changing the name of this blog from “pained” to “Zen, Art & Living with Migraine Disease” for my next post. I have been a student of Buddhism since I was 27 years old. Using that practice as my focus I know will help me get closer to my goals. Pain is pain. Chronic pain is chronic pain. It is a reality that one who does not have can have empathy or understand. It is what I must deal with it. No one else has to, just me. Changing the focus of my profession towards what I want for myself while I live with migraine disease, I am confident will help me find the person I have ignored for so long, and have wanted back even longer. You might even say I lost her at 6 weeks when my birth mother gave me up for adoption, after taking me home, breast-feeding me, and then coming to the conclusion she was not, at 19 ready to be a single mother. I understand her decision. I also believe I lost my center then, and there is a hole that I have tried to fill all my life that never gets plugged up. It probably never will be in the way a child feels that longing for something that is missing. Somehow that is more alright with me now. It is a part of the person I am looking to put back together, hole and all. I have had glimpses of this person, but never had her whole, including the migraine disease and chronic pain as part of the package, but not defining the package. I want to know her, and I want the world to know her before I leave this plane.
It is not a lot to ask. I think I’ve earned it.