Sunday, September 28, 2008

taking ME out of MigrainE

Richard M. Cohen, who is the husband of Meridith Viera (co-host of Today show), has had MS for the last 30 years and endured 2 bouts of colon cancer. He is the author of a memoior, Blindsided, about his experiences with his illnesses and is also the author of Strong at the Broken Places, a book about the lives of five people with chronic illness. He first came on my radar when I was watching The View last year as he was interviewed by the five co-hosts. I cried through Mr. Cohen's entire interview. The questions they asked about suffering with a chronic illness were insightful. His answers were inspirational. Mr. Cohen said he is not his disease. Out of everything he said, that was what stuck with me. You are not your disease.

I may not be my disease, but I certainly struggle a lot with my disease not intruding on how I view myself. My husband reminds me frequently that my Migraine, my NDPH (New Daily Persistent Headache) and I are not one in the same, but it is difficult to make that a regular thought process.

Since my Migraines and NDPH abruptly started October 26, 2005, my life has significantly changed. I frequently liken it to the death of the old ME. My Migraines and NDPH became the new ME. The old ME loved her job as a speech language pathologist serving three to five year old children with mild to severe disabilities. She worked long hours with dedication and loved to make those kids feel special. The old ME volunteered at a food pantry where I was an apprentice leader. Part of my job was to give food to those people who came in, but my favorite part was sitting down and listening to what was going on in the lives of these people who were hurting. I enjoyed praying with them and giving them hope. The old ME hung out with friends after volunteering, at church, after church and throughout the week. The old ME was a girlfriend and a fiance who gave as much to the relationship as she got.

All of us at one point and time has thought, when I die, I will really be missed. But, when someone passes away, life still has to go on. Eventually life returns back to a new normal. When my life was interrupted abruptly by Migraine disease and NDPH, my old life stopped, but everything proceeded without ME. My job was filled by a new speech pathologist. A new apprentice leader took my position as a volunteer at the food pantry. Friends who I saw at work, church and the food pantry slowly fell away. Acquaintances became non-existent. I lost friends. I was out of sight and out of mind. In my relationship with my then fiance and now husband, he became the caregiver and I became dependent. Everything changed.

My old self died. Some of that is good. I used to be a perfectionist. I used to have to be in control. I was extremely scheduled and had an unending list of things to do. I was actually a little obsessive compulsive. But, dealing with a chronic disabling illness, I could not be in control of most things and had to come to terms with that. I stopped having a schedule and became more flexible. Instead of a calandar of things to do, I would write down what I was able to accomplish after the fact. I had to change and grow. This part of the new ME that I like.

But, since my life has changed so drastically, it feels as though I have slowly morphed into my disease. Am I my Migraines? Am I my NDPH? Where as my life used to feel unlimited, now I am defined my my limits. My friends have stopped calling because they do not want to bother me if I am not feeling well. When I do communicate with them, their emails consist virtually solely of asking me how I am. I have to encourage them to share with me about themselves and actually answer my questions about what is going on in their lives. My husband freqently has to take care of the basic household chores I am responsible for because I am not able to accomplish them. We've even taken advantage of online grocery shopping, Peapod, because I have been unable to make it out of the house to run errands.

It is a very difficult task for me not to see myself as my Migraines. Whether or not I am able do the chores around the house such as laundry or cleaning is iffy. Whether or not I make the gamble and schedule an appointment is risky. Whether or not I dare to make plans to see friends is rare and if I actually make the date is even rarer. Everything is dependent on if I have a Migraine or my NDPH pain is elevated.

Who am I now? I know who I used to be. I liked that girl. I used to have the ability to serve others, to love on kids, to listen to those who were hurting and to pray with those who needed it. But, since the onset of my Migraines and NDPH, the focus became on ME. I could not give to others anymore. Others have to take care of ME.

I am still trying to figure it out. But, I know I do not want to be my Migraine. I do not want to be my New Daily Persistent Headache. I want to know who the new ME is.

I am left pondering Ecclesiastes 3:1-7
"There is a time for everything and a season for every activity under heaven:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace."


  1. WOW. That was so ....... ME!!!! You spoke that so well, that it could have come from my own life, seriously. I can relate to every single part of what you wrote.

  2. Once again, I am right where you are, down to the very verse that you quoted.

    I thought I got over the old me. I mourned her loss and went on with life, but like so much in my life, the memories blindside me when I'm least expecting them. Sometimes it's because I need to revisit the person that's still inside of me, just hiding, waiting for a brief moment to come out and play. I tried awfully hard to forget the things in my life I loved back then. Now I know, it's okay. We move on, but we don't have to forget the things that give us joy.


  3. I can relate so well to the words written in your post. I still have NO idea who I am, and the accident that triggered my chronic migraines was 2 years and 4 months ago. I miss the person I was and the person I could've been. And, I wonder, what is God trying to do in me... because sometimes it feels like nothing. I know that God has a purpose that will work in HIS TIME. Sometimes, it's just hard to wait...