Posted on 08/30/2019
As I sit here on my couch in Georgia caught firmly within the clutches of a monster migraine, my family is getting home from an Alaskan adventure. They flew cross-country to Seattle, explored the city on land and sea, boarded a cruise ship in Vancouver and sailed to Alaska. There, they rode a helicopter to a glacier, went on a whale watching expedition and zip-lined over a lush forest. While they took what they described as the “trip of a lifetime,” I was here just trying to make it through the day.
This capped off what has been a season of missing out. It started off when my migraine sidelined me, so my husband and I could not go with our two and four-year-old nephews on their first trip to the happiest place on earth (aka Disney World). Then in April, we missed CHAMP’s RetreatMigraine in San Antonio, Texas, because I was in the hospital receiving IV DHE. The treatment did not break my 18-month long intractable migraine.
As I have continued to battle this relentless pain, we have missed countless events, big and small, outings with friends, plans and projects I longed to do. The list goes on and on. And I know I am not alone in this missing out. What has migraine or chronic illness taken from you this season?
The grief of missing out is real and cannot be easily dismissed. I think the grief comes in two parts. First, there is grief over the missing out of the experience itself. Of course, I wish I rode in a helicopter, walked on a glacier, and watched whales in Alaska. There is the missing out on these life experiences as well as the unmistakable sense that life is passing us by. Not being able to experience the fullness of the life we planned and envisioned for ourselves is a real, tangible loss.
The second part of the grief is over the missing connection with others. It is not just the experience we miss, but spending time with other people. For me, even more than being in Alaska itself, I wish I was with my family there: laughing, hanging out together and even getting on each others’ nerves.
My family on a glacier in Alaska without me
Migraine is an expert at disconnecting us. Migraine disconnects us from other people and can even disconnect us from ourselves. That connection with others is the thing chronic illness can most take from us. It is already difficult for people to understand what we are going through, the pain and symptoms they cannot see or feel. The fact that we are not able to share many common experiences with other people adds to our disconnection and pushes us further away.
In a recent Migraine Again interview, Dr. Peter Goadsby mentioned the migraine brain’s need for consistency and suggested we express “a little bit of regular grief.” What an interesting idea! It has stuck with me. I am not that good at expressing my grief, regularly or otherwise. Maybe we begin to do so by in some way acknowledging the particular loss this disease has caused each day. Migraine is a thief that has stolen something from us that we may not get back. We can be honest about that and validate the effect it is having on our lives.
Somehow, in the midst of this missing out, I have also learned deep gratitude. If we are going to acknowledge grief, loss and what migraine has taken from us each day, perhaps we can also acknowledge something migraine has given us. Maybe we will not feel that gratitude in the throes of pain, but it is often present. I now have gratitude for every small thing that I am able to do. Migraine has opened my eyes to what is around me in an entirely new way.
Enjoying my flowers
I have lived in Georgia for five years now, and this is the first year that I have begun to truly look around me and appreciate my surroundings. This is the first year I have noticed that there are beautiful, flowering trees all around the city. I have started looking around me with fresh eyes and a mindful heart. Evening walks around my little neighborhood have become adventures. They are not mere walks through known streets but opportunities to explore. I have found rose bushes that have been just behind our house for years but are new to me. We finally took the time to get some patio furniture on our deck and create a little oasis.
Migraine has taken many things from me, but I realize it has given me time to slow down and eyes to see with a fresh perspective, to enjoy and delight in God and the beauty of this world.
I am grateful now even for trips to the grocery store or bookstore. I am especially grateful for the friends who come over and visit when I cannot I get out of the house. They bring us food and are persistent in their love. They reach across that divide migraine has created and remind me that I am not alone, even though this disease often makes me feel that I am.
The list of things I have missed out on is long. Often, the grief overwhelms. Some days, it is all that I feel. But many days, its strange companion is gratitude.
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