As I checked my blood sugar, my heart fell to the cold tile bathroom floor and shattered. I was doing something to bring myself delight, to distract from the frustrations of the ketogenic diet. Instead, I was blindsided by grief while watching a Dave Matthews Band video.
Last year I told the friend I used to see shows with that I was done. I said I loved the music and dancing, but the obnoxiously drunk frat boy crowd was more than I could deal with. Until 30 minutes ago, I believed this to be true. I believed not going to shows was a conscious decision. When grief walloped me upside the head, I discovered that migraine had make the decision for me.
My grief is not about a band. It’s not about going to concerts. I’m grieving the release of throwing myself into music and dancing for hours. It’s a high that carries me for days when I see any band play live, and for months when it’s my favorite band. Dancing at shows is not just an activity, it’s a vital part of my happiness.
Despite what I told my friend and myself, I haven’t moved on. Saying otherwise was an attempt at self-preservation. I miss going to shows so desperately that I’d convinced myself otherwise so I wouldn’t have to face the loss. How do you move on from losing a fundamental part of what makes you who you are?
This kind of grief is so hard. It’s a reminder of all that I’ve lost and a realization that I may never get it back. It makes me wonder what else I’ve convinced myself of, what other grief will tear into my chest unexpectedly. It makes me wonder how many other fundamental parts of myself migraine will consume. It makes me wonder….
OK, Kerrie. Time to stop ruminating. What are you feeling in your body?
My chest is tight. It’s so hard to breathe that I feel like I’m on the verge of hyperventilating. My stomach twists, pulling me down so I’m curled in a ball.
It hurts so much.
How do I move on from losing a fundamental part of what makes me who I am? I will do it by remembering that losses aren’t forever, even though they feel like it at the time. I will remind myself of the four long years in which I couldn’t read. Now, four years after I started reading again, I still cry when I think about how much I missed it. I will think of all the treatments, technology, devices, and drugs I have left to try. Most importantly, I will keep trying—trying new treatments and trying to do the activities I love.
When a band I like announces a local concert, I put it on the calendar. The day of the show, I take it easy and try to minimize food triggers. I do this despite missing every show since January 2015. My heart hurts each time I confirm that I won’t be able to go out, but I keep making plans. I have to. To stop would mean believing I will never feel better. And I refuse to believe that.
The first time I “got” meditation, lyrics from my a Dave Matthews Band came to mind: “Honey, honey, come and dance with me.” A song about living and loving wholeheartedly, it has always felt like it was written for me. For better and for worse, I live voraciously. My grief is so intense because my joy has been so great.
Dancing, traveling, practicing yoga, baking, eating, laughing with my friends, and spending time with my family bring me such great pleasure that I will never, never, never give up on trying to feel better. Even if I have to sweep up my shattered heart and piece it back together from time to time.
This is hitting me where I live today – comedy shows are what define me and I had to miss a tour that included two of my favorites in the WORLD last week because of migraine. Isn’t it bad enough that laughter makes my head pain worsen? It’s so hard to stay strong…
Thank you as always for sharing your thoughts, Kerrie. XO.
I’m sorry you’re in a similar place, Amber. It sucks. I’ve given up on staying strong all the time, but it’s a difficult balance. Giving in to the grief and indulging the hopelessness from time to time is cathartic for me. But when I tried dwelling in it, I felt so much worse physically and emotionally. I decided then that my choices were suicide or believing that relief is possible. I don’t want to take the first choice, so I keep coming back to the second. Even when it feels impossibly far away. I think of you often and send love your way.
Take care,
Kerrie
Oh Kerrie, that’s where I used to be. But now, I hate to say it out loud, but I know I will never get better. No treatments have worked and Drs, albeit good ones have exhausted what they can do for me. I’m spending everyday in bed. I have no life whatsoever, but I have a wonderful husband. I’m 62 and have been chronic about 30 yrs. in my head I want to plan things, but my pain level never allows me. Glad to see you not wanting to give up. That’s usually my nature too, I’m just so tired from the constant pain.
Theresa, I’m so sorry to hear that. I have been completely worn down by migraine at times, too. It’s hard to avoid thinking that if nothing has worked yet, then nothing will. I try to remember that the pace of research discoveries has increased dramatically in recent years and that some treatments in development are so much more effective than anything we’ve had so far. I don’t want to dismiss what you’re feeling. I wanted to share the refrain that I cling to and let you know you’re not alone. I hope that new discoveries can help us both.
Take care,
Kerrie
Them be fighting words girl! Yer damn right! Go, go, Go, GOOOOO!!!!!