On looking up (and being stuck on the ground)

Frequent and debilitating low back spasms are one of my most common, recurring, and disabling physical experiences. It makes it nearly impossible, if not completely, to sit or walk. During these days/weeks, I make a nice bed on the floor, gather everything I need within arms reach, make up songs, watch lots of TV, and try to combat the depression and hopelessness that can hit when you’re experiencing high pain coupled with high disability for an extended period of time.



On Grief: 48 Hours After Diagnosis

2 years and 10 months ago, to the day, I woke up in pain. Not a headache, not a little soreness, but a pain that racked my body such that I spent the next 3 weeks laying on my living room floor desperately watching every episode of Friends and Gilmore Girls to distract myself from my fear and agony. It has been a long, challenging journey from that day to today, filled with a lot of crying, laughter, anger, gratitude and a heck of a lot of love.

48 hours ago I was officially diagnosed with Fibromyalgia. And it’s been a long, challenging journey from that day to today, filled with crying, laughter, anger, gratitude, and a heck of a lot of love. It’s gone a little like this:

The First 24hr

  • 4pm – Received official diagnosis
  • 430 pm – Call friend and say aloud for the first time “I have Fibromyalgia.” Too shocked to cry.
  • 5pm – Feel great sense of relief wash over me. Finally, an answer!
  • 8pm – Scour the internet for information. Pat myself on the back for how much I’ve already learned about chronic pain management. Sigh at the limited options left for me moving forward.
  • 11pm – Go to sleep. Yeah right! You thought you’d sleep?! What were you thinking?
  • 2 am – Get out of bed. Channel energy into playing with my boyfriend’s model skeleton for anatomy class and make an “art” statue out of it.
  • 4am – Fall Asleep
  • 11am – Wake up stiff and sore. Oh, the joy of Fibromyalgia mornings. Now I know what it is, this is good. Now I know this is how every morning will continue to be, this is not so good.
  • 2pm – Go out to lunch. My body is protesting every movement I make. I walk slower than everyone else and try to smile. I have to get used to this for real now. I can do this. I have to do this. 
  • 5pm – Cardio. “You can have weak muscles that hurt, or you can have strong muscles that hurt.”
  • 8pm – Scour the internet for more info. There must be something more I’ve missed.
  • 10pm – Feel reality kicking in with full force. Settle in for what I know will be a long night.
  • 1am – Thank god, Friends is on TV.
  • 3am – Angels in the Outfield comes on. I don’t remember it being this corny when I was a kid.

24-48 hr

  • 5am – Sam is going to adopt JP and Roger. Very strange skeleton-man Angel makes last appearance. “We’re going to be a family now!” I nearly cry, but its a smidge too corny.
  • 5:10am- I climb the stairs for bed. Next thing I know, I’m sobbing on the floor against the bathroom cabinets. I am so grateful to have an answer. I am so grateful to not be ill with any life-threatening condition. I am so grateful for my support. I am so grateful to have some more steps to take. I am so devastated that I will continue to be in pain. I am so devastated that this will continue to affect every aspect of my life. I am so devastated I will never be able to return to life as I once knew it.
  • 5:30am – Boyfriend finds me collapsed on floor. Sits with me. We grieve what has been lost. We grieve for the hard days to come. Boyfriend points out that in a few days more than half the time we have been together will have been post-wakingupinpainday. This is sad, but deeply comforting. We can do hard things together; we can make this work.
  • 5:45am – Boyfriend pulls crunch ice cream bar and smores poptarts from thin air. Oh yeah, we got this getting through tough stuff thing down.
  • 6am – Sleep
  • 11am – Make coffee bleary- and teary-eyed. Do some gentle yoga. Remember to breathe.
  • 12pm-3pm- Cry at every corny thing that happens on Boy Meets World. Laugh heartily when Eric says “I must say, I am reveling in the mastication of these comestibles!” If Eric can get through the SATs, I can SO do Fibro.
  • 4pm – Cardio. Rock out to Destiny’s Child “I’m A Survivor.” I may have fibro, but my body is way too bootylicious for ya babe.

While unleashing my strong-willed inner pop diva, I recognize the importance of letting ourselves experience pain and grieve when we have lost. Trying to stay strong without grieving is like trying to build a house without any tools. When we’re hit over the head with loss, we’ve got to rebuild. But without grieving, without letting yourself feel the hurt, you also close yourself to the exact tools that you need to keep moving forward. Without grieving, you miss out on feeling the gratitude for being able to experience what was lost, and for all that is still beautiful in your life. You don’t get to feel the love of your friends and family, who step in with icecreamcrunchbars and phone calls and text messages and hugs, while they bravely walk beside you through this tough moment. You don’t get to feel the joy in knowing that you don’t have to rebuild your house alone. And you miss out on that critical moment where you know, deep down: This is hard, REALLY hard. This hurts like hell. But I’m still here, and I’m going to be stronger and braver and more loving for it. And I’ve got some kickass people in my life who are going to be here to back me up, through all of it.

Pain is a part of life. It’s gonna hurt, and that sucks. But I can see that now that I’m building a life with a lot of meaning, filled with gratitude and love and joy and icecreamcrunchbars. And to me, a life without all of those things (especially the icecreamcrunchbars) would suck an awful lot more.

“The dark does not destroy the light; it defines it. It’s our fear of the dark that casts our joy into the shadows.” – Brene Brown, The Gifts of Imperfection

Love, Alex