I got my first migraine about fifteen years ago, at Christmastime. I was nine years old, and my third grade teacher was making these gingerbread cookie ornaments for the students to take home so we could hang them on our Christmas trees. The dough was filled with whatever it is that makes gingerbread smell the way it does, and because it was inedible, that dough sat in that room for three full days on end, infusing everything with its potent gingerbread scent. The first day didn’t bother me so much. I just felt a bit queasy by the time I got home. The second day was rough – I was nauseous, dizzy, and my head hurt “a little bit.” By the end of the third day I had all but hidden my head inside of my jacket, trying to protect my eyes from the lights and my nose from that obnoxious smell and doing my absolute best not to vomit all over my desk. Needless to say, I lost my battle with my stomach, and my mom took me home early so I could go see the doctor.
That was my first official migraine.
By the age of fifteen, I started getting them at least twice or three times a month. By the end of high school I was getting them weekly, and I got my first status migraine by my eighteenth birthday. Now, at the age of 25, I have been living with chronic migraine for four-and-a-half years with episodes of status migraine about every six weeks. Actually, I’m on Day 20 of a status migraine right now. Both arms hurt from blown vessels from my back-to-back ER visits, but hey, at least I’m holding down dinner for the first time in four days, and I think I might actually have a shot of developing some abs for the summertime due to all of this vomiting and dry heaving.
My migraines have been getting really severe. I’m 25 and I can’t drive anymore, my memory is shot, and my pain level hasn’t dropped below a 7 in over a year. I live my life based on how far away I am from a toilet or a place to lay down, just in case. It’s gotten to the point that I now have to apply for disability even though I’ve never been physically well enough to hold down a job. And yet, despite my recent periods of existential crises (“Why am I here?” “What is my purpose in life?” “Why do vomit basins have to be made of such unforgiving materials?”), I can’t help but recognize that my life could be so much worse than what it is.
My uncle was diagnosed this year with hypersensitivity pneumonitis and bronchiectasis. Basically, his lungs were exposed to black mold during Superstorm Sandy, and now the mold is growing in his lungs. His bronchioles have turned into mold trees – in his lungs – and he has less than two years to live if he’s lucky. He was listed for a single lung transplant a few weeks ago, which unsettles me because this disease affects both lungs and they’re only willing to fix one lung (the healthier one, at that). There are so many unknowns floating around in my brain and there are parts of me that are too scared to learn the answers to my unasked questions.
So I’m clinging to my trusty toilet, complaining to God about the fact that the ER doctor and my migraine specialist are playing a game of “responsibility ping-pong” and how neither will admit me for a DHE infusion (which is what I need to get better, which is what they did after my 30-day status migraine back in August, which is what WORKED), and I’m basically shivering from allodynia and my pain being so uncontrollably high, feeling like my skull has fractured from blunt force trauma, when my mom comes into my room looking like death washed over and proceeds to tell me that my uncle’s transplant came through.
He’s being prepped right now for surgery. He goes under the knife at midnight.
And I’m too sick to be with my family and support them through this “milestone”, to offer hugs and kisses and to be the charming granddaughter that everyone loves and expects of me. Instead, I’m laying down on the bathroom floor, fighting uncontrollable pain, clinging to the toilet and waging war with chicken noodle soup.
And of all the innumerable thoughts that are storming through my brain right now, in the midst of the prayers and the bargains and the cries for help for my uncle, I can’t help but wonder when he recovers from this (because he will recover, he will heal from this, he has no other choice but to heal from this) what sorts of medical nostalgia he’ll experience at Christmastime. I always remember my first migraine at Christmas, my first ER visit, my first MRI, my first trip to a neurologist – they all fell around Christmastime. I wonder if my uncle will remember his diagnosis, because it fell at Christmastime too. His lung transplant will fall at Christmastime. He’ll look at the scars on his chest and remember the pain and see those etched lines as bookends to this part of his life, just as I see my PICC scars and Botox eyebrows as bookends in mine. He’s six feet tall and has dropped nearly sixty pounds, and I’m five feet tall and gained fifty pounds – both of us due to medicines and changes in eating habits due to our conditions. We both have trouble talking on the phone – me because of my sensitivity to sound, he because he literally cannot breathe. I wonder when we both recover if we will look back on these times in our lives and remember the days when we could not do these simple things and think to ourselves: “I made it through this.”
Illness has a way of making an individual feel a sense of nostalgia. Or maybe, nostalgia isn’t the right word. Maybe it’s just sentimentality, or remembrance.
I just pray to God the word isn’t melancholia.
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