Wishful Thinking, Crazy Idea
Last updated: October 2015
This is what I want someone to do.
I want someone to create a cap, but not just any ordinary cap – this one will be special. This one will give its wearer everything that migraineurs have to suffer and I mean everything. I want them to experience the full gambit – from the time the first warning symptom presents itself until the last, nausea, visual disturbances, light and sound sensitivity, aphasia, weakness, fatigue, anxiety, paralysis, despair, pain – the most important one of all, I want them to feel the pain. They’ll be expected to wear this cap 24/7 for no longer than three weeks with only one understanding – they won’t be given any warning that it’s about to happen or what they will experience. And when the time is right, the symptoms begin. Doesn't matter where they are, doesn't matter who they’re with, doesn't matter what they’re doing – they’re hit – just like we are.
Let them try to drive in rush hour traffic when the better part of 60% of their vision is gone because of the bright, prismatic effects of the sun on glittering windshields, bumpers and the glare from that one spot on their own windshield that they couldn't reach so they didn't clean it and didn't give it a second thought.
Let them try to be at the most important board meeting of their life and suddenly get hit with excruciating nausea.
Let them try to be an articulate call taker for some corporate entity and the aphasia begins to set in and they’re speaking in another language or maybe even backwards like I do sometimes.
Let them be on a dinner date with their significant other and the sudden clanking of glasses, the scraping of utensils across a plate, the laughter from the now too drunk executive in the corner is too much to bear.
And then the pain. The pain that drives us into cool, quiet, dark rooms to try and rest but the pain keeps coming and coming and then….
Make it so bad they have no choice but to go to the emergency room where they will be met with skeptical nurses and doctors. Let them feel the ice pick burning its way through their skull as the doctor shines the light in their eyes. Let them suffer through the forty-five minutes in the MRI because the symptoms are mimicking a stroke to such a fine degree the doctors can’t diagnose them correctly without looking at their brain. Let them endure the four or five (sometimes six) needle pricks from the nurses attempting to get a viable IV, I’m sure all the while thinking this is some drug seeking person and not paying complete attention to the big picture.
Let them feel what we feel when we are given four different pain medications, an anti-nausea, a muscle relaxant and god knows what else they put in those IVs – all for the sake of finally getting some relief. Then….
Let them talk to the doctors that swore they were having a stroke but have come back hours later to tell them there’s nothing on the MRI and that what they were experiencing is a migraine or if they’re really lucky, be told that it’s nothing, then immediately discharged, told to go home and see their doctor.
Then once they get home and they've had fourteen hours to sleep off the medications….
Hit them again.
Let them have a couple of peaceful days, then hit them again.
I’m not sadistic by any means but I’m just wanting someone else who hasn't experienced our condition to feel what we feel. With my disability hearing just weeks away (December 2nd) I’m betting my life that if the judge or the vocational doctor from Social Security who will be at the hearing were to experience what I have to go through day in and day out, I would be approved without a second thought.
My anxiety has hit an all time high within the last couple of days because I have been stressing over the hearing. If you've never been to one, it’s really rather simple but intimidating. You’re shuffled into a room with your attorney, a vocational doctor from Social Security and administrative judge. You’re not allowed to bring in witnesses, but letters from them are accepted as evidence. You’ll discuss your condition at length, talk about your work history (to see if there is a chance you can go back to a previous job and work), answer questions from all three and listen to them as they speak back and forth. I’m told to expect mine to take about an hour give or take and then it’s over. Then it can take the judge up to 180 days to decide whether I’m truly disabled.
My mind keeps playing over different scenarios – what happens if I have a migraine while I’m in with these people? You would think this would be a win-win situation – they’d get to see first hand what I go through but it’s a double edged sword. If I tell them I can’t go on and not enough evidence has been presented, they can reschedule my hearing but if I endure the hearing to the end, it will prove (to them) that I am capable of working. My only hope would be a migraine to end all migraines, with every symptom I experience presented – left side of my body going numb and partially paralyzed, deep waves of nausea, extreme weakness, full and complete aphasia and a total loss of my surroundings, who I’m with and what I’m doing. It’d scare them enough they’d call for an ambulance.
I know I have a long way to go before the day arrives but this is a very deep seed of concern that I just can’t let go. And if by some chance this judge says that I’m not disabled, I am prepared (as well as my attorney) to keep the battle going – I will appeal. I just hope and pray that it doesn't have to go that far.
How important is migraine awareness to you?
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