When I grew into a teen with epilepsy that I had lived with since birth my amazing neuro Sir James Manson, Director of Pediatric Neurology at Royal Adelaide Womens & Childrens Hospital, Australia told me exactly what kind of epilepsy I had, suggested books and articles on the subject and told me the best thing I could do for myself moving forward was to become as informed on my own diagnosis as possible and become my own best advocate so I did. When my son was born disabled I heard again Sir Jim’s words and became my sons best advocate and held the medical team to their word and their plan and god help them if they didn’t. So fast forward 25 years and I am in a wheelchair for life with spinal cord injury, epilepsy, neuro spasticity, PTSD and Propio spinal myocloneus and also suffering from severe clinical claustrophobia. Yes a pot pourri of disability but between Ella and I we stay on top of it.
I explain this because two weeks ago I was told that this morning I would have to have a ct scan for concerns over bowel and digestive problems so my gastroenterologist can treat my conditions correctly. A Ct you say simple? Yes it is when competent professionals do their job and treat the patients with respect and honesty something that when you have the severest form of claustrophobia and are being asked to go into a dark tube is important.
Last week I rang the hospital, gave them my weight, my height and why I was having a scan and asked them how far would my body have to be in the tube. The four times I rang I was told they couldn’t tell me so Ella rang and she got a similar response so we looked online to no avail.
Today we had to be at New York Langone Medical Center on 35th Street and 1st Ave, in Manhattan before 10 am to check in to have not one gastro scan but two. I rolled out of the elevator asked for a technichian and explained my concern. I was told I would only be in the machine up to my waist and twenty minutes later I was allowed to see a vacant machine and the technichian who would later do my scan told me I would go in to my ribcage only. I decided I could do that since my head would not be covered I wouldn’t panic.
I was taken into a room and given 900mls of contrast and told to drink a glass every five minutes. I did and it took 30 minutes to drink it all.
I was called and told to strip and put on a gown. I again asked for confirmation that I would only be in chest high and again was told yes. I was called into the room and the technician who an hour earlier had shown me the vacant machine again said as I got on the table that I would be in chest high as I layed down and a nurse put in an IV for the second kind of contrast and I was told the 5-10 minute scan would start.
The loud speaker said in the machine “we’ll do a test film so you can now get used to being in the machine???” IN THE MACHINE? I yelled for him to come back into the room, he came in and suddenly the same person who had told this claustrophobic epileptic not once in the last hour but twice that they would only be in chest high was telling me I would be completely in the machine up to the top of my skull? HELL TO THE NO there I was with a drip in my arm, a litre of radioactive shit in me out of my wheelchair at the hospitals mercy being electronically rolled into my worst nightmare.
The tech said “if you can’t handle it raise your right fist and I’ll IMMEDIATELY roll you out, by now I was having 100% facial and limb spasms and could barely hear him, he rolled me in and I immediately held up my fist.
The speaker burst into life “too late now you’re in stop complaining, it will be over in about ten minutes.” I was screaming by now and no one was coming. I was crying. I was into a pre seizure state and no one cared in one of the cities most prestigious hospitals. I was left in this damn circular coffin to seize.
All of a sudden a PA (physicians assistant) was telling me my hysterics were ridiculous and unwarranted and she didn’t appreciate them. I was an adult act like one. I pulled out my own IV, I reached for my chair almost falling from the table all the time being told if I kept it up I was in trouble.
I got into my chair, told her what I thought of her told the tech he was an inconsiderate liar and demanded the department head. Well five minutes later we were ushered into a room and if doogie howser was born in Mumbai he was standing in front of me, was it bring your child to work day? This was the head of radiology, he had on skinny jeans a rock and roll hoodie and Vans and pimples. I looked for the skate board.
He heard the lies, the abuse the lack of compassion and his jaw hit the floor he assured me on Monday I would hear from an actual grown up doctor bigger than him. If Monday happens it probably won’t change much because that kind of abuse trickles down from the top. The PA told me my attitude was horrible? Well to her I say, if you don’t lie, if you don’t abuse, if you don’t ignore the patient, if you do respect their rights, their problems, their diagnosis and all it entails. The only attitude you will ever see is one of gratitude but to the attitude I suffered today I say screw you and the horse you rode in on.