The WEGOHEALTH Activist 30 Day Writing Challenge, Day 23

“Say WHAT?! What’s the most ridiculous thing
you’ve heard about health or your condition. Was
there any context? What did you think at the time
you heard it – and what do you think of it now?”

About a year after my traumatic brain injury, my rehabilitation therapist got me into a brand new study that was being done to diagnose brain injury. It has been written up and talked about quite a bit lately, but at the time, I was one of the first to experience a very small MRI that took fiber tracking images of the brain. The machine was very loud, it vibrated and I was in there a long time. That in itself would have been enough to rattle anyone, but it was especially difficult for me because I was in migraine when I went in, and in excruciating migraine when I came out. I remember praying the whole time saying, ” The Lords Prayer ” over and over just to keep myself from freaking out to the point of no return. I saw flashing lights, jagged lines, and bursts of exploding auras. My head felt like it was on fire. My body was sweating profusely and it felt like I could barely breathe. I tried not to think about how small the inside of that MRI was. I kept my arms clutched up against me and yet they still were touching the cold metal sides. 

Did I mention that I’m claustrophobic? 

I held on to the little ball that they give you to push if you get into trouble like it was a direct call button to God. I wanted to push it and get out, but I wanted something else even more. I wanted to be part of the reason and solution to understanding brain injury. I wanted the personal satisfaction that I helped bring an end to the suffering of those who aren’t believed about their brain injury. I wanted to be able to say that I was part of the first trials that enabled doctors to believe that when a person said they were having difficulty with memory, cognition, mood or bodily functions, there would a MRI that the doctors could order that would show them that the person was indeed, telling them the truth. A human lie detector to wipe out the lines between mental illness, malingering and brain damage. That’s how I looked it. I was proud of my courage. It was, and for reasons that I can’t explain fully, the bravest thing I’ve ever done in my life. 

It was probably the most I ever did during a migraine, but, I did it for humanity and I did it for myself. I wanted to put an end to my own mistreatment. The latter didn’t quite happen, but I can say that I did everything I could to help myself and other brain injured people in the best way I knew at the time.

When I came out of the MRI, I was dizzy, disoriented and my head was pounding like a locomotive with a engine full of fiery hot coal. It was on track into Hades and I was along for the ride. 

I was given an ice pack and a bottle of water. I took another Valium and a pain pill. And then it happened.  I was sitting in the inner waiting area shaking and spasmodic from my yet to be diagnosed dystonia and vestibular disorder. The nurse involved in the study was in the room with me along with my rehabilitation therapist. They were discussing my chronic, intense migraines. My therapist explained how severe and debilitating my migraines were to the nurse. She listened and then said to me,

” Janice, If I had as many migraines as you, I’d kill myself.”

Now up to that point, I had been sitting there trying to collect more courage for the long ride home in the bright sun. I was telling myself that I had just done something very important. I was telling myself that I if could survive that experience, I could survive anything. I was telling myself that I was stronger than my pain. I was thanking God for getting me through that MRI and asking that it please not be for nothing. Please let me just get home to bed.

And then I heard her say that. I don’t know, maybe she went to medical school with the same doctor who told me, ” You should be better by now.” The one who rolled his eyes, threw his hands up and wrote me off as a mental patient. I mean, the big deal health system had several doctors who said some really horrific things to me. Me, a brain injured woman with dystonia, vitamin D deficiency, Hasimoto’s disease, hypothyroidism, fibromyalgia, trigeminmal neuralgia and inner ear damage and all the symptoms with go along with those conditions. Me, a middle-aged woman with a double-fused cervical spine, osteoporosis, osteochrondropathy, osteoarthritis and several healed fractures. Me, a person living with many legitimate reasons for chronic pain, being psychologically abused by misdiagnosis,mismanagement and mistreatment. And yet, here I was, in a TBI study. One of two actually, at the same time.

And I’m told,

“If I had as many migraines as you, I’d kill myself.” 

Yes, she really did say that, a nurse, to me, after I had just volunteered in a study that might end up changing the way brain injury is diagnosed and treated.

No graditude. No compassion. No sympathy or support. Possibly the worst nurse ever.

But, I went back and I did it all again because they asked me. I did everything they asked of me.

When I got my first report, I had to meet  the neurosurgeon who was in charge of the study. My husband and I waited a very long time, because as he later told us, ” I’m a busy dude, man.” Anyway, he walked in and said, ”  You’re not crazy. You have a brain injury.” He then went on to show us the four areas of my brain that were damaged. They were the four areas in which  I had said I was having trouble. Of course, this was a preliminary study, so that’s why I went back for the second one. The next time, the MRI was bigger and not as loud, but I had to be in it for 45 more minutes past the time because they had to do some pictures over. 

However, I didn’t end up getting the pictures they said I would, so I’m not exactly sure what happened. 

I’m told the MRI will be available in a few years as a tool to diagnose and treat brain injury. I’m so glad. 

I still continue to have the same problems that I had then. I still get migraines. Every eighty-four days, I get Botox injections in my head, neck and shoulders. But I’m still here, so clearly, I’m a lot stronger than that nurse. 

In case you’re curious about what it’s like to get Botox for migraine and dystonia, I made a video. https://youtu.be/LKYNQtWpATA https://youtu.be/qmrUyxTKPgw

Don’t say things like that to people living with migraine . Especially to someone who is giving it their all everyday just to get through to the next one. Instead, thank them for their courage and offer a helping hand any way you can. 

We are all in this together. Let’s try to act that way, shall we? 

Janice Tindle holding a magazine with an article discussing the kind of study in which Janice participated.