Faking it to Make it- for too long
To explain how profound my loss, I must first explain what I once had. I had a brain that was amazing. I had friends and family who respected and trusted my words and decisions. I had been placed in honors or gifted programs my whole life. I didn’t get my first migraine until I was a senior in college. It was a classic with a visual disturbance and pain 20 minutes later. I asked my pharmacist for answers and prepared for the future. I went on to be top of my department in grad school with only a few migraines in two years. I did start getting a bunch of headaches toward graduation, though. How do I know? My friends pointed it out. I was too busy writing a book for teachers of immigrant children and doing work for the State Education Department. I was hot stuff. Right! What a perfect time for the universe to give me a reality check.
The summer after I graduated, I was back in my home town to start my first teaching job, set up an apartment, and help my sister get ready for her wedding. One morning in August, I woke up with a level ten, fully formed headache. I had been dreaming the aura. I had a blindness in one eye. Shortly after waking, I vomited. I tried to treat this as a migraine. It didn’t work. I became less capable of making good decisions. I also became much slower at processing through my senses and my humor disappeared. I tried to do the new teacher orientation. I can’t say I remember it. I do remember the terrible bus ride they made us take where I tried not to vomit on everyone. When I got off the bus, I drove straight to the hospital. I was admitted for a week and a protocol was used, but no one could help me.
I had that terrible headache for seven years, night and day, with no break. I saw more doctors than one person should see in a lifetime. I don’t remember my sister’s wedding, though I was the maid of honor.
Finally, someone decided (“what the heck?”) to try a spinal tap. So much fluid came poring out of me, they didn’t have enough containers to catch it. I had/have, by the old term, pseudo tumor cerebri or ,as it is referred to, IIH. Forgive me. My brain cannot remember what that stands for. But I can tell you that the reason it wasn’t caught was because every time a doctor looked into my eyes to check the pressure, it appeared fine. There was no swelling of the optic nerve. I hope I said all of that right.
It seems like a good place to say: And they all lived happily ever after. Except we didn’t. Of course, you know this was a family affair now. All were involved. After so much continued pain, handfuls of new drugs from each different doctor, weight gain from the drugs, side effects endured, jobs lost, self esteem crushed, sleep cycle ruined, etc. (honestly-do you really need me to go on? You’ve been there.). I was a mess. I got put with a doctor that new my condition and continued the spinal taps. But then I began to break down everywhere. I’d like to ask the community about that sometime, but for now I will say that the biggest new problem I faced became chronic migraine and trying to exist with this new illness. I decided long ago that I would not have children. I would not risk passing the horrific gene combination I own to anyone. That also meant no more men. I could barely take care of myself, let alone date and possibly let down someone looking to have a family. I have two rescue cats and they are almost more than I can take care of. They are not peaceful and calm. Like many of you I fake it as much as I can at my job so that I can continue to keep the health insurance that helps to pay for my care. I do not want this life. I cannot think. My family doesn’t trust my choices or decisions. I will never be smart and quick and sparkling with personality again.
What I am good at is being an at home movie-critic, microwave chef, e-book reader/editor, and internet shopper.
Thank you for reading my story.
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