Hello Tremors, My Old Friend

I realize that as a woman who has been unmarried and dating for her entire adult life, my vocabulary is vastly different from that of someone who has been married 5, 10, 20 years or more. Technology is constantly evolving and so is the vocabulary of the people using it to find love…or something like it.

I had purchased some very nice and personal Christmas gifts for a guy I had met at the beginning of December. I didn’t go nuts – total they added up to about $65. But one of the items I bought at the store my sister manages, and I had to explain to her that I had been “ghosted” by the guy, so now they are just sitting on my couch, all wrapped up pretty and useless to me.

“Ghosted,” for all of you lucky enough to not have to worry about such things, is the act of pretending someone suddenly doesn’t exist.

It could be that you were talking on the phone or texting; it could be that you went on a date or two; it could be that you’ve had sexual relations; it could be that you’ve been together for a few years and maybe even lived together. Whatever interaction you had with the person ceases to exist.

The most harmful part of ghosting is that the person who is left behind is often left with questions because the other person isn’t adult enough to talk about the situation.

(Disclaimer: This should never be confused with blocking communication because someone doesn’t respect another person’s boundaries and personal safety.)

In my case, I had two 8-12 hour dates with this guy; we had made plans to get together for another date, but then I got that very painful crater in my backside and I had to postpone. He took that as his cue to ghost me.

Besides his gifts staring at me from my couch, I have cleared my space of him, including electronically. Everything is blocked in the event that he gets drunk and stupidly tries to contact me again. I might not ever know why he disappeared, but then again, I don’t have the patience to listen to lame excuses.

But now I am back at square one. I have to go through the process of connecting with someone again and easing them into my rare disease symptoms. It’s the same old song:

“Yes, I’d like to get to know you, but no, I don’t have a car and I can’t drive, and no, you can’t pull my hair because it will come off in your hands, and no, I can’t go to dinner an hour away, and no, I’m not lazy or a gold digger…”

Well, you get the idea.

Even more stressful is a problem that just presented this week. Back in 2010 when I was trying to find any doctors who would be willing to help me, I developed a head nod. One doctor described it as a “yes-yes” movement. It got to the point where the MRI techs were yelling at me to hold still because they couldn’t get a clear picture. Well, I couldn’t hold still!

I had it until my first shunt surgery in July of 2011. The shunt did its work and moved the CSF (cerebrospinal fluid) off the areas that it was pressing on including (probably) my brain stem. I haven’t had the head nod between then and now because my surgeries have come in quick succession.

But now the tremors are back.

I was waiting to see a new doctor regarding my field of vision just this past Friday, since my eyelids become paralyzed when the CSF builds up and presses on the nerves leading to my face. As I was waiting, I felt the shaking sensation in my neck, as if something has been placed inside my spinal column and I was a hand puppet being shaken. I can’t stop it.

Back in 2010 I was sent to a biofeedback therapist and learned that if I held my breath, the tremors would lessen. Of course, silly me – I have to breathe, so I couldn’t control the severity of the shaking. But as I was sitting in that waiting room chair for the ophthalmologist, I tried to remember all of the techniques we had tried to calm my body. They didn’t work.

The field vision test for ptosis is just as uncomfortable as it is funny.

First one eye is tested with the lid in its resting position with the ptosis in all its glory. A little dot of light travels from different peripheral starting points in a sort of box that the head rests against, and the patient has to click a button when the dot is noticed.

For the second part, the technician tapes the eyelid open (at least 20% more from its resting position) and the test is repeated.

I was laughing because it reminded me of the game I’ve seen Jimmy Fallon play with guests on “The Tonight Show” – if one player misses an answer to a quiz question, for example, the other person gets to tape their opponent’s face in a funny way. The eyes can be made to droop. The nose can be taped up into a pig snout.

My eyes were taped open. What was my prize for playing?

Well, it would be a more accurate reading of what I could see or not see with the paralysis of my lids and upper portion of my face to strengthen my case for disability.

The technician also had to physically hold my head in place for the testing because of the uncontrollable nodding.

I am pretty certain it’s happening because I have had pressure for such a long time on my brain and brain stem again, almost exactly as long as the first time in 2010 when I was trying to find help. Because of the crater and endless medical appointments, I haven’t been able to lay flat every day, and my brain is stressed to the max.

But, guys, here’s your chance – I nod “yes” to everything. I’m ready to audition the next batch of bachelors. If you ask me out, I can’t turn you down!

giantPictureAbout the Author: Patient Worthy Contributor, Chelsea. Keep an eye out for posts from her as she navigates the gnarly dating world, chronic illness, and searching for a diagnosis. Check out her blog, The Sick and The Dating.

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