August 7, 2019

Brokenhearted is the best way to describe how I feel some days since closing my studio.  I got an email the other day from a former client asking me to do some work.  I had to refer them to a local photographer as I sat there in deep sadness.

Much has been written about myasthenia gravis, but very little of it is written from the view point of someone with this disease.  Much of the clinical writing downplays the disease saying with some management, people who have it can lead a normal and productive life.

There's nothing normal about living with myasthenia gravis.

Here's an example of what happened 2 days ago...

I was playing around with some artwork on my computer, when all of a sudden, everything looked as if I was looking at a defective computer monitor.  Physically, I had one eye attempting to move inward to converge the image with the other eye, and then the muscles would completely relax, and it would do it again.  This was happening at a frequency of 10 times per second.  The result looked like a computer monitor with an image that was shifting back and forth very quickly - a flicker like effect.

It wasn't just my view of the monitor, but every time I tried to focus close range, my vision would do this.  The next thing that happened was my concentration just turned to mush.  I couldn't even remember the name of this dreaded disease.

What did I do?

I sat back and closed my eyes so the muscles could get some wrest.

Last night I was kneeling down when the muscles that erect the spine just said, "Nope.  Not doing this," and I slumped over.  But, within a second, the strength was back enough to straighten my back.

So, when people ask if I'm doing photography still, this is why I am not.  I have zero control over when a muscle is going to paralyze.  If I'm holding a camera, and it's not strapped around my neck, I could easily drop it if my arm or finger muscles gave out.  Doing retouching would take forever because I have to rest my vision often.  Plus, I've lost much of my attention to detail as a result.

Yeah, I play around on my computer creating stuff that I find fun.  It can take me days, weeks, or months to get an image to where I'm ready to show it to someone.  The difference is, what I'm doing now is relaxing.  Doing something under a time commitment for a client is stressful.  Stress triggers MG symptoms.  If I'm doing it for myself and someone notices a serious error, big deal.  If I'm doing it for pay and a deliver a product to the client with a serious error, it is REALLY a BIG DEAL.  

I am brokenhearted that this has impacted my passion for photography.  I often think of the camera bag of equipment I'm holding on to for that "good day" when I feel like I can take a few photos.  This makes me wonder why I'm holding on to it, but a guy has to be able to dream.

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