Wonderful 18 Years
It has been a wonderful 18 years. I opened my studio in Pittsburg, California, in 2000. In 2001, Elizabethe and I moved into a new home with a dedicated studio on the 2nd story. A few years later, we found ourselves moving to Palmyra, New York.
The plan in Palmyra was to move into a brick-n-mortar building we had purchased downtown. We just had to wait for the existing leases to expire. However, an outbuilding on our property, just behind our house, proved to be a perfect location. My first year in business there outperformed my last year in California.
Then, 4 years ago yesterday, I was walking across the street with a friend. We had a walk-light, and we were in the crosswalk. A car ran a red light and struck both of us. I broke my leg and messed up my shoulder. My friend broke his arm and injured his neck.
My recovery was slow.
Illness Happens Too
I was working hard to rebuild my business. My plan was to re-invent myself in 2018. My goal was to become a premier Corel Painter artist.
The year started with a 10-day trip to Israel (my 3rd trip). On the trip, one of my traveling companions came down with the flu. (His wife and children had it before the trip. He didn’t pick it up in Israel.)
A few days after getting home, both Elizabethe and I caught the flu. We were down for FIVE WEEKS. It was the sickest I have ever been short of when I had pneumonia in 1987.
We recovered enough at the end of the 5 weeks that we were able to attend our daughter’s wedding. At the end of our visit, my knee started to ache. It was the same leg I broke and thought it was related to the accident.
Upon returning home I went to the orthopedic surgeon. He diagnosed me as having a sepsis infection in my right knee bursis. He wrote a prescription for antibiotics and sent me home.
Thinking I was having a slow recovery from the flu and infection, I wrote off my fatigue as recovery. This went on for months.
In June my wife finally convinced me to see the doctor. After 28 blood tests and several visits, plus a visit to an ENT specialist, I was able to see a neurologist. A friend pulled a few strings to get me in early. She was fearing I might have a brain tumor or other very serious problem.
The neurologist did tests which involved zapping me and poking me with electrified needles. He also had me walk and did the usual strength tests. At the end of all this, he concluded I probably don’t have ALS (which is what I was thinking I had, but I didn’t tell him that). He also said he didn’t think I have MS or Parkinson’s.
His diagnosis was myasthenia gravis. The Latin translates to Serious Muscle Weakness. It’s a rare, incurable disease. The symptoms can be treated, but the underlying diseases will be with me the rest of my life.
Decision to Close My Busines
The decision to close my business came after a period of denial about my diagnosis. I finally realized I can’t do business not knowing if I will have the strength when I have an appointment. It was a very disheartening decision, but one I now know is the right decision.
Myasthenia gravis is also known as the snowflake disease. They call it snowflake because like snowflakes, everyone is different. The underlying cause is the same, but the symptoms can strike any voluntary muscle at any time. Thus, one person might have weakness in their back, another in their legs, while the most common one involves the eye muscles.
In my case it impacts my hands, right eyelids, left eye and swallowing daily. Next are my legs and lower back which get affected several times a week. Then, there are the random other muscles which tend to be a surprise.
Imagine going to open a container that you’ve opened a hundred times or more. As your fingers go to open the lid, you find it won’t open. The strange part is, it feels like it is stuck. The reality is you simply don’t have the strength to do it. This happens to me regularly with cans, bottles, plastic containers with snap-on lids and doors with push-bars.
It has also made me very clumsy. I seldom dropped stuff before MG. Now, I fumble stuff all the time. I have probably dropped and broken 3-4 dishes in the last month. Imagine what that would be like changing a camera lens! Since contracting this disease I’ve only used my camera a few times. It’s a constant worry if I will drop it.
I need more rest now, and the symptoms of this disease threaten the quality of work I can produce. It would destroy my business if I tried to stay open and began producing a lower quality image. I’d rather exit gracefully than be forced out because my work went downhill.
Medication helps, but it isn’t a cure. It helps by quelling the symptoms — sometimes. However, they are not without side effects. MG already makes me clumsy, but the prednisone I take makes me jittery.
Currently, I’ve been on the one medication for about two months and prednisone for a month. I met with the neurologist yesterday and told him what I’ve been doing to mitigate the effects of my disease. He could see I’m like a caged tiger wishing I could get out. He flat-out told me to, “Take it easy.”
The emotional side of me wants this to be something that goes into remission. The intellectual side of me knows that doesn’t happen. MG never goes into remission, you just learn what your limitations are and by so doing you are less likely to trigger muscle fatigue and paralyzation.
To me, the limit is 30 minutes of mildly strenuous physical activity, and 60 minutes of mild activity a day — or somewhere in between. For example, I can probably handle 30 minutes of mowing the lawn on my lawn tractor, or 30 minutes of harvesting stuff from the garden. 60 minutes would be driving to Wegman’s, spending about 30 minutes in the store, and then driving home. This means I really only get to do ONE thing a day that doesn’t involve laying down or sitting in my zero-gravity chair. Before medication, I would force myself to do these things, and then end up in bed for 2-4 days.
Medication doesn’t help with general stress either. MG symptoms are worsened by emotional stress. It’s hard to run a business and not get stressed from time to time.
One of the symptoms of MG is brain fog. While I’m a mathematical wizard, I find it difficult to even perform simple addition now. The brain fog isn’t constant. It can come and go quickly. It can stay for hours, or only last a few minutes. Brain fog opens you to making errors.
Every photographer I know has forgotten a setting during a photo shoot. We all make mistakes. The great Douglas Kirkland forgot to change the ISO on his light meter when photographing Marilyn Monroe. Imagine how it is with brain fog. The frequency of mistakes is multiplied.
It is for these reasons I am closing the business.