Six: The Descent

I reluctantly began this story several weeks ago here due to the urging of others. It is difficult because it is personal, and I have always guarded such things. If we met on the street today and you asked me how I was doing I would say “Pretty good” or “Fine, thanks.”

I continue the tale with the hope that it might be helpful to someone.

The next part of the story may seem incredulous. Let me frame it this way:

Have you ever gone for a time, say six months, and one day tried to put on a pair of jeans only to discover that they are too tight? You ask yourself, “Have I put on some weight?” You step on the scales and find that you have gained ten pounds. Your first thought is “How did that happen?”

The answer is gradually. My progression into chronic illness was the same.

In the weeks following hospitalization, I experienced some tingling and numbness in my feet. I began to stumble a little, and my gait became unsteady. Walking up or down stairs and on uneven surfaces became challenging. I would lose my balance but “catch” myself on a wall or a chair. It was not a matter of vertigo or “light headedness.”  It was strictly mechanical. It was hard to walk a straight line.

I also lost a lot of weight. Most of it was muscle. The clothes in my closet (my sizes had not changed since my twenties) were now way too large. Clown clothes.

I rationalized that these two conditions were linked. I was simply “out-of-shape.” Muscle atrophy from inactivity had affected my mobility, and I could get back to normal with disciplined exercise. I started lifting weights and felt better immediately, but after a few workouts I experienced complete fatigue. Though it was difficult to get out of bed, I had responsibilities — my family, my church, and my employer. I stopped and re-started the workouts several times, but the results were always the same.

Sometime later the Redhead and I were watching television one evening. She asked, “Why do you keep rubbing your hands?” I realized they too were numb. I really had not noticed before that moment because of the issues with my feet.

The numbness gradually worsened. Both hands and feet were numb during the day and throbbed at night. The Redhead told me I was “moaning” in my sleep.

Still, I let some time go by. Surely all this was simply connected to the Specialist’s “post viral syndrome” diagnosis.

Then I began to experience something the medical community calls “brain fog.” I lost track of things. Wallet. Phone. Keys. Forgot the names of people I had known for a long time. Stopped in mid-sentence because I could not remember a word.

I finally started to worry. I had waited long enough, and I had to find another doctor soon.

Thus began my search for answers in the modern medical system. It would drag on for over a year.