My Illness

Post #2 ~ A Bit of the Back Story

me kathy a cousin bros bobby billy

Me, sis Kathy, a cousin, brothers Bobby and Billy

Here is some interesting trivia:

There are over 7 billion people on the planet. Of the 10 to 20 million people in the world thought to have HTLV-1, this means between 100,000 and 800,000 people who are affected by this will go on to develop HAM/TSP (Tropical Spastic Paraparesis).

So, I calculated this:

  • 800,000 is 4% of 20 million out of 7 billion people
  • 400,000 is 4% of 10 million

In other words, you can be a carrier of the virus and never experience any symptoms. I saw a leading virologist at Johns Hopkins in 1997. I had already known that both my parents carried a particularRh factor. Their doctor told them not to have children.

The Rhythm system failed my parents. Mom gave birth to four of us.

My body exhibited hints of each symptom from the onset. My virologist said bad luck and an inherited gene contributed to the rapid exacerbation.

However, it’s a blessing. I’m lucky that’s all that happened to me. My captors could have easily killed and disposed of me, or I might have overdosed from drugs, died from cutting my wrists, or contracted AIDS as well.

Instead, I lived and since this disease is so rare, people remember me, especially those in the medical field. It helps me maintain and develop relationships. It sets me apart from a limited pack. (Of course, there are many other rare diseases in the world).

Still, my goodness, what are the odds?

Beyond that, I’m the eldest child, born in 1951 – my brother, Bobby, 1952 – my brother, Billy, 1959 – and my baby sister, Kathy, born in 1960 – all are dead.

Bobby died at the age of 41 in 1993 from complication of AIDS and cancer. Billy died in his sleep, at the age of 46, in May 2005 from heart failure. My precious sister, Kathy, died peacefully in her sleep at the age of 52, November 2014, after a long and painful battle with Stage 4 lung cancer. They all suffered immensely from various conditions prior to their deaths.

Poor Dad and Mom, both long gone, suffered losing child after child. But, my world would not have been complete without my siblings. I’m thankful for the time we had together.

“Mystery creates wonder and wonder is the basis of man’s desire to understand.” Neil Armstrong

“God asks no man whether he will accept life. That is not the choice. You must accept it. The only choice is how.” Henry Ward 

Categories: My Illness

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