Mystery

I am currently trying to solve a mystery.

Years ago, I was fit and strong. I worked as a deckhand and had plans to move to Florida for the winter season to gain experience, planning to go to a merchant mariner's college in order to become an ore boat captain. This dream conflicted with my other dream of attending university in Scotland, but I enjoyed the fresh air and the days at sea more than any other job I'd held before.

Then I met my birthmother's stepfather. This was the first time that I had any contact with anyone in my birth family. He asked if there had been any problems with my muscles over the years; being one of the strongest people I've known, I scoffed at the very idea! My muscles, my strength, and my uncanny flexibility had been my pride and joy - the source of my personality and its driving force.

He told me that my birthmother, and indeed most of my birthfamily, had myotonic muscular dystrophy. It generally came on in the person's mid-to-late 20's, and from there was unstoppable, no matter how often the person with the disease worked out. Over the years I'd had certain health problems but never thought they might be related to each other - and it turned out that every one of them was a symptom of muscular dystrophy.

I walked the streets that evening in a daze. It took a few more years before I was tested, and I was the only person in the entire family who did not have it. However, this left the mystery of what was wrong with me, as I had further complications. For example, my hips and shoulders continually started dislocating, which was incredibly painful and kept me from some of my favourite activities, such as weightlifting and bellydancing.

I discovered a disease called Ehlers-Danlos Syndrome, which seems to explain many of my difficulties. It is a connective tissue disorder with frequent dislocation/subluxation of the joints, marked by extreme flexibility, velvety skin, and occasionally skin that stretches. Because I was very thin and strong for most of my life, it would not have been noticable when I was young, but as I age and continue to develop problems, the loss of muscle mass means that I am losing anything that holds my bones and joints together.

Now, years later, my birth mother has three months to live, as my brother told me a few days ago. I have gained weight and lost muscle definition, missed so many opportunities with bellydance and with other activities I loved. Aside from being broke, these issues have kept me from everything I want to do - it is difficult to work out when it is almost impossible to walk because of hip subluxation.

All I know is that I hope this is the answer to the mystery that has kept me somewhat disabled for several years. I would like to return to the things I love, and to find out the reason for these problems. I know it took my father years to find a doctor who would diagnose him with Lyme's Disease; I only hope my wait will not be as long.