Happy Birthday to You!

During the summer of 2004, I was feeling pretty confident that I probably had not inherited the HD gene from my father.  With several jobs to balance, including a full-time teaching position that I loved, and several singing gigs, I had faith in my own abilities and gifts.  The occasion of my daughter’s twenty-first birthday seemed like the perfect time to have the DNA test, so that I could share a clean genetic future with my family.  It was my intention to do it on my own, so that I could surprise my family with the good news.

Because I had already been following several HD-related online groups, I knew that it was important to “get our ducks in a row” before testing.  An insurance agent came to the school where I worked then. I purchased as much insurance as I could at the time, including long-term disability, an extra-large life insurance policy, and whatever the agent recommended.  It didn’t leave much in my paycheck, but I was planning on dropping most of the insurance when I tested negative for HD. 

 

I made an appointment with a neurologist at Rush, who was well-known in HD circles.  When I came alone, she and the psychologist who interviewed me were curious as to why I didn't bring a family member, as that is their protocol.  I said that I might just have the "results put on hold" for a while.  At the end of my appointment with them, they sent me to a genetic counselor to have my blood drawn.  After the appointment, for which I paid almost $2,000 in cash, I started planning the presentation I wanted to make at my daughter's birthday party…

Those were very busy days, and before I knew it, it was time for my results.  My job was close to Rush, so I planned on working before and after I got the word.  When I got there, the doctor and the psychologist greeted me, then said, "Last time you were here, you said you might like to put the results on hold.  Do you still feel that way?"  

Of course, I knew then that the answer was "positive" for HD. That knowledge really took my breath away for a while.  I did go back to work, but it was difficult that day.