The Road Not Taken

"The Road Not Taken," by Robert Frost, was one of my father's favorite poems:

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth;

Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same,

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I—

I took the one less traveled by,

And that has made all the difference.

My dad's only sibling died as a child, so we grew up with a very small family. I don't think he ever acknowledged that his father had HD, because denial is one of the most common ways of coping with the disease. Some of Dad's aunts and uncles, and one first cousin had it at that time, too, and I don't think he really admitted that, either.  

At that time, in the eighties and early nineties, having the knowledge wasn't necessarily beneficial, since the gene hadn't really been discovered yet, and any thoughts of cure were a lifetime away. When the gene was discovered in 1993, our whole family tried to persuade him to be tested, but he refused. The possibility of genetic testing opened wide new roads for those who sought the truth; it was still very possible to hide from the truth if that is the road chosen.

My dad died in 1998, without admitting that he had HD, even though it was obvious to all of us.  He died alone in his house in Beloit, Wisconsin, and his body was found by my brother a few days later. We decided to have a DNA sample taken posthumously, and I brought it to our pediatrician, who requested the test on Dad's blood sample. It was the same doctor who delivered the news to me some time later: my dad had Huntington's Disease, with a CAG count of 42. (That is the count of abnormal repeats within the DNA).

Coming out of the Closet

This is my first attempt at blogging for Huntington's Disease, so what I'm writing is kind of a test.

My name is Judy, and I am in the early/middle stages of HD.  I am 58 years old, with a CAG count of 42.  I was tested in 2004.  Two months ago, I was approved for disability, and I was fortunate that the new, quicker time frame has already begun.  It only took a total of 3 months to get approval, thanks to all who lobbied for HD becoming a Compassionate Allowance Disease.

Like many who find themselves in the peculiar place of having "come out of the closet," but hopefully able to communicate in a variety of ways, I started a blog!  I also joined several HD related Facebook groups, and I've really been enjoying catching up with the others who are out there fighting!  Writing really isn't my forte -- I am a classically trained singer, so I'm trying to find a musical way to make a contribution.

I've been involved in clinical studies at Iowa, where I have been doing the PREDICT HD annual visit for 5 years.  Prior to that, I participated in the Celexa study, also in Iowa, and have spent alot of time speaking with the "experts" about HD.  I really do feel that the cure is right around the corner (even though I have been saying it for years!).

I remember an uncle of mine who had HD, and 20 years ago he was regaling me with stories of all the research that was being done, and drug developments.  Of course, at the time, I didn't take him seriously.  Now, I hope that my relatives and friends will understand that this time it really is true:  the cure is right around the corner!  Like many of you, I hope to be one of the first to test the new treatments, whatever they may be!