When you come to awareness of the risk of Huntington’s Disease a bit later in life, the Birthday business takes on new meaning and import. Huntington’s was not a fact of my life until I stared down its most obvious symptoms as they manifested in my older sister. She was 41 at the time and I was 38. I played a numbers game with the next few years, our next few birthdays. Each time she added another candle to her cake, I was subtracting instead, watching her closely as she waved the cutting knife unsteadily and listening to her faltered speech patterns as she told how, just last night, her cat had peed in the fruit bowl on her kitchen table. Three years from now, THAT would be me. Only, as bad as I am at math, this never did add up.
The ‘three year’ birthday game worked only the first time I took mental notes around Deb’s celebration. I was ‘okay’, symptom-free, but it was entirely possible that I was looking into the future, mine three birthdays down the road. The following year however, as Deb turned 42 and I was 39, her symptoms were more pronounced while mine were still absent...oh well at least, outside the moments of HD paranoia that come with almost tripping over an untied shoelace. Birthdays became secret, double celebrations for me. While friends were lamenting over 40th birthdays and ‘getting old’, I was cheering because 40 meant I had come 3 years beyond that original discovery that I was at-risk or a potential ticking genetic time bomb.
I did delve into more scientific research and articles regarding onset age for HD symptoms. In fact, I read volumes of medical abstracts, journal articles, whatever I could find, in those early days of ‘Being At-Risk’. I contacted HDSA and began with the literature offered on the website and then turned to footnotes in some of those for other source material, and so on. I was searching for information to help my sister, hope that I could offer regarding breakthroughs in treatment and care. I was also searching selfishly, for information correlating age of onset within families, or when the gene is passed from one gender parent or the other. I found...okay, well first I found that I could understand the medical abstracts and scientific jargon. Now, if that isn’t proof that I am HD-negative.... I told myself at the time. I zeroed in on studies or articles that postulated that when HD is passed paternally, from father to child, the age of symptom onset is typically earlier.
The new math for me was tracing back to when I thought my father might have become symptomatic. I estimated mid to late-30’s (to be generous because his behavior was erratic and he had other problems long before). My sister was definitely in her late 30’s when the symptoms began.
My evidence was a strange phone conversation with her, back in 1991, just before we stopped speaking for three years. Deb told me that her son’s hamster drove her crazy at night because he exercised on his squeaky wheel inside his cage and woke her up. She told me that the other night she had taken the hamster from the cage in the early morning hours, and was so mad at its squeaking that she threw it against the wall and killed it. Now, is that Huntington’s enough for you? With the new math, I had a father and a sister, both with early symptoms at an age that I was rapidly swooping past.
Happy birthday. (Quick footnote: Um, the paternal transmission thing doesn’t work for my father; I later learned that he inherited the gene from his mother).
I no longer play the birthday game or look for hard and fast scientific fact that would place me out of the ‘At-Risk’ category and into the zone of safe, if I make it past a certain again and am a symptomatic. I have read too much, heard too much anectdotal evidence to know anything other than that this ‘game’ has no hard and fast rules and that, therefore, I achieve ‘status certain’ only through testing. On the other hand, the odds that I will have HD decrease for me with the passage of time. Thus, I was pleased to reach 45 and pleased as I approach the age of 48 without any ‘signs’.
Oddly enough, while I am cheering and also being cheered by others in the HD community, for continuing to advance in my middle-years of age, I find a whole different message in the world at large.
Yesterday I answered a phone call from a collection agency. Because the debt in question stems from a defaulted account that was charged off in 1991, I foolishly engaged in conversation with the representative. After explaining that the debt was charged off and, after 7 years disappeared from my credit report, the girl insisted I was wrong and that once her agency purchased the account, it again became current. She wanted to know when I was going to send a payment and I simply told the truth, that it was not high priority and that I could not right now even if I desired because I am not currently employed. The girl wanted to know all sorts of things then? How long had I been unemployed? How did I live if I don’t have an income?
Then the collection agent hit me with it. She had my file, I guess because she said, “You are gonna be 48 soon, right? How can you be 48 years old and not have a job to pay your bills? You’re a grown woman aren’t you?” I opened my mouth, foolishly once again and spilled out the information that I was going to school, training for a job where I would have a good income. “48 years old? And you’re going to school? That’s the most pathetic thing I’ve ever heard. Look, I’m 19 and I’ve got this job and you wouldn’t never see me not working or paying my bills. What’s wrong with a 48 year old woman who has to go to school, has no job, can’t ...”
I ended the call at that point and went back to what I had been doing before the phone rang, rolling pennies so I could go buy milk and siphoning gas from the lawnmower into the car in order to drive to the store for it.
Seriously, I did not think about the call much once my anger subsided (and it does that quickly). Later however, I was going over my school schedule. I need to change some of my classes to accommodate the schedules of my kids. I am still taking the 4 I need this semester which, along with the two I take next while doing my student teaching, will earn me my teaching credential in Special Education. And, the reason I can say that I answered honestly regarding my employment status with the collection rep, is that I work as a substitute teacher during the school year and we are now on summer break. As I began thinking, the words of that girl came back like a stinging blow. I am 48, going to school to START a career in teaching and I am pathetic. Why would anyone hire a new teacher who is so near retirement age? The more I thought, the sorrier I felt for myself until the tears started to roll. I am just a silly OLD woman.
The reason I bring this up at all, goes back to my birthday games and how it means so much in one world to let those years accumulate, to pass gracefully and in good health from one decade to the next. Age is a source of hope and pride.
I am a silly ‘old’ woman perhaps, but truth be told a solid number of my fellow students in the teaching program and mid-life career changers. They are men and women, my age and older, who have worked in various occupations and fields. I am silly only because I allowed the idea to seep into my head, that I was too old and that it was ridiculous for me to pursue a new dream.
Birthdays are wonderful, especially as we collect them over time. I still consider that each might be taking me one year closer to certainty over my genetic fate. More importantly, for me, is the gift of time and that, no matter the outcome of my ‘At-Risk’ status, in the long run what matters is how I use the gift of these years, how I spend my time.