This is the story of how my parents came to know what Huntington’s Disease was… An end to many years of secrecy in our family.
When my mom married my dad in 1979, there was one ” taboo” issue…that unknown to my mom or my dad, there were lots of hidden facts and mis-told “truths” about his family. At that point, what my parents knew or had been told about my dad’s biological father was that he had died in a bad house fire in January 1972. The cause of death listed on the death certificate was listed as “asphyxiation”, and it continues to state, ” inhalation of smoke and carbon monoxide, due to house burning”. We had been told that he was in a hospital at the time of his death, and he had been out on “pass” visiting his friends. We were told the night he visited his friends, the rest of the group left to continue the party elsewhere , leaving my dad’s biological father alone so he could rest on the the couch. While my dad’s father slept on the couch, a trash can fire some how started in the kitchen and quickly spread through the small 750sq.ft. house, burning more than 90% of the structure to the ground. What they had been told by the authorities that the couch my dad’s biological father had been sleeping on was burnt and destroyed in the fire, and that they had found my dad’s biological father’s body in the the shower, where he had apparently sought refuge from the flames. He didn’t call the authorities to report the fire, but instead ran to the bathroom to escape it . We know this because it was a neighbor who had called the fire in to 911. At the time, the assumption was given and allowed to perpetuate that he was intoxicated and not thinking clearly; and that he must have been smoking a cigarette and somehow started the fire. It would be much later before we knew all of the facts of the situation.
One of the other things that my mom and dad were told about his biological father was that, when he was a child, for whatever reason, he was “abandoned” by his mother and raised by her parents for the majority of his young life; and that his grandmother went “crazy” later in life and needed a chain link fence put up around her house to keep her from wandering the town. Later, we would find out that the reason they were trying to keep her home bound was because she would wander the neighborhood in either her knickers or even less. The other thing we knew for a fact was that, before my dad’s biological parents got married, that his father had been previously married and had a daughter before getting divorced. We also knew that, after having a few children with my dad’s mom, unfortunately their marriage didn’t last, and they divorced when my dad was a kid. His father married and divorced for a 3rd time also; so it is unknown and possible that he has more children out there. This was all the information, along with old black in white photographs, that my mom had access to when she married my dad; because, when they met, my dad’s biological father had already passed away.
In the early 1990’s, my dad’s full sister started acting weird at family gatherings. My mom asked my dad if she thought my aunt was a alcoholic, or perhaps abusing prescription drugs. My dad insisted that my mom was wrong, but did admit that he was seeing the same oddities in behavior in his sister that my mom was seeing. The next time we had a family gathering, my dad spoke to my my aunt and she very defensively said she wasn’t and would never take drugs and that she was not a drunk. After that, my aunt and her husband avoided family gatherings for a few years. She did call every few months; she always wanted to know how we were doing, but never offered any personal information about what was going on in her and my uncles’s lives. As time passed on, with each call, she would become more confused; slower in speech and thought. As time progressed, my mom and dad, along with the rest of the family, were convinced she was hiding something.
In March, 1993, my dad’s mom, my grandma, passed away from pancreatic cancer. Before my grandma died, she requested we all visit her so she could tell us how mush she loved us. My parents brought us over many times to spend time with my grandma in her last few months, but I was the only one out of my siblings that knew she’d been given a terminal diagnosis. She had each one of us come in and sit with her so she could tell us things she wanted to make sure were fresh in our hearts and minds when she couldn’t be here anymore. Although I can only attest to the conversations she had with me, we thought that the same reasons existed for the rest of the family as well. After my grandma passed away, there was a large family gathering to honor her life through a wake. We assumed the somber mood was par for the situation; that the stilted and abrupt conversations were from grief and morning; but we later would find out that, with a few people in the family, my grandma had left them with more than a goodbye and an I love you. For example, she gave me a patch work patterned purse. She told me she was sorry that she wouldn’t be there in the future, but it didn’t change her love for me and the amount of pride she felt for me. We assumed that she had similar good byes with the rest of the family; but it would be a couple of years before my mom and dad understood the significance of the conversations my grandmother had with other family members.
In the meantime, later that year, my aunt and uncle contacted my mom and dad and wanted to have a family meeting with her full siblings to ask them what they remembered of their father, their mother, and their dad’s family to see if they knew any family history of illnesses that she didn’t know of… There was nothing my parents could offer that my aunt didn’t already know. They told us that the doctors thought something was wrong with her, but had not been able to find a cause; so now they were turning to a list of possible genetic illnesses. We told them we would pray for them; and, when they left, we told them to come visit again. What I didn’t have a physical explanation for, or the words of wisdom to explain or describe was what I saw in my aunt’s eyes… her large, normally beautiful eyes … darting around, looking over in random directions; combined with random little up , down and sometimes back nods of her chin. Sadly, what we also didn’t know was that the stress of the disease would tear apart their marriage before either of them had a chance to know or to fight the disease with the knowledge of what it was.
My uncle was a great man; he stood by my aunt when I can only imagine from the perspective of my experience with my own mental, physical , cognitive and neurological symptoms, that living without any knowledge of Huntington’s Disease was a living hell. A daily battle of not knowing if it was going to be a good day or a bad. The strength it takes to stand there and have the person you love unable to communicate the love they had with you, knowing that slowly, with time, the bad days will become more and more frequent. I have thrown things, broken things, stabbed things, and attacked things and people; not only physically, but also and sometimes even worse, with verbal and emotional abuse against myself and the people in my life. And, unfortunately, the people I am closest to, ie my mom and my husband, receive the brunt of my dysfunction. This information I offer with the added fact that I am on meds, many meds, to help keep as many good days in my future as I can. Unfortunately for my aunt and uncle, they had no proactive treatment for the symptoms of my aunt, because they had no idea there was a possible family history of Huntington’s Disease.
Later in the year, when the holiday season was ringing with cheer, we gathered for our annual Thanksgiving festivities . After dinner, the men and boys went to the t.v. to watch football, while the women started the first round of dishes. After the dishes were started, my other aunt, the oldest of their sibling group, asked her sister’s husband if they could talk for a minute. They were gone for a little while, and when they returned, we could see that my uncle was visibably shaken. My aunt and uncle left after making quick good- byes. I know that my eldest aunt had a reason for her talk with my uncle. My uncle and aunt were already fighting the depression, o.c.d, hateful verbal anger outbursts, insecure irrational behavior and other things my aunt was experiencing that resulted in her spending the day yelling at, belittling, and accusing my uncle of not caring for her. When his wife’s big sister sat him down to say that she didn’t know if the doctors he had chosen were going down the right path in treating his wife, what my uncle heard was that he was not taking good enough care of her. He assumed that his wife had told her sister about their earlier fights, and was not in the mood to get a second dose of having his flaws pointed out.
We don’t know for sure if she told him about the Huntington’s Disease she had learned from her mom on her deathbed on that day, or if it was much later. We don’t know if my uncle now knew of the HD, researched the marker test, and knew there wasn’t enough biological family left alive to do it, or if my aunt told him the whole truth much later. What we do know is that his wife had the blood test in late 1995, almost as soon as it became publicly available, and he called my mom in March of 1996 to tell her she needed to look into the test for my dad. He told her he had watched her struggle with my dad’s inexplicable bad behavior Thanksgiving of 1995, and that, because my aunt turned up positive for the genetic flaw, my dad had a 50% chance of having it, too. All the crazy and hurtful things my dad had been doing were the exact same reasons my aunt and uncle’s marriage had failed. My mom was convinced by the end of the conversation that my dad had Huntington’s Disease. The long process that resulted in my dad’s ultimate diagnosis in August of 1996 was, for my mom and dad, just a frustrating and expensive formality. My mom’s anger at my dad’s family was probably, in part, a result of her anger at the disease; but she was also angry at the secret.
it is easy to see, in retrospect, that Huntington’s Disease was the contributing cause of my dad’s great-grandmother’s, and his father’s, deaths; and possibly a contributing factor as to why his grandmother abandoned her son.
Because of the secret and the way the information was passed on, my mom found herself with three at-risk children ranging from preteen age to teenagers. From the first minute my parents were told of my aunts correct positive Huntington’s Disease diagnosis , they told us children of the impact it meant for our father and our uncle both being at-risk for HD; and also the fact that if either of them were to test positive, that any children they had would also have a 50% chance of inheriting the mutated gene. My mom believed that there is only one time for secrecy with Huntionton’s Disease, and that was right before my dad tested. She contacted their insurance companies, and they beefed up all of their life and health insurance policies. They told the truth on all applications, and were turned down for only the nursing home policy. They also bought life insurance policies for us kids, with the option for doubling the benefit twice as we age, regardless of health. My mom says that now the insurance industry has laws that are being made to stop genetic discrimination in some forms of insurance, but it is still better for an at- risk person to make sure their insurance is as good as possible before beginning any treatment, taking any medication, or being tested. When my parents did receive my dad’s results, they sat us down around the kitchen table to talk about it. They told us that it would only be by stopping the secrecy that this disease can be stopped. It is only by open and honest communication about HD that society can begin to understand and accept the victims of this disease.
After my dad received his positive HD results, my uncle decided he did want to pursue being tested. During the interview process, my uncle was turned down for the ability to be tested because the doctors said that he would not be able to cope with his results. My uncle desperately wanted to test positive; he felt that he had been the one who had run away and lived a crazy life, filled with drugs, sex, and rock-n-roll; and he felt he should be the one who would get the disease. My uncle had behavior and made choices in his life that did make people wonder if he had HD; but as time passed on, his issues got resolved and he never got worse, except from other health conditions that resulted from his former bad choices. When my uncle died, we had him tested for Huntington’s Disease. The reason we had him tested was not to satisfy our own curiosity, but because we knew he had at least one child that we were not allowed to talk about and who we never met or saw. Thank God my uncle’s results were negative; otherwise, we would have moved heaven and earth to find his offspring.
As a result of all of this, I began my quest to be tested at the tender age of 16. But that is a whole other story – to be continued…