When I started this blog, I thought I’d be posting all the time. Because, Huntington’s is on my mind– All. The. Time. However, it’s been the opposite. I seem to avoid these pages for that very reason. I can hardly bear to express the thoughts that come to me, day in and day out, about this horrible disease. It’s so hard to put in writing, all the things that play out in my head. All. The. Time.
My sister’s HD is clearly getting worse, and impacting other areas of her life. That in turn impacts all of us; it impacts me. We had a real scare with her this past weekend, the details of which I will leave out, for her privacy. However, it was awful– absolutely horrible. And as I sat with my husband, Smart Guy, playing out all the possible things that might happen, the thing that hit me square in the face, and left me reeling all over again, was the horrific reality that she has Huntington’s Disease, that her illness is active and symptomatic… and I know too well where this ride ends.
I’ve always had a love-hate relationship with roller coasters. I ride them because my friends, or my kids sucker me into it. I love Space Mountain, at Disney. I occasionally get on a roller coaster, and after my initial fear, enjoy the thrill. But, the part I have never enjoyed, the part that truly terrifies me, is that moment when you are going up, up, up– slowly, clack, clack, clack. At that peak the car usually pauses; and for that millisecond I can see everything around me– the view from the top is always so beautiful! But just as I take in that view, and want to linger, the car drops. My stomach drops; my inner organs fly against their cavity; my brain seizes, and I scream. That is where I’ve been living with sister’s diagnosis for several years now: poised at the top, able to see all that will come, but able to still enjoy the positive moments together and the fun we can still sometimes enjoy, yet knowing it will all drop… any minute. Sitting in a restaurant this past Saturday, worrying about my sister, trying to talk rationally with my husband about it, I felt exactly like I do on a roller coaster. I felt like I was dropping, and everything was flying at me… and I couldn’t scream. I had to hold it together, and make-believe it was ok.
It’s not. It’s not ok. Nothing about any of a life with Huntington’s Disease is ok, in my book. My sister is able to attend HD walks and conferences; she has made friends with others who have HD; she throws herself into the whole scene. I can’t. It’s enough for me to face my own family’s struggle, my own family’s loss, my own family’s grief. It’s enough to choke on. Bearing witness to others’ suffering is an additional step, which I struggle with. I go to an HD event with good intentions, and leave feeling overwhelmed and lost. All those faces of HD; all those families facing this awful death sentence; it’s too much for me to handle. Even typing that, I feel such guilt. Who am I to say it’s too much to handle, when I only have to handle the witnessing?
Sitting at dinner this weekend, faced with the reality (a reality that continues to ambush me, over and over again) of my sister’s future, I was completely overwhelmed with grief. I looked around the restaurant, recognizing several diners, and I wanted to be sick. I wanted to hide. I felt totally naked and vulnerable, in front of everyone. I knew that my eyes were wide and terrified, as the reality hit me again, and worrying about my sister. Tears kept pushing to the surface, even as I tried to discreetly wipe them away, and push terrible thoughts out of my head. It was nearly impossible. As the realization that I am headed down the same horrible path that I’ve already traveled with three other women sucker punched me once again, I felt myself flying down that roller coaster hill all over again. I panic. How can I bear this loss again? Frankly, it’s unimaginable. I know I will have to do it, but it’s so hard to conceive of facing this loss yet again. My grandmother (75), my aunt (49), my mother (68), and now my sister. She is currently 45; how long do we have left together? We’ve already begun losing each other.
Alcoholism is the icing on this poisoned cake. It’s prevalent amongst HD sufferers. In my family, three out of four of the people I have loved and have lost or am losing to HD were/are alcoholics. Cherry on the icing: suicide is the leading cause of death. Is it any wonder? Anyone who would stand in judgement of those facts, hasn’t seen HD up close… and personal. It is personal. It takes away so much, and leaves so little to hang on to. So, is it any wonder that people with the disease want to numb that reality? Is it anything less than predictable that drinking might become a crutch? However, that adds a whole other layer of pain to this equation. While I can’t blame my sister or my aunt and mother for wanting to numb the reality of what they face(d); alcoholism only adds to the enormity of this loss. I feel guilty when I am angry, knowing that I am spared living that experience– but I resent losing them twice. Losing them to the disease and to the alcohol. I feel so angry.
I FEEL SO ANGRY! I FEEL SO HELPLESS! I FEEL SO LOST!
How much time do we have left together, and what will that time look like? Those questions run through my head on any given day. I’m fighting two impossible opponents, to hold onto whatever I have left with my sister. The battle is exhausting. It leaves my emotions tied in endless knots, and discarded on the side. Who do I call? Who do I confide in? My family is broken and fragile, in the shadow of this disease. Discussions are booby-trapped with fear, grief, denial, addiction, fragile hope, recriminations, guilt, blame– on all sides. One false move and things can fall to pieces. How can I be angry with your drinking, when you have so much to face? How can you forgive me for not really getting it? How can you forgive me for not having HD? How can I expect you to understand how I feel, having dodged that bullet?
I will never feel fully thankful that I am (physically) safe from HD, given the cost. We all tiptoe around the field, afraid to blow each other up. On days like this past Saturday, this battle– all of it, feels so hopeless.
Hit the Mute button. Check out this ride on a roller coaster. BUT, imagine knowing that the car was going to crash. Eventually.