I know this road. I’ve been here before. Some of the twists, the turns, and the road signs are different, but I know where I am. Hell. This is hell, and I know that we’re not even at the worst part yet. Challenge on top challenge, and I’m already exhausted– raw and wounded. And we are walking on eggshells.
I will never be able to make it right. I don’t have Huntington’s; you do. As we have watched our grandmother, then our aunt and then our mother get sick and die, we have inevitably experienced it from very different places. There but for the grace of… a few genetic markers– go I, go my children. Do you know that this keeps me awake at night? Do you know that I cry–unsure whether I wish it had been me, or whether I can be grateful it wasn’t. Is there room for gratitude in this? Along with the anger, the sadness, the torment…
Strong women, all of the women in my family who have been taken and yet each having struggled with their own challenges in life, and then dealt the cruelest possible hand. Unbearable to watch, but that has been my role from the start. Watch, watch, watching– it’s unbearable, but there is no option but to bear. Bear witness. Bear up. Bear with it. Bear the unbearable.
But this twisted road is as horrible as I remember. Memories of having done this with mom flood back and paralyze me. Those early days when I constantly asked: What is Huntington’s and what is her? Is this alcohol or is this HD? Can we work on issues that have made things so hard through the years or does the Huntington’s block our way. I remember the surrender with Mom. So many years wishing I could finally make her hear me, make her understand what I feel, what I need. It all just evaporated, in the realization that she was no longer available– no longer up to the task. No longer accountable. Life ‘aint fair baby; that’s for damned sure!
Do you hate me for being well? Do you hate me for that genetic twist? If you could, would you switch places? Would I switch places with you, if I could make it all better.
But we can’t make it all better; there’s no going back. If we both had dodged this bullet, would things be different now or would we still be struggling to find common ground? Will you always find me bossy? Will you always think I’m judging you– even when I’m not? Do we even know each other? I don’t think so. As much as you hate me telling you what to do, “bossing you” around, judging you– you hold me there, assuming I will always be the big sister I once was, rather than the sister I want to be now. We are both stuck in our patterns, permanently held here now by this diagnosis and all it means.
But, I love you. I carry the guilt of not being able to stop this freight train of loss. I long to make it all go away; I can’t. I have failed you, in my own mind– no matter what I know the truth to be. I miss all that we have lost already and all that will still strangle us. No silver linings for us. Just a wild scary ride we can’t stop. Terrifying.
I am watching you leave me– watching you disappear, and still searching for you in the shadows. I find myself grabbing for any sign of solid ground. I dream of the past and we are all whole again, fighting the old fights instead of the twisted, poisoned fight we are left with. Now, we walk on eggshells… all of the time, feeling them crackle and crunch in our fractured world. Eggshells, everywhere.