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.


About Dawn Quyle Landau

Mother, Writer, treasure hunter, aging red head, and sushi lover. This is my view on life, "Straight up, with a twist––" because life is too short to be subtle! Featured blogger for Huffington Post, and followed on Twitter by LeBron James– for reasons beyond my comprehension.
This entry was posted in Family, Genetic Disorder, Huntington's Disease, Loss and tagged , , , , . Bookmark the permalink.

31 Responses to Eggshells

  1. carol steele says:

    Eggshell….So true…During the time they need each other most they disappear more and more. My husband and 5 other of his 7 siblings have huntington’s disease. So very hard to watch! Thank you for sharing.

    • Carol, welcome to the Huntington’s Chronicles; I appreciate you reading and sharing your thoughts. I’m so sorry to hear about your husband and his siblings. What a very long, dark road that is for you and those who love them! I really do understand it. My sincerest well wishes in that journey.

  2. Reblogged this on TALES FROM THE MOTHERLAND and commented:

    I posted this on my other blog, The Huntington Chronicles, in September. It doesn’t get easier… just messier and harder.

  3. Daryl Madill says:

    You’ve captured the heartache and the struggle and despair. So sorry that you are having to face this. By shining a light, in the form of writing about it, I hope that it helps in some small measure.

  4. My heart goes out to you. You said it all.

  5. Amy Reese says:

    Dawn, my heart goes out to you. This must be so devastating from any angle, all angles. I hope that in this great time of need you can comfort each other. There are things we have no control over. Wishing for you strength and peace. Is this a new blog?

  6. So well said. Love the analogy. I didn’t realize you were managing two blogs, and Huff post too!

    • Thanks Lisa. I don’t write here very often– I intend to; I want to, but it’s so hard and painful to put words to what’s happening. Some days I don’t feel like I’m managing much of anything!

  7. artlover320 says:

    Beautiful, heartbreaking mortal poetry.

  8. jgroeber says:

    Such a beautifully honest post. I can’t help but believe that this will help people, to see the searching and uncertainty of such a horrible disease. And also, the certainty of your love for your sister.

    • Thanks so much Jen! I’m sorry I didn’t respond, but a couple of comments ended up in an obscure mailbox… arrgh. I really appreciate your kind words of support. It’s been a rough road… and will be for a long time to come. xox

  9. There is not much left to say…No matter how hard we hide, we are exposed to the pain like it is radiation, slowly disappearing under the weight of our own troubled minds. But, sometimes we are lucky enough or strong enough to fight through it all and brake fro the surface. Don’t give up, there is always a ray of sunshine shinning down on you.

  10. I’m so sorry to hear, that you’re going to have to see another member of your family suffer from Huntington’s. I hope for the best possible for all of you. Suzanne

  11. etomczyk says:

    Dawn, this is very powerful. Every time you write about Huntington’s, I am invited into a world where I acquire a greater understanding of the human journey as seen through your eyes. It boggles my mind how much we as humans are expected to deal with and overcome. Wishing you grace and even more courage in the days ahead.

    • Thanks so much Eleanor. It really does make a difference knowing that others are learning more about HD. I can’t lie, in the day to day… it feels very isolating and lonely. Thanks for your kind words.

  12. This is how I would define torture. I’m so sorry.

  13. Highly emotional and pulled me right into the feelings. Excellent!

  14. Oh The heavy burden you carry, Dawn. May you find the strength to crackle and crunch through your path. ( I’m sure you will) You and yours will be included in my prayers.

  15. Pingback: Three Steps Forward… | TALES FROM THE MOTHERLAND

  16. Pingback: I Flinch | The Huntington's Chronicles

  17. Pingback: Bringing My Father Back: A Father’s Day Love Story | TALES FROM THE MOTHERLAND

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s