halfshellvenus | Idol Survivor: "For My Sister"

For My Sister
idol survivor | daily-fic challenge, day four | 201 words

x-x-x-x-x

Do you remember
the mazes you built
in the hayloft of the barn?
Scratchy straw against my skin,
the scent tickling my nose
as I crawled by flashlight
through S-turns and elbows
to finally reach the heart.
A cat with new kittens
was the prize that waited.

Do you remember
the rides on your pony,
me blindfolded in front
with your arm around me
while you steered your steed
in arcs and criss-crosses,
double-backs and spins,
before peeling back the dark
to let me guess our location
on that farm some 70-acres wide?

Do you remember
when you read to me,
Dr. Seuss and other stories
given life by your energy
long before you would share them
with other preschoolers
in a career you would someday love?

Do you remember
that you were beautiful,
capable, giving,
the older sister so amazing
and so confident
that you were everything
I hoped I'd someday be?

I know this disease
is stealing control
of your muscles, your movements,
even parts of your deepest self.
But I hope it leaves enough
of who you are, who you were,
that all those moments
will stay with you
as they always have with me.

Will you remember?

--/--

Flat | Top-Level Comments Only

Beautiful. Heartbreaking. A glorious tribute to the author of your memories.

Thank you so much, M. It's just so sad that she's going through this. I really hoped she would escape it. :(

*hugs* This is so sad. I think sometimes, we have to be okay with it being enough that they live on in our memories. Just before my grandmother passed, she had basically lost all of her memories of us, and it was heartbreaking. She was with us for Christmas and said that she was so happy that she was there with us and that "kind strangers" had let her spend Christmas with them because she didn't have a family anymore. :(

It's so hard, though, especially when it's someone younger. My sister is just 6 years older than me, and my husband's older sister (2 years older than him) went through early-onset Alzheimers. And most of all, it's so unfair to them. :(

Your grandmother's last Christmas sounds just heartbreaking for all of you. :(

Hugs. Best to your sister. I did not know she was ill. Beautiful sentiments.

Thank you so much.

My sister has Huntington's. We'd hoped for a long time that she would be spared, but that hope is long gone. :(

This one just - ugh, friend, it really hits home in a painful and yet elegant way.

The reason I haven't been around (I'll update in full soon) is that I was diagnosed with Secondary Progressive Multiple Sclerosis - I had the more traditional relapse/remit MS that most people have (about 80%), but the issues in February/March were mostly because the MS had progressed to this final stage. I'm 39, and my neurologists (I have three) don't think I'll be able to walk by the time I'm 50. 70% of my brain has been overtaken. I'm starting to forget some words, and many days, need a walker or cane. I can't control my muscles, my movements, and sometimes, the things I say.

I don't know what disease your sister has, but this is relatable, and I feel... connected to your words. "Will you remember?" is a question I've had to ask myself since my 2010 brain injury, and now, it's "there's so much I WANT to remember - how do I make sure not to forget?" Your poem really reminded me of that in such a powerful way. Beautiful, sad, and I'm sorry you (and your sister) know this struggle and worry and pain. <3

Oh, I'm so sorry to hear this. I had heard from a mutual friend that some of this might be narcolepsy rather than MS-related, and I'd hoped that was true. :(

My sister has Huntington's, as did my oldest sister before her. I wasn't very close to the oldest (partly because she cut me off for 20 years, due in part to delusions caused by the disease), but this sister? Oh, yes. And life has always been so unfair to her, and it just kills me that she's going through this now, too. Alone except for her siblings and a couple of friends, and now she can't drive anymore (probably a few years overdue). It will only get worse from here, and the disease affects memory and cognition and personality as well as the muscles. I've seen how bad it can get, and what's waiting is just heartbreaking. :( :(

I think writing down the things you want to remember really helps. Especially the good things about where you've been and what you've done, how you and Toby met and special moments of love over the years, special memories of James. Someday, reading those things again may help, and decades from now they will mean a great deal to Toby and James.

Thank you for your kind words, especially when this must be hard to read. ♥

Thank you so much. I actually have both - Type 1 Narcolepsy with Cataplexy (so it looks like I have seizures but instead, I fall asleep randomly and enter into REM cycles far too rapidly, causing convulsions) as well as the Secondary Progressive MS. So it's been - a lot, and hard to keep track of things. Fortunately, the people who do know (I haven't really said anything here, on Twitter, or on Instagram yet, but I will, once it sinks in a bit more) have all been very kind and supportive, family included.

I'm so sorry to hear your sister has Huntington's. That is a hell of a disease, and it's a cruel, unfair thing to have happen. I feel so awful that she - and by proxy, you - suffer this. The not driving is hard (I get that) and I know what happens when muscles degenerate and cognition goes away. So I'm just absolutely gutted for her, and for you. <3

Writing down the memories that matter is on my to-do list. I have tons of photos, but there are things I just want to have written down - good, bad, mundane, whatever seems/seemed important. That's the story of my life, and if I write it and eventually forget (and with MS, I will), it will be good to reread and say, "That was me. I did that."

Your writing just always - hits home and makes me feel something, from mirth to heartache. Truly, truly well done. <3

Whatever our failings, our foibles, the elements that embarrass us, shock us, bore us or anger us about ourselves we need to hold on to what makes us human, to what we want to celebrate, to everything that makes us appreciate our lives.

What an evocative and loving tribute to your big sister and what a hopeful wish that demands to come true.

I sure hope she'll be able to remember the good things in her life, or at least be able to know and remember that she is loved. Huntington's is such a cruel disease, and it attacks the brain every bit as much as it does the muscles. :(

Thanks so much for reading and commenting.

What a touching and heartbreaking tribute to your sister. I hope you show it to her.

Thank you so much.

I honestly don't know whether I could show it to her. I think it might bring more pain than the feeling of being loved, and I wouldn't want to do that to her. This is already hard enough for her. :(

These memories are painted so beautifully here, heart-wrenching, thank you for sharing, I hope everything works out okay *hugs*

Thank you very much.

We have no answers for Huntington's disease right now, and I fear it will be a very long time before we find them (if we ever do). I so hoped my sister would be spared all this. :(

Idol Survivor: "For My Sister"

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