I woke up early this morning, my hair matted down under my breathing mask, so thirsty I could feel the dry pockets in my mouth eviscerating all the moisture in the room. Sleeping is uncomfortable now, so that sometimes, when I find myself in the perfect position (usually on my side, with my legs tucked up in psychic regression) I feel that I have never been happier. Take something away, take it away again and again, and then return it, even just partially. It’s either the definition of bliss or the definition of torture. I can’t decide.
Otto woke up at 5:30 AM, crying in his crate next to Rob’s side of the bed. He’s been sleeping pretty well, but it’s still something like having a new baby, and Rob mutters his displeasure at these early risings. It’s not just the dog. When I’m thirsty in the middle of the night, I need Rob’s help to wrestle the mask up above my lips, to hold my water bottle up so I can drink. When my legs are so leaden under blankets that used to feel like air, I have to ask him to roll me over. Then the dog cries, then Scarlett appears. Then it’s breakfast time, the day has begun, and we feel that we didn’t get quite enough night.
The nighttime difficulties make me feel the most helpless. I lie there for as long as I can, not wanting anyone else to be disturbed, and still, eventually, I throw the sleep grenade. I have to.
When I was thinking of challenges for the #whatwouldyougive campaign, the idea of needing to wake up your partner to roll you over was the first one I thought of. But that’s too hard. People shift and move on their own in the night without even realizing it. A light sheet, a duvet: these things don’t trap the average sleeper. Better to concentrate on the challenges people can take on while they’re conscious.
It was a good weekend, despite my initial whining here. My dear friend Amanda was in town from Chicago, while her wonderful hubby stayed home with their three kids. We did almost nothing, sat in the backyard and talked about our lives, boys from high school, books. Otto joined us, tucked into Amanda’s arms or on my lap, when he wasn’t chewing on the ends of one of Scarlett’s dresses. We watched as she screeched and ran from him, a whirlwind of curls and calf muscles and puppy exuberance, solid assurance that the game would continue.
It’s good to be with friends and to feel normal, to acknowledge that the most important things in life can be very simple. Some sun, people you love to talk to, the day’s first glass of wine. We made a real effort to solve the world’s problems out there on the deck, decided that being “good enough” at parenting should be good enough, and looked up to see what was seriously a perfect rainbow circling the sun. I mean, I’m sorry, I wish I could leave that last part out, because how cheesy. But there was a rainbow around the sun, and not a hint or a memory of rain. It seems worth mentioning.
I wish I could always hold onto those good, calm moments. I guess I should be happy to have them at all. I certainly was NOT having any this morning, as Rob, my dad, and I worked to get Scarlett out the door to her first day of Frozen-themed ballet fantasy camp (which is, incredibly, a real thing.) She was tighted and tutued, I was tired and crabby. These are often my worst times, after a lousy night of sleep, when all I want is to DO, not direct. I was sharp with everyone, I was not “good enough.” I promise to keep trying, but I’d prefer to be working from a place of restfulness. Or at least more caffeine.
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Feeling normal is more of a challenge everyday, I get that. I’m glad you can still swallow. It helps. Hang in there…
Sarah, it is so inspiring that despite the challenges, you are tuned to the parade of little delights that makes up so much of life. You are always in my prayers.
Hello Sarah,
I read your stories with the same interest, always happy to receive news from you.. I t makes me so sad that you have to go through this suffering, I can’ t wait until a treatment is found for all our ALS family and friends who suffer so much. Yor are my inspiration and I think of you often. I am sending you a big hug , keep writing, so are so talentated . My best, adele from France.
Another beautiful post, Sarah. You have a way of capturing these hard and beautiful moments, the paradoxes. Thank you for writing. I’m always reading them even when I’m not commenting. I can’t wait to meet Otto. <3
Thanks for posting, Sarah. It’s the little things..that we may or may not appreciate. Sending best wishes!
Your words always touch my heart on so many levels Sarah. Sending you good thoughts from the east coast, and hoping my prayers are answered that you get a decent night’s rest tonight. Psst… Otto, maybe you can hold out to at least 6:00 a.m. tomorrow morning? Good puppy. You can do it!
Thanks Sarah. I’ve just discovered your blog. I am quite a bit older than you but just a few steps behind in the ALS progression. I write daily in my journals and find we share many similar experiences (especially the Trilogy 100. We are currently dancing around each other. I don’t think we will ever be friends though I know I will just have to suck it up). My kids are just out on their own yet we still all struggle. It’s a challenge I am willing to accept but it is just not fair to wrangle the rest of our loving family into this chaos. Glad to have found you. Onward.
Hi Sarah, I was just referred to your blog by a mutual friend, Mark Thompson. I taught in Oak Park many years ago with Mark and your parents. I asked him how you and your parents were doing …he sent me the link to your blog. My first reaction was GOSH …you are a clone of your beautiful mom!!
Your writing is wonderful and touching!
Thoughts and prayers with you and your family as you tackle this challenge.
Pam Srock
Thanks, Pam!
Onward. Xo
Haha! Thanks, Liz!
Dear Sara, I read your blog every day…can’t end my day without checking on you. You always manage to make me smile, and cry. You have an amazing way of sharing the reality of ALS, so humanly. God bless you and your beautiful family.
Sarah – I think of you often. You are so brave to share your journey with us. So honest, so touching and so beautifully written. I read every one of your posts and pray very hard that things stay the same for you. I am officlally a Sarah Coglianese groupie. For today i will pray you sleep well tonight. XXOo
Hi Sarah -
My friend Rebecca Alexis turned me to your blog awhile back. I keep you in my thoughts and prayers – Hope you get a better nights sleep !! And, Keep seeing those rainbows around the sun!! Hugs!
Hi Sarah…I was also diagnosed in 2012. I Have an older dog that’s attached to my husband and wants very little to do with me because I was her playmate. I miss that and her. Now my husband is caretaker for both of us….no children so I don’t have a child to think about and care for her needs. I Am also in a wheelchair and losing hand, arm and trunk strength. I also started choking on water. I’ve felt so brave and hopeful with doctors telling me I had a slow form of the disease…..not so slow anymore. I’ve only cried a couple of times, but today I hit a wall. Like you, the helpless feeling came at me like a train with no light at the end of the tunnel. I used to love my bed and sleep so much my husband would laugh at me because I had a contented smile on my face….now I hate my bed because I can’t move my legs under the sheets and quilts. I have panic attacks and feel claustrophobic. Every morning I wake up thanking God for what I still have and at night I’m frustrated from the bedtime ritual of getting me into bed. In a small corner of my heart and mind I pray that something out there is going to help us. You And your family are in my prayers
Donna, thank you for sharing this. I’m sending hugs.
Another enjoyable post. Mom complains of that same super dryness after using the mask. She also has been told to sleep elevated on her back, but the only way she is comfortablr and can sleep is on her side hugging on a pillow with her legs pulled up.
Love and hugs from me to you
Love reading. My family and I are going to do the challenge of giving up something for a day. Strangely enough my children are excited about it. I need to get more info. We will also make a donation. Let me know if there is more info that I need
Thanks!! More info here: http://www.speed4sarah.com/help-make-als-history/ (left side has links to join/donate).
Sarah,
I found your blog through Hannibal Bray. My husband, Matt White has been living with ALS for 15+ years. I cried reading your blog. I can relate to your nighttime struggles from the caregiver’s perspective. May God Bless you and your family as he has us through this horrific disease. Matt is on a ventilator and much further in his progression, but if you ever have any questions or we can assist in any way we are here.
My husband also has a Facebook page, Matt White Cure ALS Foundation.
God Bless you,
Shartrina – shartrina@gmail.com
Thank you so much, Shartrina. Hugs to you and Matt.