I’m sad. Is there a more boring emotion? In sadness, nothing seems possible. Nothing seems worthwhile. Sadness is a hole, it is carrying a handful of shiny pebbles, and each pebble is a promise, and they are all falling out of your hands, disappearing as soon as they hit the ground. Sadness means that you sit by yourself and you can’t even read or listen to music, and so you stare at the sky and wonder if the feeling will ever go away. And then you think that probably it won’t, because there is nothing to look forward to, and there is no way to be in control of your life anymore.
My sadness means I haven’t been able to write. I’m tired, and I haven’t really been able to explain myself in conversation. I’ve been thinking and thinking, casting around my brain for something to write about, anything. So finally, I’ve decided to just write about this, this reason that I’m not writing. This reason that I am feeling so alone.
It probably started because I’ve been using the BiPAP more often. I love being on it, and that makes me sad. It scares me, to think that I am happiest when a machine is breathing for me. That this is when I feel safe. I’m sad because I feel like my house is not my own, there are people there all the time helping me and I am so grateful to them, and I want them all to leave.
I’m sad because every morning my daughter gets up and sneaks candy or fruit rollups or something else that she is not supposed to eat for breakfast, and there’s nothing I can do about it because I can’t move. I threw out all of the candy, I have acknowledged that we can no longer buy ice cream. My sister reminds me that many kids sneak sugar, that she and I certainly did, that this is not a reflection of my parenting. And I know she’s right, and I still can’t help but feel guilty for not being a better supervisor, a better monitor, a better mom.
I’m sad because I took Scarlett to vote for Hillary Clinton on Tuesday and the future seemed so bright and clear, and then it wasn’t. I cried the next morning when I told her the results of the election, and she asked me if her friends would be sent away, specifically one friend that she worried would have to go and live in India instead of being here with us. And of course I reassured her that no one was taking her friends away, but later I cried again, because it’s not something she should be fearful of. Not in 2016. Not when we thought we were making history. The good kind. And I know not everyone who reads this agrees with me politically, but that’s not at all the point. I don’t want this to be political, I want it to be about my daughter, and all the pebbles I thought that I held, and the way that they’re all falling, falling out of my hands, because I won’t always be there to reassure her.
I tell my sister all of this, and I tell her that I know what she’s going to say. It’s not my fault that I’m sick, that I can’t get out of bed in the morning by myself and make breakfast for my daughter. I know that she is right when she does in fact say these things. Parenting is hard, she reminds me, even if you’re healthy and not completely exhausted.
Then I am sick of my own voice, sick of the way I sound whiny, sick of the way my spirit is sinking to join my body on the ocean floor. I sit there and all of my thoughts rise like cloudy jellyfish. They are escaping, like the pebbles but in reverse. Everything is getting away from me. I go to my machine, and I just breathe.
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Dear Sarah, You of course don’t know me but I have been reading your blog for a long time now. I wish there was something I could say to ease your suffering. I know there is not. Life is so horribly unfair. Writing as beautifully as you do will one day be such a gift to your daughter. She is too young now to understand but some day she will and she will feel so doubly blessed by the love behind your words and so proud….every bit as proud as Chelsea must be of her mother Hillary today who fought and continues to fight the good fight just as you do every day.
I’m sorry you’re sad-I know I’ve been very upset over the outcome of the election. And while my oldest has been able to control her candy intake-my youngest is asking me for another piece every ten minutes. After a while I’ve changed my responses from “no”, to “after you have eaten your next meal” to “you can only have candy for breakfast if it’s a kit kat”. Because lord knows I can eat a kit kat for breakfast every day. You keep on breathing deeply my friend!
HI. I AM YOUR “AUNT” JEANETTE’S MOM. I FOLLOW YOUR BLOG. YOU ARE SO BRAVE, SMART AND A WONDERFUL MOTHER. I AM SORRY YOU HAVE TO FIGHT THIS DISEASE. GOD HAS BLESSED YOU WITH GRACE, COMPASSION AND LOVE TO DO WHAT YOU DO FOR YOUR FAMILY AND OTHERS. I OFTEN PRAY FOR YOU AND YOUR FAMILY
YOUR COUSIN’S, MY FOUR GRANDCHILDREN ARE ENTERING THE ADULT WORLD OF REALITY. CHRISTIE IS ON HER OWN AND NOT YET WORKING IN GRAPHIC DESIGN BUT WORKING. DANNY AND NATALIE WILL BOTH BE GRADUATING COLLEGE IN THE SPRING. NATE IS WORKING FULLTIME AT REI AND PURSUING HIS MUSIC, A VERY TALENTED YOUNG MAN. HIS GIRLFRIEND, MEGAN GILLEY IS PART OF HIS MUSIC. J’ IS A NANNY TO TWO LITTLE ONES MON.-THURS. WENT BACK ON WEEKENDS AS SEASONAL HELP AT REI. WE WILL BE SEEING THEM ON THANKSGIVING. EXCUSE MY USING ALL CAPS. IT IS A HABIT I HAVE GOTTEN INTO BECAUSE OF A COUSIN WHO HAS VISION TROUBLE.
MAY GOD CONTINUE TO BLESS YOU . SHERRY SWANSON
Dear Sarah, as a fellow writer, I know it’s a vicious circle: if you can’t write, you will feel down; and if you feel down, you won’t be able to write. (Looks like you found a way to break that circle, though – wonderful piece here!) A thought, though. I wonder whether we don’t work our way back to saying less as we become more wise. It’s a bit of a mystery, but I think there’s something in this. Don’t despair. I’ve no doubt your words are become more concentrated, rendered down. Closer to the heart of things!
Sarah, you are so brave and your emotions so real. Not to mention a lovely writer. You touch so many. Wishing you hope and happiness. My beautiful daughter in law has ALS also. I know she looks forward to your blog.
Sarah, I feel for your sadness and thank you for your honesty. I too have had a sad week. We miss Jay, our son terribly, but know he and Missy are trying it on their own for awhile along with their caregiver to feel a sense of normalcy, sad that I wish I could trade places with him and would do so in a flash and take on this awful disease. Sad, that the elections turned out the way they did, I too voted for Hillary and cried for the next couple of days when she didn’t win. And to boot, have tried to stay neutral and respect everyone’s opinion until recently a Trump fan laid into me mercilessly and I wanted to tell him to go and F**k himself, but didn’t it wanting to keep my dignity. Sad that you, Jay, Stephen, and others have to endure this God awful disease and are all doing it so bravely. And as a grandmother, Scarlett will one day admire your courage and strength and if she eats too much sugar will turn out just fine. Much love to you.
Sarah, thanks for your honesty. This disease sucks. We have to feel sad for what we have lost. And for the record, I can still use my arms and legs and I still can’t control everything my son does. Yes candy is his breakfast of choice. He goes from ordering salad instead of fries at a restaurant “because my body feels better when I eat better” to eating Halloween candy for breakfast. No parent can control their child completely. But I understand your sadness. And the election, so sad. There goes everything that has been accomplished since FDR for the benefit of the citizens and human rights. Sorry you’re needing your CPAP more. But thank God we have CPAPs. I am sad that I can’t eat Halloween candy ever again or fries or salad or anything and my comments in conversations are usually after the topic of discussion has moved on. It’s ok to be sad. And at the same time be proud of your daughter and your mothering and your writing which moves so many people and gives strength to many ALS patients.
http://www.stategazette.com/blogs/2051/entry/67543
http://www.stategazette.com/blogs/2051/entry/67596
My daughter is 15. We flipped roles. I used to snuggle her upstairs as she did her asthma treatments. Now she snuggles me as I put on my bi-pap and I am put into bed. Look at your pebbles Sarah and be thankful. Scarlett will be stronger because of you and your fight. Don’t lose heart my friend.
Sarah Alley
Just sitting with you in the sadness.xxoo
Your sadness is my sadness and so eloquently spoken! Mine comes from The inability to hold my 2 month old great granddaughter. Only propping her for now on a pillow so I can feed her with my one partially hand…then my husband burps and changes her. Or missing my 15 year old grandson’s away football games because I don’t want to be a bother. This saddens me. But I an instant my sadness dissolves when she smiles and “talks” to me or my grandson comes in after the game I missed to tell me everything! Life is still precious and as long as I’m able I will fight and advocate for us!
Absolutely beautifully written, Sarah. With a mother like you, your daughter will be just fine.
After the election, I took myself off of all social media for my own sanity.
I also have needed to reassure my son that even though the disabled were mocked during the campaign, he and all those with a difference, will be fine.
Hope I’m right.
Take care.