Sometimes I can’t believe that I ever worried about ANYTHING before ALS. I feel like if I could have my health and my life back the way it used to be, I would just walk around in a state of blissful gratitude all the time, totally irritating the hell out of other people.
But if it sounds like I’m suggesting that everyone who has it better than me should be happy and appreciative all the time, I’m not. That’s obviously nonsense. After all, by that logic, I should also be happy all the time, because the world contains many people whose lives are harder than mine.
These are the things I think about as I struggle to make sense of my disease and what it’s done to my life and the lives of those closest to me. I used to be ABLE. I took care of myself and my family, I cooked, ran, drove, stood on my head in yoga class (sort of. Whatever. That part is not important.) Now I need help to make a simple meal, and getting in and out of bed is a serious physical challenge. When my husband travels for work, I am overwhelmed by logistics. Who, when, what if?
I had frequent thoughts of disaster after Scarlett was born. All of these negative, and mostly preposterous, possibilities arose. What if she stopped breathing? What if the ceiling fell on her while she slept? Even, and this was a recurring one, what if she somehow got stuck in the refrigerator?
Because of the loss of control in my life, I find myself occasionally thinking like that again. Scarlett and I are only home alone for a few hours in the afternoon, and it’s time I value immensely. So to have it undermined by fear and negativity is particularly annoying. But what would I do if someone broke in? What would I do if the house caught fire? What would I do if a band of angry seagulls attacked the house, demanding crackers and we were out of crackers?
My sister convinced me recently to go get a massage at this really nice spa in the city. I’ve been there a few times, but not since my diagnosis. I spent days thinking about what could go wrong. How would I get the spa robe on? How would I get on the table? What if it was more stressful than relaxing, rendering the whole experience an expensive mistake? The day of the massage, I made my way to the women’s room to change into the robe. I couldn’t do it. I struggled for about 10 minutes, unable to get it up over my shoulders. Eventually another woman came into the room and I swallowed my pride and asked her to help me. The masseuse helped me on and off the table. It ended up being one of the best massages I’ve ever gotten. A terrible and wonderful experience at the same time.
There is always something to worry about, whether or not you have ALS. So the challenge is how to confront those worries, how to prepare for the real possibilities (don’t go to the spa alone), how to quash the ridiculous fears (buy crackers.) I can’t be happy all the time, no one can. I don’t know what it would be like if my ALS just went away, giving me back all the things it’s taken.
What I do know is that Scarlett is now way too big to get stuck in the refrigerator. And that’s a relief.
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Sarah, I appreciate how open (and funny) you are with your thoughts. I can especially relate to this entry because I’m the worlds biggest worrier. I even worry about how much I worry and if my anxiety can “will” my worries to happen(kind of like the opposite of “the secret” lol). Now I can add toddlers in the fridge to the list(never thought of that one, ha!). My husband tells me I have an abnormal need to control issue(he’s right). The unknowns are for sure scary and it’s hard to let go of all the “what iffs” and not let your mind run wild. It’s calming to know others are with you. Thanks for sharing and great job with this website.
Sarah, I love the humor in your writing, glad to see that ALS hasn’t stopped your sarcasm. Keep it up!
I have written a bit and I remember telling you that you had become a better writer than me ( a while back).
Now you are a better writer than almost everyone and I fully expect you to become the PEN of ALS. Proud of you, as always.
-Dad
Sarah.
You are so cute and funny. You are amazing and my thoughts and prayers are with you. I can only imagine what you feel but your attitude is amazing!
Sarah, you are courageous, thoughtful, resilient, and funny. I am sad and frustrated that you have ALS. It seems so unfair. But, through your gift of writing you touch others and open and expand our hearts and minds. I grow a little each time I read one of your blogs. Thank you for that gift. I keep you in my thoughts and prayers, along with my good friend, Diane, who also has ALS. Love to you from George and me.
Robyn, love this and you. I’ve totally had the thought about the opposite of The Secret, too.
Thank you, Cherryl! Love to you and George.
Dear Sarah,
I cannot thank you enough for your writing and your teaching.
My love and my prayers go to you.
Que Dios te bendiga,
Nohelia
Thank you, Nohelia!
Darling, Beautiful Sarah!
Just today, I found out through Facebook that you have ALS. My heart is so heavy right now. Of all the beautiful and wonderful students I have had throughout the years, you really did stand out as one of the best. From reading your Blog I’m getting an idea of the challenges you are facing. As for myself, I am 73 and I am now trying to get ready to face inevitable decline and death. It sure the hell is not easy. But, this is the human condition. I know your wonderful family are all being very supportive. I just want to send you my best wishes and love, dear Sarah!
Liz Rexford
Your Old Music Teacher at Longfellow
Thank you, Mrs. Rexford! How is it possible that you are 73?? I am sending love and best wishes back to you.
Dear Sarah, Through Ry and Elyse I have followed your blog. You are such a wonderful writer. You express sincere thoughts that tear at my heart and make me laugh at the same time. Keep the faith and I will keep you in my thoughts and prayers every day. I’m so glad that Paulie and Ryan met at Dayton. They were thick as thieves from day one and I always looked forward to him coming to our house with a car full of drums to irritate the neighbors. Peace, Love and the gift of time. Pat Gac
Thank You SO MUCH for the inspiration, insight and honesty!