After my ALS diagnosis was doubly confirmed by UCSF and the Mayo Clinic in Rochester, I decided to send a mass email letting my friends and family know what was happening. Partly, it felt ridiculous to be putting this kind of information in email, but I didn’t know how else to share it. When you give people bad news, you often end up managing their reactions, even if it’s your bad news. That doesn’t upset me; I know how hard it is to say the right thing when there is no right thing to say. But I couldn’t imagine the countless conversations as I explained ALS, my newfound area of expertise.
So I opted for email, and I received a lot of beautiful and thoughtful responses. Maybe people didn’t know exactly what to say, but the notes were heartwarming to read. Many were telling me that they believed in me, that they loved me, that they were shocked. Even hearing that people were speechless felt like a form of support. I knew the feeling of being speechless.
One friend asked if I was mad at my body. It was an interesting question, and one I hadn’t thought about before. So I gave it some thought and decided that no, I wasn’t mad at my body. I felt like this was something that had happened to me, not something that I had done to myself. Fast forward three years and I’m still not mad at my body. I can feel the effort it’s making to work correctly, even as things get more difficult.
But I am kind of obsessed with other people’s bodies in a new (I hope not creepy, but probably creepy) way. I’ve turned into a person who stares at people when they’re walking down the street and I’m riding by in a car. I look at their legs, especially the calves of runners. I’m not mad at my body, but I am amazed at how many people’s bodies work. The sheer number of people who are walking down the street on any given day, not understanding that they are performing a miracle.
I am still very surprised that I’m not one of them. I can’t help but think of myself as an active person, someone who runs, who hikes, who walks with heavy grocery bags. Someone who goes to yoga class and stretches strong legs into the air. Certainly someone who has no trouble breathing.
I’m not mad at my body, but I wonder why it won’t get up and walk across the room. It used to do that so well. I want to stand. I just want to stand up and explain that it is 2015 and we don’t have incurable diseases anymore. They don’t exist. Not everyone survives, of course, but everyone has a chance. Our bodies are amazing things. They can heal from so much. I want to explain this to whoever is in charge of assigning diseases, even though I know that I would be talking to air.
I’m frustrated with my situation. I’m mad at ALS. In my worst moments, I’m even mad at all the ALS organizations that are trying to help, because they haven’t helped yet. I know they’re working hard. I read all the news and I see that there are developments to be excited about. But until someone says to me we will fix this in your lifetime, we have good news for you, it’s hard to share the enthusiasm of the press releases highlighting studies that might drag on for years before there’s anything tangible to show.
I appreciate that ALS will eventually be a manageable illness, and maybe even entirely a thing of the past. I know that this is huge. But I also know so many people living with the disease today, and I want their lives back. I want my life back, and I don’t mind that this sounds selfish. There are a lot of us, and I just want us to have a chance.
When the mass email goes out explaining to everyone that this nightmare is over, I want us all to know that our bodies did their part. That they held on and that we are still here.
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Thank you for sharing your experience with all of us. I always want to read your blog because you’re such a great storyteller. Your spirit shines through all of your many physical challenges. J
Keep talking, we’re all listening.
OMG Sarah! My thoughts and feelings exactly except I am angry at my body. I took care of it and that’s the thanks I get. It betrayed me. I was asked if I’m angry at God….no, because there are so many adults and children suffering. I couldn’t be that conceited (maybe not that strong of a description). I think sometime if there’s a cure, treatment or miracle how I would be able to walk. It frightens me, like a child taking first steps. I try to be hopeful, but I’m also realistic. Still praying.
I hear you. My only thought sometimes is why I can’t trade places with you or Beth. I can bear thus. You should not have to.
Thank you for writing this, Sarah. It’s so totally honest. It helps us see what you are going through..it’s not easy. At my age of almost 75 and in good health, I sometimes feel bitter, sad and fearful because I know have only a limited time left. Reading your words puts it all in perspective. I should never complain, but should be grateful. Love you, Sarah.
God Bless YOU Sarah. Sincerely. God Bless YOU.
Sarah, you have said this so well. My son has ALS and I would trade places with him in a heartbeat. This isn’t a grand gesture, just that I have lived a full life, therefore my life should end before his. I think one of the worst things about this disease is never knowing what the next loss is. Definitely one of the most cruel and tormenting diseases. Hope is all there is, that gets thin some days. I appreciate your blog and my heart goes out to you and your loved ones.
Wow. I know what you’re saying about “breakthroughs” & “discoveries.” Great news maybe for those yet to be diagnosed…10-15 years from now. It IS hard to get excited.
Glad I stumbled upon your blog. Hang in there.
Patty
Sarah, it’s absolutely astonishing how week after week you are sharing your life with such grace and honesty. My dad had ALS. Your challenges. joys , frustrations are close to my heart. You are always in my thoughts and prayers .
Hi Sarah,
Are you in the San Francisco Bay Area? I felt compelled to share this with you because I had a mother in law with ALS & anything with hope has drawn my attention. I happen to know the person Dr. Alfred Galvez is speaking about when he was here in Pleasanton CA on 6/12/15. I’m so grateful to have captured him talking on my phone & it’s only 9 min ~
https://www.youtube.com/watch?v=JPvKGi6FEI8
There is more information I can send if you are interested. You can call me too at (510) 908-5880. I live in Castro Valley CA. Have you heard of this?
Sharing the blessing,
Karen
This is my first time reading your blog but will be a regular from now on! You speak so eloquently. I have a slow version of ALS called Primary Lateral Sclerosis. I’m a combo of the two. Sounds crazy I know. NIH calls me upper motor neuron dominant ALS. Eventually I’ll end up the same way ALS patients do. I look at other people’s bodies the same way! I marvel that they can do so many things at one time. It’s hard to pretend to be excited when someone tells me of a new ” breakthrough ” they read about. They’re so hopeful a cure/treatment is just around the corner when I know it’s years & years away. I’m not mad at my body either. It’s trying so hard. I’m grateful for what it can still do. I don’t want to look back and not have appreciated my best days. However challenging they are. As long as I can still somewhat move (with help from walkers and wheelchairs) breath/scoot/roll/eat/chew/swallow/laugh ~ I consider these my best days. BTW are you familiar with Ellie O’Connell’s blog Have Some Decorum? Check it out! God Bless you Sarah! Your new fan, Kate
Spot on!