Hi. It’s ALS Awareness month, and to commemorate the occasion, I thought I would share some things I’d like you to know:
1. ALS progression differs from person to person. Some people progress so quickly that they are gone within months. Others live for decades with the disease. My own progression is somewhere in the middle. The latest change is in my right arm, which has been very weak for a while. But now it’s not strong enough to get back on the armrest of my wheelchair if I move it off to do something crazy like read a book on my iPad. That means that I have to constantly ask for help moving it back to the armrest so that I can adjust the position of the wheelchair or drive it. It’s one more hit to my independence, but with this disease the hits just keep on coming. It’s kind of like The Beatles, only bad. Unless you don’t like the Beatles, in which case I guess it’s exactly like The Beatles.
2. I’ve been living with ALS for six years, even though for one of those years I didn’t know it. Normally I have a pretty good imagination, but I find it hard to picture what my life would be like if I had never gotten sick.
3. ALS means that it’s very hard to live normally, but I try to do it anyway. Yesterday, I wore bright red lipstick and met friends at an art gallery downtown. I couldn’t see the pieces on the second floor, because there was no elevator. My friend Mary fed me at a table intimately set for 12, surrounded by colorful canvases and glossy sculptures. One painting just had the big word YES in silver glitter. The whole thing made my day. ALS does limit me, but not as much as you might think.
4. That’s because I have so much help. I have three wonderful assistants, I have my beautiful kid who adjusts my feet for me and scratches my itches, I have my husband who basically makes my entire life possible at this point, and who has stepped up in more ways than I can explain to make sure that I have what I need. I have my sister and her family, and a boatload of friends who bring dinner and wine and laughter into my life. Sometimes I’m still able to forget that I have ALS.
5. But sometimes it’s right in my face, and the emotions bubble up and spill over like a science experiment. I no longer trust my body, though I used to be able to rely on it. I take medication to help me with the anxiety and depression that accompanies this disease. It took me a long time to agree to medicate myself, but it was definitely the right decision. I needed help.
6. A glass of wine is 5 ounces. So if you have a really big glass, and you pretend it’s only one serving, you’re just fooling yourself. The way I do, quite happily, every night.
7. I wanted to list the things I miss the most about being able-bodied, but there are too many. I miss everything.
8. It takes me a long time to do very simple things. Sometimes I end a day feeling like I accomplished a lot, and I try not to think too hard about the fact that without ALS, I probably would have accomplished 10 times more.
9. I think there are a lot of things about life that are universal. We all experience limitations, we all have things that didn’t go the way we planned. We all get frustrated with our partners and our kids and our farting dogs. We have all dealt with loss. ALS does not give me a monopoly on suffering.
10. The third annual #whatwouldyougive campaign is starting next month. Participants can give up an ability in an effort to understand just a bit of what it might feel like to live with ALS. All donations go to the research being done at Boston’s ALS Therapy Development Institute, the only lab devoted to finding treatments and a cure for this disease. More information will be coming in June, and I hope you get involved in some way.
11. This disease will be cured, it’s only a matter of time.
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Awesome words again! I admire you so much. I share your zest for life – the art museum day with girlfriends sounded perfect despite the limitations. I hope we can share dinner with you again soon and watch you sip that big single serving!
Sending you strength and courage. Praying for you.
Dear Sarah, While I never had an opportunity to meet you while I was at PGW, my friends Jane & Becca introduced me to your blog. I am impressed by your strength, courage & ability to articulate your emotions & experiences. Thank you for being you and inspiring the rest of us. I pray for you and, even though we have not met, HUGS to you and LOVE. ❤️ joyce akiyoshi
Thank you Sarah for sharing so candidly your survival with ALS. Knowledge is power and your story helps to illuminate and inspire. Your words always leave a lasting impression and although we’ve never met I feel such a connection I felt compelled to comment today. Thank you for making me laugh about dog farts and cry about just about everything else this crappy disease does.
I have known 4 people who have been diagnosed with ALS and, and you commented, each one was different. Only one of the four was outwardly bitter and really did not want to accept any assistance.
The other 3 were ( and are as one is still living) very courageous. One lived beyond 10 years, the other approximately 3 years.
Thank you for your candor and inspiration.
My prayers are for God to provide you with courage, inner strength, and peace. I also pray for your family, your friends, and your medical staff!
There will be a cure. Sending positivity around that idea.
My son has ALS living with it now since he was diagnosed in 2011 ….
He has no use of his arms or legs,in an electric wheelchair…. still has his voice …has a feeding tube and is now considering to be proactive and get a trac. He still works coaching kids in basketball
When there is a cure for us I will fly from South Africa to meet you and continue to celebrate life
Number 9 really resonated with me. I’m raising up a child with a disability and on days when I want to have a pity party it will be good to remember your words, “We all have things that didn’t go the way we planned.” Thank you for being so candid and sharing. You are my favorite blogger and I really admire you.
- A friend in Washington state.
Sarah, you continue to paint the whole picture of your life and coping with this disease in ways that we can all better understand. The good and the bad and also finding joy… love the red lipstick, art gallery scenario and that lovely glass of wine, portion size be damned. Cheers and love!
Sarah, you are a warrior! Thank you for every word you write-we all know what it takes for you to do it.
It’s really a terrible disease. However, it’s truly wonderful that you have learned so many things about life and what’s really important, as well as showing us how you mourn your losses. Keep on keeping on, Sarah. Your wisdom is something that helps all of us. Love, “Mrs.” Rexford!
Happy Mother’s Day, Sarah ! You are a very special woman and an amazing Mom
Oh how I want that glass of wine but I know it will make the whole bathroom process that much more difficult! Just to sit and enjoy adult beverages at gatherings is just one of the simple pleasures I miss. Of course there are many things that are more important that I miss, but a glass of wine would make it all much better! Cheers!
I just discovered your blog today after my third visit (this week) to a good friend of mine who has ALS. She was diagnosed less than a year ago and has two daughters, ages 14 and 20. She is not doing well. I am thankful to you for sharing your journey and fight with this disease; hopefully, in some way, that will help bring attention and funds to research for a cure to this horrible disease.
Your words remind me of my friend. She is a mother, was a writer and continues to be a true fighter. And somehow, alone in her bed and unable to move, she continues to find a reason to smile on most days.