This week three of my close friends with ALS were in the hospital dealing with ventilators, pneumonia, feeding tubes, diaphragm pacers. Yesterday, a man I did not know personally passed away from this rotten disease, leaving behind a young daughter. My mood as I write this can best be described as low, with a side of resignation. This isn’t even close to Bad Attitude. It’s just the reaction you might have if you are hit again and again with the kind of surreality that comes with living in the world of ALS.
I extend my deepest sympathy to the family of Louis DiGiacomo, who was way too young when he died in the morning on November 19, 2014. 32 years old. All of the words that follow are about me and my experience, because that’s what I know. But my thoughts right now are with Louis and his family.
When I was first diagnosed with ALS, I could still walk. I was scared—very scared—by what I was learning about the disease, but it hadn’t truly started affecting my life and my autonomy. I drove myself to doctor appointments and walked down the long hospital hallways. On the day my nephew was born, I was able to rush to my sister’s house first thing in the morning while the rest of my household slept. Scarlett and I still went to parks and out for pancakes after her morning swim lessons.
But ALS just takes and takes. First my feet and legs continued to weaken until I gave up my cute shoes, gave up driving, gave up dates with my daughter and quick visits to see friends. And now my hands and arms are heading in that direction. What abilities do I lose as that happens? Opening a water bottle or filling a glass when I’m thirsty. Pulling myself into a standing position. Typing. Using a fork and a knife. Turning the pages of a book I’m reading to Scarlett.
Losing your independence affects your pride and your self-esteem, but it also affects the people around you in such a major way, and this is a terrible fact about ALS. I hate the basic things about this: that it’s costing money that we’d rather save or spend elsewhere, that it means Rob doesn’t get to relax after a long day at work. Instead he comes home and goes right back to work, doing the things that I used to be able to do for our family. What I hate even more is when ALS forces families to adjust to life in the absence of someone who was necessary.
In a lot of ways, people with ALS become observers rather than participants, and we adapt to that. We find ourselves feeling really, really grateful for the ways in which our bodies haven’t totally failed us. If we can walk, we’re so lucky. If we can make ourselves a meal, time to celebrate. If we can breathe on our own, we’ve got it made—at least for the moment. Unbelievably, not everyone is quite so fortunate.
I am fortunate. At this very moment, my husband is making dinner. My daughter is playing on the floor by my feet. I am using whichever fingers I can use to type this, and words are appearing on the page. I’m doing this. I’ll still be doing it tomorrow, to the best of my ability.
A Buddhist nun once told me that to deal with the uncertainties of life, one must go beyond hope and fear. It’s sort of a state of acceptance, which, to me, is not the same as giving up. This is something I think about a lot, as I try to figure out how to get through this without losing my mind. When faced with limitations we never thought we’d experience, or the premature deaths of people we thought would outlive us, maybe going beyond hope and fear is the best we can do.
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I just can tell that I send you a big, big hug.
You are an inspiration. Really you are. I suffered a stroke on 10/28 ~ and while there are no physical side effects, I am unable to work or drive. This, prayerfully, is temporary. I see a neurosurgeon next Weds to determine if a CT or MRI or both are necessary to see if I can resume work and driving.
It is easy to fall into the self pity mode. The world revolves around us in a normal state and we cannot participate. I have it easy, by anyone with ALS’s standard. I had a friend pass a year ago Aug from ALS, and it’s so awful to watch, let alone have. He was strong and brave until the end.
His hope was in Jesus and His perfect plan. That is my hope. I pray that is your hope.
Sarah, I admire you and enjoy reading your blog. Your insite has helped me as I am sure it has helped others. My husband of 32 years was diagnosed with Bulbar ALS in January 2012, he had symptoms for almost a year before he was actually diagnosed. Our first clue that something was wrong, was often when he was tired his words would slur. At first the doctors thought maybe a mini stroke, I wish with all my heart that was the problem.
He now has a feeding tube and a diapharm pacer. He has given up a construction business he started in his early 20′s, he was a master carpenter who made the most beautiful furniture and specialized in custom design and the construction of hardwood staircases. Played hockey 3 times a week, is the wonderful father of four and grandpa of 5. He is only 53 years old.
ALS is an evil thief, it needs to be caught and destroyed.
Until it is, keep your head up, your sense of humor and hold the love from friends and family tight – that is what is keeping us going.
God bless you and your family ❤️
Your blog is amazing. You have a gift and I am glad you are using it.
xo
Thank you for being so inspiring and sharing your journey. It is effecting and touching more lives than you can ever know. You are wise beyond your years and are a true inspiration. You cause so many to reflect on their own lives and to be grateful for our blessings. Thank you for sharing!
May Louis be resting in God’s Loving Arms
And Peace hearts for his family
To you Sarah
Prayers Love Hugs
You are an amazing warrior of kissmyALS
An inspiration , your blogs help so many , of our ALS Family
I am 56 , DX April 2014, starting with right drop foot
Every day a new sympton.
Praying daily for a Miracle medical breakthrough ,
Peace to your Heart Prayers for your family
I read your posts, Sarah, and am humbled by your gifts as a writer, by your courage, your humor, and your honesty. Thank you for sharing your perspective and providing this opportunity for others to learn and grow through your insights and experiences.
You are so brave. I’m glad you can still type. You will still be brilliant if you can’t. I’m sorry this is happening to you and your family, but I understand acceptance and am glad you have your family to help. Life is just not fair.
Thank you for sharing so honestly, humbly, openly Sarah. You are an inspiration and are in my thoughts so often. Sending you guys a ton of love.
Hope + fear = taking one’s focus out of the present moment. To give up these things is to embace the bardo of one’s life. In bardos are the greatest opportunities for growth and healing.
May a cure arrive.
May the love in your life overflow and wash out all worries.
Thanks for writing, Sarah. My sister was diagnosed last Dec. 2013. We are living with this disease as you are. You put in words just how it feels. It helps to know we are not alone.
I’m always moved, Sarah, by your Insights, your candor, and your powerful writing. Thanks for sharing.
Sarah~ You’re such a beautiful person & writer. I continue to be inspired by each & every piece that you write- by your openness & honesty. I’m so sorry for your losses and sending you so much love.
Hello, Sarah! You’re dealing so well with a really bad situation. Gosh, life throws strange and awful punches. Just wanted to say I always liked you so much as a young student. Your whole family is so beautiful.
I wanted to go to Fitzgerald’s tonight, but didn’t make it.
My thoughts are with you. Thanks for being an inspiration to the rest of us.
I now realize how very lucky I am to be in good health, but I also know (at age 74), my body will eventually give out.
Sending love…………
Your old music teacher!