When I was first diagnosed with ALS, I wasn’t sure I really wanted to talk to anyone else who had it. I was in shock, and I wanted to hold everything close to me, including my particular situation. But as time went on, and my disease progressed to the point where it was affecting many aspects of my life, I realized that I needed support from people who truly knew what I was going through. I tried to ask a few questions at ALS forums online, but I found the responses to be harsh and negative. I asked my doctor to introduce me to other patients who were young and who had kids. And when I wrote an essay on parenting in The New York Times, people with ALS reached out to me.
I struggle with the words to explain what it has been like to find people who are also experiencing this disease. Our lives—and even our symptoms—are different in many ways. We are spread out across the country. We wouldn’t know each other if not for ALS. But now we are going through this, apart-but-together, and it’s a source of comfort to know that. We can ask each other questions, some of us can talk on the phone, others send notes of support and encouragement. Sometimes we are angry and we can just be angry together.
I don’t want ALS. I don’t want anyone to have it. But these people I’ve met, they amaze me. They are raising kids, being partners, working, writing, laughing, finding ways to take care of their families. They are living.
There’s a new Face of ALS on the site today. I wish it weren’t true. It would be so much better if there were no new faces of this disease, if people hadn’t been diagnosed yesterday, if they weren’t being diagnosed right now. But the fact is, every day people get ALS. It does not discriminate, and, no matter what you might hear, it’s not an old man’s disease. It’s my disease. It’s Beth’s disease, Stephen’s disease. It’s Trickett’s. Brian’s. Richard’s. Jodi’s. Royce’s. And it’s Jay Smith’s disease.
Jay is a 36-year-old man who was diagnosed a mere 4 months ago. He has a wife and two young daughters, and has founded the nonprofit organization 90 Foundation, a reference to how often someone is diagnosed with ALS and someone else dies from it—every 90 minutes. That’s a tough statistic, but Jay is unflinchingly optimistic. He is absolutely certain that he will survive ALS and watch his daughters grow up. I love hearing this. It doesn’t mean that we don’t have our hard days, that we can’t vent or feel angry. But it does mean that there’s hope. Jay Smith is going to keep fighting. So am I.
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Thank you again Sarah. I had read Jay’s presentation and it is samething that definetelly many of us have to think about it.
His words: “The truth is that once you accept the fact that life is terminal, no matter what your health condition is, everything becomes more beautiful. I know I’m going to die someday, but it won’t be from this” are truly inspiring.
Many thanks,
Sarah I just found your blog on Jay’s facebook page. My dad was diagnosed in October 2012 so we are nearing the 2 year mark. I applaud your outlook, the more ALS patients I find/come in contact with through social media the more I feel we are all one big family going through this awful ride together. I know my family gains strength from reading about other pALS like yourself. The will to live is so strong in everyone and the fight is so powerful. I wake up every day hoping for a treatment or cure. I wish the same as you that no one had ALS but finding things like your blog are the positive, happy parts of this awful disease because I know my dad is not alone. Sending positive thoughts and love to you and your family! Xo
Thanks, Melissa! My best to you and to your dad.
It is so true Sarah. it’s so awful to hear about people in their thirties and twenties being diagnosed I thought I was young, but that just feels downright wrong. I know two young people who killed themselves in the last week with healthy bodies. What we do to have our bodies back, even for one evening.
Hello Sarah,
I am glad you are so positive. I lost my husband Nov. 9, 2013 to ALS. He was 57 years young. We had so many things planned for our retirement to do together.
He fought hard like you. We miss him so much.
Keep posting and sharing your happy and even sad days. We are here for you. Talking
with people and sharing keeps you going.
When he got his computer so he could talk
to family and friends he was so excited and
kept his spirits high!!
It’s the little things in life that keep you going
day to day. I join these groups now in his memory. He would love this. I tend to ramble but just really wanted you to know I have you and all the others in my thoughts and prayers everyday and always will.
May God Bless you today and always.
Prayers,
Theresa
Thank you, Theresa. I’m so sorry for your loss.
We lost our friend Mark Sawyer a year ago on the 16th. He fought hard for 9 long years. He was such an admirable man and was 55 when he passed. A godly man and is now walking the streets of gold pain free and without ALS. Grateful for that knowledge and comfort. May the God of the universe grant you the peace that only He can provide. Blessings, and thank you for sharing.
Amen, brother. I feel exactly the same way- my gut is telling me I will not die from this disease and I will see my young girls grow up. I am fighting like mad by trying to improve my whole body health- via diet, supplements, eliminating as many toxins from my environment as I possibly can, and trying any and all “alternative” treatments out there, no matter how crazy:)
My 45 year old son was diagnosed with ALS in May, 2014. Big and strong, but I am learning ALS is no respecter of persons. Kevin’s onset that led to his diagnosis was bulbar palsy. His speech is already compromised. His legs are rigid, but he is still walking and continues to work full-time. His strong-will, faith and determination is an inspiration. All of you are inspirations.