I remember the day I met you, suddenly standing in the entrance to my office, wearing a suit and seeming somehow gorgeous and accessible at the same time. I remember the first time we talked on the phone, a conversation I cooked up just to hear your voice. How you used to drop the names of authors, how I used to feel so sure. You were like a magnet, like flypaper. Get away? I couldn’t even look away.
And then it was all airplanes and dinners and borrowing your sweaters and learning about wine, and trying to cook things to impress you. I had a chunky blue iMac which I used as a stereo, and I slept on a futon, but at least I had my own place. I was 26, trying to be a grown-up. You were 38, you were definitely a grown-up. You lived in an apartment with two bathrooms, the definition of success in Manhattan. You took me to shows, to tennis tournaments, to a B&B on the Jersey shore, even though you hate B&Bs, too much floral decor, way too much socializing. You met my family and danced with me at a wedding. I wore a black dress and we looked out of the floor-to-ceiling windows and you told me you loved me.
We went to France, and England, where I met your family and ate parsnips. I learned how to cook, something besides Trader Joe’s couscous and salmon in parchment paper. I was content, and I learned that when you were quiet or agitated, a large Starbucks cookie–preferably with M&Ms–would do the trick. (You claimed not to have a sweet tooth, but I still know what happens when ice cream is left in the house.) You tried to buy me shoes, but I was too proud. You bought me everything else instead. We went to Costa Rica, rode bikes through a little town, ate plaintains and drank cold beers on the beach. We played backgammon in a tree house until it was too dark to see. And I was still so sure.
We sat outside an art deco hotel in South Beach and talked about getting married. The piece of paper didn’t matter to you, you wanted to start a family. But I wanted you as my husband. I wanted a ring, that delicate sign of commitment. I went to Mexico on a yoga retreat. You didn’t write, I didn’t call. We were disconnected. It didn’t matter. You bought me a ring and gave it to me in the apartment with the two bathrooms, and the two cats, and we went to Martha’s Vineyard and drank martinis. We went fishing and discovered that your stomach is stronger than mine. We went to DC and ate cupcakes, we went to Whistler and skied and played travel Scrabble.
We got married in Central Park, and I was so happy. We wanted a baby and I spent a weekend in Las Vegas fake drinking, just in case. I was pregnant on our first anniversary, and we decided to move to San Francisco. We bought cars, which I was terrified to drive in and out of our minuscule garage. Our bedroom overlooked the backyard, and we slept wrapped together. Our baby was born, and you would come home from work and find us napping. You told us how cute we were.
When I started to fall, you laughed. Don’t feel bad. I had never been clumsy before, you thought it was funny. Neither one of us took it seriously. That’s why I was alone when I learned that I might have ALS. I was alone when I lost our second baby two months later. I don’t like to talk about that, but it is part of the story, because I was sure that as long as I was carrying that baby, things were going to be okay. After that, we understood that our situation was not good. You were there when I got diagnosed, and you were there for the second opinion, and you told me that we would make the best of it. That we would have a good life, no matter how long or short it was.
And now our only child is six. It’s been too long, gotten too hard. People ask you how you do it, and I know you’re not sure. You feel like you’re underwater, not sleeping, not having very much fun. My certainty has abandoned me, I don’t know where to go from here. I know once we had something that was right and working. And now? I love you, but I’m not myself. It appears you’ve noticed. You are not yourself, and I can’t fix it with a meal or a back rub. We are not ourselves, that imperfect couple who nevertheless had a vision for the future, who planned to walk (or run, or bike) the path together, just to see where it took us.
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Wow, wow, wow.
I just want to hug you. Not only because I think you need it, but I need one too. Things are changing and it’s hard to decipher it all. Thanks for being honest and open. I wish I could offer you something in return…
Your blogs are amazing .. I’m 43 and lost my husband who was 42 at the time just over 2 years ago to MND ( that’s what we call ALS in Australia) … I haven’t cried for a while but your story today made me cry but I think I needed to today
Thankyou and stay strong
Im breathless. I want to squeeze you so badly. so perfectly imperfect.
No words can express my thoughts!
Dear Sarah,
This post touched my heart deeply. I want you to know you are in my daily prayers. I pray you find strength, peace to continue this journey. You’re truly loved!
Angie
Oh, dear Lord. Lift this beautiful woman. Lift her family and those who love her.
Sarah: I am always moved by your willingness to include all of reality in everything you write about in this blog and how you trust the truth that needs to be named and told.
I will be carrying you with me (and my dear friend Paul M. who introduced me to your blog and who also has ALS) as I do an ALS walk in Rehobeth Beach this Sat.
Blessings,
Kerry
❤️❤️❤️
You are strong, your words are deep.
Sarah,
Your words painting a remarkable story of unconditional love & strength. Thank you for sharing. I lift you in prayer for a treatment & a cure. Someone I love needs a cure too.
Godspeed,
Rena
❤️
You are so brave.
You are an awesome person. You always tear at my heart. I just want you to know that no matter how long my husband had ALS, I would never stop loving him or caring for him. He “only” had it for about 2 years but please don’t think you aren’t loved and cared about. I know lives change and, unfortunately, there is not much we can do about it except hope and pray for a cure. Hang in there and don’t give up.
That was quite the teaser to pull me in to stop and read. I love your blogs, but they are hard to read. Because if I don’t read every one I can pretend for a little while that this isn’t happening to you and so many others. I can perseverate on the same questions and doubts with MY husband that I have the blessing of time to fix. I appreciate that you help me regain perspective in such a real way. I hate to see one more drop added to your already overflowing cup.
You are such an amazing person and your family is in my prayers. God bless you! Such an incredible writer. I am speechless.
So powerful. Damn. I am reminded of a Bob Marley quote.
“You never know how strong you are until being strong is your only choice”
❣
I don’t understand why it has to be this way. So many of us with ALS have gone through this.
Thank you for having the courage to share this. I wish you and your family all of the best.
Sarah, I’m a friend of your Mom’s from Trinity. I find your writing to be so honest. It absolutely has the power to bring me into your life in a very small way. You and your family are so in my mind, my heart and my prayers. Keep on!
Big, big, big hug Sarah. You are in my heart, my daily prayers.
Wow. Where to start? First, your capacity for vulnerability is breathtaking. Your vulnerability is a source for so much love, connection and truth within the community that you have created. The stories that you weave so beautifully, both in the re-telling of the past and the articulation of your present feelings, leave us always wanting more. I hope that the place you and Rob find yourself right now, unimaginable in its hardship, can be a base to move forward with a singular purpose to love and be loved. We are rooting for you Sarah. We hold you in the highest esteem.
This is the hard road you are both on. But tell yourself, that this is what your vows mean, in sickness and in health, all that. It can’t be easy, keep looking to him and in the ways that you can he knows you love him and he you. I am keeping you in my thoughts and prayers.
Sarah, As a school chum of your mom’s, I write to say thank you for being your imperfect self and sharing these words you share. Your strength is remarkable. Even if it is just your eyelids to see things and somehow write it out, keep on. We are afraid too. We (I ) say prayers and they do help – maybe you, maybe your family, maybe another ALS person will be the beneficiary of so many prayers. I know this for sure. The book I am currently reading states: “Open your eyes and look before you can’t anymore”. This speaks to me – to remember we all go home soon enough. ((Hugs)) from afar – Jackie Sbarboro Swiss
Dear Sarah- I was 27 and engaged to my 43 year old fiancé when I was diagnosed with metastatic cancer. I was also alone when I received my devastating diagnosis. I had asked him to accompany me to the doctor that day but, at that point in his life, his work was his priority and we, also, could not have predicted the devastating diagnosis. Nevertheless, I was angry and maybe even resentful of his choice. 18 years of surgeries, radiation and therapies later, and the blessing of our legacy of our daughter, I realize that finding my voice and confidence to tell him what I really felt (the shock, the desperation, the feeling of hopelessness coupled with the anger and resentment of his lack of support at different periods of this span) was perhaps the single most important lesson learned for me. May you find your voice and the confidence to get you both on the same track again. You guys can do this. Meanwhile my routine annual scans have led me to an upcoming surgery scheduled in the coming weeks. I will fight this battle anew and my husband will be right there with me….
Sarah, Not to know who you are anymore and even where you and your husband are in this life’s journey has got to be so impossibly hard, so confusing and troubling and stressful and strange. Just the contrast between the early days you write about and the present so painful. How could you possibly know the answers anymore? I hope in writing your beautiful love letter to your husband about your grief as well as his and the day to day weariness you both feel there was some little relief, some bit of joy, some small transcendence, some bit of peace.
….And to your Dear Husband, Rob- a gentle reminder that ultimately, life for all of us is way too short. Refresh and re-set. Treasure the love you have achieved together while you can. After all, none of us really know how long we have on this earth, right?
I am 16 months a widow…I hate ALS…When I hugged my love as he lay in the hospital bed, I told him he had been cheated. He said…oh, no…not many people have had a love affair like we have. I am still mulling that over as I lost my dear man…xxoo to you and yours…
Sarah -
I don’t know you but I read your blog posts often (my friend Stephen who also has ALS is a big promoter
). My father had ALS and died when I was 16 – too young to really know him; too young (self-centered) to realize what it is to be a parent and worry more about those left behind than yourself. I don’t know that I have anything to say that is uplifting, or helpful. But I want you to know that your writing and insight has helped me revisit my father and find, in my everyday memories, moments of strength and dignity that I perhaps never saw before. Like the time he literally pulled himself up a steep set of stairs to see me perform in a play, because there was no handicapped accessibility; and how he would ask about our days at school with such hunger and light in his eyes. Your writing is beautiful and raw and touching and, despite not knowing you, I am pulling for you and hoping for each and every day you can squeeze out with your daughter. Love to you.
God, Sarah. It’s taken so much from you and this is beautiful and tragic. I love these memories and I love you and Rob and I’m so sorry, my dear friend.
Your story is so similar to my wife’s and I. 8 months after our second child, she was alone when diagnosed with ALS. Its been a tough time since. She I sleeping next to me in her chair right now and means the world to me, an dI would do anything for her, but we are different people then who we were two years ago.
Thank you for your blogs.
Sarah, my heart breaks for you. I lost my amazing aunt to ALS several yrs ago. I too suffer from an illness that challenges my husband & children every day. It is not terminal but it is debilitating. I wish you & your family all the best.
Sarah, you are so beautiful and amazing… I’m so sad for you and Rob and want you to know I am hugging you from River Forest. I’ll never forget that day Dollard and I ran into you and Rob in Miami. So random! You were getting ready to go on a cruise and were clearly madly in love with each other! I took you aside and urgently told you HOW CUTE he was! And you kept saying “I know, I know…”
I think of you guys all the time and little Scarlett as well as she is learning the ropes of first grade with her mom there cheering her on. Please don’t doubt yourself, you are doing the best job possible under impossible terrible circumstances.
Love you,
Beth
Hello from your hometown. What a beautiful love letter to your husband. He is lucky to have met and married you. Although we all pray for a cure in our lifetime, we also might pray for the grace to accept our lives. You personify that grace. Thank you.
People and marriages evolve, not always in favorable ways. Chronic, progressive illness merely accelerates and escalates those inherent challenges. It certainly doesn’t help that you’re so incredibly young still.
This disease is so wrong on every level.
Beautiful writing about such difficult times. What a gift this is to your husband.
Sarah,
Each time I read your blog post, I wish I could give you something back, because you give me so much my friend. You are one amazing woman !
Hugs and a big God bless
Holy. Shit.
I walked right out the door at work yesterday when I read this. And then got up and read it again this morning. One of the bravest, most heartrending pieces I’ve ever read about a disease (and life) moving in and stealing things you thought untouchable. Hope you know how your efforts to convey your truth are beautifully, untouchably impactful. Like, pow.
Even from afar and only through the page, you’re just a stunning human being.
Beautiful Sarah! What a beautiful love letter to Rob but also for Scarlett to see what love is, “in sickness and in health.”
Your words paint such a beautiful picture. <3
You’ve taken my breath away, Love.
Happy Anniversary
I had a nephew, Kevin who had ALS.
Shy Tuna ( on Facebook) has been our inspiration. He has ALS but travels all over the country visiting people with ALS.
I HATE ALS AND DEMENTIA!
Enjoyed your story and admire your courage.
Oh Sarah, I love you and I hardly even know you. What a lovely gift these blog posts are. Thank you.
Once again, I read your blog, my heart stops. Then I will read it over once again to be sure I am not misunderstanding or projecting anything into it. Then I realize I read it correctly the first time. I cry and I can’t stop. My brother Scott has had ALS for 12 years. I live across the country so I can’t always be there to help care for him. It has now become a 24/7 job. I recently spent 5 days with him, helping to take care of him while struggling to understand his wants. I started to become frustrated when I felt like I didn’t know what he was asking for or what he needed. I felt like I was failing perhaps one of the most important things I will ever get to do. Take care of my brother. My older brother. My larger than life, ex vet brother who was always 10 feet tall to me. I was ashamed of myself and angry at myself for giving my discomfort or my uneasiness one second of thought. Some of my family have realized that they aren’t caregivers. They tell me they can’t see my brother in his current state because it is too hard for them. I am angry that they feel like they have a choice. Family takes care of family right? For better or worse, like a marriage right? You don’t quit. You don’t give up. You persevere. You suck it up. You put on your big girl panties or big boy panties.
Then it comes to me. We aren’t all the same. We can’t all handle difficult situations the same. I am judging family members because I am able to continue caring for my brother anyway I can and they are not. I think they must be selfish or weak for not helping, not wanting to help. I think they are horrible people for abandoning someone when it becomes too difficult. I confront them in my anger and exhaustion for their selfish ways. “What is wrong with you” I yell at them. “How can you look at yourself in the mirror every morning knowing you have stopped coming to spend any time with your brother because it makes you too uncomfortable?”
They cry and say “I just can’t. I feel helpless. I’m not strong enough”. I have finally decided that this is reality for them. It must be.
They tell me of the times they have driven to his home and sat in the driveway unable to get out of the car because of the fear of going in. “What do I say?” “What do I do?”
I have no answers for them.
Thank you once again for sharing your story. You are an amazing woman Sarah.
Beautiful post about an absolutely real love story. And I’m sorry to hear about your loss…
Have you put together a book yet? Because your posts
touch us all on so many levels. I live with a debilitating but not terminal diagnosis, and I see myself pushing on after reading your posts because you are pushing on!
Kelly Murphy – I feel exactly the same way as you do. My husband passed on 2-2-16. We have two sons, 17 and 20.
I’m still angry at people who “just couldn’t handle” helping out – some family members included.. Well, I didn’t know I could handle it until I had to. My teenage sons were awesome caregivers. My husband said he would have given anything to see them grown, but he already knew what kind of men they were going to be by their daily care, all the while keeping their grades up and playing soccer.
I’ve recently talked to them about really understanding the marriage vows. I now know all about the “in sickness and in health, till death do us part”. ALS is truly one of the most horrific diseases on earth.
Sarah – I cry when I read every one of your posts. Just know that I do hold all three of you in my heart. I understand.
Sarah, my heart aches after reading this. My eyes are full of tears. I cannot imagine the depth of pain, frustration and despair you must feel. I remember when I had chronic fatigue syndrome years ago. I was severely exhausted all the time. I remember thinking I didn’t have a personality any longer with chronic fatigue. I didn’t laugh, I didn’t get excited, I didn’t care about what others cared about. I was too tired to talk or listen. I felt like I didn’t know myself as a sick person. I felt I had lost myself. I prayed and prayed and would repeatedly tell myself “I am not my body. I am not my sickness. I am a child of God. My true, eternal Being is pure goodness, pure love and abundant energy.” None of us are who we think we are in our human form. We are so much more. I pray that your eternal true Self shine brightly to guide you in your life, and help you, especially in your difficult moments, and that the same happen for Rob. I am sending lots of love, prayers and positive energy to you both. God bless you and give you peace. Love, Cherryl