Sarah is Old

It’s my 40th birthday. This morning I woke up in a hospital bed in a hotel in California’s wine country. The hospital bed was crucial to the trip, so that Rob and I could get some sleep. But of course there is something extremely messed up about spending your 40th birthday in a hotel with your husband in separate beds. Especially when your bed has rails.

I asked Rob to bring me to Calistoga for my birthday because the wine country might be the longest love affair I have ever had. The first time I came here was November 4, 2000. My 22nd birthday. I knew nothing about wine, except that I greatly enjoyed it, and so my boyfriend at the time and I went to all the places we had heard of (meaning all of the places that sold cheap wine in Madison, Wisconsin.) We had an amazing time. This is my happy place.

The first time Rob and I traveled here together was in 2005, and the wine education I received on that trip blew my previous experiences away. My husband turned me into a knowledgeable wino, a snob who will no longer drink Chardonnay. I think even he was surprised by how quickly I transitioned. Keep in mind, I was 26 years old and very impressionable. “I’ve created a monster,” Rob told me more than once.

It is hard to travel, although we have figured out ways to work through the greatest difficulties. Riding in the car is incredibly uncomfortable for me now that my neck is too weak to hold itself up on winding roads and even in the city with all of the stops and starts. We’ve rectified this situation by bringing the BiPAP in the car so that I can lean all the way back and breathe at the same time. How times have changed. I was always the one on road trips who was belting out the lyrics to every song we listened to, the one making inane conversation. Now I am silent behind my mask, an oddity for other drivers who glance over and then double take. I can only imagine that in my wheelchair and mask I look like a very very sick person.

We arrived on Friday and, for me, the trip has been perfect. The weather is amazing, the food delicious, and a random woman kissed me on the forehead, which is somehow a thing that happens to me, although it never happened before the wheelchair.

But this sort of trip is challenging for Rob, because he is the sole caregiver and bends over backward to make sure I have everything I need. I don’t weigh much, but it’s still heavy lifting. Every sip of water, every foot adjustment, every bathroom trip. I don’t know what ALS kills faster: motor neurons or romance. Sitting by the pool, I look across at all the women in their bikinis, legs stretched out in front of them and shoulders that don’t look like they belong on a starving alien. I can’t help remembering when I looked like that, and I have to push down the slightly nauseating feeling that Rob should be with someone else entirely.

On the other hand, I have made it to 40. So that seems worth celebrating. This afternoon we will drive home, and my family will be waiting with a pasta dinner and more wine. The kids will dance, and I will feel lucky that I actually have two happy places. One, the beautiful valley that keeps my glass half full, and two, the family and home that keep my heart (and my glass) completely full.

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32 thoughts on “Sarah is Old

  1. Bob hebron

    You just keep enjoying whatever you enjoy whenever you want. Your contributions to your family and ALS community peeps merit whatever comes your way from others.

  2. Robyn

    Happy 40th Sarah!! Thinking of you and so glad to hear you are in a special place celebrating your day! ❤️

  3. Beth Carey

    Oh Happy Birthday to you my darling!! What a great walk down wino lane-:) I feel like I was there with you.

    Much love to you and Rob and Scarlett, enjoy the pasta dinner and being with your peeps.

    Love you!


  4. Emily

    God bless you. I wish you peace and comfort through all of the difficulties ALS brings. I participated in the ALS walk in September in Columbus, Ohio. It’s a dreadful disease, one that took my brother and dear friend from me in January. My brother did find some relief of his symptoms from a stem cell treatment and some type of photon light therapy. Maybe youd find it helpful too. I’ll pray for you as I’m sure many are. Dont give up Sarah!

  5. Amy

    Happy happy birthday! Every milestone is a victory lap. I’m so happy for you that you found a way to get to wine country. I’m sure it wasn’t easy, but may you bask in the memories on cold days ahead.

  6. Rick Storr

    Happy Birthday, Sarah. I am the main carer for my wife who has lived with ALS for 6 years. From being a super fit and professional nurse, she is now retired (age 60) and is mostly in a wheelchair. What helps us as carers is the indomitable spirit and joy of life that you ladies display. The romance doesn’t die, it changes for sure, into something deeper and comforting when we face this disease together. Best wishes to you and your family.

  7. Barbara Smith

    We always look forward to your posts. You have a gift of describing the challenges of ALS (and it certainly brings many) and alway sprinkle it with humor, much like Jay. Happy Birthday. You certainly capture the essence of life and we love you for that.

    Barb and Gene Smith

  8. Terri Franke

    Happy Birthday Sarah so glad your weekend was full with so much joy! You continue to inspire me with your amazing outlook, keep finding the joy!

  9. Linda Belpedio

    Happy 40th Birthday, Sarah! I remember coming to see you the day you were born. Your mom missed my baby shower that day, and when I called to ask if everything was okay, she invited us over to see you. When I had Kristen, a few weeks later, I was glad you and Kristen would be able to be friends.

    Much love to you. So happy you got to do something special for a special birthday. Please give our love to your family.
    Linda and Doug

  10. Liz

    II was thinking of you off and on today, wondering if I’d missed a post of late… I searched out your blog and viola! TODAY is your birthday! As mentioned earlier, you are such an inspiration to others! Know that you’re in the hearts and minds of so many people. God Bless and happy birthday!

  11. Brooke

    Also on FB: When I close my eyes I see you in your bikini body and you’re fucking gorgeous. 40! Yes, it’s worth celebrating. Happy birthday, Dear One!

  12. Mary Kay Grant

    Happy 40th Birthday Sarah:) Happy to hear you had a wonderful birthday getaway — enjoy the pasta and the family together — Hugs, Mary K Grant

  13. Jackie Robin

    Happy Birthday, Sarah. You and Rob are a beautiful couple. I am certain there is nowhere he would rather be than with you even if that now means you and all of your ALS gadgets. A solo trip to the wine country-incredible! Makes my heart full to know you had that time together in a favorite place celebrating a milestone birthday with your daughter and more family waiting for you at home. Cheers to all of you. With love, jackie

  14. Karen Kramer

    What a beautiful post. You are such a great writer and I really enjoy reading these. I hope the ‘monster’ got plenty of wine for her birthday!

  15. wendie

    Love you, my favorite wine snob! Happy Birthday, I raised a glass to you (but I’m not entirely sure you would approve of what was in the glass). I was also wearing yoga pants but I was inside my house, so I think we’re still friends.

  16. Bruce Harken

    Mark Thompson and I were just talking today about him picking up your Mom and Dad from the airport. He said your birthday was this last week. Happy birthday!
    Bruce Harken

  17. Patsy

    Happy birthday Sarah. I have followed you since my own diagnosis almost two years ago. Boy, am I jealous about the wine! Absolutely love it, but no food or drink has passed my lips for half a year now and I was salivating as I read, thinking about all the wonderful food and drink the wine country had to offer. Good for you for going and what a wonderful birthday gift. Your writing and your fortitude inspire me. Thank you.

  18. Noe

    Dear Sarah!!! Happy 40 birthday!!! It is worthy of celebration, no matter what. As many others have expressed here, I am always delightful to read yo, to know you keep going, “holding on” there. Lots of love :-)

  19. Cindy

    Happy birthday lady! Glad you had a great 40th birthday! We’re officially middle aged now! Idk what fall is like over there but it’s been beautiful here with leaves turning gorgeous colors. I’m sure you don’t miss the Chicago winters but I bet you’d love to see the leaves right now. Hugs! Ps-I never liked Chardonnay….

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