Hi. By the way, Christmas is in like a week. Every time I think I’m ready for it, I realize there are nine new things that need to happen before next Friday. It’s a funny time of year, definitely one of the happiest for me, because I have such fond memories of Christmas growing up, and because it’s so much fun to experience the holiday through Scarlett’s eyes.
I love sending holiday cards, love when the tree is decorated, love when I can find the perfect gift for someone. But all of that is certainly made more complicated by ALS, and the weakness in my hands that is really getting in the way of this year’s progress.
So far I’ve had lots of help: a lovely and talented friend who volunteered to take our family photos, people to enter addresses into my computer when my hands got tired, Rob and Scarlett who decorated the tree so beautifully, the Internet and its unlimited gift possibilities. Also wine. And straws.
When you are living with ALS and a big holiday approaches, you are sort of forced to contemplate whether it’s your last one, or if it’s the last one where you’ll feel really good, or some variation on that theme of the terrifying unknown. I’m not letting that happen to me this year. Despite the moments of stress as I try to make this a really special and magical holiday, I’m enjoying myself. I refuse to focus on how many more Christmases or how many more birthdays or how many more Pulaski days lie ahead of me. Where’s the fun in that?
Tomorrow is Scarlett’s holiday sing. She’s been practicing, and is so excited for the big day. Last night over dinner, she told us the story of Hanukkah. She really nailed it, with a nice amount of suspense and wonder, and only a brief diversion into a 21st-century battle scene where a lot of people “got dead.” Happy Hanukkah, friends. I hope it was a beautiful holiday.
Because there wasn’t enough going on this month, we had another film crew here this week. It’s a different group working on a different documentary profile of my family and our experience with ALS, and I will share it when it’s available, as long as you promise not to make fun of me for anything dumb I may have said. Sitting in front of a camera answering questions about my life and my outlook on life turned out to be more fun than I expected. I was able to talk about all the good things that have happened, both before and since my diagnosis. There were lots of difficult things I had to talk about, too, but in some ways they just underscored the brighter side.
I laughed when the interviewer asked me, “What do you hate most about ALS?”
“Everything,” I said to him.
And although that is true, there’s a deeper truth as well, which is that in a very weird way, I’m grateful to ALS for giving me a perspective on life that I may not have had otherwise. In part, of course, this is just me trying to turn a negative into something positive. Obviously I would rather not have this disease. But I do have it, and I see it as my job as a mom and as a grown-up in the world to rise to the challenges placed before me, however heinous and outlandish they might seem. To set a positive example. To get the holiday cards out on time. And then to let someone pour me a glass of wine while I sit by the tree, celebrating.
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I want to see this documentary!!
As you say, you would rather not have this disease, but really Sarah, you are really especial. Probably you were pretty good at living before ALS, but not everybody is capable of carry on the way you do
I hope you and your family have a wonderful Christmas.
ALS touched those in my family several years ago when my motorcycle riding, athletic, muscular Dad was diagnosed with it.
I love reading your posts and have the utmost respect for your honesty and ability to try and see the good in every situation.
Sending positive thoughts your way.
Sincerely,
Carol Hall Rivera
Love, love your post today. We all have highs in our lives and extreme lows as well – your writings of daily tales from your own life are always uplifting. I do believe that the great highs we all experience in life are born from the great despair we all experience as well. I look forward to you witty posts every week. Though I don’t know you personally, I love you – for sharing your journey and your positive outlook! (from a local Oak Parker and friend of Carolyn Miller)
Cheers Sarah & to the rest of your wonderful family! Happy Holidays to All:)
You know how to express the thoughts of all of us “living” with this disease. Thank you…..be happy during this holiday season. In my prayers
Sarah – I get what you mean when you say ALS has given you a perspective on life you may not otherwise have had. Even those of us closest to you can not comprehend what you are going through. Or at least I can’t. I try to put myself there and I feel it sometimes when I read your words, but I know my body still works. Even with the #whatwouldyougive campaign (which was awesome by the way…) I knew in the midst of my struggles that I still had those capabilities so it’s just not the same. I wish I could appreciate those things more and I just want you to know that you make me try even if I can’t feel it the way you do. Love you so much. UJ
Sarah, love, love, love this post. And your beautiful holiday card arrived today. Gorgeous-! All 3 of you humans as well as Otto.
Cheers, have a glass of wine for me..
Love you all!
Beth
That was so great. You are so blessed and we all. Love you for just be Sarah.
Uncle Jim
Wishing you all the best, Sarah. Eric Rutter, former Reed Business colleague of Rob. Send my regards to Rob and your beautiful little daughter.
Sending holiday blessings to you and your family. My husband had ALS and you just seem to put it all in perspective for those of us living the life with you. Hope this time is great and memorable for all of you and hope all goes well. Enjoy each and every day. Scarlett is such a joy.