Saturday, October 13, 2012

From me to you

Dear Readers,
First off, thank you for reading the blog. Obviously, if I just wanted to write private letters to my daughter, I wouldn't do it on the Internet. But it's fun for me to share the moments in our lives and all of her milestones and antics, which is why I do it in this public way. Over the course of Scarlett's 2.5 year life, there have been things I have kept to myself (many of them involving potty training). Actually, I've often thought that I would take the blog down completely at some point while she's still young so that there's no (or little) chance of it coming back to embarrass her. Of course, I would save the letters for her. But for now, the purpose of the blog is as much to keep people updated on our lives as it is to leave a journal for Scarlett.

Which brings me to this next part. There is something major that I've kept off this blog, and I want to share it now. This summer I was diagnosed with a neurological disease called Amyotrophic Lateral Sclerosis (ALS.) You may know it as Lou Gehrig's Disease, or you may not know it at all. I didn't. I had heard of it, but really had no idea what it meant to the people who had it and to their families. Now I know far too much about it, and yet still not enough, because no one knows why I have it or how to cure it. It started last summer when I just kept falling. Such embarrassment! I fell going up the stairs, I fell going down the stairs, I fell when I was trying to jog, I fell when I was pushing Scarlett's stroller along a perfectly flat street. Rob was incredulous, but not worried. He thought I had too much on my mind, that I wasn't paying attention, that maybe I needed different shoes. My grandmother told me I was too thin. But everyone agreed that I should see a doctor. So I went to a nurse practitioner in September of 2011, after months of random falls. She did some blood work and a few weeks later, I got a letter in the mail saying that my levels all looked good and there was nothing wrong. I decided to try running again. I could get about three minutes into a run before my feet simply stopped lifting off the ground. It was ridiculous. I, who have run marathons, could make it only a few blocks. OK! ONE marathon. Still.

I had always envisioned myself getting back into running shape after Scarlett's birth. I joined a stroller fitness class when she was 6 weeks old, and huffed and puffed around Alamo Square and Buena Vista Park with a handful of other like-minded moms. It felt great. But I never really had a good, long, productive run. I wish I could remember my last good run.

I consoled myself with thoughts that this was something that would go away, that I just needed to get out there more often and train my old, achy body again. I had just turned 33. So on a trip to Chicago to visit my parents, I set off on a run to my grandma's house. It was a run I've done a hundred times, about a mile. When I was in good shape, I would run all through town, hit the high school track for a few miles, and then end up at my grandparents', high on endorphins and fresh air. This time, I couldn't make it more than two blocks before I had to walk. Determined to get through this, I picked up running again after a couple of minutes and bit it--hard--right across from my former junior high school. I had been out on my feet for about 12 minutes. With blood trickling from my knees, I decided I couldn't show up to visit Nana, so I walked home, angry and frustrated.

When I got back to San Francisco, I saw another nurse practitioner, who sent me to a podiatrist. I had decided that I had a pinched nerve, and the podiatrist thought that might be the case. He told me I wasn't using the muscles in my feet that other people used to run and walk, and that the problem was likely originating somewhere in my back. This, he said, might explain why I had been waking up with insanely painful cramps in my legs every morning. The muscles I was using were exhausted from doing a job they weren't meant to do, literally keeping me on my feet. The panicker in me did great with this information. I tiptoed out of his office and flung myself into the car, sure that I was doing more damage with each step.

The podiatrist said that the person I needed to talk to was a neurologist, so I did that next. I'll never forget that day, because it's the first time I heard the letters ALS as a possible theory for what was going on with my body. The neurologist, a second-year resident with zero bedside manner, watched my arms for what he called fasciculations. My arms obliged, over and over, though it was the first time I had ever noticed the twitches. After that, I noticed nothing else. Cramps, twitching, muscle weakness and atrophy: turns out it's the recipe for ALS, especially obvious in someone my age because there's almost nothing else it could be. We traveled other avenues, did tests, and even a three-month series of intravenous treatments to rule out some other kind of neuropathy. But nothing worked, and in June, the doctors found that the disease had spread from my legs to my arms. This allowed them to classify me as an ALS patient, albeit one who only showed signs of lower motor neuron disease.

At this point, nearly 4 months after that diagnosis, I can feel nothing unusual in my hands or arms. My disease is isolated for now to my legs and feet. It's getting worse there. Though I used to walk all over the city with Scarlett, I can now make it no more than a few blocks before my legs begin to quiver and my feet just won't lift anymore. At these times, I literally feel like I could be blown over by a strong gust of wind. What does this all mean for life with a rambunctious two-year-old? It's been tough. There are times when she doesn't want to leave the park or her preschool, and I know that any other parent would just be able to pick her up (not fun, but at least possible) and wrestle her to the car. I don't have that option, and so I find myself appealing to her in a rather unattractive way to please just help me out and walk to the car. It usually doesn't work. What does work is telling her that she can have a treat, so yeah. I never really wanted to be the parent who bribes her kid. But I never wanted to be a mom with a disability either. Compromises.

I have spent some time feeling sorry for myself, and more time feeling angry. I don't like that this disease is taking things from me, that it will take more before it's through, and that there's nothing I can do but "hang in there" as the doctor who eventually diagnosed me said. But I have come to realize that I'm lucky. I'm lucky that my brand of ALS is moving slowly, that I can still walk at all, that I can take Scarlett to music class and dance with her, that I can cook dinner for my family and spend an amazing Fall day at a pumpkin patch (pics to come.) I'm lucky that I have my incredible daughter, my patient, solid husband, my family and my friends. When all else fails, I think: what if it was Scarlett who had the disease and all I could do was watch? That usually shuts me right up.

This year, as tough as it has been with the waiting, the declines in health, and the ultimate news of my diagnosis, has afforded me time to get used to the idea that my life is not going to be the life I had planned for. And although I can't always reside in a state of calm and acceptance, I am working towards it. I will probably write about this more, maybe even start a new blog about it if there is enough to say.

I'm still hopeful, by the way. People overcome diseases all the time. Cures get discovered. I'm hanging in there. Still loving so many things about my life. Still thanking you for reading this.



  1. On so many levels, in 1,000 ways, you amaze me. Just add this post to the list. I would need my own "letters to Sarah" blog to list them all. I feel sick to my stomach reading the account of how it all began, as though in reading it I can somehow change the rest of the story for you. Some of it is new to me, and all of it paints a picture of how terrifying and isolating this last year has been. But of course, with humor and grace, as always. Thank you for sharing this story. Thank you for being you. As if you didn't already know it, I love you and your supremely awesome family so much. Being your friend makes my life better, funnier and lovelier.

    1. I am Katrina, I was diagnosed of ALS (Lou Gherigs Disease) in 2017, the doctor told me there is no permanent cure for the disease, i was given medication to slow down the progress of the disease, at theinitial stage it was not so bad till it progressed to the end middle stage were i had difficulties going about my daily functions as i constantly felt weakness in my legs, ankles and feet, i was totally devastated till my daughter’s co-worker told us about a herbal doctor called Dr Edidia who have herbal medicines for all kind of diseases including ALS, i contact him and excplain my problems to him he prepare a herbs for me which i order, i recieve his medicine through UPS and i take it as he instructed this herbal treatment was my survival i'm really glad am now cure from ALS. he also has cure for Dermatitis (Eczema), Ankylosing Spondylitis, Alzheimer's Disease, Autism Spectrum Disorder (ASD). Restrictive Lungs Disease, Multiple Sclerosis (MS), parkison, COPD, Arthritis, Ashma, Authism, Endometriosis, Bronchitis, Lyme Disease,HBP, Herpes, Hpv, Cancer, Hiv, Kidney disease, And many more

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  2. What she said. We love you so.

  3. It is impossible not to be devastated by this news and yet here you are at your most wonderful. I wouldn't have thought it possible to write such a difficult letter with such humor, grace, humility, honesty and more humor. You have done it, and of course I shouldn't be surprised as that is exactly who you are. I always love reading what you write and always wish there was more, on any topic. Scout is lucky to have you as her mother, Rob is lucky to have you as his wife, and I am so lucky to have you as my friend. You I love.

  4. What a beautiful post about such a difficult topic. This made me cry - not cry because you've had such a hard year (though there is that) but mostly because you are strong and brave and funny and such an inspiration and I am so proud to have you as a friend. And you're a great writer. Thank you for your honesty and your humor, in this post (and so many others). I love reading about your life here.

  5. Sarah, words can't say how much we love you. How much joy and laughter you bring to our lives. You've been a support to us in so many ways---always open-hearted, open-minded, quick to laugh, so present. Thank you for sharing this. I can't imagine how it feels not only to be going through what you're going, but now also to be public with it. You are one of my absolute favorite people. I love you.

  6. You, Sarah, one of my oldest friends on this planet, are a marvel. Spectacular in your courage, grace, and humor. Wonderful in your vulnerability and humanity. You are a role model to me as I am struggling in my own private ways. I’m trying to work things out in private, waiting for the big “reveal” when I’ve tidied myself up and can stand publically tall and strong. As if strength and invulnerability was the same thing.

    You are an inspiration to me and what a gift to your daughter. I cherish these letters and so will she. It’s a gift to everyone when you include them in your journey and share your story. Thanks for reminding me of this. I ache for you and your family, but am sending big hugs from Chi town, love, Jenna

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  8. It was great to see you at the Twitter Halloween party. We just read your beautiful blog entry now. You are a such an inspiration to us as individuals and as parents. What a gift to Scarlet and everyone you know. We are thinking of your family these days. - Brynn (Galen and Hazel Pewtherer)

  9. Same amazing Sarah that I knew so long ago. Best of luck to you during this phase of life.

  10. Hi Sarah I don't spend much time on Facebook so I am just reading your blog. I am amazed by your grace and courage, though your reaction to all this does not surprise me, but rather confirms the strength of life I always sensed you had. I'll get Renee and the little ones around the dinner table this evening, and we'll send and your family our prayers and best wishes -- Ross Wehner