When Rob and I lived in New York, I walked to work. It took me about 20 minutes to get to my job at a Manhattan publishing house, something that sounds so glamorous when you write it, and actually was occasionally that way. Picturing myself walking across town on 23rd Street in heels is like recalling a movie I’ve watched over and over again (something besides Wayne’s World.) Could that have been me?
I would likely have these disconnected feelings about that time even if I didn’t have ALS. After all, so much has changed. We moved to California, I worked from home in yoga pants and had a baby. I started hanging out at playgrounds and speaking knowledgeably—even passionately!—about Music Together and tumbling classes. Heel wearing had declined considerably long before I started tripping over my own feet.
But back when I first moved to New York, it was November 2005, and the staff at my company was working on a book due to launch the following year. I Remember Running was by Darcy Wakefield, a young English professor who lived in Maine. The subtitle of her book was The Year I Got Everything I Ever Wanted—And ALS.
It’s one of the first books I remember from the company, even though I didn’t work on it, because Darcy’s publicist cried when she told me about it. I had no idea what ALS was, and didn’t fully comprehend the magnitude of Darcy’s situation. I read her book only after my own diagnosis.
Like me, Darcy was diagnosed at age 33. That year, 2003, after she got the news, she realized she was living a “fast-forward life.” That isn’t to say that she dwelled in the future rather than the present, just that she got a whole lot done in one year. She met the love of her life. They bought a house and had a child. She wrote her book, but died in December 2005, before it was published. Her son was a year old.
Here is something Darcy wrote that I think about a lot, because it rings so true to me:
…sometimes I can’t help it: I lust after others’ lives. Like the morning Steve and I were eating breakfast on a patio not far from a St. Croix beach. In front of us, at the water’s edge, was a young couple with a little boy and a little girl. I watched them play in the sand and try out a little sailboat as I waited for my pancakes, and I could not help it. I got envious. I wanted that for us.
I probably won’t ever be that kind of mother, but I know now that there are all kinds of mothers. I remind myself that the qualities that will make me a good mother are qualities I haven’t lost with the ALS; that if anything, they’ve only gotten stronger. Instead of running off to play Frisbee with the kids, I will be able to sit and listen as they discuss their day. Let Steve run with them is my new philosophy.
But even so, when I look at “normal” families, like the family on the beach, I am envious. Then I get firm with myself: if I were to trade lives with them, I’d have to take everything about their lives, not just the good or the surface appearance.
I know the feeling of lusting after the lives of others. Sometimes I simply see a mom in cute jeans and I am overcome with jealousy. Rob and I even lust after our own past life: the times in New York when we were able to be spontaneous, drinking wine on our rooftop with friends or jogging along the river on warm evenings; when we got to San Francisco, and I was pregnant and we took long hikes; when Scarlett was born and we traveled all over, a family of three.
But life always changes, even if you’re not sick. Priorities shift, responsibilities increase, heels are trotted out only on special occasions. Sure I’d love to be the mom walking around in cute jeans, but when I look at where I am right now, at where I’ve been, I feel such immense gratitude. Darcy only had one year to be a mom. I’ve had four, and I wouldn’t trade lives with anyone, not even my former self.
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Beautifully written, on so many levels. And I sure do miss the days when those heels walked you right into the same office as me. Love you xxx
Another wonder filled commentary and food for thought for all of us in whatever situation we are living in/with. Your ability to see and feel the positive and paint it for the world is so remarkable. Keep writing; we need to hear more from you. Namaste!
I have come to look forward to your weekly posts and didn’t get to read this one right away. What a gift you have as a writer Sarah. I will be forever grateful for the wisdom you’ve shared with us, and the look inside your life you are living so fully. Makes me feel pretty small when I grouse about meaningless shorts and slights.
Love you.
I don’t know if this makes you feel any better but the truth is we all (or most of us) look at other women and families and envy their lives even when we are healthy. Not out of greed but out of longing….wondering what it would be like to have a child, a husband, a normal family….without the daily pressure of money and never having enough to pay bills or stay afloat.
I used to get envious on the holidays when everyone but me had a nice place to go to with their family – something I haven’t had in over 20 years before I lost it all after I had it all… It’s so ironic how as you say, our lives change so dramatically over time because it is part of living – it’s what happens to all of us no matter who or what we are – but we mostly expect those bad changes to happen in old age….as if we can control the timing of it all – until we realize we can’t. I used to wake up frantic in the middle of the night in my late 30′s. My heart would be pounding and I would rub my eyes and literally pinch myself to know that I was still alive and that this really was my life…because it had not turned out to be anything I had envisioned, imagined or expected it to be. There was no Prince Charming, no 2.5 kids, no house in the suburbs, no country club memberships, no friendly neighbors to confide in, no stellar career with a corner office, no beautiful clothes and fantastic vacations, close knit family ties or support systems in place. It was just me, fending for myself in a jungle world and only my intuition and instincts and past experiences to guide me through the trenches. I cried a lot alone and sometimes to others including strangers – who turned out to be kindest of all. The friends and family and colleagues who surrounded me in my younger years, when I was successful and the road ahead was promising, had all abandoned me like an Internet shopping cart. It seemed scary and hopeless and unbelievable to me for so many years. I couldn’t believe that people were capable of such cruelty and abandonment. I felt sorry for myself for many years. But then something eventually changed inside of me. My perspective and my priorities changed in a huge way. I stopped living to please everyone else for the first time in my life – I finally stopped caring what others thought and said about me because I realized at the end of the day, it’s all up to us. We need a purpose in life but we also need to know that life is going to change those purposes for us and leave us in a very different place from where we came from and from what our expectations were for ourselves. What I realized was something deep down I already knew for a long time; the while I was living for everyone else, they were happy with the results but I was not. And then the situation was reversed, I began living for me, and no one in my inner circle “recognized” me anymore. But I am OK with that because it made me realize that the life I was living was not really mine – it was their wishes for me. Today, life is hard and it’s a big struggle but every day is a learning experience and a gift that I finally appreciate – something that I would not have been able to do if I had stayed living in someone else’s world. The meaningfulness of life is measured in quality not quantity. Some people have more quality in 10/20/30/40 yrs of life than others do in 70/80/90+yrs of living. It’s who you are and how you lived which is the true meaning of life. The legacy we can only hope to leave behind is how we inspire and help others to become better people in a society that is starving for empathy and compassion. God bless you and your beautiful family….