Scarlett is staying home from camp today. When I asked her to get dressed, she ran to her bedroom and got back under the covers. She was wearing my nephew’s underpants, and two of his T-shirts, and seemed far too comfy to get moving. I mostly understood. It’s been a busy summer, and not at all the kind I used to have when I was a kid growing up in Oak Park, Illinois.
In those days, we didn’t do camp. We played outside, often right in the middle of the street or the alley, we went to the pool or danced in the sprinkler. Basically we entertained ourselves along with the other neighborhood children for three months, and sometimes we went on vacation to a Holiday Inn in Indiana or Ohio, or to my uncle’s cabin in Wisconsin where we swam in the lake and hooked wiggling minnows and leeches onto fishing rods that we cast out into the shining water over and over.
Scarlett’s summers are different. Her camp days are longer than her school days, and everything is pretty structured. Although the activities are amazing—this week she has been at the San Francisco Jewish Community Center, dancing, swimming, doing art and gymnastics—our schedule doesn’t allow for a lot of time to just relax and enjoy the summer. I think about the ways our summer would be different if I didn’t have ALS. If I wasn’t in a wheelchair, and unable to do so many things. I think about how we would go to Chicago for weeks, and swim at the pool, and drive up to Wisconsin to roast marshmallows and visit the candy store in the small town near the lake.
And so, when she asks for a day off, I am usually pretty quick to say OK. One day a week or every couple of weeks seems reasonable. She does art in the garage, and writes letters to her grandparents. She doesn’t get dressed unless she wants to. Breakfast happens casually, instead of in a rush to get out the door. Yesterday, I estimated that I spent three hours in the car, just getting from place to place. Everything in the city seems to be a 30-minute drive.
So ALS guides our summer in a pretty significant way. But also in a very good way, as we are on Day Two of the #whatwouldyougive challenges. Today people are giving up their voices, arms and legs in order to raise awareness and money for the disease. Scarlett and I made this video to explain the campaign and to try to get more people involved. It’s absolutely not too late, and we plan to continue working hard throughout the month of August to reach our goal of $200,000, which will go to ALS TDI to advance drug development.
Maybe there will be a summer in the future when I can drive to Wisconsin and walk down the stairs to the lake, wade in, and get some of that good old summertime back. That’s what we’re working towards, and we have an amazing team working with us, and more than 700 donors who cared enough to give to the cause.
A recurring theme this summer with the campaign was the admission from several friends and team members that it was inconvenient to try to find a time to give up an ability. No one was complaining about this, of course, they were just acknowledging the difficulty of living with a disability for even a short time. In other words, they were getting it, how there is no good time to have your life turned upside down. Some of these people chose to do it anyway, and some couldn’t, and I’m grateful to all of them for their honesty and for sharing their feelings with me and with their wider networks.
It’s not easy living with ALS. It requires assistance, equipment, preparation, patience, wine. It requires revamping your expectations for yourself and for your life, and some days that’s easier to do than others. Today I expected to focus on the campaign, and instead I will be focusing on the six-year-old who is currently digging in the freezer at 9 AM for something sugary to eat. Gotta go shut that down. Could be a long day, but on the other hand, I’m glad to have that time with my girl. Thinking of all of you who are giving up abilities today. Sending love and hugs and thanks.
Please consider donating to ALS research. #whatwouldyougive
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I, too, hope you get some of that good old summertime back. In fact, that you have decades of amazing, perfect weather summers with a child and spouse so damned happy to have you back to good mobility that summers are effortless. That seems a fair trade for a few years of the ALS summers.