It was December 15th of 2014 that the possibility I might have ALS was first suggested. It was confirmed, well, as much as you can confirm ALS, a couple of weeks later. Then of course we had to tell people. We thought it better they heard directly from us rather than social media. Telling people was surprisingly draining. You never knew how people were going to take it. Some people, Rae and I told together if they lived close enough. Others we had to tell by phone or Skype. I had to limit myself to telling one person per day. It was all I could handle. Rae once told three people in a single day. I don’t know how she did it. For me just saying the words “I have ALS” was difficult to get out. I would often choke as I tried to say the words and it sometimes took several attempts. Since that initial flurry of telling people last January I have not repeated those words. Not once.
Telling my partners at work was hard. I told them I thought it would be for the best if I stopped taking call and delivering babies since it was my hands that were most affected. Instead I would just work in the clinic focusing on prenatal and gynecological care. I didn’t have a timeframe for how long I would continue to work but suggested I work for a year or so and see where we were at the beginning of 2016 and reevaluate then. There was nothing special about the timeframe of one year it just seemed reasonable at the time. And to be honest I thought I was going to be the guy with ALS that just kept on going. I made it to August.
Eating is always an adventure. Rae and Sophia have independently developed a set of subtle hand signals to indicate to me that I have food hanging off my face. Lisa is more direct and will announce across the table “hey Dad, you have a chunk of cheese in your beard.” I’m sure it’s just a matter of time before they just start to hose me down at the end of each meal. I’m always the last to finish eating, by far, and the kitchen is generally being cleaned up around me while I valiantly chew on. The other night I was so worn out after supper that I couldn’t even be bothered rearranging the dishes in the dish machine after everyone was done cleaning. I just sat there, watching others put the dishes in the washer. Fighting this subconscious battle between one side of my brain that wanted to yell “Noooooo! That’s not where the bowls go. And even if they did, they would face the other bloody way” While another voice in my head kept trying to quietly convince me “Let it go Ray. Just let it go.”
Manu (our son) and I often went into the mountains together. One of our first wilderness experiences was in Colorado near Ouray in 2004. We climbed Mount Sneffels, our first 14,000 ft mountain together. We hiked in and camped in the wilderness then summited the following morning. There are many things one has to know about overnighting in the back country and many of them revolve around bodily functions. The hole you dig has to be a certain depth, the place has to be a minimum distance from any body of water, you can’t just leave toilet paper there to blow around, etc. We told our two eldest kids on New Years Day of this year that I have ALS. Lisa called her husband and later admitted her first thought was that this might be something she would have to worry about her son Jack inheriting. Manu just got up and left the room. He teaches high school biology in Chicago and had taught his class about ALS during the first ice bucket challenges. Figured if people were going to take the challenge they should know a little about the disease. When he didn’t come back I went looking for him. I found him in his room. All he could say through his tears was “who’s going to teach Jack to poop in the wilderness?”
I used to get so impatient with Rae as she selected an outfit before going out. And I never understood why my opinion was sought. Offering the asked for opinion is generally a no win situation. “No, really. The first outfit you tried on was fine.” Or “Ok, yes. It makes you look fat. Can we go now?” But now, even if I had a half hour head start Rae can still get ready faster than me. I can still dress myself (not really). I’ve developed a sort of ALS chic wardrobe. Magnetic zippers, elastic sweatpants, mittens, infinity scarfs, loose tops that I can slip on over my head, zipper inserts where my laces used to be, slings for my arm for when no one is around to put my hand in my pocket for me. The theme for this years Hanukah gifts was in Sophia’s words to “shishi poopoo-ify” my ALS wardrobe. Pictures to follow. When I’m alone I have one shot at getting dressed. If I have to do it again the whole morning is gone. The most amazing thing to me really is how quickly I have let go of the need to dress myself. Helping me dress (or adjusting things I’ve attempted to put on myself) has just become part of everyones morning routine. I hope it will be as easy to let go of other things when the time comes.
I told my sister in London about the diagnosis via Skype. It was a half hour call of which I think 15 minutes was spent just staring in silence at one another. People often say they don’t know what to say. But I’m the one going through it and I don’t know what to say either. Our daughter Sophia sat there in silence when we told her also. Then she got up and said she was going for a walk. When she came back she announced to everyone that she just wasn’t going to deal with it until she had to. At the time I recall thinking she was in denial. But she now often matter of factly takes care of the little things that I think no one else notices. Like asking someone for a cloth napkin when we were out because there’s cheese and crackers on the table and she knows I would like some. There are certain foods I should no longer be eating, at least not without a drop cloth or at the very least someone trained in the Heimlich maneuver in the room. Cheese and crackers are on that list. But Sophia has my back. The quiet ease with which friends and family have integrated accommodating my rapidly evolving needs into a new normalcy has done a lot to allay my fears about many things. Sometimes I think we’re our own worst enemy when it comes to imagining the future.
Our house is almost 100 years old and unfortunately does not have a downstairs bathroom. To put in a chair lift going up the stairs would not be cheap. We had a contractor come look into the possibility of putting on an extension to the house but before he even set foot inside, the term “prohibitively expensive” was uttered. A house this old has to have lead paint somewhere and removing that is not a trivial endeavor. There is a small sun room that might possibly accommodate an indoor portable handicap shower (easy to assemble without any tools apparently) and our daughter Sophia, who will graduate next year with a degree in Environmental Studies, thinks that an indoor composting toilet is the way to go. We have looked into moving into or renting other houses but when it comes down to it, this is our home. It’s where we raised our family. Every nook and cranny of the house says something about us. This is where we have had countless Passover Seders, deck gatherings, kids’ birthday parties. There are visions of our past everywhere you turn. Now I also have to contend with visions of myself, immobile in a chair in the living room. My future self staring back at me like a ghostly apparition.
When we told people about the diagnosis you could tell the people who had no idea what ALS was. They would call back the next day after they’d looked it up and say well, fuck. To be fair, I also looked it up myself just to make sure there wasn’t some another type of ALS out there. One that would go away with antibiotics. One year. When we were up in Chicago for our anniversary in January we passed a bus stop adorned with a poster that posed an interesting question. “Where will I stand this time next year?” I’m guessing I would normally have just walked on by but in this instance I asked Rae to take a picture of me next to it. Another of the rules Manu had to learn for hiking in the wilderness is that legs should always be a minimum of a 18 inches apart for pictures. We call this the “stance of power.” There would be no pictures of anyone I was related to on a mountaintop with their feet next to one another. Sorry, not happening. You need to look like you just conquered a peak, not like you need to take a leak. For the picture in Chicago I consciously planted my legs slightly apart. I probably overdid the stance of power thing but it was a statement. The world of ALS was new to us and I was thinking that in one year I’d be happy to be standing anywhere.
But here we are, one year down the road. Still standing. A little bruised and battered and worse for wear and tear but standing none the less. The thing about mountaineering or biking adventures is that you have to make an effort to go on them. Our life has become a daily adventure but this adventure is one that has come to us. And keeps coming.
Peace, love and midwives