There are many ways to measure the length of a journey. Duration in time or distance traveled are but two. Yet distance measured on the map is somehow just not the same as distance measured on the ground.
I do not have words to adequately describe what it’s like being in my body at this point. All the things I most dreaded when initially diagnosed have one by one come into being and have simply been incorporated into our daily lives without fuss or fanfare. Yet the love and tenderness I’m shown on a daily basis by family, friends and community (irreverent as it can be at times) make it all relatively easy to bear. And that is a gift for which I also do not have words to adequately express thanks. That being said I’m going to give it my best shot.
August 12, 2001. Mt. Fuji, Japan. Bike riding isn’t the only activity I’ve undertaken in order to raise money for a good cause. In 2001, a group of ten of us set out to climb Mount Fuji to raise money for Planned Parenthood. Our goal was to see the sunrise from the summit of the mountain so we began hiking the afternoon of the day before. There was a steady drizzle and we were surrounded by clouds so there was a possibility that for all our efforts we might not see anything at all but we were only in Japan for five days and this was our only shot. Despite the lack of visibility there was never any question about the path because hordes of people, young, old and entire families were also making the trek. But as we got higher the crowds began to thin out. There were lodges at regular intervals along the way offering everything from food and souvenirs to canisters of supplemental oxygen. At one point I recall passing a middle aged man sitting by the side of the path breathing deeply from an oxygen mask held in one hand while holding a cigarette in the other. I thought, you know, I have a nursing supervisor who would probably have a thing or two to say about that.
July 6th, 2016. Urbana, Illinois. I stood in the hall of our home at the foot of the staircase. Waiting for the reassuring feeling of the stabilizing hands of Rae or one of the kids on either side of my torso before setting out. This isn’t a trip I would attempt solo anymore. Once I have the support of someone behind me I generally stare at my feet for a while as I gather my strength. No one ever rushes me. When ready I lift my right foot onto the first stair and begin. We have lived in this house since 1998. Yet prior to this year, had you asked me how many stairs there are in it I could not have told you. There are fifteen. Fifteen stairs that separate me from the bathroom and our bedroom. The first seven stairs navigate a 180 degree turn and as such have a wider surface area. They also pass the window that looks out onto the patio. If I was going to take a break for supplemental oxygen this is where it would be.
As the light began to fade we stopped at one of the mountain lodges to eat and dry out. I’m not sure if it was the actual heaviness of the rain or the material the roof was made of, but knowing I had to go back out into it, this was one of the few times in life that I didn’t find the thunderous sound of rain soothing. At around 2 a.m. we headed back out onto the trail. Thankfully all the clouds were now below us and above there was nothing but a clear starlit sky. Mt. Fuji is a holy mountain and has been the object of pilgrimages for centuries. It is 12,389 ft. high and as we approached the summit my breathing was becoming more labored. It was still dark when we reached the rim of the mountain where, much to my surprise, we were greeted by a ghostly apparition. There, standing alone on the black volcanic rock, was a vending machine. It shimmered in the darkness, silhouetted against the black moonless sky. It reminded me of the monolith in the movie “2001.” I approached it with caution. I mean, where the hell was this thing getting its power? But any apprehension I may have had soon dissipated when I saw that the vending machine dispensed cans of hot coffee. I rummaged through my pockets and somehow came up with the right change. Invigorated by a warm caffeinated beverage all altitude-related fatigue suddenly vanished and we circled the entire rim of the mountain before the sun started to rise.
The last section of the staircase is a straight shot to the upstairs landing. I used to count off the stairs from 1 to 15 as I climbed, but of late I’ve taken to starting back at 1 from the halfway point. Counting from 1 to 7, followed by 1 to 8 somehow seems so much more manageable than counting all the way to 15 in one shot. Once at the top I regroup as I catch my breath and quietly bask in the glow of my small victory. I’m having an increasingly hard time holding my head up.I actually have to put thought into it. It isn’t something that just happens anymore. And my neck muscles fatigue quickly. The best feeling is to rest my head on someone’s sternum where it is thankfully weightless. This has become my regrouping position. As an aside it’s also how I’ve learned to identify all my friends and family by their toes. Once I’ve made it to the top of the staircase I’ll assume this position to gather my thoughts. There are only two reasons I would have made this journey. To use the bathroom or to lie down. But even if it was just to use the bathroom it’s impossible not to feel the bed calling. A ghostly apparition in my mind’s eye. Pulling me in. I mean, I made it all the way up the stairs in one piece. Doesn’t that deserve a nap? We could easily set up a commode anywhere downstairs in the house, alleviating the need to go upstairs. But our bedroom, well, our bedroom is our bedroom. More than any other thing in the house the comfort of our own bed is what I would think of most when we were away. It’s really the only reason I still persist with the stairs. If my legs were to outlast my lungs I’d be deliriously happy. But it’s a tight race.
About a month ago we embarked upon the final leg of our journey and entered the realm of hospice care. Even though I’m a healthcare professional I have always thought of hospice as something of a last resort. But hospice is simply a philosophy of care that focuses on the quality of your life instead of on continuing with treatment to prolong it. There you go, “quality of life.” I said it. That phrase I so hated when the neurologist used it at our first visit. When you’re initially diagnosed with ALS people send you all kinds of info about the latest research, drug trials and therapies. I don’t think you ever really know how you’re going to face any given situation until you’re actually confronted with it. Illness is no exception. It’s an extremely personal choice involving many factors but since the very beginning we decided we were going to spend our time spending our time rather than pursuing more time. I guess I just had it in my mind that the less life prolonging measures I took the more control I’d have at the end. And above all else . . . I’m a control freak. In order to qualify for hospice care you need to be medically certified as having less than six months to live. But philosophically we’ve been in hospice care since day one.
When you become a parent there is a love that develops between you and your child. It’s not a love that you’ve experienced before. I mean, we all have been in love. But this is different. It’s a love of a higher order. A love that you really wouldn’t have believed yourself capable of prior to actually experiencing it. Then if you choose to have another child there comes this nagging guilt. You are the center of your child’s universe and you’re about to bring another child into the world. You ask yourself how could you possibly love another child as much as you love the one you have? But just as before becoming a parent you could not have believed yourself capable of such a love, when you have another child that love divides with equal intensity. It’s a bottomless well. At least it is until they become teenagers.
Just as the milestone of becoming a parent magnifies your emotions, let me tell you, staring down your own mortality sure as shit does too. I don’t know why I’m surprised by the way people are supporting our family and caring for me. I think it’s more a feeling of unworthiness than anything else. I’m not going to say that it’s a different level of love I’m being shown or am feeling towards others. I suspect it’s always been there but I’ve just been in too much of a rush to notice. Each day is measurably harder and there have been nights I’ve laid down unsure if I would wake. It’s hard not to feel that the end is close. This afternoon I was napping. At least I think I was. And I had the weirdest feeling of being apart from myself. Not floating above or anything like that, just not being totally within myself. My physical and cognitive selves were slightly offset. Like I was testing the waters perhaps. Hard to describe really. I was somewhat surprised to open my eyes and see that I was still in my bedroom. If I could move my arms I would have pinched myself. But I was reassured by the sound of Rae, Sophia and her partner Yoni watching a movie behind me. The whole experience couldn’t have lasted more than a few seconds. At least I don’t think it did. Of course it could also have just been part of a natural dream cycle. Can’t really say for sure. I’m new at this.
When I stopped delivering babies one of my fellow midwives wanted to throw a roast (the honorary type not the edible type) to–in her words–“mark the end of an era.” Initially I declined but later changed my mind. I changed my mind because around the same time I attended the funeral of a community member. As I listened to the tender stories and anecdotes people shared I couldn’t help but wonder if they had shared those feelings with the person before he died. I don’t know the answer but guessed probably not. I mean it just isn’t something we generally do outside of our immediate family and friends. And even then not enough. There is not adequate space here for me to thank everyone around me for their love, friendship, bravery, compassion and saliva removal. And even if I tried I would no doubt forget someone. Last July I ended my Bar Mitzvah speech with a blessing. I would like to do the same here. In lieu of thank yous I’d like to offer an ancient priestly benediction to friends and family and the countless others who have helped us on our journey.
May the Lord’s countenance shine upon you and be gracious to you.
May the Lord look upon you with favor and grant you peace.
And let us say amen
Peace, love and midwives