Writing would be so much easier if I were Sherlock Holmes. I would describe this whole dis ease experience with the detachment of a forensic researcher, droning on and on about how elementary winding down with ALS is. I would seek out miniscule meanings from the clues I would offer in each and every episode of my life, moving from ultimate human engagement to the need for quiet and peace just to survive the next minute and the next. But I am not Sherlock Holmes.
Instead, I have this enormous need to describe, like an insider with a big and terrible and wonderful secret, just how the story goes. I have this enormous desire to say the real and true (at least according to me) thoughts as they circle and wheel and roll around inside my head. My needs lead to enormous assumptions. I am assuming you will let me know if my governors have come off too far. I am assuming that you will let me know when the insider knowledge is too much for you to bear. I am assuming that you will tell me when you prefer blessed ignorance to the play-by-play with color commentary that inside knowledge encourages. But most of all, I assume that we all like to be in the know, even when the informant is not as smart as Holmes, a seeming reenactor of “Six blind men and the elephant” rather than a deductive genius.
Deduction is not my forte. For me it is a question of balance, and this past week has been one where the question of balance has not only been politely raised, but shoved down my throat.
Questions of balance are not to be taken lightly. For example, the balance between foolhardy and overly cautious could be driving 5 mph over the speed limit. It could be the critical mass one reaches in deciding whether to stay or go in a relationship, or to move away from or remain steadfast in a place of employment. Most of us can point to certain experiences where our life’s stasis was disrupted, where balance became impossible, where it was as if the universe had aligned itself against us. Being homeless or losing your loved one suddenly or being diagnosed with dis ease with only one terminal ending are massively unbalancing to the overarching meaning of day-to-day existence. I used to drive 5 mph over the speed limit.
I have experienced the diagnosis, the disruption of whether to stay or go in both relationship and employment. I have experienced the sudden loss of a loved one. Such experiences require years to rediscover that center, that space where all is well, that head of a pin where the angels dance. The consequences of great disruption are easy to understand. Not so easy to get are the consequences of when the small, trivial, carefully constructed sequences that keep us in an upright space are suddenly thrown far off kilter, not by massive life experience, but by something so exceedingly small that deductive distance begins to look like the only way in which to understand their meaning. In other words, it’s the little things that really get you.
The elevator broke down in my building, and I was not in my third-floor condo at the time.
When you have very little arm extension or hand coordination, 2 inches out of reach might as well be 100 miles. When you have no leg strength, the whole idea of walking becomes fantastical. And when you have no elevator, a 400-pound wheelchair becomes an instrument totally at odds with its mobility purposes. A body that cannot walk or crawl or pull or push becomes stone that refuses to be moved, a Sisyphean feat that embraces the ludicrous, a living example of the overwhelming power of gravity.
Think of poor Ev as she sought to find one or two or three backup plans we could execute. First she called the ALS Association and located a Hoyer lift. With this at least she would be able to take me from my chair to bed and back again. Then she found a hotel that did not require the DNA of our firstborn child to hold an accessible room until 6:00 PM. Then she went online to a support group and asked for advice. And finally she turned to a number of other caregivers who might be able to offer assistance well informed by experience. I am thankful it was summer. Can you imagine such execution with a room full of kindergartners?
It soon became clear that the elevator would not be fixed this day. And as we began to plan for the move into a hotel (I won’t even describe the logistical planning and the amount of equipment in addition to the Hoyer lift required), an idea from one of the caregivers online came through. “Have you considered calling the fire department?”
As we talked, it became more and more evident that getting me into the condo, even if I could not have my powerchair, was most desirable. So, Ev called the fire department. She told them, “I don’t think this is an emergency, but I have no way to get my husband up to the third floor where our condo is. Is there any way you could help me?” The dispatcher on the other end stated, “I don’t know, sounds like an emergency to me.” And within 20 minutes three fire persons – Garrett, Lisa, and Boomer – had figured out how to slip a cloth stretcher underneath me and to carry me up to the third floor. Our lovely neighbors at the other end of the hall loaned me their powerchair for the next 24 hours. And some off-balance balance was achieved.
This took place on Wednesday, and I have to admit that it wasn’t until Saturday that I began to feel like my old self again. The ALS person I have become is so easy to disrupt, so easy to push off balance, so easy to move into painful and difficult spaces, that I hardly recognize him. Yet I know it is me. I know that the energy I expend to create a space that is calm and fulfilling and centered is much more than I realize. The experience of being carried up three flights of stairs speaks of how simply the center can be pushed to the side.
I don’t tell you this for empathy or pity. I tell you this because as cliché as it may sound, dis ease has taught me that change is the one constant on which I can depend. And what I am trying to learn is how in the face of such constant change and loss, joy and life emerge. I know that they do. Many times, even in my ALS normal, I’ve experienced joy in the face of sorrow, gain in the face of loss, constancy in the face of disruption. And yet, I also have experienced just how human and flawed I am. When will I learn that none of this is anything more than the illusion of safety? When will I learn that joy and sorrow, loss and gain, constancy and disruption are nothing more than different sides of the same human experience? When will I learn that balance requires that both the positive and negative must be present?
Sometimes, it takes the overwhelmingly physical teaching of the local fire department to remind you that spiritual space is the counterbalance of physical loss. Sometimes, it takes enormous imbalance, tipping points exponentially reached to again experience the quiet center. Sometimes, it takes dancing on the head of the pin.
It really is elementary.