The last thing she taught

I have written two entries that mention my Mother in passing. This is the one where she is the subject. It is the hardest of the three to write and I have started it more times than I can count.

Who she was before it

She taught for more than fifty years, most of them as a first grade ESL teacher in the Chicago Public Schools. Her last classroom was at Stockton Elementary in Uptown; she retired in 2009, eight years before any of this. If you have ever had a teacher who seemed to have no bottom to her patience, you have met a version of her.

My own first memory of her teaching is from inside the room. As a kid I spent time in her classroom, and I loved helping her prep the decorations at every opportunity I got. A first grade classroom is a built thing, and she built hers by hand, every year. The care and the work she put into it were evident even to a child. I understood, before I could have said it this way, that the room looked like that because somebody was expected.

I want to put that here before anything else, because ALS has a way of becoming the whole story, and it was not. It was the last four months of a life that was mostly about other people.

Before it had a name

The illness did not arrive in March of 2017. That is only when it was named.

Before that there were months of her noticing the decline in her hands, months of instability when she walked, and months of being told it was something else. Every explanation that arrived was not ALS. She was a woman of a certain age, and I have come to believe both of those facts shaped how quickly people were willing to stop looking.

I was not in the room for most of those appointments. I want to be honest about that. I heard about them afterward, the way you hear about a parent's doctor visits when you are an adult with your own life: a summary, a shrug, a "they think it's probably fine." I took the summary. I did not push. That is the part of this I still turn over.

What changed was a fall. Neurology at Lutheran General ordered an electromyography, which was the first time anyone went looking at her nerves instead of ruling out the ordinary things. Months of explanations, and then one test.

If you take one thing from this section, take this: ALS is often diagnosed late because it looks like a dozen smaller things first, and the smaller things are easier to say. If someone you love has a progressive weakness that keeps getting explained away, ask for a neurologist by name and do not leave until you have the referral. We lost months to "probably fine." I do not know if those months would have changed anything about the ending. I know they would have changed how much of her we got with a name on it.

What ALS is

For anyone who has not been near it: ALS takes the nerves that move the body and leaves the person inside intact. Over time the muscles stop answering. Walking, then hands, then speech, then swallowing, then breathing, in an order that varies from person to person and does not ask permission. There is no cure. The mind stays. That last part is the part people do not understand until they have sat with it.

She was diagnosed in March 2017. She had come in through the ER and was already admitted by the time anyone said the word. I was there when it arrived. We sat for hours afterward and she did not say anything. By then it was already well along, which is what months of "probably fine" buys you. The doctors did not give us a timeline and I did not ask for one. I think I already knew it would be short and did not want to hear a number that would become the only thing I could think about.

Four months

Diagnosis to the end was sixteen weeks. At the time it did not feel like weeks. It felt like a single long day that kept getting harder.

I was her primary caregiver and her power of attorney. I want to be careful about how I describe that, because it is easy to make it sound noble and it was not noble. It was logistics compressed into a span that did not allow for learning curves. It was a shower chair that was the right answer for about three weeks. It was learning how to move a person who cannot help you move her, and learning it wrong first. It was being on hold with the insurance company while she was in the next room. It was signing things as her and for her and never once feeling like I had the authority the paperwork said I had.

The thing nobody tells you about being the person holding the paperwork is that it turns love into decisions. You are asked, in rooms with fluorescent lights, what she would want, and you have to answer for her while she is right there, unable to speak for herself at that point.

I had held that paperwork before. In 2012 at the age of 33, I was my father's medical power of attorney, and I was the one who made the decision that ended his life. Something I will always carry with me. I made it over the phone, 1,900 miles away, out of necessity. I had a seat on the early flight to Chicago the next morning. The call came before the flight did, and the decision could not wait for me to be in the room. I am not going to write that story inside this one. It deserves its own room. But I need it here, because it is the reason I knew what the paperwork was going to ask of me before anyone slid it across the table, and it is the reason I did not flinch when they did.

That is not the same as being ready. Nothing about 2012 made 2017 easier. It only made it familiar, and familiar is its own kind of terrible. The first time, you do not know what the decision will cost you afterward. The second time, you do, and you sign anyway, because the alternative is making the person you love pay for your reluctance.

The one thing 2017 gave me that 2012 did not was the room itself. I was there for every decision about my Mother. I had learned, the hard way, that the phone is the wrong place to do this from, and I arranged the four months so that I would never have to do it that way again.

With four months, there was no time to get good at any of it. Every decision was a first, even the ones I had made before.

The trade-offs were not the ones I would have guessed. Work stayed. My team gave me the flexibility to run the schedule around it and the work itself did not slip. Her independence went first, traded for her safety, and she noticed every time. And everything ran on speed over doing it right, because there was no version where I got to research the better option first.

What she did with it

Here is the part I did not expect.

I cannot tell you what she decided, or whether she decided anything. That is hers. What I can tell you is what it was like to be in the room. I was the one learning and she was the one in the bed, and the direction of that never entirely reversed. Fifty years of standing in front of a room does not switch off because the body does, and it does not switch off because someone finally says the name of the thing.

So the last thing I learned from her was how to stay yourself when almost everything that made you recognizable is being taken away, and taken quickly. Whether she meant to teach it is not something I get to know.

July 5

My Mother passed on July 5th, 2017.

Everyone else had spent the day before at cookouts. I remember that, and I remember not resenting it, exactly, so much as being unable to understand how the two days could be adjacent.

What it left

I went into teaching years later. I have written about why elsewhere on this site, and I will not repeat it, except to say that the line runs straight from her to it and I did not see the line until I was standing on it.

What those months left me with is less tidy. I have now been the person who signs for both of my parents. I have a lower tolerance for wasted time and a higher tolerance for hard conversations. I do not accept "probably fine" from a doctor anymore. Not for me, not for anyone. I watched a person lose her hands, her walk and her voice while the world around her stayed built for the version of her that no longer existed, and I design differently because of it. Accessibility stopped being a thing I was conscientious about and became the thing I am actually looking at. And I still, occasionally, reach for the phone to tell her something, nine years on, and the fact that this still happens is either a failure of adjustment or the point, and I have decided it is the point.

She ended everything with something useful, so if someone you love has weakness that keeps getting explained away, push for the neurologist. If the name turns out to be this one, find the ALS clinic nearest you the same week, and get the paperwork done while she can still sign it herself. Then let people help with the things that do not need you, and save yourself for the things that do. You may have less time than anyone is willing to say out loud.

That is the whole of what I know. Sixteen weeks of it I learned with a name for what was happening. The two years before that I spent learning it without one.