Brian's Journal - 2019

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01/01/2019   New Year and New Month  
Okay. Darchelle and I sat down for an hour or two and decided on a few things we want to prioritize in 2019.
01/03/2019   A dream for the new year  
Well, sort of:
I am in my office in the house in Auburn wrapping up a handwritten letter to someone. A square space in the upper right-hand corner of the page has been left blank so I search for a stamp or picture to glue onto the space. Unable to find anything, I cut out a picture of a flower and then look for some glue. On my desk I find some rubber cement but it has partially dried out so I can't use it.
In the kitchen I find David washing dishes at the sink. He is holding a small gardening tool in his teeth temporarily while he washes silverware. It is the morning of the marathon and both he and Susan are very busy so I decide not to trouble him by asking him for glue. Instead I go out to the living room and find a small bottle of glue on a table by the window. When I go to glue the flower onto the letter I discover a cutout of a pink paper heart which I also need to glue onto the letter. It does not go well with the flower. I want to fit the flower within the heart but it does not fit.
I need to mail the letter so I catch a ride with Susan, who is driving her van with a load of equipment to the marathon start. We are driving down a long hill on a multilane highway. It is dark outside, so dark in fact that we cannot even see the lane lines in the road in front of us. Susan swerves to the left, almost cutting off a car behind us before we pull over to the right shoulder where we can see gravel along the edge of the road and are able to proceed despite the darkness. At one point we come across boulders which have fallen onto the pavement from the roadcut cliff on our right. Shortly after the boulders we get out of the van and start walking down the road. There is melting ice on the pavement but it cracks up as we step on it. I am concerned about how it will go with the marathon until I remember that the runners are accustomed to cold conditions and will be okay. Then I realize that is crazy for us to be walking because we will never make it in time and moreover the van contains equipment Susan will need at the race, so we turn around and head back to the car.
I woke up from the dream and lay in bed half-asleep, free-associating with the images in the dream in an attempt to derive the meaning. The boulders falling from the roadcut remind me of the nerve cells failing in my spine, so I understand them to represent my dying of ALS. Susan and I drive together as far as the boulders. Our marriage survived until my diagnosis of ALS. Susan's swerving across the lanes of the highway reminded me of a recent incident with Darchelle, and the darkness obscuring the road ahead could represent my uncertainty about what Darchelle and I will face in the coming year or two before I die. ALS marked the end of my marriage to Susan and my dying of ALS will end my marriage with Darchelle.
The symbolism of the letter and the search for glue is not wholly clear. The boys and I recently discussed my idea of writing a book about my life, maybe a picture book, so I think the letter may represent my life as I look back on it. I have been told that "flower" was my first word as a baby, so the flower may represent me. The heart reminds me of a Valentine card, sentimental but superficial. The mismatched paper heart symbolizes a form of love which even if deeply felt, somehow does not nourish the beloved. Does the glue also represent love, or maybe connection? It attaches family photos in an album, family memories in a life, family members to one another. Whatever it represents, I find it neither from my past nor from others but rather in myself in the present.
The last segment of the dream seems to address my relationship with Susan after ALS. It's mostly about the marathon, which after a slightly rocky start, she is successfully managing. In other respects though, we are a long ways from anywhere.
01/08/2019   What else is new  
Trump is going down. Senate Republicans will realize within six months that they cannot afford to continue to have Trump at the helm destroying their prospects for 2020, and that if they dispose of him they can have evangelical, if anodyne, Pence instead. With Fox News on board the Base will acquiesce, though if a recent article I read is correct, they may not prove to be as enthusiastic about righteous Pants as they are about the current autocratic Criminal in Chief. While I have been claiming among friends that Trump will be gone by the end of April I now think it more likely that he has until August.
On a more personal note, I am not trying for a state big year this year. For past four years I have attempted to see as many birds within the state of Washington as I could, resulting in total counts of 331, 352, 338 and 337 for 2015 through 2018 respectively. In the eBird top 100 that put me in second place behind Blair except in 2016 when he helped me take first place, and this past year when I came in third. I tried to refrain from year-birding a year ago but quickly succumbed to the temptation to chase the hard-to-get species and ended up copying Blair's example of attempting to see as many species as possible in January. He got over 200 but I was pretty happy with my 150, and with my year-end total only 12 behind his, I'm again reasonably satisfied with where I ended up.
I am also happy not to be doing it again. Last year, giving up year-birding felt like giving up on life. It felt like it was something forced on me by my inability to drive, to use birding optics and to use a camera. And to add insult to injury, part way through the year I lost the ability to hear high-frequency sounds with my left ear which left me unable to pinpoint the location of singing and calling birds. I was not ready to give up, and with the help of others, I did not have to give up. Spotting as many birds as I did last year would have been impossible without Darchelle's help, and without the assistance of birding friends Ed and Delia, and Andy and Ellen. Birding with them was deeply rewarding but despite its rewards, year-birding in general can be very frustrating. You chase specific individual birds and and when, as is often the case, you do not find them, it can be difficult to remember the other smaller satisfactions - the intimate encounter with a familiar species, the quirk of behavior observed for the first time, the scents of forest or coast or sagebrush steppe, the inconspicuous achievement of incrementing one's checklist count - delivered by an outing in the field.
In other news, I finally got a haircut last Friday from the Iraqi barbershop on 35th Ave. Harir, who grew up in Baghdad and went to secondary school in Damascus, cut my hair short on the sides, a little longer on top, in response to Darchelle's request to make me look younger. I do look younger now, and also less like Frankenstein than I did before. Harir has been to Iraq recently and said that it was not as bad as it sounds, though he has mostly been in the northern part of the country. He even took his mother over there last year.
Darchelle and I, with help from Ellen and her husband who shall not be named online, finally hung the pastel painting which she bought for her office maybe two years ago. It looks good in its intended place and is none the worse for having aged many months under her couch. Ellen and J stayed with us four nights. We talked about relationships, friends, bread, politics and more. J mostly listened. A snack potluck celebration of their marriage downstairs after church drew more than 90 people. Afterwards J commented that it was the most people he had ever talked to in one day. Or maybe it was Ellen who said that for him. In any case the socializing wasn't done yet because Monica put on a Dķa de los Reyes party Saturday night in our house. We had more than 20 people including kids. Monica provided all the food and it was exceptional. She did not make the Rosca de Reyes, the sweet bread shaped like a racetrack from which everyone at the party cuts a slice. Darchelle found one of the seven Baby Jesus's hidden inside the loaf, obligating her to serve tamales to everyone at the party sometime in the future. The Baby Jesus's looked like little two-inch mummies carved out of Ivory soap. Dania also brought a Rosca, round and more elaborately frosted, which contained only one tiny pink Baby Jesus.
Finally, I broke 90,000 steps on my Fitbit for the first week of the new year, my most weekly steps since the beginning of October. Can you say "New Year's resolution"?
02/11/2019   Snopocalypse  
They weren't exactly fake news though the breathless forecasts for repeated perfect storms of snow may have been a bit overstated. We were over in Walla Walla for Donna's birthday so we missed the first big one, which dumped about 6 inches on Friday. In Walla Walla they had a couple inches of crusty snow on the the ground when we arrived on Wednesday night. We picked up Alicia at the airport at 11PM, swaddled her in wrapping paper, hung a tag around her neck and presented her to her mother as a birthday present. Donna was surprised and delighted, and we all enjoyed Alicia's company over the weekend. Sabbath morning brought another inch or so of fluffy snow which packed down slick as snot by the time we drove to church. I had no trouble with my Yak Trax though even I had to be a bit careful on the tile in the church lobby. We spent the rest of the day monitoring weather forecasts and road conditions and debating whether or not we could make it to Portland to visit Claire the next day. Sabbath afternoon a blizzard descended on the Yakima Valley from Ellensburg to Tri-Cities. It was the real deal; 2000 cows perished in the storm while in Walla Walla we just had a few flakes floating around from time to time. On Sunday morning we finally ruled out Portland so Darchelle and I departed for Seattle, hoping to get back over the pass during a brief window between storms. On the way home we admired snowdrifts in Tri-Cities, negotiated ground blizzards in Prosser, drove on sunny pavement most of the way to Ellensburg then hit heavy snow over the pass and on into Seattle but fortunately it had not yet begun to accumulate on the roadway.
By suppertime Ravenna was snowbound. A few cars crept along 65th Street in the falling snow. We walked up to Bryant Corner Café keeping mostly to the center of the street to avoid the deeper soft snow on the sidewalks. We would get out of the way when a car came sliding down the hill towards us. The Bryant Corner Café was full, some fundraising dinner for a local school I think. We decided not to contribute and ate dinner at Zouave instead. The decor there is a bit bleak which is perhaps why both my Oso Buco and Darchelle's Eggplant Parmesan tasted better as leftovers the next day. The food really is quite good there, and the experience very personal; we chatted with the chef for perhaps 15 minutes and felt like we were the only people in the restaurant. Actually we were, until not one but two more parties came in from the cold.
Everything was shut down Monday. In the evening, having not walked all day, we set out on foot for Wedgewood where we hoped to take a look at a dining room table for sale on Craigslist. Another 6 inches or so of snow had fallen during the day and it was still snowing. The accumulated weight of snow clinging to every branch and twig was approaching critical mass. Trees were beginning to fail. Fifteen foot bamboo stalks were bent over nearly to the ground. From time to time a blue-white flash would light up the sky. After one of them the streetlights around us blinked a couple of times then went out. Kids on sleds slid down the snowy streets. An ornamental plum tree in front of a church across 30th Ave from us split in half with a loud crack as we walked by. We trekked onward as far as 35th and 90th. When we called for directions the seller of the table told us they had also lost power and so had gone out to a restaurant for supper and warmth. We turned around to do likewise. This time Bryant Corner Café was only half full and the table right in front of the fireplace was about done. I was thoroughly chilled by the time we sat down, and reasonably comfortable by the time we got up again. Supper was good but the fireplace was the main course.
It was raining by the time we started home. The snow load was already beginning to slip off the overburdened trees but the rain came too late for our Magnolia, which dropped a 20 foot limb into the driveway. It narrowly missed smashing through our neighbor's window. That was the last big storm; over the next several weeks we saw snow in the air half a dozen times and a half inch on the ground once or twice, and ice on the pond almost every morning. The Star Jasmine vines were severely pruned by frost and the Bay is looking pretty unhappy too.
03/10/2019    Making Memories  
We have outlined various priorities for 2019 but I think our real priority is simply making memories together. We both enjoy hanging out around the house, puttering on the computer or playing the piano, discussing the latest alarming news, perusing the neighborhood gardens or considering options for furniture and furnishings at home, picking up a year bird at a local park or lamp at a local consignment shop, but nothing facilitates forming memories like novelty. New places, new scenery, new people - those are the experiences that stay with us, that will stay with Darchelle when I am gone.
03/14/2019   Spring is coming  
As the world turns...
The bright white piles of snow left on lawns and median strips by the storms in early February finally melted last weekend. Daytime high temperatures have finally broken 50F and this weekend are forecast to reach the mid-60s. Snowdrops are yielding to crocuses and a few early daffodils have opened. Magnolia branches in a vase in our kitchen have burst into flower but even the buds outside our bedroom window have begun to swell.
For Darchelle and me though, winter is coming. We sat around the dining room table yesterday evening and talked about what she will do after I die. Will she stay in the house? Will she be able to afford it? How long will it take for to grow her practice to the point where she can support herself after I'm gone? It was easier to talk about the financial arrangements than it would've been to talk about the emotional ones. She cried nonetheless, though I did not. She asked if I thought she could handle it. I know she can (after all, she points out, she has already spent most of her adult life single) but I feel that it will be too much to bear.
I followed up our discussion with a dream last night.
I am walking through an office park or corporate campus. I pass an office supply store but looking in through the windows, I see only hanging file folders, mostly blue and green, and no other office supplies. Entering one of the buildings, I walk up three flights of stairs and pause, but I think my office is on the fourth floor so I continue on up. It has been quite a while since I have come in to the office and as I walked down the hall, I realize I'm not sure which door is my office. I feel awkward and out of place, expecting that people will think that I do not belong here. I recognize some of the voices in the first office on my left but do not go in to greet them. Continuing down the hall I open the door to what I think is my office but I do not recognize the furniture. Mike Adair comes out of the next office and welcomes me warmly, grabbing a couple of chairs from his office so we can sit down in the hallway and visit. I consider explaining to him that I have only six months or a year left to live but I am not sure of my motives for telling him that. Perhaps I only want to shock him or to get his sympathy, so I do not speak of my death. John Farrell then walks down the hall to us, pulls up another chair and sits down next to me. I feel grateful to both Mike and John for welcoming and accepting me.
The closing scene reminds me of the transfiguration of Christ. Mike was a brilliant programmer and powerful personality who managed me at Microsoft and hired me at Expedia. A few years after that he retired wealthy, divorced his fundamentalist wife and married the love of his life. After only a few years of married bliss he suffered a severe stroke and endured a difficult partial recovery which bankrupted him and his family before he died in 2016. In my dream, he stands in the place of Moses who represents the saved who die before Jesus returns and are resurrected at his coming. John, a close high school friend who with his wife created a career for himself as director of a puppet theater company, stands in the place of Elijah was translated and taken to heaven without dying. In the Transfiguration, Moses and Elijah were sent from heaven to comfort and encourage Christ before his death. In my dream, Mike and John receive and comfort me, and at the same time represent aspects of who I have become at this point in my life. Like them, I have taken charge of my own life and I have done well. I have become the Jesus that for so many years was external to me - not the divine Christ of God or the savior of anyone other than myself, but a man who chooses love and who is loved, and who does the best he can with what he has.
I cannot go back to work. In the dream I do not find my office. I cannot recover what I have lost but what I have is still enough.
03/20/2019   What would you do  
if you knew you only had a year left to live?
Tim and I were halfway around Green Lake yesterday afternoon when a woman right in front of us on the trail asked that question of her walking partner. I did not hear his response but I could not help saying half under my breath, "keep on doing the same things I've been doing". The weather was remarkably warm and the path around the lake was crowded with walkers and runners squinting in the late afternoon sunshine. I was wearing shorts for the first time since we returned from Africa last November. As long as I walked on the pavement rather than in the gravel I was almost able to carry on the conversation with Tim without becoming too breathless. We talked about his ex Yuliya and how she has a baby now, having married a mutual friend on the rebound, and other things too. But not about the question.
Just as well that, because I don't have what I would consider to be a good answer. I want to take care of the people I'm leaving behind - financially, emotionally - however I can. Make memories, honestly express my love to them, simplify my estate, try not to leave too big a mess. Taking care of the people I love is a priority, but unfortunately I don't always act in accordance with what I prioritize. Another priority is to do something about the things I'm leaving behind, tangible things I've created or acquired as well as more ephemeral things such as photographs and writings online. I don't know what to do with the things though, and even if I did I doubt I have the energy to do anything about it. A book, a biography of sorts, might be nice but doesn't look like it's going to happen. So the answer ends up being keep on doing the things I've been doing as best I can, subject to the increasing effort I find myself having to devote to the basics - breathing, swallowing, balancing, talking, staying upright.
04/23/2019   Status Report  
I'm not writing much these days, I thought I would include an email from Darchelle to my folks on the news from our most recent ALS clinic last Thursday.
Hi John and Alice,
I thought I'd fill you in a bit re the 04/18 ALS clinic. I'm sure Brian will fill you in a bit more himself at some point. (I have cc'd him on this email.)
Brian's overall functional rating scale points were down, though likely only because he indicated periodic use of the ventilator. He uses it some nights, or at least parts of nighttime, and sometimes for a nap. He doesn't notice a significant difference with using it yet. He wonders if the slight/dull headaches he experiences at times are from carbon dioxide build-up, and wakes up during the night perhaps because entering into deep sleep slows his breathing down too much for intake/outake needs. When on the ventilator, it adjusts for shallower/fewer breaths.
His respiratory scores were down a few percentage points (now 33% sitting upright, 39% supine), which wasn't surprising since he has experienced decline such as panting while ascending stairs/slopes, unable to talk and walk simultaneously, etc.
As usual, with breath-stacking, he was able to get those numbers up significantly (73%, 84%)--a remarkable ability according to the medical team.
Dr. Elliott and staff also noted that it is remarkable that Brian is currently able to function without much use of the ventilator even though his FVC score is 33%. Some patients at 50% must be ventilated continuously.
Due to decreased respiratory function, they told Brian that he'd likely deal with a related issue/illness + hospital visit by the end of the year (such as pneumonia), and to take extra precautions. I'm really hoping Brian's otherwise physical fortitude can help prevent this for longer than expected.
Lower back and neck are a bit weaker and therefore more sore. We continue to be grateful for the neck/back brace that holds his head up, invented by another ALS patient who was also very active. Without that, his head and body would naturally rest in a forward hunched position, causing the breathing muscles to work more and/or atrophy, which in turn tends to speed up the decline.
His weight continues to drop, despite our focused efforts and determined calorie-counting. Still trying to find a way to swap his loss with my gain, ha. Eating continues to be a very slow process, and possibly due to his medication, he has a decreased appetite which doesn't help.
One major issue that has developed is fatigue. Doing anything requires energy that sometimes he just doesn't seem to have. At the same time, "walking is life" as he puts it, so this is imperative for him. He sleeps longer these days, perhaps also due to respiratory compromise.
He was able to get a referral to get his hearing checked out + ears cleaned, hoping it isn't permanent so he can continue listening for birds.
Sunday we missed our half marathon plan in Orting, so opted for our own half marathon outing on the Tunnel Marathon course, an out and back from the finish line in North Bend. His first time back on the course in 5 years. So strange to be forced to walk the beloved course after such a long memory/history of running it. Meaningful nonetheless.
Brian continues to take Ibudilast and Tudca, drugs that are in phase 3 trials with some efficacy results. Difficult and sometimes scary to feel hopeful, but grateful for something.
The medical team encouraged Brian to try to experience and accomplish what's really important to him now, this year, and to let go of whatever else isn't high priority at this point. It can be overwhelming to live in the now-is-the-time mentality, especially with the increased fatigue. For those of us who may outlive Brian, now is the time for us, too, to spend time/make memories/have those conversations with him. "No regrets" is a motto these days for me, though sometimes avoidance and denial is a hell of a lot easier. It's just getting harder to deny.
We went birding in Eastern Washington Friday, chasing the elusive Sage Thrasher over there. Saturday just before dusk we went walking at Montlake Fill about 1.5 miles away from the house and there it was (only the second record at that location in over 100 years) - looking a rather lost and a little nervous. A lovely way to end the week.
We're really looking forward to being with you again in July.
Much love, Darchelle
05/09/2019   Spain  
Sometime early this year Darchelle and I talked about a trip to Spain and Portugal while I would still be able to travel. Thinking that we would not actually go, I acknowledged that it might be a good idea. When the good idea actually began to gain traction my anxiety about traveling grew accordingly but by then the plans had begun to develop so sometime in late March or more likely early April I booked flights to Barcelona and a rental car to drive through Portugal. We would spend five days visiting Ellen and Jordą in Barcelona and catch a train to Madrid for a couple of days and on to Sevilla for a couple of days. There we would rent a car For 10 days and drive along the coast of Portugal up to northwestern Spain where we would return the car at Santiago de Compostela and fly back to Barcelona, spending a couple more days there before flying home. Beyond soliciting advice from Daniel about what to do in Galicia and from a neighbor about what to see in Lisbon and Porto, we didn't do much planning before we left.
I didn't write about it after we got home either, nor did I do much with the 5000+ photos that Darchelle took during our trip, until about two months later. Now that the bloom is off my memories I am trying to write up an account of our travels. It won't be as fresh as it could be but I hope my account will be better than nothing.
Day 1: Arrive in Barcelona
Jordą and Ellen met us at the airport. They were actually waiting for us as we exited baggage claim but we missed each other and it took another half hour to connect so we didn't leave the airport until maybe 4PM. On the way home we made an impromptu stop at a wildlife refuge right near the airport after I mentioned having seen some big white birds below us as we were landing. When we found a place to park at the municipal funeral home adjacent to the refuge, parrots (exotic!) were squawking overhead and House Sparrows (not so exotic) were chirping all around us. We did see several more interesting species on our walk and Darchelle got some photos.
Day 2: Girona and Aiguamolls de l'Empordą Parc Naturel
Although we did not do much planning, Jordą did a considerable amount of research and planning on our behalf for our visit to Catalonia. For the next few days of our visit, he and Ellen took us to some of their favorite places as well as to some others that they thought we might enjoy.
The flower festival at Girona was our first destination. Thanks to our jet lag, we did not get an early start. Parking was a challenge at midday but Jordą persisted and found us an excellent spot quite close to the old town where large and intricate arrangements of flowers adorned historic buildings. After augmenting the crowds for a half hour or so we retreated to the city wall, ate lunch in a little park and wound our way back into town for dessert and coffee once the crowds had thinned out a bit. The flowers were glorious but my highlight was actually a Blue Rock Thrush which Darchelle photographed on the power of a building near the wall. When I asked her to take its picture I thought it was a Spotless Starling, then was delighted to be wrong about the ID because I have been looking for a Blue Rock Thrush ever since my first visit to Spain back in 2010.
06/29/2019   News and Musings  
Excerpted from an email to David in Taiwan...
I have been doing something normal for me the past few days, editing photos. Well it used to be normal anyway. I haven't been doing it much recently because it is more difficult than it was back when I had hands and because editing my photos feels a bit pointless. Perhaps because they aren't really my photos; Darchelle takes them for me. I haven't been journaling much either, another activity that is almost always difficult and also often feels pointless. It is easier to read the news then to write my own news and thoughts. Anyhow, I have been editing photos from our trip to Spain and Portugal. Darchelle managed to get some good bird photos with the G3X, along with lots of regular travel photos taken both with my phone and hers. I have been working on the bird photos, of course. If I keep it up I will soon have at least a slideshow on my phone, and perhaps something posted online as well.
It is Sabbath morning and I am up before Darchelle, sitting at the kitchen counter gazing into into the sunlit foliage of the young cherry tree outside the window. A sudden moment of shade, as brief as a wingbeat of a crow, calls my attention to the unseen bird that just flew over. Perhaps God is like that. Perhaps It flies randomly over the sunlit earth and when Its path intersects with a human, it is possible to momentarily infer Its presence. Something unusual happens - an unexpected parking spot just when it is needed, a dollar bill lying on the sidewalk, a head cold averted - and the unseen God makes Its presence known, at least to those who as Jesus famously said, "have eyes to see". On the other hand, God might be like the sun, flooding the earth with creative energy to build and sustain this vast edifice of life. It is so obvious that It is hard to see, but if you really look into It you sear your retinas and will never again see anything else. Okay, maybe were reaching the limits of this metaphor, but it is Sabbath morning and therefore not inappropriate to consider that God might actually be a Thing.
Darchelle's sister Claire and I talked a lot about God last weekend. Actually Claire did most of the talking. She has a view of God in which he is very active in the world, communicating frequently (albeit sometimes ambiguously) with people who will listen. Picture not just a single crow flying over, but a whole flock of them, the way they do on winter evenings when crows from all over the city gather together and commute out over the Sound to their nocturnal roost on Bainbridge Island. We commuted out to the Oregon coast with her four boys and rode a scenic railroad to Rockaway Beach. It was a beautiful day, cool but sunny, and we all had a good time but unfortunately three of the boys, as well as Claire herself, had a bad cold and after five hours cooped up in a car with them, I caught it. After my fever on Sunday night subsided I developed a bad cough, or at least it would've been a bad cough if I could actually cough. What I had to do instead, over and over again, was to gulp enough air to inflate my chest then blow it out all at once and hope that the phlegm would come with it. Exhausting, but it worked. For a few days I was worried that it might turn into pneumonia, which at this point could be fatal, but it didn't.
One consequence of my cold was that we did not get to hike up Silverstar Mountain near Vancouver as we had planned to do on the way home from Salem. We drove up to the trailhead on Monday morning but I wasn't up for the hike. We returned to the trailhead a week later and this time succeeded in hiking to the summit despite Darchelle now having caught the cold. Darchelle and I ran a big 50K on Silver Star Mountain on the summer solstice in 2013 so this hike was an anniversary of sorts. The trail was more beautiful than I remembered, 3 miles up through second growth Douglas Fir forest and steep flower meadows to a bald summit with views of the Columbia River all the way from Eastern Oregon through the gorge and past Portland to Longview. The summit was shrouded in clouds when I was last there and we descended much of the trail in the dark that time. Something else I noticed this time - Hermit Warblers, Washington state year bird number 233, not that I'm counting. Okay so I am counting, even though I told myself I wouldn't do that this year. It is hard to get an old dog to let go of his tricks. I found the hike very strenuous and actually developed IT band soreness in my left knee in the last mile of the descent, but since then it's been okay. 2000 feet up and down, 6 miles, 7 1/2 hours. Last time the whole 50K only took us five hours longer than that. I enjoyed the flowers more this time though. And the Hermit Warblers.
07/23/2019   From Darkness into Light  
On the 18th Darchelle and I paid our quarterly visit to the ALS clinic. During the pre-clinic interview with the nurse the day before our visit I told the nurse I wanted to discuss what my dying might look like. Anticipating that discussion, I found myself quite out of sorts as we walked into the hospital. "Today I find out how I'm going to die", I told Darchelle.
My numbers were, as expected, somewhat worse than last time. My MIP dropped to -35 after holding steady in the low 40s on the previous three visits. My FVC was about the same at 32%. I think the MIP more accurately reflects my increasing struggle to breathe when walking uphill. My FRS added up to only 26. I thought that was low so we went through the questions again and came up with the same number. I think the increasing shortness of breath was primarily responsible for the drop from 29 last time.
We discussed three end-of-life scenarios. Falling is the least common but a constant risk nonetheless. Aspiration pneumonia happens but significantly less frequently than the third scenario - hypercarbia. As my chest muscles and diaphragm become weaker, I will spend more and more of each day on the ventilator. At some point even ventilator-assisted breathing will become inadequate and carbon dioxide levels in my blood will increase. That induces sleepiness followed by respiratory failure and death. It is reportedly an easy way to go, but as Dr. Elliott pointed out, my plane isn't quite ready to leave the runway. The ALS clinic typically recommends that patients initiate hospice care while they still have six months or so left to live, and my impression from Dr. Elliott was that I wasn't nearly ready for hospice yet. Prior to the clinic, I had been thinking that I had only six to nine months left so I left the clinic feeling considerably lighter than when I entered.
The night before last I remembered a dream, although I couldn't quite recall the beginning.
I am walking down a hallway and I pass Keith Hallum. He greets me but I don't think to respond until too late. I walk down a stairway into a very large and mostly empty room. Someone, partly hidden behind the door frame, is doing something with a bicycle and other items, perhaps bicycle parts, are scattered around the room and arrayed on shelves in front of a door in the far corner of the room. I wonder if I will need to move the shelves in order to go out the door but I am able to exit without moving them. Outside it is nearly dark. I am in one of several rather small fenced yards which appear to be backyards of private homes. Two small dogs rush up to me snarling and barking. I reach down and pet the closer one, a fat low-slung brown and orange job, on his head and he immediately changes, cringing and fawning as if desperate for my affection.
I look for a gate by which to exit the yard and with difficulty in the low light, spot one in the corner. It leads into another yard where several men are sitting on chairs on the lawn. Concerned about crossing their property, I asked one of them how to get back out to the street and he responds amiably, "Go out by the Ash tree". At first I don't see an Ash tree, only two Sugar Maples ahead on my right, then I notice a third tree to the right of the two maples and it is an Ash. A steep bank of fine-grained dirt, actually a driveway, leads up to the left of the Ash. I climb the bank, kicking steps in the dusty soil as I go. I don't know how anyone could use it as a driveway.
Up on the street, it is a bright sunny early spring morning. A big snowstorm has recently blown through leaving drifts of soft snow higher than my head along the left side of the street but blowing the right side of the street mostly clear. I wade into the first drift and trigger a slide of soft snow several feet deep which forms a pile in the street in front of me. I plow through that and begin to run, feeling light on my feet and running easily through the knee-deep snow. At the top of the hill, which is very much like the hill above the house in Jackson, I turn left and run on mostly bare pavement past overlook. The drifts on my left, along the side of the road by the field, are only a foot or so deep here and they are melting. I am surprised that despite having ALS I can run so easily and I imagine that it would not be difficult to run eight minute miles. I think about my schedule for the day and realize that I can run for at least another hour or so before I need to be anywhere.
Passing the Iselin's house, which has long been uninhabited, I notice that the garage door is open and there appears to be a light on inside. I don't see anyone in the garage but a lawn mower is sitting on the concrete apron out front. As I walked past the driveway and can see more clearly into the garage, I am no longer certain about the light inside; it might just be the sun shining in through the door.
This dream incorporates several recurring symbols from my dreams over the past several years, but with a new twist. I don't know exactly what the dream means but the symbols provide some clues. Like many previous dreams, it appears to be a narrative summary of my adult life. Keith Hallum and the institutional style of building in which I encounter him are references to Auburn Adventist Academy, and by extension to my early days as a Seventh-day Adventist. I relied on my bicycle for transportation back then. The dogs again in this dream appear to represent God. This time I sense that they are rightfully defending their territory against me, an intruder, but I do not find them threatening, nor even inappropriate. By casually acknowledging their presence I mollify them, and now they want my approval but I am more concerned with moving out of this area where I do not belong. I am a little worried that the men will be angry with me, but when I let them know that I am trying to get off their property, they are happy to help.
Now things get interesting. "Go up by the Ash tree." With Ash I associate ashes, and then cremation, and death. And that dusty hill past the Ash tree recalls Genesis 3:19 "For dust you are, and to dust you shall return". As I pass the ash tree in the dream I pass from darkness into light and the setting changes to Jackson, my childhood home. The two maple trees represent both Jackson and dying; in the past couple of years both of the two large maples in front of the house in Jackson have died.
As in previous dreams, the symbol of snow recalls winter, the season when nature dies and so the time during my life when I am dying, the present time. But it is a bright sunny morning and the snow is beginning to melt. It is early spring, the season of resurrection and renewal. I am running freely and easily, fully alive despite ALS. It is appropriate then that there are signs of life in the Iselin house where I played with my friend Sandy when I was a little boy, but which has stood empty for a long time now. But maybe those signs of life are a trick of the light.
The dream expresses my evolving view of the meaning of God in my life. Through my own agency I found myself trapped in a framework in which I didn't belong, confined within a worldview in which I was alone and in the dark. Not until I claimed my authority over that God was I able to find my way out. The man's voice explaining how to get out of darkness was probably my own voice. The way into light involved the death of some kind, perhaps the sentence of death pronounced upon me by ALS six years ago which was the catalyst for the changes I have experienced since then. It could be described as a conversion of sorts, as Jesus puts it in John 5:24, "Indeed, he has crossed over from death to life."
Although I did not feel much emotion in the dream, sadness rose to the surface as Darchelle and I discussed it. The symbols of death represent the profound loss I experienced as I relinquished the virtual parent that I identified as God. God offered me not only parental love and guidance but also the familiar demanding and condemning presence of my father, and perhaps also the caring but distant presence of my mother. From adolescence on I clung tightly to them while at the same time putting them outside of myself into the external person of God, a construct abetted by my submission to the external framework of religion. In reality they were parts of myself but because I made them external to me I couldn't change them so had to conform in ways that increasingly didn't fit. For years I kept them apart from me but close by, not acknowledging them as part of myself and realizing that letting them go would actually mean accepting them as part of who I am. I kept God around to spare myself the pain letting go, but letting go of God, my virtual parent, was the prerequisite to becoming more fully the person I am. Through the death of God, I entered into my life.
If I still believed in God, I might see the dream in a different way, as perhaps a message from Them regarding the future that awaits me. In that future, through death I pass from the darkness of this life into the light of the next. In that future, "they will run and not grow weary, they will walk and not be faint." Isaiah 40:31. In that future, it is as if I am a child again. But I do not believe that They spoke to me through the dream. There is not anyone in the Iselin's garage after all; the house remains empty and the light inside, an illusion.

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