Sunday, the wind was a constant worry, but it wasn’t raining when we did our morning walk, and it was a very warm 11° so we went for a longer than normal morning walk. I lit a nice big fire anyway so that the house was toasty warm. The cats love the heat. Ethel has been sleeping on the hearth; Fred prefers to stretch out on either of the two chairs facing the fire.
I had no plans for the day. I’d intended to make a delicious spicy shredded beef dish that I really, really love. It’s the only red meat dish I make. But I decided not to make it because I have so much soup and salad makings that I want to use up. I hate having any food go to waste.
So, instead of baking, I decided to work on tidying up and doing some culling in my pantry. I hadn’t tidied up the shelving in it since I moved in and I knew that there were a lot of dried spices and nuts that needed to be tossed, and there were lots of things that also had to go. I did some consolidation of things and a lot of tossing into the garbage.
I began at 10:00, and at 11:30 I changed my shirt for the first time. I was damp with sweat. I changed again at 13:00, and again when I finished at 14:30, when I was finally ready to stop. I have only the top shelf to do but I will have to wait a couple of weeks to do it because then I’ll have more room in my garbage can. It’s full right now and can’t take any more crap.
But the pantry is clean. I cleaned all the shelves and the tops of all my spices. The best thing is having my spices grouped according to taste/use. And all the other things in the pantry are stored in a rational way now. All my flours are together, all my starches are together, as are my gelatins and yeast. Oh, the beauty of it all.
When I got cleaned up, for a break, Sheba and I went over to Ursula and Dave’s to see Sarah, their daughter, who’s come for the holiday season from Costa Rica where she lives. They were decorating their tree, and I was glad to sit and chill with them before coming home to do another hour of tidying up. Moving stuff to the studio or to the hall closet, and some things from the hall closet to the shed. Oh, the order!
It is dead silent here. All I hear is the fridge when it turns itself on, but I don’t even notice it most of the time. Sheba hears much better than me. She always lets me know when someone comes into her view. She’s is always on the bed or the chaise because they afford a view out the window. And the volume goes way up if someone comes in the yard. I couldn’t wish for more. I didn’t train her; it’s just her. It’s who she is and it’s another reason to love her for me.
Last night, I was typing this post and suddenly, she was on her feet, growling and running to the window, and I started having a panic attack. I just sat in the chair and feared the worst. It was dreadful, but when I noticed that all was silent and calmed me, and the longer it lasted, the better I felt.
And once I recovered, I wrote this.
Last night I reviewed the events of my life on since my latest diagnosis: lung fibrosis. It came with a follow up call asking about my personal life because of the fatal nature of fibrosis, including statistics on life span after a fibrosis diagnosis. Then came prednisone and then Tezspire, both of which were medical miracles for me (although prednisone came with side effects I hope never to experience again). This all occurred last May. On reflection, I realize that during the ensuing couple of months, I privately thought of myself as a (slowly) dying person. I’d lived with that feeling before, when I had AIDS.
I carried on. I was happy. But behind it all was a sense of self that eroded my ambition, my sense of curiosity, my energy; I felt tired and unmotivated, but it was very easy to carry on. Sometimes I’ve learned things about myself when something stops. One time, coming out of anaesthetic, I thought I could feel, as part of my awakening, hatred returning into me. Ever since, I’ve lived believing that I harbour a lot of anger.
Dr. Shoja said, “Who wouldn’t be angry? You were abandoned by three parents.” There are so many levels of understanding. But I know I’ve accepted something when I get a surge of emotional/physical energy over facts I’ve intellectually known for many years. Dr. Shoja told me her diagnosis and theory of origin in 2017. I didn’t feel the pain and cry about my history until six years later.
Almost three months after my fibrosis diagnosis, I fought back. I called the doctor, for whom I have great respect and gratitude, and asked her about the studies behind the statistics that she’d quoted to me. It was my contention that they were derived from studies that predate biologic medicine, and although she could not cite the studies, she agreed with my point.
Further, I asked her if the studies were of all asthma patients, or if there were derived exclusively from studies of eosinophilic asthmatics. Again, she didn’t know, and I didn’t expect her to. She was following a hospital protocol. She told me that up front. So, I asked her: “Best guess?” And she guessed ‘general asthmatics.’ That’s what I thought as well.
I wasn’t really interested in tracking down the authors of the study. I was interested in freeing myself from the life-expectancy statistic she’d quoted, and I was successful. After my challenges to the doctor, I no longer felt like a dying person.
I came back to life. I began cleaning and culling around the house. I even did some painting. And then came the epiphany. I speak most fluently with one person with whom I feel comfortable. That comfort factor is outta my control. This is the C-PTSD and FND cocktail I live with in my operating system. My brain decides who is trustable, but almost everyone makes me have a seizure when we are together whether I trust them or not. So, when I say comfortable, it means ‘comfortable’ to my brain that has a virus.
That led to ditching the sofa in the living room area. And that led to moving the sideboard that was behind the sofa to against the kitchen half-wall and turning the dining room table ninety degrees. Also, I got a new chair that sits facing the fire, and to its left is a table that severs the new chair plus a second chair that I already had that is also facing the fire.
And that’s it. When I made all the changes, every time I came home for a while, I’d feel like I was in the lobby of a hotel, because it was now very open in the big open space layout of my home. And I love it.
Over time, Tezspire has given me a strong new sense of being a living person and not a dying person. Changing the furniture came from my mental health condition. I created a space to live in that physically reflects my greatest potential for comfort—a party for two, me plus one. But it’s easy to add a chair when I have two or more guests because there are six chairs in the dining area.
Another change: I cleaned out the studio. I have everything ready for Gabriola Disposal to come and take away. It’s stinkin’ bea-u-ti-ful in there now, even with the outdoor furniture in there. I just need to call the disposal guy but somehow getting rid of the sofas feels like putting pets down. Especially the old one. Me, the proudest non-hoarder there is, is having trouble dumping the sofas. It’s the first time I’ve ever become so attached to a thing. I love getting rid of things. I did a nice big job of doing just that for four hours of yesterday in the pantry.
And lastly, but still a bigly part of a change, I lost forty pounds. This decision was driven a different disease than drove the creation of the lobby look: this was driven by asthma. In May, ’24, I couldn’t walk, carrying a birthday cake, four houses down the flat street. A year later I found out why and got prescribed with Tezspire, and it has what ignited a sense of feeling in the land of the living.
Hills remain a challenge. It depends on their length, steepness, surface and weather. Otherwise, I feel like a lot younger, and that’s not an objective I seek. A heightened sense of energy has re-engaged me. Also, becoming involved with SPACE has gifted me a community of stutterers and their allies. Aidan, who is SPACE, is very easy and pleasant to work with because I have no ambition whatsoever other than to support him. I habitually lead, but this is more fun, supporting him, giving his mind more hands and sounding board. I’m driving him on issues he chooses, with ideas and text. I’ve become an active player of a team of people who are incredibly welcoming, thoughtful, and articulate. Yes, I’m in a cult, and I love it.
2026 is going to be a good year. I’ve never had such a feeling going forward. But context: I’m 78, I have 13 daily prescription pills + a monthly injection, and two— TWO—mental diagnoses. I’m excited because I have another chance of living and feeling alive and involved. Asthma is nasty. Now, thanks to Tezspire, I can walk long distances—slowly on the hills.
And now a story that began in May 2024, triggered by a diagnosis of fibrosis, is coming to an end at the end of 2025. With statistics shattered, the lobby look, and a new board position with SPACEC, I’m looking forward to the new year. I’m going to a party. Here. Alone-ish, with the three beloveds plus, probably, rodents.
And in 2026, my Paulownia is going to bloom for the first time!
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It’s really warm this morning. It’s dull and damp, but it’s not raining and the warmth of the air is inspiring. Her Highness and I are off to Nanaimo. I have breathing tests and we have pet supplies to fetch and sushi!!!!
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