Yeah, That Too.

 My good friend with whom I am sharing both a high-flung discussion about and real-time experiences with being disabled, posed an interesting question in her most recent letter. 

I wonder why we've both been so very resistant to being labeled disabled. I guess it just doesn't fit our self-definitions.

I responded with two points of view. She's right: I have not thought of myself as disabled despite my family physician recently reminding me that I was disabled the moment I was diagnosed.

My second point of view, personal to me, is that while my overall physical well-being has been deteriorating for years, the rate of deterioration has been so infinitesimally slow that I lose conscious track of it.

Except when it hits me in the face, as happened just this week. 

I keep two sets of notebooks about my health. The first set consists of spiral-bound notebooks in which I record doctor visits, exams, results, questions to ask at the appointments. I started this set in 2014. These are the 1 Subject Notebooks that are now flooding our local stores as families prepare for school to open shortly:

The second set is random in size, color, and make; they are my myeloma journals. They date back to 2012, when I resumed treatment after gaining health insurance through my work and waiting out the one year of pre-existing condition limitation on coverage. Walking into our local hospital, which used to house the oncology clinic, I ran into an acquaintance, who was also a nurse. When I told her where I was headed and why, she said, "Keep a journal of how you are feeling, how your body reacts to different treatment. You'll find it useful."

My myeloma journals

It is this set that trips me up in the "oh yeah" moment. The same day this week that my friend's letter arrived with her pertinent question, I had been scanning these journals backwards chronologically, looking for a particular medical event. I did not find what I was looking for, but I found 2021 notes that sounded remarkably like what I am feeling now. Only better because I was in better shape then. In assembling the notebooks for this photo, I found similar entries years before those entries. In short, I have over a decade of entries showing a slow, imperceptible-to-me decline. 

As I posted back in June, 2022, it's the effing truck.

I am currently reading The Country of the Blind/A Memoir at the End of Sight by Andrew Leland, who writes about his increasing blindness from an incurable, chronic, progressive eye disease (retinitis pigmentosa, or RP). Leland has the same experience with his gradually diminishing sight that I feel with the myeloma; at times the changes are so small and slow that it takes him time to realize that he has lost more ground. "Once I adapt to a change, and it's felt stable for a while, I nurture the illusion that, actually, my RP isn't as bad as it seems." He then goes along until his vision "erodes a bit more, and the drama of a fresh diagnosis is reactivated."

Yeah, that too.

So now I circle back not only to the burnt barn haiku, taking comfort in my seeing the moon, but also in the blunt reality of Atul Gawande reminding those of us with incurable cancers that the night brigade is always out there bringing down the perimeter defenses.

Yeah, that too.

Last evening, I ran into a series of more-that-usual stressors and finally flung myself down on the couch to watch the Shabbat service from Temple Sholom in Cincinnati, my synagogue of choice. I really needed that quiet sanctuary. (I was a bit late, and stressed about that, too.) I opened the site, I click on the service, and...

Crickets. They were having tech issues and could not get audio working for the live stream. 

But Shabbat came all the same. Later that night, closing the house up for the evening, I went out on the back deck. In the southern sky, the just past half moon was glowing. I called for  Warren to join me and we both looked for a few moments, sealing the moment with a kiss. Life goes on.

Yeah, that too. And that is the best of all.

This Year's Gardens: Part 8

 Late July. By now I am typically rolling in tomatoes. But not this year. The tomatoes continue to lag behind in ripening.

But they are gorgeous: 

Brad's Atomic Grape

Cherokee Carbon Heritage 

The peppers, on the other hand, have been growing quietly and steadily, with no fanfare. I picked several last week for this beautiful array:

First pepper harvest: Purple Beauty and Cubanelle 

Some went to meals (roasted peppers with cheese) and the rest got chopped and bagged for the freezer.

The Trail of Years pole beans are started to mature as well. The pods turn a greenish purple when they are ripe and I am just now seeing them turn:

The earliest ones turning

I am really looking forward to these for cooking and maybe for drying.

The disappointment this year has been the broccoli. I planted three healthy plants and they took hold and grew. Last week I noticed that the heads suddenly looking unusually shaggy; florets were growing up above the crown. I cut one for supper and found myself cutting away a lot of it: something not quite right. Not bugs, not rabbits, not sure what. I didn't think too much about it until I cut the second one yesterday to prep it and ended up with over half of the broccoli inedible. The core of the broccoli was rotting, literally. Those florets that had shot above the crown? I think they were trying to escape the spread. I cut the third and last one this morning and found more of the same.  I salvaged what I could for eating and the rest will go to compost. 

All I can think of is the title Heart of Darkness:

This is what all three heads looked like inside: not pretty 

Insofar as I am working through personal issues of capacity, the loss of the broccoli makes it easy for me to say "no broccoli" next year.  Yes, I am already planning next year's gardens. Not intensely, mind you, but keeping notes in my harden notebook about results, issues, and such.

And keeping my focus on this year's gardens, surely there will be tomatoes coming my way. Soon, I hope. 

One Final Reflection

 

Photo by Jaunathan Gagnon on Unsplash

Last week I wrote two posts about my increasing awareness of being chronically disabled from the physical toll of 19 years of cancer and 18+ years of treatment. This week I had appointments with two different medical providers, and they added their own perspectives to my thoughts.

And maybe now I am ready to come to terms with where I am.

The first appointment was with my personal physician, with whom I have a great relationship. I shared with her some of the thoughts I have been mucking around in as I come to accept that I am disabled. She looked at me, then said, "You do know that you became chronically disabled the day you were diagnosed, yes?" Oh, yeah, I do know that, but it was never really on my mind until these newer changes and and their emotional and physical impacts on me.

The very next day I was at oncology and had an appointment with Katie, one of the Certified Nurse Practitioners there (Tim was rounding). I shared with her the same  thoughts and she said, "I hear you. It is a bitter pill to swallow." She then suggested that I focus on my abilities and capabilities, which are numerous. Katie did not present this in a chipper "Count your blessings!" tone or suggest I was being self-indulgent given my longevity with the myeloma, but was very matter-of-fact. Yes, it is bitter and yes, you are still here.

My barn having burned down, I can now see the moon. 

That is a 17th century haiku by Mizuta Masahide, a Japanese poet and, yes, a samurai. I used to keep it taped above my desk at Juvenile Court. And I think that sums up where I am: the barn is burned to the ground, but what a view of the moon I now have.

This Year's Gardens: Part 7

 

The first two tomatoes. Yes! Or, as I still use this great phrase from my years with the Cubans: al fin! 

These are from one of the two Husky Red cherries I planted. An Early Girl nearby is trying to get her act together, but these two just sailed across the finish line. I found them about 30 minutes ago when I was deadheading some marigolds and looked past the border into the heart of the tomato plant. 

Now it feels like summer. 

***And on an absolutely irrelevant (to gardening, that is) note,  "Deadheading" has a whole different meaning for those of us who are Grateful Dead/Dead fans (when Jerry Garcia died in 1995, the remaining original members agreed to not use the "Grateful" again in the band's name). Just saying. The Dead just finished off one final tour—the Final Tour—of the US to end a stunning decades-long history. Their last concerts were in San Francisco, the city where it all started, last weekend. My dear son Ben caught the Final Tour concert in Philadelphia this June; he still has the ticket in his wallet from 2003 (when he was still in high school) from the very first time he saw them. Now that's a Dead fan. 

A Handful of Frugal Moments

Last week, Melissa Clark of the New York Times wrote an article on "How to Make No-Churn Salted Caramel Ice Cream" (also titled "The Easiest Salted Caramel Ice Cream Doesn’t Require a Machine"). I like Clark's writings and she did her usual excellent job of describing the process, the ingredients, and the results. 

However, this being the New York Times, the recipe was available only if you are subscribed to its special Cooking subscription, which is not included in a regular subscription. I believe the Cooking subscription is $1.25 a week.

A week. That is $65.00 a year. While I am quite willing to pay $20 every four weeks for a subscription to the Times (and yes, at $260 a year, I admit that this is both a privilege and a luxury), I am not willing to subscribe to an additional feature that I know I would use only sporadically. I know, I could subscribe for a week, spend a chunk of my time sifting through the recipes for gold, then cancel, but life is short. (This reminds me of when a friend, hearing me rave about Reservation Dogs when it premiered, said "Well, you could subscribe to Hulu for the new subscriber rate, binge watch, then cancel." Yeah, I could.)

So without access to the special Cooking subscription, I did what many of us do: I Googled "no-churn salted caramel ice cream." Within a few minutes, I found one that followed the spirit, ingredients, and process of the one Melissa Clark wrote about, and decided to follow it.

That was Frugal Moment #1: Coming up with an alternative recipe without paying for it.

The recipes called for three ingredients: heavy cream, sweetened condensed milk, and caramel sauce. The first two went on the list for a very brief shopping trip Sunday morning.

The caramel sauce? 

Well, that was Frugal Moment #2. A number of years ago, at one of our monthly legal clinics, a dear friend who was also one of our regular volunteers came to me with a smile and something hidden behind her back. "I thought of you when I saw this," she said. 

It was a jar of caramel sauce. It has sat on a kitchen shelf ever since, just waiting for its moment in the spotlight. 

How long has it waited? Well, the lid has a best used date of...March, 2015. Knowing how items are dated, that jar and gift may date back to 2014. 

No problem. It was fresh and it poured as needed. 

The very patient caramel sauce
(Sounds like a children's book title, doesn't it?)

The recipe took less than 20 minutes to make, with cleanup taking another 10. And the result? 

Superb.

Taste testing! I think our two scoops per serving equal one scoop from a shop. 

I did a little math about this dessert. Since we had the caramel sauce already, that left the heavy cream ($2.89) and the sweetened condensed milk ($2.19) as the outlay for what filled a two-quart loaf pan. To put that quantity into perspective, a container of ice cream at the store is generally 1.5 quart, not 2 quarts (which would be a half gallon, the standard of my childhood). So for $5.08, we have a half gallon of heaven.

And to put that $5.08 into further perspective, I measured it against the places we go when we treat ourselves to ice cream. Downtown at Whit's, which is within easy walking distance, for two one-scoop servings? $8.00. Handmade incredible ice cream at Sticky Fingers in Kilbourne? Two single scoops at $3.95 each, or $7.90. Kilbourne is 6.5 miles, more or less, from Delaware, so add gas too for a 13-mile round trip. Midway Market in Ostrander, which carries delicious Hershey ice cream flavors? Two single scoops for $3.00 each, or $6.00 total, and that is a 16 miles round trip. (I am not comparing prices to soft-serve ice cream, because that really is a whole different food group, but I will just note that our favorite soft-serve stand, for very sentimental reasons, is in a little village called Prospect, which is 14 miles away. We usually spend somewhere from $5.00 to $6.00 for our combined orders.) 

It all adds up. And that was Frugal Moment #3: we beat the spread. By a long shot. Because we will be getting more than 2 scoops of deliciousness from this recipe. In fact, the next day I divided the ice cream into containers for later. (Of course, I saved some for now!)

Plenty left after our initial tasting! 

There are many other reasons for going out for ice cream. Spending time away with no interruptions of office or shop is one. This allows us, especially Warren, to set aside some of the daily stress and stressors. Giving ourselves a different space in which to talk is another. (This is sometimes related to setting aside stress, sometimes related to feeling we need to connect differently after a hard day.) Meeting up with friends coming in from another direction for an ice cream rendezvous is another great reason (yes, David, I mean you and Vinny). So I am not beating myself (or ourselves) up for taking those ice cream trips and I know they will continue. 

But this week, at least, we are enjoying our homemade, handmade, fancy-schmancy NYT knockoff salted caramel ice cream and savoring every single bite. And the frugality, goofy though it may sound at times, makes it all the sweeter. 

This Year's Gardens: Part 6

 While the tomatoes take their sweet time about ripening and the zucchinis vines lounge around like long-ago debutantes in their big yellow blooms, the basil has been coming on like gangbusters. Enough so that I could cut quite a bit and make pesto this weekend. 

How do I make pesto? The very best "recipe" I ever read came out of the New York Times several years back. The reporters were on a hunt for the best in-house pesto on the menu of restaurants in the Hudson Valley. When they decided they had found the best (using such criteria as taste (of course), texture, and consistency), they asked the restauranteur if she would share her recipe. Absolutely, she said. She put basil leaves, olive oil, garlic, parmesan (or other) cheese, and pecans into a food processor and started it up. She would add more of any of those ingredients if she felt the batch needed it, and would throw in some salt and sometimes pepper. 

That was it. She made pesto totally by feel and taste and sight. Did it look right? What did it taste like? Was something missing? What was the consistency? Was it pesto to her? If not, then she would add this or that of the basic ingredients to make what she wanted and expected her pesto to be.

I read that article and adopted her approach wholeheartedly. It has never failed me. As an extra bonus, my beloved Grandma Skatzes comes to mind when I make pesto. She was almost entirely deaf and had very little vision in her later years, so Grandma cooked by feel and by taste. Although she never tasted, let alone made, pesto in her life, Grandma would have understood the approach immediately. 

I gladly share my "recipe" when asked. The recipe always baffles the person asking for it.  "So how much basil do I need?" As much as you want. "Well, how much olive oil?" Whatever it takes. Just trust the process and trust your senses. I think it is that last comment—just trust your senses—that throws the person off. Just trust my senses? What does that even mean?

Here is my weekend adventure in three abbreviated steps. 

Cut and wash the basil:

Throw everything in the food processor and hit the start button:

Check to make sure the results pass your personal pesto test (look at it, stir it, smell it, taste it):

If the end product tastes like pesto to you, you are golden! Pack it away in small containers (pesto freezes wonderfully) and clean up the bowls and food processor. Life is good. 

There will be more pesto making in the weeks ahead. In the late summer, I will let the basil go to flower (I have already been nipping buds off with my fingers) so the bees can enjoy them. 

And one of those days, one of those tomatoes will ripen! 

Upon Further Reflection

Earlier this week, I wrote about the ever-changing landscape of my physical self and about my coming to terms with my increasing limitations. After I posted it, I thought, "Oh my gosh, I left out Jesse Stuart."

Jesse Stuart was a writer, now not often recalled or even mentioned in most places, although at one time he was one of the most anthologized writers in America. He is now largely remembered as a regional writer, as a writer of Appalachia, as a minor writer. His works included poetry, novels, children's books, and memoirs. 

My own connection to Stuart is far more direct than just reading his books. Stuart was born in the hills outside of Greenup, Kentucky, in the same area where my father's paternal and maternal families were also rooted. W-Hollow Road was a turnoff right by where my Grandma Gullet, my great-grandmother, lived in her later years. Stuart grew up in that area, taught in that area, and eventually established a home and farm on W-Hollow. (The farm is now a State Nature Preserve, created by Stuart before his death.) My grandfather, Grandpa Nelson, very close in age to Stuart, gave him a ride (on horseback) at least once when Stuart was walking back and forth between the hills where he taught and the town of Greenup, where he bought supplies for his classrooms. When I read Stuart, I hear familiar language and recognize the landscapes he describes. 

So what does that have to do with my thoughts about my own changing capacity?

When Stuart was 49 years old, he had a massive heart attack that all but killed him. He had a long, slow convalescence, all of which took place at W-Hollow once he was stable enough to be moved. (He was on a speaking tour when it happened; it was over a month before he could be moved safely back home, some 400 miles away.) Stuart was weak, he was depressed, and he was an invalid. No visitors, no excitement, very limited walking and movement until he built up his resistance and his heart healed. Although Stuart was a writer, his typewriter (this is 1954) had been put away because the doctors were concerned that he would damage his heart further using it. 

 Stuart's hands were stiff and he had no intention of squeezing a rubber ball to bring them back to life. So his doctors agreed he could write, with pen and paper, for a limited amount of time each day (two pages worth, initially).

The result of Stuart being given back a means to write was a yearlong journal, started on January 1, 1955, and ending on December 31. Stuart did not write every day, but he wrote often. He captured his moods, his physical well-being, and his slow and often painful journey to better health. He was acutely aware that he was now a "cardiac," and that this was a permanent disability that he had to live with for the rest of his life; his entries are threaded through with reflections on what that means. He wrote about his parents, he captured the sweep and scope of the seasons in his beloved W-Hollow. In his very last entry, Stuart wrote "[T]his is the year of my rebirth, from my death to my morning."

I had read excerpts from the journal, aptly titled The Year of My Rebirth, over the years. Coming into this summer, aware of my changing capacity, I remembered Stuart's book. No copies exist within the library systems I can tap into (most of the state) so I bought a copy. (I know, April doesn't buy things. But sometimes there are exceptions.) I have read it in pieces, setting it aside as library books with due dates come available. Presently, I am in October.

Reading Stuart has been a gift. His words from almost 70 years ago have given me reassurance and, perhaps, some needed support. My capacity has changed (and will continue to change) but I am still here. 

This Year's Gardens: Part 5

While watering the kitchen garden this morning, I stopped and yelled for Warren.

"A bean! A BEAN!" 

Cherokee Trail of Tears heritage pole beans

Warren came out of his shop and following my finger, then smiled. 

Indeed, a bean!

The garden is growing by leaps and bounds in some areas, by fits and starts in other. We are eating salads from the garden; the weather overall has stayed cloudy and cooler, so the lettuce has not burnt out. That's Black Seeded Simpson there that is filling our bowls:

Tomatoes are thickening on the vines, but nothing is ready. Last year, I picked the first ripe tomato on July 8. I am not even sure I will have a ripe one by July 18 this year. There will be a bountiful harvest at some point, but not yet.

The flowers and flowering plants are putting forth shows of color and variety, The cone flowers are in full swing:

The hostas are blooming too: 

And this is a Cup Plant, courtesy of our backyard neighbors. Dave brought me a planting last summer, warning me that it grows tall and likes to colonize, but right now it is behaving itself in its first year.

Bees love it; I will be trying to capture a few with my camera (no luck yet): 

The agastache, which we moved from the front bed to the back, is starting to bloom. It, too, is another bee-magnet throughout the summer:

And even the globe thistle is ready to join the show:

In the Hej garden, the zucchini are in blossom, but I am concerned about whether they are getting pollinated. Time will tell. And between the two gardens, the cruciferous plants in the kitchen garden (red cabbage, broccoli) are doing far better than the ones in the back (cauliflower and another type of cabbage). Something—insect, not animal—is having a field day on those in the Hej garden. I have no seen any insect movement on or around the plants, but something is clearly feasting. It happens.

Flowers, bees, almost ripe tomatoes, beans, and more. Life is good. 

Reflections

 

Photo by Wesley Tingey on Unsplash

Reflections.

I'm not even sure I like that title. But I have been kicking it around in my head (and on the coffee table in the downstairs study) long enough that I will go with it while I write.

In one of those perfect synchronous moments, a letter from my friend Tani (who I have known for almost 4 decades now), Disability Pride Month (July), and my own internal struggles all hit on July 1. My feeling had been simmering for a few weeks, but the sweet combination of Tani's words and the editorial comment on the the Poem-A-Day for July 1, "A Sick-Room Idyll" by Williams Gay, tipped me from simmer to bubbling. 

The editorial comment on the poem was that it offered "a rare glimpse into disability space." Tani matched it as she hashed through her thoughts on the possibility of being "chronically severely disabled." Those thoughts wove deftly into my own reflections (that word again!) on what I coming to see as my "new" limitations. 

In late June, while posting a garden update, I wrote about my capacity, which is an ever-changing measure. When I was writing it, I was thinking about a mid-month trip to Pittsburgh that had rattled my conviction that I was just a "little tired." Shortly after that post, Warren and I had a long conversation about a long-planned vacation east and agreed to cancel it. There was a little bit of sadness in that decision, but also some relief. (And to be fair, the concern about my physical limitations was only one of four factors that caused us to pull the plug.) 

Tani wrote about her mental and physical bandwidth being impacted by her situation. I like that term: bandwidth. I replied with a thumbnail synopsis of where I am at: energy levels, decent. But endurance levels? Nope. I can go and do, but then I am done. A vacation with a lot of driving and sightseeing? Ha! The adrenaline would carry me along for a bit, but then I would collapse—exhausted, unwell, and totally drained, with a bandwidth of zero. And based on what I have been experiencing, the recovery time would be extensive. I doubt my body can take it. 

Yeah.

So, like Tani, my thoughts dwell increasingly on being "chronically disabled" and what that means. (Come on, aren't two progressive incurable blood cancers enough?) Going back to the poem with its "rare glimpse into disability space," I increasingly think about what that may mean for me. (Not to mention my friend, Tani, who is still working with doctors and physical therapists to see whether she can make progress in her situation.) What is my disability space? What does it look like? Feel like? How will it impact me as I continue to live my life the way I want and hope to? 

Synonyms for "reflection" include "contemplation," "meditation," "rumination," and "musing." So if you see me and I seem distant, don't take it personally. I am merely ruminating and musing.

And, of course, reflecting. 

At the Half: 2023 Grocery Purchases

We just finished the month of June, end of the Second Quarter of 2023 and the halfway point through the year. I spent some time with a calculator and the file in which I keep notes on our grocery expenditures, and I am ready to report the results.

Second Quarter highlighted a trend I had not really paid attention to before. We had a month of stocking up (April), then a lean month (May), then another stocking up month (June). The results are so dramatically different that after totaling up our June expenses, I wrote this note on my findings:

(Interesting that I posed it as a question instead of a statement.) And yes, July can and will be lean because that was the point of the stocking-up grocery trip in June.

Second quarter numbers: $716.39 total, of which $28.65 was spent on non-food items such as bleach or toilet paper. That averages out to $238.80 a month, up quite a bit from the First Quarter average of $177.35. Year to date: $1248.96, or an average of $208.16 a month. My goal when I noted the First Quarter expenditures was to come in at an average of $200.00/month, and I still think that figure is attainable. 

I made some further observations beyond the pattern of a heavy month followed by a lean month. There were some freebies in the Second Quarter, typically because of store perks or rewards. (On that note, ALL of the laundry detergent we have (several bottles at present) are either free or almost free (less than a dollar) because I get "Bonus Bucks" from CVS, where I fill prescriptions.) And there are a couple of indulgences (mild by many standards): we bought large packs of chicken thighs rather than drumsticks, at a cost of 20¢ more a pound, because we prefer thighs over drumsticks. And there is a pasta that Aldi carries, its Priano label, that we buy for linguine rather than the cheaper Reggano label, because we like the Priano better. (We use Reggano when buying penne pasta, finding it just as good and cheaper than we can find at Kroger, unless there is a sale going on.) I can live with those "splurges."

We try to be frugal with our expenditures for lots of reasons, starting with the reality that neither of us are shoppers just for the sake of shopping. (That is especially true of me; I have never enjoyed shopping, be it for clothing, food, or what have you. I love books, my one shopping weakness in decades past, but even that itch has died down to embers.) So it it is pretty easy for us when we do enter a grocery store to stick to the list. Some ask me whether we feel our limited food purchases makes it boring to eat or hard to come up with meals. I do 99.999% of the cooking, so I will answer that succinctly: No. I enjoy coming up with tasty concoctions made from what we have on hand, and if I can have leftovers for the next day, then bonus points for me! We always have staples, and that too makes planning and cooking easier. And to paraphrase Hope Ware of Under the Median, recipes are a suggestion list, not a mandatory you-must-do-exactly-this-for-this-dish mandate, so that makes cooking easier, less stressful, and far less taxing. 

2023 is halfway done! On to Third Quarter!