About Jackie today… the week of July 4, 2024
Her father passed away five years ago, and I thank him for how he wrapped himself around raising Jackie. We stopped at the threshold of our front door the day we brought Jackie home from Fairfax Hospital after two months in the NICU and made a pact not to “ruin her” over her medical diagnosis, and we didn’t. Her father taught her to be high-spirited and independent, to go live her life and take proper care of herself. When she was around twelve, Dr. Clayton looked at me during a visit and said, “She’s becoming you.” Jackie was taking initiative then to manage her care and that she does now.
After easily qualifying for permanent disability and Medicare benefits after her lung transplant, eventually she became dissatisfied with that life and threw herself off all of it, went back to work full-time. She works in high-risk insurance underwriting for a company that put her in the entertainment division because Jackie is fun… moon bounces, golf ranges, fireworks displays. Her fingers have always flow across the keyboard and she gets a lot done in a day. Jackie’s into cooking, reading fiction with her dad’s kindle, taking classes in stained glass, exercising, running around way too much with friends, and she has the nicest boyfriend.
When I met Jonathan, he said, “I’m just an old soul.” Wow. I’ve always been an old soul. He and I are a lot alike which is a compliment to me. Buzzing behind the scenes is a lot of care. Jackie honors all her doctors did to save her life. They told us then, they did what they did because they knew she could make it. Dr. Clayton said Jackie survived her transplant by sheer will. Jackie loves clothes and travel and holidays and people and challenges. She will find her way. Binds like intestinal obstructions remind us to be ever-vigilant. She always was Happy Jack and still is. I as her mother am grateful, and grateful for everyone who stayed with us, encouraged us, cared about her survival and thriving. So again, I formally and officially thank you. And, we care back!
It’s been a long time, any sort of medical bind, and now this 4th of July week, 2024…
“Modern medicine” today remarkably transforms into “not modern” tomorrow, recognition of how quickly medicine advances. Yet cures come slowly. Never take one for granted. What we do have, a steady stream of effective treatments keeping ahead of a whole lot of hospitalizations. For Jackie, not this time. One-hundred-ten-degree heat index and cystic fibrosis, a sticky mucus disease, slammed her into the hospital. Dehydration. A high-grade intestinal obstruction. Take-your-breath-away pain. Hate-this-disease scary. Late, long hours in the emergency room, immediate intervention of intravenous fluids began the climb out. Modern medicine has gifted us much longer lives with increasingly rare side trips to not-fun places such as this one. Maybe Jackie’s July 4th vacation would have to be postponed but optimism told us it would not have to be canceled.
Life has been good for almost-thirty-three year-old Jackie, post emergency bilateral lung transplant now eight years ago. No more sticky mucus on those lungs! Thank you, our precious donor! Thank you, Fairfax Hospital transplant team, ever-committed to their ever-increasing line of successes. Always humming in the background, complex medical management keeping life normal. This hospital, two hours south of “our” hospital did the right thing… spoke with Dr. Brown and listened to her. I got lost hearing the doctor’s phone, lost listening to Dr Brown reel off from afar everything that would make him want to listen. Jackie is complicated and we have incredible Dr. Brown managing with seeming ease. Jackie is in charge now second only to her doctors and I am evermore down the list at “be there, get no sleep, and keep quiet.”
Still in, but almost out, my eyes started to notice. The door across the hall labeled “Gen-Surg Break Room.” And then a notice posted, trainings taking place in there to include “Trach Care” and “Chest Tubes,” anything but a break in that room! Are you kidding? This is a smaller hospital, seemingly sleepy except that’s insulting as people lay in quiet desperation depending on the well-trained here to save them. It’s a hospital.
A lot going on in here as the Fourth of July approached out there. The air might be hot and the humidity high but the word oppressive applies much more accurately in this place. Not what anybody wants and not what we got as resolution and discharge did soon approach. Also coming, an audio-recording of Jackie’s story, A Chance Meeting with Life, Inside an Intensive Care Unit, and Out, written by her mother what seems a long time ago. It’s a story now for those who may be curious, maybe not for those who were there in real time and already know. Maybe not for those on the edge of such a horrific medical situation themselves. Maybe for those who want to know, like those who want to know about true crimes, but true medical emergency instead. I’ll keep you posted on the recording completion should it succeed.
Jackie’s mom, Jan Price
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Pitiful
January 15, 2024
Snow is falling out of the sky… finally. No threat this time and while a threat is not what we want in the forecast creating for some, insanity, we do want a specific snowstorm long since in order, the kind we used to have, the kind that shuts down the whole world around us… with plenty of warning. Nothing’s open, no vehicles on the road, lots of looking out from the family room window, some bundling up for a magical quiet walk outdoors, hearing only the silence of a good snow and the crunching of boot steps. Snow kind of peace seekers take a rare evening walk, extra bundled up in the dark, but not so dark as lights reflect against the glistening tumbles of white, the bigger the fuzzies, the more peaceful. Rare moments like we need now, dear snow.
Not looking for the surprise attack snowstorm that leaves people stranded away from home, and worse, out on the roadside, cars every which way. And not the slushy kind where snow falls, then rain creating brown dirty slush. No thank you. We want fair warning followed by fluffs of beauty. Fine-tuning is in order here.
We want what we grew up with back in the day. Who could forget going to bed with no snow forecasted and waking up to a blizzard? Unforgettable, those snows. Our world is warmer now, forecasts more accurate… rain, rain, rain. Worse, snow followed by rain again and likely this very day, followed by another stretch of 40 and above. That’s not winter. We want the wonder and such a gift bound to arrive, and hopefully soon, dear snow, soon.
Decades Analyzed
October 4, 2023
This is a very rough draft of my thoughts on the decades of life starting at age 20. The two decades before are either too difficult to remember or too full of changes to capture. My twenties were a bust. I hated being young and new at adult life, not fully treated like the adult that I was. Twenties is a definite disadvantage in that way. Also, I was adrift in my twenties going on strange and unfulfilling dates, not sure how exactly to manage money or what to spend free time on. Thirties was better, even a favorite decade. Still looking young, it’s a time when experience as an adult pays off. Though bad things may happen in the thirties, there’s energy to spare to overcome adversity, to pick up, change trajectory, and maintain confidence.
I did like the forties, too. Still being “carded” when purchasing alcoholic beverages, I felt like I was getting away with something. Forties was fun. Parenting is not necessarily easier if teens are in the picture but the skill set to handle teens was there for me, thank goodness. Fifties was better than twenties, almost as good as forties, not as great as thirties because life is gaining on you by then and it takes some mental sorting out. Fifties faces look fifties and sixties, even more so. Can’t get away with being “young” anymore. It’s a shift. Being in the sixties decade now, the end is ahead for a few of our peers at this point in life, and the possibility of the end is something to reckon with. Not yet being in my seventies, it sure looks like people get over that and live on as if life has no end, unless there’s a diagnosis and that’s for a different story altogether.
Seventies seems good though I would not want to be working at a fast food restaurant in that decade. I always wonder what happened when I see seventy-somethings working in those sorts of entry-level jobs. But maybe the job is a chance to get out and socialize. Not saying older people don’t enjoy it. I wouldn’t.
Sixties are pretty good. A lot is under the belt and wisdom is one of them. My patience is thinner, my ability to cut out negativity kicks up several notches. I like that about this age and being that way in the twenties would be weird. It would create a freak show… someone in their twenties with the experience and wisdom of someone in their sixties. So the twenties as they were for me had to be. And the sixties has to be. In fact, every decade has to be. I am sure each person has a favorite decade, and one where they are most themselves, another decade or two that went sideways but hopefully not too sideways or for too long.
I think a decade is a good way to think about life as people. It breaks life down into manageable descriptions. And each of us has a unique look at our decades. It’s a fun, serious, interesting, uncomplicated way to look at life. And worth it.
Skin Again
Here I go again about skin. So much happens to skin that tarnishes its magnificence like unwanted hair too often in the wrong place, battled daily or nearly. And then skin predators, persistent attacks, mosquito and spider bites, chiggers and heaven forbid, scabies burrowing in. Dare I say lice, ticks and fleas that snack on us, oh please keep away, my skin someday should be free of this pestilent seize. And what about germs? Pelts that welt creating pus, words that disgust and create fears and fuss. Please, skin, let go of the redness and swelling, the scratches and scabs, the pimples, the bruises. Must my mind go towards puffiness, wrinkles, bags and sags, dark circles under the eyes, the rest pale or flush, dripping with sweat, needing a rest. I don’t like any of it until I remember skin’s magnificence, tarnished or not, the barrier we carry around without ceasing. Skin, the most loyal of all, the protector of brain and circulation, all those processes buzzing around in there. Somehow, something that thin and fragile, that invaluable fortunately remains fixable. Skin goes on that wild ride we take each day, day after day. Skin and I began together, travel along the way together, and will end together. Despite it all, pretty or not, in the end, what could be more magnificent than skin?
What About Weddings? May 13, 2023
Can we declare… everyone likes weddings? People are simultaneously happy at weddings. Most of the time, they are. I am sure parents not approving of the marriage, now those somebodies are not too happy, but I believe they try to fake it anyhow. And of course, when the marriage breaks up before a year is out, there’s cause for pause. But I’d say all in all, weddings are happy and people like them.
What’s best about weddings, besides the good food, is how happy the couple is. Getting married is a peak experience, one of those times when “ecstatic” is not an exaggeration. And when two people are that happy, it tends to spread to the rest. Everyone is happy. I know a father who developed a fever after “giving his daughter away” and had to leave the party early. And the one sitting there in the back wishing to marry, as well, may have pangs of “not so happy.” The event of a wedding pulls everyone up no matter their circumstance, and most, way up.
It’s rather nice for a hundred or two hundred, sometimes fewer and sometimes more guests to focus in on two people and celebrate their lives for a short while. It’s culture and tradition and ceremony, celebration beyond most other events throughout the year… Fourth of July fireworks, Christmas morning, New Year’s midnight, birthday and anniversary dinners, and on. Even leaving for the honeymoon isn’t as “peak” as the wedding vow part, then turning towards everyone and walking out with a huge smile. So much love to witness.
I like the dancing part afterwards, too, even more than the cake cutting part. Dancing is one of those activities that joins forces with smiling. Dancing people are smiling people. And then add wedding to it and there you go. It’s the best. Everyone enjoys sitting down to eat, too. The food is excellent on purpose because with it comes a lot of face-saving. Bad food at a wedding is a terrible thought, embarrassing. It just isn’t going to happen.
Going too long into the evening is not my cup of tea. At some point, I have to go home. I, myself, get peopled out. I hand it to the after-party folks. How do they do it? Keeping it going until after midnight is impressive. The couple, in my opinion, should be long gone. The after-party is not for them, I don’t think. They’ve got some consumating to do. Well, most probably don’t but that’s another subject.
Weddings seem more exciting these days. Maybe it’s just me thinking they are. But when there’s bad news in the world, especially bad news impacting us day-to-day, celebrations bring even more joy. We need to cut loose from the seriousness. In that way, we really should celebrate all special occasions with added vigor, yet still let weddings be over the top.
I’m not sure what I’d call our son’s wedding a couple of weeks ago. It was glorious, magnificent, wondrous, special beyond special. It was a peak experience for more than my son and his new wife. I am thankful all the way around… for the time leading up to that day with all the arranging to include what earrings and what shoes to wear, this dress or that dress. The very day, I’ll add the word magical. The whole wedding and reception were as happy as the couple was and they were very happy, both of them, the whole time. Here’s a picture that demonstrates. I am forever reminded; weddings are the best of occasions. What a day was created!
Undisciplined, Poems Left to Their Own Devices is out and I hope you love it as much as I do. Some sad, many happy, a few funny poems and here is one to share…
March 23, 2023
Hair Sanity
By Jan Price
Contradiction in hair
Depends on where
In the sink
I don’t think
In the mouth
Get it out
Hair on the ear
Cry a tear
On the legs
Matters who says
In our food
So very rude
Down the drain
Clogs remain
Caught in a zipper
Remove it quicker
Trapped in a door
Hair no more
Tossed about
You’ll find out
Flowing down
Beauty abounds
Given away
A thankful day
Curls in a row
Ready to go
Shiny and black
Who wouldn’t want that
Short and straight
Always up to date
Making it to the waist
Beauty and grace
Found elsewhere
How dare the hair
In the right place, or out
There is no doubt
Hair is insane
Yet must remain
November 4, 2022
How “the beginning” became the ending…
When Jackie’s story began, I wrote “people like Jackie stretch those limits, bringing the next set of limits in medical science in reach.” Giving me the finest compliment, my editor said she would not touch my writing, would not interfere with my unique style. She was tough on the broader concepts. Foremost, she told me the beginning had to be changed; people would be confused at the start and put the book down. So I thought maybe the writing was enough, that I did not need a beginning, did not need to share it with readers. I could be satisfied putting it in a drawer.
Then, fiddling with my phone, I came upon a note written many months before, while Jackie was in a bind in an ICU with no clear way out. It was ten pm and I was driving home from the hospital when the purest thought came into my mind. If I were to write Jackie’s story, this would be the beginning. I pulled into a gas station and wrote it in Notes on my iPhone. And I forgot about it until coming upon it after the exchange with the editor. I sent this beginning paragraph to her word for word and her response, this was it. And thus it goes, the very beginning of A Chance Meeting with Life written about Jackie by her mother, Jan Price…
“The story I am about to tell could be the story of a young girl of twenty-five who has cystic fibrosis. It could be the story of a mother who nearly lost her daughter and didn’t, and it could be about what happened to a family. It’s really a story about how strong human beings are, and capable, and resilient. Not weak, strong. We can do, and then move for- ward, and do again. We have to think of ourselves as tough like that young girl of twenty-five was tough, and her moth- er, too. This is a story about things that should not happen to a person but sometimes they do, and this time did.”
And then, the “beginning” became the ending…
“I look at Jackie. Is she here because of me, her father, because of Dr. Brown, Dr. King, Dr. Clayton, all the peo- ple who answered the phone when we made medical ap- pointments over the years, the ones who called back with test results or mailed medical records from one specialist to another? Is she here because of the gastroenterologist, the otolaryngologist, the radiologist, the endocrinologist? Is she here because of Jackie, smart and determined, and that strong will to live?
What did save Jackie’s life those months ago in Inova Fairfax Hospital’s Heart and Vascular Institute were surely the far reaches of medical science. People like Jackie stretch those limits, bringing the next set of limits in medical science in reach. We’ve suffered, we’ve given, and we’ve gained. This happened to a family, it happened to a mom, it happened to a young girl and shouldn’t have, but it did.”
There’s a whole lot in-between.
October 25, 2022
I've written hundreds of sentences... Where do they come from?
They come out of my head in a way different from other thoughts. They have a unique life I sense that is different than other thoughts. I must capture them before they flee. Some are funny, some are sad, others are veiled, cryptic as my son tells me. Here are some of them. Many are on Instagram.
Wisdom makes us gracious.
Know a hoodwinker when you see one.
A disgruntled malcontent is the worst.
Don’t be oppositional in return.
Glad I don’t have to explain to you who I am.
Popcorn is to be inhaled.
Humans sure are messy.
Go home in your own shoes.
I’m not your ten year old sibling.
Look before you leak.
Too much change makes me twitchy.