Author: Suzanne Buchko

new year’s day

I lay on my red couch in the sun.  I imagine that the sun, as well as the gallon of water and coconut juice, not to mention my kale salad lunch is healing me. 

It is another quiet day right that began right after Julia left for her program and Ed for his daily round. A few texts, a Facebook message, a phone call—that’s all that break the quiet. I am reading Seamus Deane’s Reading in the Dark, for a new HILR class that begins at the beginning of next month. The book—memoir or fiction—is beautiful.  I  read slowly to savor the metaphors and adjectives. The sentences, every single one, is rich dessert. Or perhaps it is the protien rich mind meal that I need to pick up where I have left off of on the callendar’s new year’s day.

Today is my new year’s day and a strange one it is at that.  Never before have I needed so much to recover and heal, never before have I so much needed to nap—well, that is probably not true but this nap need has probably laid dormant for three score and ten years.  

I have great gratitude today for today and yesterday and tomorrow and for those who people my life when it is very small and when it grow again bigger.  

It is all very good.

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birthday girl

She had a very low key birthday because I have been confined to the house or hospital since New Year’s. However, my VNM, aka Ed Childs, brought home her favorite take out, bought her a lucky 2025 bag of Japanese beauty stuff and nifty socks, and served us strawberry short cake for dessert.

And just like that, the little girl who I met when she was five and a half turned 24.

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off oxygen

This morning I woke up ready to take off the oxygen. Just ready.

Healing was looking good on Sunday. The nurses and techs were encouraging me to move about the house, to do a few things, nothing extravagent but easy chores.  Christmas still needed to be put away. Ed and Julia had brought up my 4 christmas boxes and I had taken down a little bit a few days before.  I needed to straighten the boxes, put away garland and some of the lights, and then tackle the tree.

And I felt ready.

These sick days have found a rhythm of nurse and PT visits and meals and phone calls and email.  After lunch and a nap, I was ready to tackle christmas. I was puttering when a pain crept up in my chest. It bloomed on the right side of my chest and radiated into my jaw. It was not intense but present and different from anything I had felt before.  I debated whether to call the nursing line, remembering vividly the mistakes of not calling that David made.

And I called.

I relayed my information but the nurse was not too concerned.  She said she would push up my afternoon visit but to otherwise just continue as I was.  Then, 20 minutes or so (my time awareness of the next few hours fractured. It was 20 minutes, it was 2 hours.  I wasn’t 2 hours but it might have been much longer than 30 minutes). Then, the pain happened again. More intense this time, longer, and did not immediately fade.  It retreated very gradually, especially in my jaw.

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another notice to all who read here

Thank you for reading what I put on these pages. It is always surprising, shocking and amazing that I have a reading community that goes beyond my immediate friends. Your continues presence continues to inspire me to move beyond my perceived limitations. Thank you for your words of encouragement and advice, and for just showing up.

And to my immediate friends, I am profoundly grateful for your interest, your love and your care. I write because I have to write, but I publish here because I have a need to share. In the analogue workings of my mind, I have a vision of a bunch of us sitting on the couches at the Lakeside Coffee Shop in Madison just catching up.

Many of you read my posts via Facebook. In the coming days and months, I am contemplating moving away from Facebook for a short time or forever. I would ask those of you with whom Facebook is our connection to consider subscribing or following ChasingJoy on this page. If the process to do so is not clear, I will try to clarify it in the coming days.

Thanks and love you all!

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notice to “friends”

To anyone who voted for trump and imagines they are my friend: Today, I called my pharmacy to see if someone else could pick up Julia’s four monthly perscriptions because I am not allowed to drive yet. During our phone call, the pharmacist said that Julia’s new perscription plan had not yet kicked in and so, the cost would be close to $700 for this month’s medications. I explained why I could not be there to give them her new perscription card and he found a way to access the card and apply it bringing the cost to $20 for the month.

Julia is insured by Medicare and Medicaid. Her perscription plan is also paid by a government program. All of those programs are threatened by the new republican administration.

If trump, musk, kennedy and the congressional majority does what they are planning in the name of government efficiency, my daughter will not have access to the medication that she needs. There are millions of people with disabilities who will face the same circumstance.

And if this happens, it is the fault of republicans, conservative christians and MAGA voters. The lack and loss of medical care to millions of Americans with disabilities will fall on your heads. It is your fault. And you are not my friend.

Hillary was absolutely right. Deplorables!

Posted on by Suzanne Buchko 2

healing

Eleven days into the new year and I have been sick each and every day.  What a way to begin something new no matter how artificial the construct of time and new years are. 

So, first off, I am home and have been since late Tuesday, arriving by ambulance because I was attached to oxygen. I am participating in a Home Hospital program. I am still technically a patient of Newton Wellsley Hospital—my wrist band and IV port prove that—but I am getting my care and monitoring at home. I needed to meet some health criteria—after lots of tests to rule out other causes for my condition, I was found to be relatively stable and treatable —as well as home condiitons like a supportive carer.  I wear a very sensitive arm band which is constantly monitored, two nursing visits each day, PT and PA visits and daily deliveries of meds. It felt like too much activity the first day to keep track of everything. Meds are delivered by the nurses when they visit but I must coordinate for myself the early morning and late night meds including five times using the nebulizer during the day.  It felt like too much to take in and actually do on Wednesday and I was quite grumpy about it all.  It didn’t help that my cough was still wicked then and answering either in person or on the phone was tortuous for everyone. 

For me; however, this is a great program. I am home.  Julia, who had a hard time when I was in the hospital, is doing much better with me home. Other than the visits and care that I am getting, there is nothing more that a hospital stay could offer me.  And I have my best carer, Ed, seeing to what I need.  I feel a bit guilty for all the cooking and shopping and cleaning up and caring for Julia and just making me as comfortable as possible that he has done.  But it is lovely having his support.  He is much more than taking-up-the-slack these days. 

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RSV

Yesterday, after hours in an emergency room bay, I was put in a holding area, hooked up to monitors and oxygen, and told I might be moved to a room later on in the evening.  It had been a long day and I was hungry, head-achy tired and still coughing but the day of oxygen cleared some of my brain and I felt a shift to giving into this process of being sick. 

My not-feeling-so-well of new year’s eve blossomed into just plain sick the next day. The seasonal cough that humidifiers and inhalers and gallons of water could not conquer shifted into something else — a dry hacking that would not stop.  The cough and chills and body aches and an exhaustion that drained every ounce of will power out of me.  

The beginning of January is probably a good time to be sick.  Julia’s activities, as well as mine, are on hold for the holidays. We had gotten through almost all of the seasonal visiting and partying. I was looking forward to a few days of lying low; however, not quite as low as I was laid. 

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consequences

New Year’s Eve has always been a veguely uncomfortable holiday for me. I’ve never been to Times Square to watch the ball fall, I don’t favor loud parties, rarely have I gone out for diner and dancing. We never built any traditions for the evening which didn’t bother me at all until I was alone.

I think I was happiest when I was working in restaurants or when David and I (and one or the other of the girls) went to movies and maybe somewhat of a quick dinner out. The turning of the century was a good NYE—a bunch of friends gathered at David’s father’s house in Jersey. We were living in Indy then and we still had NYC friends, some with small children. We cooked a nice dinner—I don’t remember what. Wine and maybe champagne. We sat in the kind of dining room that I knew growing up and ate on Dad’s good china, lifting his best wine glasses. One friend didn’t accompany his family because he was a computer guy and needed to guard his hard and soft ware if the worst case of Y2K predictions came to pass. Another friend announced that she was adopting a baby from Vietnam—the baby who now has one year old twins of her own. 

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of ghosts and christmas tree lights

I have been trying/drafting and deleting/ to explain just how this week is.  It is time out of time, ordinary moments out of ordinary order, days of big meals and late church services and traveling and visiting. And too much traffic through tunnels and delays at airports.

No flying this year, but I noticed something I have not really taken account of before.  I have been aware but not articulated to myself the presence of so many ghosts in and around every event, every visit, every meal, every ornament hanging on the tree, every candled trimmed to fit into Julia’s great grandmother’s menorah.

Not one of those events, practices or things stand by themselves. Nothing is new. Rather they are the latest version, the pencil sketch with many erased sketches beneath, the latest in the series of what I remember as winter holiday times. I am aware of both what my eyes perceive and also what I hold in my heart.

The winter holidays always bring on some blues, as they did a few weeks ago, but the sitting with the revelation of sketches in time has brought some awareness, some clarity, some way to find the joy, the blessings in the times that have past.  I am aware of the richness and the subtlety, the near inmoveable traditions dressed with the changes that time brings.

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mood and transformation

Julia is not in a good mood today.  

I woke up late today, sleeping through the alarm that I never, ever sleep through. The clock suddenly said 8:36, and the social worker, who visits us every other month as part of a Medicaid program, was due at 8:45. I jumped out of bed, pulling on my jeans as I not-so-quietly urged Julia to get up and dressed. Julia hates rushing. No, she doesn’t hate rushing, she doesn’t rush. She complains that I am rushing her which I need to do often to get her on The Ride, or to my choir rehearsal, or to a dozen other things when ‘on-time’ is relevant. If only I could bestow an understanding of time on her—on time, late, soon, rush, hurry, scheduled, delayed, tardy. Oh, so many words! 

This time deficite is absolutely nothing new. We’ve been struggling with time for almost as long as I’ve known Julia. Possibly the toughest part of the challenge is my desire/need/obsession with being on-time. 

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