friday afternoon

I wrote a note to the supervisor of Julia’s current day program this morning, thanking her and the staff for the care they’ve shown to Julia over this past year or 14 months. Julia was expected to begin her new placement at The Price Center on Monday.

Transportation called and Julia was set to be picked up on Monday between 7:45 and 8:15.  The dispatcher said the window will get smaller once the route was established.  

I emailed DDS and The Price Center checking to make sure everything is ready to go for Monday and asking for confirmation. I kinda’ really wanted confirmation from as many people as possible because I was nervous.  We have been exchanging emails all week to get ready for Monday, and although Monday has been in everyone’s email, I don’t have a definitive, absolute pronouncement that all ducks are in a row for Monday.

Will this be a soft landing?  Will this be the right program?  At least, an appropriate program for this moment? Will Julia like it?

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the ride

Morning wait for The Ride.  Julia takes The Ride to her day center.  The Ride is our MTA van transportation for people with disabilities.  We are lucky to have something like it. Sometimes lucky; sometimes a curse. 

The Ride is safe, the drivers are helpful, the interface be it on computer or the phone are relatively effective.  The flaw in the scheme is reliability.  The Ride is notoriously unreliable.  So much so that Julia new day center does not allow clients to use The Ride to and from the center.

And I understand.

The Ride comes early, the Ride comes late, and sometimes it doesn’t come at all. A few times, The Ride has come to the wrong address and left, blaming Julia for not being available. Occasionally, they have used Lyft to pick Julia up from her day center and the Lyft driver has no idea that Julia will not be waiting outside for the Lyft car. 

Using The Ride for the past 15 months, I’ve come to understand how and when to communicate with the dispatchers.  If I find out that a Lyft vehicle will be used, I call and ask that the driver be given specific instructions. No one likes doing this. When The Ride fails to show up and I call the dispatcher for an immediate re-schedule, I refuse to be transferred to a department where I can lodge a complaint.  I don’t want to complain, I want the ride.

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just a few thoughts and words

Once again, to begin again, to begin again and to wonder if it is possible to begin again, and to wonder what is possible in the long run other than the daily round.

I feel like I have been very far away.  Every so often during the last weeks, I’ve had the slight impulse to write something, a slight burst of energy. But all energy has been spent doing work for my UU church’s annual pledge drive (“APD”).  I am on the pledge drive team, such an unlikely position for me to take up. It is far out of my comfort level and the changes that have been made to the drive this year have pulled the work only further beyond my ken. However, I’ve had the chance to work on a few parties and thank goodness, parties are in my bailiwick. Two parties in two nights last weekend, and I admit I was quite flattened by exhaustion. The APD has one more big blow out of a party this weekend, and then the work shifts in nature.  There is at least another month to it but no more entertaining.  

And so, I start this way, writing about the pledge drive and the parties because it is where I can start.  At the moment, I am far from she who writes every day and sometimes comes up with something thoughtful.  I haven’t looked at the memoir in months and have only been working on a few thousand words of the novel at a month. I have not been keeping written tabs on daily life or Julia’s doings.  

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february

It has been a whole month. So much has been left undone and much of that has fallen aside. Right now, there are no projects needing completion and no tasks that I’ve scheduled. So many naps, staring at ceilings and walls, much too much junky tv, a bit of reading, some writing, and last week the beginning of walking outside.  Yesterday, I logged a bit more than 5,000 steps.  Not that impressive, I know, but if you saw my numbers for the last month, it looks like I climbed mountains yesterday.  

I went to chuch services last week and will again yesterday. I still have very little voice—a month of coughing can wreak havoc on the vocal cords—so no choir yet.  Maybe this week.  I miss choir practice. 

I’m still not feeling up to driving but again, perhaps this week. It has been a focus issue and then also exhaustion. As I began to feel more like myself last week, writing was not easy.  Not the physical act but the focus needed.  I have it for short amounts of time, but not for what I needed to produce anything. However, what I wanted to do almost as soon as I was able to sit up for long periods of time was to indulge in some mindless beauty and do something with my hands.  

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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!

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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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