Muscular Dystrophy - and Carter -

I have a 16 year old grandson who has MD. He's a beautiful boy, and he is carrying a heavy load, as are his parents. To be "normal" is tough enough for anyone who wants to not stand out in a crowd, but to be "normal" when your body is not cooperating, is difficult. Defining self is hard hard hard, and accepting our life's journey - as "different" has to be difficult. 

His parents are amazing - he is just their son, yet they are fiercely protective as well as being advocates for his disability as well as his normalness. 

This blog post definitely puts a different perspective on dis-ability. Take a read. 

The New Man on the Team - Lessons -

Right before we moved to Alabama, from Utah, a friend gave me some fine words of wisdom: "Don't say, 'Where I come from we do it this way.' Listen first, watch second, talk last."

That advice came in handy as I watched Edie drop the watermelon onto the concrete patio rather than cut it into slices. It worked when I was asked to decorate for the annual Christmas Tree Festival, and when Pops brought over green tomatoes, rather than cringe, I asked him, "How do you use these?" Rather than wonder (outloud) why on earth he'd picked these big beautiful tomatoes before they turned red. 

Of course, this was more than 25 years ago, and lots of experiences since - and yet this phrase and lesson have always been in the forefront of my mind. I've tried to go into a conversation, a meeting, a new job, a group of people, with an open mind, throwing my agenda out the window and adopting a "teach me," outlook. 

This does also go along with the value of "Nobody care how much you know until they know how much you care," that I was taught by both parents - part of the hospitality "the customer is always right" mentality, yet also that "shut up and listen" attitude both of my parents were pros at. 

That doesn't mean I don't have an ego or that I can't jump into a conversation and quickly insert my foot, yet I've learned over the years that if I'm not teaching (not lecturing, but teaching) I need to check my ego at the door and walk into the situation open and teachable. 

One experience that really pushed my boundaries on the "watch first" attitude was when I went to work as the office manager for an automotive development firm. Quite the experience going into the staff meeting, three women among 25 men, and listen to them talk using computer acronyms an automotive terminology. So foreign to me! I wrote a note on my pad - "How on earth am I going to learn this language?" And then I did - by asking questions and listening. This was one place where, even if I'd had an agenda, it wouldn't have worked! 

And yet there have been plenty of times where I've known the language, but needed to listen to material presented before showing my own knowledge. And there have been plenty of times where I've been the one presenting material, the expert on "green tomatoes," and yet asked for input from others. 

The team I work with (not for) has grown from a tight-knit group of 5 to a larger group of 10, as well as several managers and several teams we collaborate with. We've had to do a delicate dance to not only hire, but acclimate the newbie to "our way," while also listening to their ideas and suggestions. It's a give and take - and until a couple of weeks ago, we've done this adjusting pretty well. Yet hiring someone who "knows" and isn't afraid to tell can be gut-wrenching to a team. 

I'm reminded of a student who came to my writing class the first day with half of his research done on a paper about Harley Davidson's, with an "I've got this" attitude, and only wanting to finish this paper for his A. And when he told me his way of doing things, and I listened, and then told him that he would need to learn my way, he was pretty upset. Because his way had worked just great - indeed, "I've written a lot, I just need to pass this class." He wasn't about to learn anything new, only to show that he already knew. And he lasted about 3 weeks, until the first preliminary research paper was due - which he couldn't/wouldn't write. 

And so - the new guy on the block knows everything, wants to make sure we all know he knows, and isn't afraid to corner any member of the team to tell us how he sees us fitting into his practice; with "This is how I did it here . . ." being his constant phrase. Ouch! Team work? And when I mildly called him on it yesterday - well, let's say, it didn't pertain to him - he knew that! 

And life goes on! Guess I'll see what I can learn from him! 

Gary Wayne Pettus - CoVid -

 Early March, I was in my office in a meeting with my Palliative Care team. One of our members said that he believed we all would be personally affected by the virus - we would know someone who would die from it. And when musician, John Prine, died I cried, and I thought, yup, that's it. And then Broadway actor, Nick Cordero, died, and I thought - too young, just too young. I've had patients pass, seeing their families and their caregivers hurt and ache from their deaths and the extreme loss of not being with their loved one. And then Gary died on Saturday. I cried until there were no more tears. I've prayed for him and his family for weeks, since learning about his hospitalization. I've prayed for his caregivers, knowing they would fall in love with this gentle giant and his loving family. I've prayed there would be a miracle, and even last week was hopeful one was arriving, that would bring him to his Alabama home. Yet no.

I am better because of Gary and his family - they opened their arms to us when we moved to Alabama - we had meals with them, picked ginormous blueberries at their home, had conversations on the porch, and after our move to Utah, we remained in contact through the years - mourning Vicki's death, watching his beautiful family grow, keeping in touch with Noble, Johanna, Amy, Marion, and loving Cheryl like a best friend (this was taken May 2019).

Whenever, which is often, I think of the Pettus family, I think of a poem Gary shared in a Sacrament meeting, shortly after we arrived in the South. I wish I could find it now, yet the most important line, shared with Gary's slow, deliberate, Southern accent, impacted me, taught me to accept others where they are and learn from them, and still does - "Hush your mouth, child, I am the South."

Gary - 'til we meet again.

CoVid - thank God for memories.

https://www.deseret.com/faith/2020/9/5/21424548/covid-19-birmingham-temple-president-mormon-latter-day-saint-pandemic?fbclid=IwAR1gHI50VKR--eWO-HiX597RxCzovA_aFxLCFPGZnc-RqiQIW4LdnMPaFKw

https://www.lorettomemorialchapel.com/obituary/gary-pettus?fbclid=IwAR1gHI50VKR--eWO-HiX597RxCzovA_aFxLCFPGZnc-RqiQIW4LdnMPaFKw

Dear Trudy - Summer Review -

 One of my lifelong besties, Trudy, sent me a great email with her summer highlights and lowlights. Below is my response to her. And you. 

Dear Trudy, 

The weekend of Memorial Day, I told Ihor, our Ukrainian guest, about the official meaning related to the day as well as the unofficial - marking the first day of Summer. And here we are now, just a few days away from marking the last day of summer, and we have Zach, our South Dakota guest with us. 

Ihor? He stayed with us in February as our Airbnb guest, and when CoVid struck, and he wasn't able to come and go from his home back to Orem, for work, on a monthly basis, stayed. Thankfully, he was a wonderful guest, and Scott and I really grew to love him. He brought good energy to our home, he was clean, he was kind, and he loved bringing home a fresh pineapple as a gift (I don't think I've eaten this much pineapple in my life). We enjoyed answering his questions about the USA, politics, holidays, giving travel suggestions (Mt. Rushmore with friends in 2 days), and listening to him as his English improved. His wife came for the last month, and that was a little cumbersome, yet we were able to share our lives with them both. They loved Utah, and Ihor, after several West and West Coast trips, said our area was the most beautiful of all the places he visited. He loved the mountains, thought Utah Lake was just splendid, and he appreciated no high-rises and little traffic. He often commented on the selection of food in the grocery stores and the smooth roads he got to drive on. Ihor's work visa was for 6 months, and that ran out on Aug. 22! Our new guest (more later) arrived on Aug. 25, so Ihor moved in with a few other temporary guys on Aug. 15, and he's still there - thank you CoVid, unfinished projects, and a good attorney. 

As for Scott and me, our summer began with a trip to Driggs, Idaho and the gorgeous Idaho-side of the Tetons. With CoVid, the area was super-quiet, and we enjoyed our time. You can never go wrong with the gorgeous drive from Driggs through the farmlands to Ashton. Seriously one of the top drives in the world - regardless of season. 

With no concerts to attend or summer festivals to participate in, this summer has been odd. We've kept busy, in atypical ways. Scott has taken care of our yard and Mom's (83, dementia has taken away her short-term memory, caused confusion and cloudiness, makes taking on a project impossible, and rational thinking non-existent), and they are stunning. Scott has also been working on a 1962 Grand Prix, with it now ready to drive around town (from engine to upholstery, this novice has done it all, and done it well). Scott has also spent his AA time visiting with 2-3 of his friends on a weekly basis. 

I have moved from working remotely all spring (new word for work-from-home) to spending more time in the office. I've been at our satellite hospital in Murray 1-3 times a week supporting CoVid staff. I created a "Respite Room" for staff to retreat to for short breaks, complete with staff, and then determined that what they really needed was one on one support, so I've been visiting staff at their stations the past couple of weeks. As well, myself and another chaplain created "Connect with a Chaplain" phone line for caregivers and patients to reach out to a chaplain (me) during work hours. This is specifically for facilities that do not have a chaplain onsite. Ironically, most of the calls have come from the Murray hospital. So, I'm getting to know staff and having the opportunity to spend time with them. Besides these 2 projects, I'm continuing to see patients, mostly in the clinic. I've also become a face mask snob - definitely have my preference for mask, and I will be as happy as anyone when this is not the norm, yet I'm sure some changes will be permanent. 

I do love my work. I love listening, and I'm finding that I'm doing more and more of that, even in my personal life. Listening is probably what I do best! And this time of CoVid has really been quiet time for me; spring was great, and summer with the new norm has been a little jarring! I love giving hope, validating patients fears and concerns, and I won't say this out loud - but I know what my own cancer journey was about. 

It's been good to see children; we've tried to spend time with them individually, not having any big family get-togethers. Seeing them in their own space has been delightful, whether a family dinner, a swimming party, or ice cream on the deck. They are all doing well - flourishing. 

I must say I think being old and widowed sucks. Sad for Mom - whether it's a lost password, a worry, a meal, a lost password, a concern, a moment of loneliness, or, a lost password, we spend a lot of time going back and forth from one home to another. All of the siblings, except Scott, got together one weekend for an evening of conversation, then lots of front porch visits, just to figure out how to best care for her. Our desire is to keep her in her home as long as possible - keep her safe, clean, and healthy, yet we know those weeks are numbered. Just this past week I was ready to "tap out," so I sent a text to my siblings stating I was exhausted, and I needed support. Every one of them reached out to me via text not only asking how they could help, but right-up offering help. I appreciate being able to work with them, with being the primary caregiver, but surely not alone. 

Over Pioneer Day Scott and I took a quick trip to Mt. Rushmore. What better time to follow the pioneer trail, if backwards, than over this weekend that means so much to our heritage? The drive to Evanston was horrible, yet once we reached Casper and went east, the drive was beautiful - from the prairies to the "Black" Hills covered in Ponderosa Pines. What gorgeous land. Scott and I definitely had our differences when it came to driver and passenger, and after a day full of angst, Scott became the driver, and I, the navigator. Mt. Rushmore is beautiful, the land wonderful, and the fields of Nebraska were worth the detour just to see - corn and sunflowers for miles!

Back home to intense heat, August has been in the 100's (hottest summer in 146'ish years), and I'm going back to the office for most of my work days. And, speaking of the office, 2 weddings within 3 weeks. Stephanie, our nurse, got married the middle of July, and Sarah, my office mate and our social worker got married the first of August! Stephanie is living here, and Sarah has moved to Arizona to be with her medical resident husband and his 6 year old daughter. I am missing my 30-year old bestie! We've been sharing an office for 5 years, and then one day she was gone! Gratefully, I was able to do both bride's flower bouquets and bouts, and they could not have been more different from each other, and both fun to make, although I'm fine if I wait a few years before doing another one! 

August was mostly about taking care of our yard, Mom, patients, and our sanity. I'm beginning to feel quite burnt-out. We did get to the mountains - the mountains outside of Durango, for a few days with Jenna and Cliff and kids. The mountains with beautiful Ponderosa Pines (again) and straight tall fat quackies, were stunning. The cabin was great, and I enjoyed every moment I had alone (which included nearly a full day spent reading and visiting on the phone with a friend - that seems to be rare these days. We drove through Moab, both coming and going, and then back into the heat. 

It's been 2 years since I've taught at UVU, and the last part of August is typically spent prepping for the busy semester ahead. And I guess I haven't fully removed myself from that habit. Coming home from Durango, I jumped in to cleaning the kitchen cabinets and everything inside them. I purged - filling 4 boxes with dishes, etc. that I hadn't used; my determining factors were - had I used them in the past 2 years, were they of sentimental value, and dump I did! And I've been able to add new dishes, drinking glasses, and silverware to the shelves and drawers. Over July 4th weekend we purchased a lovely small kitchen table and chairs, had a rug made to go under the table, and I really wanted the kitchen to reflect the newness and simplicity this brings to our home. It feels good. 

Semi-lastly - my feet are working! I think I mentioned that I tore ligaments and tendons in my right foot while walking the coral reef of Shark's Cove the second day of vacation in Hawaii the first week in March. The blessing in not being able to have surgery (non-urgent), is that I found a doctor who also was able to treat my terrible plantar fasciosis. I've gone from crutches for nearly 2 months to walking at least 8000 steps a day. That's miraculous considering that during 2019 I did my best to not walk! I'm still treating my feet as if they were newborns, being very gentle and cautious!  

Ihor moved out and Zach moved in! Earlier this summer an acquaintance contacted us about her son living with us this fall semester while he is going to BYU. So we had a full week with just Scott and me in our home, and now Zach is here, and he's sweet and quiet. 

I guess the big ending will be this weekend with Scott's son's daughter getting married. We're going to Cedar City for the wedding (a grand-daughter getting married!) and then spending a couple of days in Zion. Zion was our home-away-from-home for so many years, yet it has certainly become a tourist town with the main (only) street laden with  motels rather than shops and a few restaurants. But Scott needs his Southern Utah bucket filled, and this is a convenient way to tack on our Zion sojourn. 

In unrelated news - 3 articles will be published this fall. 2 essays on Utah foodways from the U of U Press, and one on religion and lay of the land in an anthology with a Western publisher - Torrey House Press. I do love writing, a great outlet through the years (8 years on this blog - and 8 years since finding my cancerous tumor)!

Well, there you go! Gosh, life is really really good, and I am hopeful (realistically). 

Love you, Ronda

Less - And JT Earle -

 Listening to a Zoom mtg. on Mindfulness the past few days. Some questions I'm being asked to ask: 

When everything is taken away, who are you? What do you have? 

If this is all there is, am I okay with that? 

And the constant reminder to be right here, right now. 

With the death of Justin Townes Earle, I'm asking this question - Is that all there is? 

Present'ism -

Presentism - Interpreting yesterday's events through today's lens - 

As Scott and I were on the tour bus taking us from Glasgow, Scotland to the Isle of Mull, a woman made a rather harsh statement to the tour guide. "The Scottish Vikings were a rough group of people. They raped, pillaged, burned, and ran rampant through Scotland. Horrible people." And the tour guide, in a calm and confident voice replied, "We cannot judge yesterday with today's standard. I cannot be in their minds or the minds of my ancestors. I can only hope that today is different, learn from the past, and move forward."

I wanted to applaud!

I've thought of this conversation over and over again whenever I want to be harsh on yesterday and glorify today, or vice-versa. Particularly when it comes to cancer and the changes it brought - meaning - I am not whom I was.

Before cancer I was . . . , post-cancer I am . . .

Before cancer I had . . . , while after cancer my life has been . . .

Before cancer I wasn't . . . , yet after cancer I have . . .

And we can all fill in these blanks, because I would imagine I'm not the only one who judges the past through rose colored glasses and today through hyper-focused sharp-shooting too clear glasses (and if your cancer-free world was nothing but beauty, I'll buy you a Diet Pepsi).

And yet - today is good! And today is harsh. And today is filled with beauty, even with the scars, the numbness, the thinning (and thickening), the pains, the tingling, the unevenness, and the triggers that show that cancer is never far from our thoughts.

Acknowledge the past and move forward. And remember that when looking at yesterday , we look at it through our today. Who can judge?

Have a great week; take care of yourself, be gentle with yourself.

Took a Drive - Mt. Rushmore -

 Scott and I road-tripped to Mt. Rushmore a few days ago. It was a l-o-n-g drive - and yet absolutely stunning. I loved the big open blue skies with white puffy clouds, and no inversion; the Ponderosa Pines that give the Black Hills their name were a beautiful surprise, and the fields of Nebraska that went on and on and one brought me peace. Mt. Rushmore and Crazy Horse were quite the sight.