Living In the Meantime

I wore a pair of pants to work Monday that I hadn’t worn in a couple of years. They were terribly uncomfortable, and it wasn’t just because they had a zipper and a button. I regularly wear jeans. I don’t remember them being that uncomfortable before. Could be that I gained a couple pounds, or could be my weight shifting down. All day I fidgeted, and when I got home I went straight upstairs to take them off. Tuesday morning, I read this poem about commuting to work in my Poem-a-Day email.

On Working Remotely & No Longer Commuting with Chronic Pain by Camisha L. Jones

the train leaves the station without me / so does the bus / the sidewalks stay empty of my steps—the rushed ones, the ones pierced with pain, the its-too-late-at-night to still be walking ones / i keep my cash / it doesn’t load my metro card and then another card when the first one’s lost / i don’t panic in the car about leaving late—least not as much / when winter comes, i don’t sit on the cold, cold bench waiting and waiting, clutching a pair of my stockpiled hand warmers / i don’t bundle myself up in oppressive layers / or unravel in the late night, releasing the day’s pressure like a punctured balloon / instead i sit / and continue to sit / in this chair then that one / look out the window to escape the screen’s demands / wonder how i ever had fuel for those past travels / i rest / and i rise / and listen to the body that’s carried me here as it whispers the way forward

That poem got me thinking more about the opportunity Covid offers many of us  to identify things we aren’t going to add back to our lives. Whether it’s the commute, or oppressive clothing, or just the endless hamster wheel of productivity we can’t exit.  Adrie Kusserow captured this well in her poem “Mary Oliver for Corona Times” last year.

You only have to let the soft animal of your body unlearn everything capitalism has taught you,
(That you are nothing if not productive,
That consumption equals happiness,
That the most important unit is the single self.
That you are at your best when you resemble an efficient machine).

Wednesday night, I went to hear poetry at Otterbein University. Maggie Smith read from her most recent collection of poems. In one poem, “In the Grand Scheme of Things,” she contemplates common sayings like the title of the poem (as if there were a grand scheme of things), the naked eye, and the way the world works. Read it for yourself in Goldenrod.

Then  Saeed Jones read from a collection that will be published next year, Alive at the End of the World. In the poems he read, he captured the incredulity of the time in which we are living. He has more than one poem entitled “Alive at the End of the World” because if you look around, if you read the news, it feels as though the world is ending over and over again. Thursday morning, I read this in my Poem-a-Day email: 

In the Meantime by Max Garland

The river rose wildly every seventh spring
or so, and down the hatch went the town,
just a floating hat box or two, a cradle,
a cellar door like an ark to float us back
into the story of how we drown but never
for good, or long. How the ornate numbers
of the bank clock filled with flood, how
we scraped minute by minute the mud
from the hours and days until the gears
of time started to catch and count again.
Calamity is how the story goes, how
we built the books of the Bible. Not
the one for church, but the one the gods
of weather inscribed into our shoulder
blades and jawbones to grant them grit
enough to work the dumb flour of day
into bread and breath again. The world
has a habit of ending, every grandmother
and father knew well enough never to say,
so deeply was it stained into the brick
and mind. We live in the meantime
is how I remember the length of twilight
and late summer cicadas grinding the air
into what seemed like unholy racket to us,
but for them was the world’s only music

That line “The world has a habit of ending” resonated with me. This weekend I thought about what I want to give up, besides those pants, and about how to live In the Meantime while it feels like the world is collapsing around us. I went outside and looked at the leaves changing color. I swished through them, listening to the rustle. I walked in the snow, giant flakes blowing toward me, and I took deep breaths. I read poems and fiction. What are you going to give up, and how are you going to live In the Meantime? 

Autumn in South Florida

I’ve never been here this time of year before, only to the Gulf Coast. I wonder if the light will be different, and it is. Softer, more golden than blinding white. The first morning I go outside by the pool and drink my coffee. The sun is still low in the sky and it is still cool. A moderate breeze rustles the tops of the tall coconut palms while the shorter areca palms and the pygmy date palm sway. Something tickles my leg. I look down and it is a small lizard perched on my ankle, regarding me cautiously. It scampers off as I turn to look at it. As the sun rises higher in the sky and angles above the tree line, I swim in the saltwater pool. It is brisk and I have to move to stay warm, but the water is soft and clear. I lie in the sun to dry off and warm up. I am at peace….

Later we squeeze into dive gear and enter the water at the Blue Heron Bridge. We kick out beyond the swim area and descend. We head east then north until we are under the bridge, weaving slowly back and forth between the pilings, hanging weightless as a school of Atlantic spadefish wraps around us, unperturbed, regarding us with curiosity. Something we can’t discern curls itself in a tube. Arrow crabs shelter in crevices. A small sharptail eel forages, unconcerned as I follow him watching. A flounder and two skates camouflage themselves in the sand. As we make our way back to the beach, I notice something gray beneath me. I am startled and breathless as a southern stingray glides underneath me majestically and shoots out of sight…

The next morning we wake up in the dark and drag ourselves onto the boat as the sun comes up. It is still windy. I am happy to see my dive instructors from last summer, Sarah N. and Sarah W. We are heading for my favorite site, Paul’s Reef. We bounce along, setting up gear and squeezing ourselves into wetsuits. Dive-dive-dive and we are sinking slowly and then drifting effortlessly over the reef. Large barrel sponges are abundant. The reef is teeming with small life. In the sand, a hammerhead shark swims toward us and turns, fading into a shadow. For an hour we drift and then we are back in the boat, shivering in the wind. It is so windy that our attendance slate blows away. Without missing a beat, Sarah N. dives into the water, no mask and no goggles. She retrieves the slate and climbs back onto the boat, her sunglasses still around her neck.

We huddle at the front of the deck sharing stories until we reach our next site, Teardrop Reef. We are happy to slip back into the water because it is warm. We drift along again, seeing fewer sponges but more fan coral which has an intricate pattern that looks like purple lace. There are more schooling fish here. Other divers drift off and it is Ron, Sarah, and I. We hang around, watching a large pair of white spotted filefish. We circle each other with curiosity until our time is up and we have to ascend…

The next day, I swim in the ocean. The water is calm. We come back to our home for the weekend and rest in the sun. I disappear into a magical novel. We eat delicious food and take a walk. We dive the bridge one last time. The water is murky, but we see a breathtakingly beautiful spotted eagle ray, gliding by and then feeding. The last morning, we relax by the pool. I swim one last time and read my book. We pack up and go to the art museum to see an exhibit about Frida Kahlo and Diego Rivera. We have a coffee, and then we head home, until the next time.

The power of a single voice

I have been thinking lately about the power of one person’s voice. I was working in my office on the top floor of our building a couple weeks ago when I heard what sounded like a protest at the statehouse. Eleven stories up, we get some good views of all manner of people exercising their first amendment rights downtown. Recently it has included people protesting police violence, critical race theory, an apartment building in German Village, and an unspecified group of people with rifles. So when I heard this, I was mildly curious to see what it was when I went to the Pearl Market.

I got to the corner of Broad and High only to find out it was a single preacher with a microphone and a good speaker, along with a couple of allies handing out pamphlets. I politely took a pamphlet and moved on, because I was born alright the first time. But I was impressed; I could hear one voice down the block eleven stories up as well as I could hear a crowd.

This week I took Wednesday off and started my day at the statehouse testifying on HB 37, a bill that would expand emergency access to life-saving medications. I went there not only for a good cause but also to support someone whose one voice has made a huge impact, and to honor his son who is no longer with us.

Kevin Houdeshell lost his life in 2014 because he was unable to get his insulin prescription refilled. The pharmacist could not get ahold of his doctor, and neither could he. Since then, his family has worked tirelessly to get Kevin’s Law, an emergency prescription access law, passed in over 20 states. It started in Ohio in 2015 and grew from there. The latest bill would require insurance to cover those emergency prescriptions and increase the number of times a patient could get an emergency refill from one per year to three.

I went to the statehouse this week because I am in favor of increasing access to needed medication and supplies in our convoluted healthcare system, but also I went there for Dan Houdeshell. We have been emailing for well over a year but we have not met in real life. I wasn’t able to make it when he testified in September because I had a college visit, but I watched his testimony that evening when I got home and sent him a message.

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He had a hard time getting started and my heart went out to him. I won’t lie; I sat on the porch watching his testimony and cried. He paused a couple of times, Kevin’s photo in front of him, and carried on. He did such a great job. This week, I made sure to show up because I wanted to be an ally to their family in this effort, and because Kevin’s life mattered. When I got back from testifying, I already had a message from Dan thanking me for showing up and telling me I had done a good job. It was me who should have been thanking him for turning his tragedy into something positive for other people. I am hoping we can meet in real life one day. Meanwhile, I will keep showing up. If you have a chance to be an ally to someone who is using their voice, I encourage you to take it.

Borrowed Time

In January of 2020, we took Evan to an accepted student visit at Case Western Reserve. It included an orientation session, tours, and an overnight in the dorms. After the orientation, we watched as he walked away for his overnight. Ron and I looked at each other. We got a sense of what it would be like to leave him at college. We felt like it was the beginning of the end of his time at home.

That turned out not to be the case, as he decided to go to OSU, and he canceled his dorm contract to live at home last year since his classes were online. So much of the past eighteen months is a blur, working from home and avoiding anyone outside our circle. Every day was the same. There is a lot I don’t remember, or want to remember, about this time. But some things will stay with me.

Once school started, we adapted to the rhythm of Zoom life. I had check-in and check-out calls each day as well as meetings. The boys had Zoom schedules with quick breaks. Evan’s break was at 12:30. I would often sit down and eat lunch with him. He made toast a lot. At times, you would find us making scrambled eggs, or later, Instapot mac and cheese.

On weekends, especially Saturdays, we would often watch a movie. We went through a lot of them. Nomadland. One Night in Miami. Judas and the Black Messiah. Minari. Sound of Metal. Those were the good ones. We watched a few series, too. Dirty Money. Who Killed Malcolm X. Underground Railroad. Each time we sat down to eat lunch, each time we sat down to watch something together, each time I smelled his toast, I focused on his quiet presence. I was living on borrowed time. I was being given a gift, this extra time with him. I was savoring it because I knew it was coming to an end.

Obviously, it won’t be the first time we have adapted to separation. Kindergarten was a big one; I missed Evan terribly. Ron traveled half the time on business, and Evan was my best helper and companion. He had a dry, adult sense of humor even then. Knowing I was having a tough time with the transition, my neighbor Jill dispensed with all the “he’s a big boy now” lectures and just said, “It’s OK; you’ll still be close to him.” That was just what I needed to hear.

This summer after I returned to the office, we have gone days without seeing each other. I leave for work before he gets up, and I am in bed when he gets home from his job. And now we really are moving him into his dorm. I know he is ready to go, if for no other reason than so his mom will stop calling him most days between 10:30 and 11, saying “Hey, could you do me a favor and hang the laundry out?” or calling at five and asking him to turn on the oven or the Instapot. I know he is ready to be around people his own age. But I will be missing him any time I smell toast, scramble eggs or hang the laundry. I am thankful for this borrowed time, and I will still be close to him.

 

Thankful

I did a triathlon this morning. It’s been a minute since I did one, as the kids would say. I am not sure what year it was last time, but I do remember being in the water ready to start the swim and realizing my car keys were in my back pocket. Oops.

I signed up for this race because it was close to home and I could ride my bike there. I wanted to feel the positive energy of race morning, and I found it. I was feeling a quiet sense of gratitude for two things: a colleague who lifted me up and got me started on this path, and a body healthy enough to do this.

Twenty three years go, I was a “grad school widow” when Ron was working full-time and doing his MBA. I read about the Wendy’s Triathlon and I wondered if I could do that. I liked riding my bike and swimming and running but I wasn’t fast. On the inside, I was still an awkward chubby kid. Not only did my colleague Barb Jerman assure me that I could do it, she got on the phone and called the race director who sent me a beginner training plan in the mail.

I trained for it and race day arrived. It was June 1998. Race morning was like this morning – it had rained and the clouds were still looming. It wasn’t the greatest race, but I did it and I was hooked! I signed up for another one in July. Ron and I spent many weekends racing before we had kids. I still trained for races after I was done nursing babies, usually only one or two a year. In recent years, it fell off my radar screen. I have not missed being on a training schedule. As I get older, I am happier just doing my own thing, whatever makes me happy at the time. But I did miss the energy and camaraderie of a race.

The other thing I was grateful for this morning, especially the last mile of that run when I was dragging, was how fortunate I am to be able do this. In 2009, I did a running race the day after I attended a funeral for an infant, the daughter of family friends who died of Spinal Muscular Atrophy. I stood in the start corral with a heavy heart and cried because how lucky am I to have a healthy body with everything working? My primary care practitioner Stephanie summarized it well when she took my health history the first time I saw her. When she learned that Adam had Type 1 diabetes, she said “it sucks and it’s not fair.”

So those were the two things I was thankful for this morning. Barb, lifting me up 23 years ago and starting me on a path that led me to the race this morning. This healthy body, lower and slower than it used to be, but taking me everywhere I want to go.

#thankful

Shedding bark

One of the things I love about reading is that it gives voice to feelings that I struggle to explain succinctly. Lines from poems jump out at me in my daily life.

Mary Oliver’s poems speak to me when I am outside, whether it is “Look the trees are turning their own bodies into pillars of light” or “Meanwhile the wild geese, high in the clean blue air, are heading home again.” Her poem about a turtle captures perfectly the sentiment I feel when animals are following their instincts “She doesn’t consider what she was born to do. She’s only filled with an old blind wish.”

Tuesday I was on a run with Copper, reminding myself that the trees and the prairie and the river and the deer would all be there whatever the outcome of the election. On the way home, I dropped Copper’s leash when a dog was approaching us off-lead to greet him. He sniffed the air and bolted into the woods, very unusual for him. When I caught up with him, he was pulling meat from a deer carcass. I was grossed out and annoyed, as the detour was costing me the time I’d set aside for showering before my Zoom call. As we emerged from the woods, I reminded myself that he was following an old blind wish.

All last week, I managed to get through my days by getting outside in the morning, limiting news and social media, and getting through the tasks that had to be done that day. Once we had eaten dinner, finished household chores, and walked Copper, I’d collapse and take off my shoes and socks to read or watch Dark until bedtime. A four-foot stack of packages sat by the front door unopened. My socks sat where I’d left them from the previous days (a bad habit of mine to begin with). Baskets of laundry sat folded but not put away. The volunteer things that sounded like a good idea a couple weeks ago sat on the table undone. I read emails about setting up college visits for my high schooler and closed them again, thinking “I can’t even.” I read emails about the schedule for parent-teacher conferences six days from now. I closed them and made a note about it. I got text alerts about Ohio’s COVID rate going from 1500 to 3000 to 4000. I thought about an upcoming family event and dismissed the notification. I did not do any strength training all week for the first time since I quit going to the gym at the beginning of March.

A poem I read at the beginning of COVID called “Mary Oliver for Corona Times” put this in context for me.

“Remember, you are allowed to be still as the white birch,
Stunned by what you see,
Uselessly shedding your coils of paper skins
Because it gives you something to do.”

As I looked around at the end of the week at the packages piled up, the socks strewn around, the laundry, the reminder to schedule conferences, I told myself that I am shedding bark, and I am allowed to sit here stunned. Even before the election results when I breathed a deep sigh of relief, we opened the packages. I picked up six pairs of socks. The laundry is put away (some by me, some by others). I scheduled six conferences and did four more loads of laundry. I did my strength training today. But I am reminding myself that I am still allowed to sit idly, shedding bark.

 

Lap Full of Cats

It’s my 50th birthday today. I am not spending it the way I’d envisioned – in West Palm Beach, Florida, getting my Advanced Open Water Scuba certification from Pura Vida Divers. I think every day about when I will see the ocean again. But that is a first world problem. I am lucky to be starting another trip around the sun. We have everything we need and more. My family is here, all healthy under one roof. I have the privilege of working from home.

At the beginning of the stay-at-home order, I had a feeling that’s hard to describe that my arms were empty. I have a son who hugs me willingly multiple times a day, a dog who lies at my feet devotedly. It’s not that I don’t have coping skills; I do. I practice mindfulness and stress relief every day, mostly outside at the beginning and the end of the day. Whether I am walking the dog, running, or riding my bike, I breathe huge, deep lungfulls of sweet, moist air. I listen to the sound of insects chirping and humming, the soft coo of pigeons. I feel a soft breeze, look at the light at the tops of trees when the sun is low in the sky. I hear the water flowing in the ravines.

I remember the first time I really felt stress leaving my body and learned to pay attention to it. It was the fall of 2000. Ron and I were on a trip to the south of France after a long and stressful summer at work. We arrived in Nice, collected our compact Mercedes rental, and headed for our hotel. As we turned the corner onto the Promenade des Anglais, the Mediterranean came into view, and with it the smell of the sea, pine trees, and exhaust. Skyrock was on the radio. I felt the stress flow down and out of my body as I exhaled. It was then that I began paying attention to its effects on me.

I find that stress relief outside right now. Whether it is the stress of pivoting to take a large in-person event virtual at work, Ron’s mom being at the end of her life and dying, struggling to help Evan make college decisions in the midst of this pandemic or trying to get Adam to come out of his room, going outside helps me.  But this was something different. It wasn’t stress, but a longing. Maybe it was tied to my numerous lucid dreams that I am having another baby unexpectedly and I am never ready for it. I don’t have a crib or a car seat, but  I am delighted about it every single time.

Last year during the holidays, Adam asked to get a cat. Ron has had cats before but developed allergies to them. They decided to visit the cat cafe on Indianola to test his allergies. They never got around to it before the shutdown (because I didn’t arrange it for them). During the stay-at-home order, Adam was down in the dumps stuck at home. In a moment of desperation, I said “Well, what if we get a cat?”

“Then I’d just be sitting there staring at a cat,” he snapped. I ignored him.

Later, he asked sheepishly, “How could we get a cat now?”  Shelters weren’t doing adoptions then.

Then my friend Dana posted that her family was fostering a litter of kittens. I told her we’d love to see them when things open up. When the stay at home order lifted, we went to meet them on her screened porch, masked and distant. I picked a favorite, and two others I liked almost as well. But before we could visit again with Ron in tow, the kittens got sick and all but one died.

We made an appointment to visit the cat adoption center at Colony Cats. We focused on the cats that came to greet us. I loved one brown tabby in particular. Holding her, she was warm against me and I felt good. My arms weren’t empty anymore. It wasn’t the soft release of stress, it was a warmth at my center. Ron could see it. As for Adam, he loved a little black kitten. But Ron’s allergies raged when we got home. We took a step back and decided to try a visit to a place there weren’t SO many cats. Dana’s neighbor Charity also had a litter of kittens she had been fostering. She has been doing cat rescue for a decade. We went to meet them, masked and socially distant in her basement. We liked two of the kittens and it went OK with Ron.

We waited for them to get neutered and in June we brought them home. Two brothers, Sookie and Roo. They are a great source of laughter for us. I feel peaceful and warm when they sit in my lap. As I turn 50, I feel lucky to have all my boys at home with me – husband, two sons, a dog, and two kittens. I feel lucky to get outside on foot or on my bike. I feel lucky to have a dog at my feet, and a lap full of cats.

Along for the Ride

Ron and I have been married for 25 years today, just over half my life. From the beginning, I liked that he was willing to do things with me, whether it was the ballet, the zoo, a bike ride, or take a trip. Along the way, we have found things we enjoy doing together.

I’ve always loved the water. We spent our honeymoon in Grand Cayman where we went snorkeling. It was magical seeing fish and corals, but we could see people deeper in the water and we wanted to go there.  We took a resort course taught by a tanned Teutonic looking guy with endless jokes about what we should be doing on our honeymoon and then spent the rest of our trip diving. It took a few years to get back to it, but we finally got our scuba certification in 1998.

In the meantime, Ron and I took a trip to San Francisco. I had visited my friend Ingrid there a couple of times and fell in love with it. I gave him a guidebook that he did not read. When I asked him what he wanted to do, he said, “I don’t know what there is to do here.” At the time I was irritated but it taught me an important lesson – that I should charge ahead with whatever I wanted to do and hope he got something out of it. I drug him along on my personal itinerary of things I like to do in San Francisco. We started down my list – China Beach, Sea Cliff, Golden Gate Park, Land’s End, Mission Delores, the Presidio – until we reached a point each day when he asked to sit down because his feet hurt.

We went back to San Francisco with the kids in 2013. It was a different trip then. I had the tasks of arranging travel, accommodations, transportation, food, and activities for four people and by the time we got to our VRBO in the Richmond District, I was feeling overwhelmed. I had a list of things I wanted to do on that trip, but no set plan.

Our first full day, I asked Ron, “What should we do today?”

“Don’t look at me,” he replied. “I’m just along for the ride.”

At the time I was exasperated, having navigated air travel with kids, public transit, grocery shopping, and an emergency trip to the laundromat within 24 hours. I wanted him to take that decision off my plate. I took a breath and adjusted my attitude. I don’t remember exactly what we did that day. Google photos show me that we went to the California Academy of Sciences and then took the trolley to Ghirardelli. I just remember it as the day “along for the ride” became part of our family vocabulary.

Ron has been along for the ride not just on trips but in life. Later that year, my father died after more than 20 years of estrangement. Ron followed behind me as I navigated that situation: silently packing and moving belongings; reading a passage at the small, heart-wrenching funeral that consisted of the four of us, Father Chuck and my father’s friend Shari who worked at the cemetery; and researching, cataloging, and securing 47 firearms.

During that process, I struggled to explain that estrangement to the kids that included his alcoholism, his anger, and my fear of him. I told them my father was still angry with me because I didn’t attend my grandparents’ funeral when I was in my late teens. The boys wanted to know why. The best way I could think of explaining it was to say,  “Remember when you were little, if you were nervous or afraid of something new, I would just go with you and hold your hand until you got used to it?”

“Well, I didn’t have anyone to hold my hand. I was scared and I didn’t want to go there alone.”

Explaining that to them reminded me of the first time Ron and I went on a dive 100 feet below the surface. We were in the Bahamas for a long weekend and I was really nervous. I was afraid of getting nitrogen narcosis — a sense of euphoria and lack of judgment that can happen at deeper depths. Not only was it our first deep dive, but it was also a wreck dive with a swim-through (where you swim through the inside of the wreck and you can’t see the surface). Wreck dives are not my thing, but I am willing to do them. As we descended, Ron took my hand. He held it as we swam through the hold until I felt comfortable enough to let go and take a closer look at the white coral. That experience stuck with me, too.

I have someone to hold my hand. I have someone along for the ride. I am lucky.

Driving out of the Depths

It’s hard letting go of that little boy as my kids grow older. In the fall, I was talking to a friend who remarked that it’s getting easier to talk to his older daughter because she was emerging from the depths of adolescence. That was the perfect way to describe it – that phase where teens are morose and uncommunicative, going around with headphones on. I laughed and responded that I had one teen who had emerged from the depths and the other was rock bottom. Since then, he’s slowly started to emerge.

For some reason, it is harder for me to let go of the little boy that was Adam than it was for Evan. Maybe because Adam is my baby. Maybe because I worry more about losing him. Maybe because my fondest memories with Evan are quiet ones. One time Evan was homesick in October. Adam was still in preschool and I dropped him off. Evan was restless so I got out a craft kit to make Halloween garland, back when we decorated for Halloween. The two of us sat there for a couple of hours making strands of garland to hang across the front porch. Our only words were to ask each other for a certain bead. We were quiet and perfectly content together. Similarly, when Ron and Adam were on a trip to Glacier National Park for ten days, the two of us ate the same two things the whole time and in the evenings we would sit in the living room, sometimes watching a show and other times doing our own thing, quiet but together. Classic “Enjoy the Silence.”

Adam, though, has always been more spirited. Gone is the little boy who took obvious delight in everything, who stomped in every puddle he came across, who jumped in the water with his clothes on (pool or ocean), who stopped to pet every cat he came across, who rescued a house finch from a hole along the driveway and named it Peeps. In the spring, he liked to go on bike rides as soon as the weather warmed. It was still pretty cold for a bike ride and we’d come home with our hands freezing.

Gone are most of the collections, the stuffed animals, the pins, the fountain pens and journals, the comic books. He does have a small collection of old-school sneakers ranging from black to white to cherry red. He carefully cleans them, which I find so endearing. He likes colorful clothes that he buys himself, which I also find very sweet.

I still get a glimpse of that little boy at times, and I am holding on tight to those moments. Last year, the two of us went to New York City for the weekend. It was a long day in the car, followed by an hour on the commuter train and then sorting out how to find the green 4/5 subway to our stop. He was grumpy at his clueless old mom in the subway asking two different employees for directions (ummm, yeah great, I understand it’s a downtown train, but where exactly do I get on it?). When we finally emerged at the Wall Street stop and headed toward our hotel, he said out of the blue “This is so cool. When I look up all I can see is tall buildings.” The following day he was grumpy in the afternoon because he wasn’t feeling good. We got a smoothie and did a little shopping. Heading back to the hotel to regroup, he said “This is fun. We should do this more often.”

Last summer on our trip to Bonaire, we shopped for groceries several times. I asked Adam what he wanted each time and he was indifferent. On one trip to the supermarket, he actually said “If it’s not restaurant food, I don’t care.” We explained that we wouldn’t be eating restaurant food every day. Sigh.

And yet, we had special times where we connected on that trip. He wanted to swim one night after dinner, so he and I headed down. It was dark already because we were close to the equator. When we got down to the water, I realized he wanted to jump off the dock into the dark ocean rather than entering from the beach. He took a flying leap into the water. He turned on a flashlight and showed me there was nothing amiss in the water. He insisted it was great being in the dark water unable to see beneath you and looking up at the stars. I was dubious but I took the leap and joined him, and it was. As we floated there looking at the stars and the lights onshore, I knew it was something special I would look back on later.

Later that week, driving through the rutted roads of Washington Slaagbai National Park and bouncing in our seats, he said “This is fun.” He asked to swim on the way home, so we stopped at Boka Slaagbai, one of the most beautiful and remote places I’ve been swimming. The water was aquamarine and crystal clear. Behind us were a building, a few people and a flamingo nesting area. To the sides were rocks, above us sky and in front of us nothing but sea. He and Ron jumped off a twenty-foot cliff twice and those moments were magical, even though he had told me while swimming “this island is hideous,” because it was so stark.

When we went to Pittsburgh for college visits, I asked Adam if he liked Pitt and if he ever thought about where he wanted to go to college. “No,” he answered grumpily. Ron asked him if he ever thought about WHETHER he wanted to go to college. Same answer, a grumpy no. Ron and I sighed. We do what we can to stay connected to him, whether it’s watching Narcos or going to horror movies. I’m pushing 50 and I have finally seen The Shining and Nightmare on Elm Street.

It’s funny where I have been seeing glimpses of that boy lately: driving. He got his temps three weeks ago and texted me at work asking me to take him driving when I got home. We drove around a deserted area. I saw the same concentration I did when he was learning about things and collecting them, from fountain pens to succulents. He asked a lot of questions.

“How fast should I be going when I turn?”

“Did I take that curve too fast? I saw you put your hand on the door.”

”What’s the speed limit here?”

We have spent a lot of time driving around lately. He listens patiently as I take him on a tour of my life, places my relatives lived, places I used to live, the apartment complex where I used the pool for a summer when I was his age and they thought I lived there. It reminds me a little of the drives I used to take with my late step-dad Homer. After he gave up driving, sometimes I’d take him for a ride, usually along Olentangy River Road into Delaware. We were quiet and content, like Adam and I are now.

When they are distant, I always remember what my boys’ teacher Tracey said about the phases kids go through, whether they are ten or fifteen.

“He’ll be back,” she’d say. And she’s right. He is driving out of the depths of adolescence, on his way back.

 

Taking Turns Pulling the Sled

 

Last month I read an essay called “That’s What We Moms Do, We Just Keep Pulling the Sled.” The mom wrote about how she left the house with a sled even though her kids said they didn’t need it. At times she was pulling it empty and at times her kids got on and rode. It was a metaphor for motherhood. It reminded me of the days I left the house with two kids in a double stroller wearing an empty sling. We wandered the neighborhood looking for water leaks and other interesting phenomena. At times I came home with two kids in the stroller, and at times I came home with an empty stroller, one toddler walking and one fussy baby tucked against me in the sling.

“There will be days when they won’t need you to pull them, and it will get easier.⁣ You have to keep pulling the sled.“

I have kept pulling the sled, even though it now looks more like packing a lunch, prepping medical supplies, or running them to the bus stop or school when they are running behind. I know they can do it themselves but I am choosing to extend them a kindness. One morning not long after I read the article, Evan was having trouble getting out of bed. It was cold and dark. I got him up and packed him a peanut butter and jelly sandwich. Adam had already left for the bus stop and Evan was still dragging so I offered to drive him to school. When we got in the car, he said: “Let’s try the bus first.”

As we turned the corner to the bus stop, we saw the bus pulling forward, but then someone else was running to catch it and it stopped. Evan said, “I think I can make it.” He jumped out of the car and ran toward the bus. I called out the same thing I’ve told him every day since Parkland just in case one of us doesn’t come home.

“Have a good day. I love you.”

He ran to the bus, jumping on quickly before the door closed.

What the author of the article didn’t arrive at (yet) is that your kids begin to take a turn pulling the sled at some point. Evan has always been a helper to me. When he went to Kindergarten, I was lost without him. Ron traveled half the time when the boys were young, and Evan was my dependable sidekick. He set things up for me, retrieved items and read street signs for me once he learned to read. I missed him terribly when he started school.

As he has gotten older, he continued to help me with things, provided he remembers. For a couple weeks this month, he was in charge of managing the dog after school, which included medication, food and taking him out. If I called, he started dinner given specific instructions. He drove himself to school, internship, and rehearsals. He picked up his brother from activities.

Riding in the back seat.

He supported me in deeper ways, too. Last month, I was passed over for a job. It was a job I really wanted because my heart was in the mission. I found out early on a Wednesday, which is his internship day. He sleeps in on those days, so I told him when he got up that I was feeling down. He showed me empathy in his quiet way. I was running behind and this time I was the one who wasn’t going to make it to the bus. Evan takes the car to his internship on Wednesday, so I asked him to drop me off on High Street on his way so I could catch another bus. He agreed.

As we got to the end of the street, the bus was going by, a little behind schedule. I asked him to take me to the next stop since another one was coming soon. After we turned onto High Street, we pulled up behind the bus as it stopped for someone else hustling to catch it. “I think I can make it,” I told him. I jumped out of the car and said to him with a wave “Have a good day. I love you.” And I got on the bus. We laughed later about the irony of each of us doing that for the other in the span of a week. He was taking a turn pulling the sled.

 

Times Like These

Last Sunday morning Ron and I sat reading the news on our tablets in Washington, D.C. and let the boys sleep in before we visited the Holocaust Memorial Museum. First I read Michiko Kakutani’s article “The 2010s Were the End of Normal” in the New York Times. In it, she outlines in her erudite prose the many event streams troubling me.

“Apocalypse is not yet upon our world as the 2010s draw to an end, but there are portents of disorder. The hopes nourished during the opening years of the decade — hopes that America was on a progressive path toward growing equality and freedom, hopes that technology held answers to some of our most pressing problems — have given way, with what feels like head-swiveling speed, to a dark and divisive new era. Fear and distrust are ascendant now. At home, hate-crime violence reached a 16-year high in 2018, the F.B.I. reported. Abroad, there were big geopolitical shifts. With the rise of nationalist movements and a backlash against globalization on both sides of the Atlantic, the liberal post-World War II order — based on economic integration and international institutions — began to unravel, and since 2017, the United States has not only abdicated its role as a stabilizing leader on the global stage, but is also sowing unpredictability and chaos abroad.”

Then I read “The Secrets of Jewish Genius.” also in the New York Times. Bret Stephens examines how it is that the Jewish people, a small population, have contributed so significantly to pathbreaking ideas and innovations. Part of it, the author contends, is thinking differently and part of it is the history of facing adversity.

“There is the never-quite-comfortable status of Jews in places where they are the minority — intimately familiar with the customs of the country while maintaining a critical distance from them… And there is the understanding, born of repeated exile, that everything that seems solid and valuable is ultimately perishable, while everything that is intangible — knowledge most of all — is potentially everlasting.“

I also read an article entitled “Look Up. Put Down Your Phone and Take in the Wonders Around You.” I strive to do this, especially when I am outside. That was my frame of mind when we arrived at the Holocaust Memorial Museum: look around. I kept my phone in my pocket, taking photos of only a few things that burned themselves into my mind. I won’t write about it at length because you should go. Really, go. It was haunting, moving and all too close to home.

I could not stop looking at this photo of four men in Thessaloniki, Greece, showing their tattoos in 1990, especially the face of the man on the left.

When we got back to the hotel and sat down to unwind, I read the Washington Post article “Acts of anti-Semitism are on the rise in New York and elsewhere, leaving Jewish community rattled. It did not escape me that there was increased security at the Holocaust Memorial Museum. The officers were not employed by the same contractor we had seen in every other museum that weekend. They genuinely looked at the contents of bags in the X-ray. They turned away someone with pepper spray who would not give it up. They asked to examine any aerosol can or other questionable items. But the image of armed guards outside a Brooklyn Synagogue in the Washington Post article haunted me, just like walking through the Squirrel Hill neighborhood in Pittsburgh did last summer.

When we came home this week, I thought about all of the things I absorbed last weekend – the Holocaust Memorial Museum on top of Newseum, the monuments and the Hirschhorn Museum. “What am I to do in times like these?” I wondered. I read to stay informed. I am involved in my community. I show up to things that are important, even if it’s just over my lunch hour because showing up is more effective than just posting on the interwebs. I am not alone in thinking this: today I read about the tens of thousands of people who showed up to march across the Brooklyn Bridge in solidarity with New York City’s Jewish community. And I felt hopeful at that moment. I went back and looked at the pictures I took at the Holocaust Memorial Museum. I will just leave this one here for you to read. You can probably guess the author: it was Anne Frank.

 

Unexpected Affirmations

I’ve been thinking a lot about unexpected affirmations. Driving downtown on the freeway, I see these signs that say “You are loved,” “You are worthy,” “You are valuable,” and “Don’t give up, Don’t give in.” I love them. They remind me that everyone I meet is fighting a battle I know nothing about. When you are done reading this, take seven minutes and watch a short film about the signs: https://youtu.be/av8QJRxTB5o. (Really, you should watch it. Thanks, Paula, for the link.)

Thanksgiving weekend, I wrote two thank you cards to teachers at school who went over and above in their efforts for my kids. I told them I was thankful for them. One of them emailed me as soon as he got the card.

“Thanks, Ms. Freeland for the card,” it read. “It came at a time when I needed it.”

This week I found myself on the receiving end of affirmations I needed. Something I had been hopeful about fell apart. My friend Erin shared this quote a few months ago, and since then I have been reading the work of Pema Chodron and working hard to embrace that philosophy.

I tried not to hide from my feelings of disappointment, failure and hurt. I tried to just sit with them. I went for a run in the woods. I cried a little. I drank hot chocolate. I curled up on the couch with Adam to watch The Blacklist. While we were watching, the doorbell rang. It was my neighbor Susan. She came to give me a jar of pickles and a pair of  her earrings she wanted me to have. She told me she appreciates everything I do. She made me feel valued and worthy. The next morning, I put on those earrings. Every time I wear them, I am going to remember how I felt when she gave them to me.

That evening at the winter band concert, a mom I hadn’t seen in a while came up and told me she was proud of all the volunteer work I do on behalf of people with diabetes. I thanked her and told her that I was having a tough week and why, and she wrapped me in a warm hug.

So, thanks Susan and Kate for the affirmation. It came at a time when I needed it. And for anyone reading this, I will tell you:

You are loved.
You are worthy.
You are valuable.
You are enough.
Keep going.

Small Moments

It’s Thanksgiving and I am thankful for the big things – family, friends, good health. But I am also thankful for chance encounters and small moments. Over the past week, I’ve had a series of them.

Last Friday I did the grocery shopping. At the back of the store, I was marveling at the size of the frozen turkeys. A couple of older ladies were as well. One of them told me she got Cornish hens this year. I told her I got a turkey breast. Looking at them, she said “If you put those out to thaw, they might be done by Christmas.” We laughed our heads off talking about how long it takes to thaw a turkey and times ours weren’t thawed.

While I was there, I found a purse and took it to the service counter, where I got in line to fix something on my receipt. Soon after, a woman came in visibly upset. She was about my age. She had Down’s Syndrome and was with her mom.

“Did you lose your purse?” I asked her.

“Yes,” she said.

“Was it black?” I asked.

“Yes,” she answered.

“Well, I found it and I turned it in. I’ll get it for you.” I went to the front of the line at the service counter and asked if they’d hand me the purse, as I’d found its owner. When I got back to her, she was hugging the woman in front of me in line who was sending $150 to her family in the Philippines.

“I love you,” she told her.

“I love you, too, but she found your purse,” the woman from the Philippines said pointing to me.

She turned to me and hugged me, saying “I love you, thank you. At least my tablet wasn’t in there!”

I hugged her in return and replied “I love you, too. And yes, that’s a good thing.”

The man in front of me, who was returning something and buying vitamins and the New York Times, looked at me and said “That was a good thing right there.” And it was.

Outside with Copper, and happy to be alive

The next day Copper and I were heading out for a walk in the woods behind Whetstone and we ran into a neighbor, Cathy, on our way. She told me she and my friend Ronda had bought the Noxgear lighted vests I recommended and were running in them. We got to talking about running and how we are not running as far or as fast as we used to but we are still moving. I related to her a conversation I had with Ron when he was heading to a spinning class but didn’t feel like going. I suggested riding outside, and he declined because it wouldn’t be as good a workout. I told him he could let go of the workout and just appreciate being outside, moving, happy to be alive.

If you know Ron, you will not be surprised by his sardonic answer. “Now why would I want to do that?”

But Cathy related to that immediately. “Yes, that’s it exactly! Happy to be alive!”

Yesterday my neighbor Grace came to work with her mom because Thanksgiving break had started. When she comes, I try to develop a project we can work on. Yesterday I had a delivery to make that was a couple blocks away so we set out together. It was windy, end-of-the-world windy. and leaves were swirling in a funnel. She took my arm and we forged ahead laughing.

“This might be the strongest wind I’ve seen,” she said. We pushed on and made our delivery, laughing and chatting about Christmas gifts and how hard it is to hold onto them until Christmas.

It was one of those small moments. We were outside, and happy to be alive.

#optoutside #thankful

Only Here For My Surface Interval

 

As I unpacked from our trip to Bonaire, I thought about what it is that keeps me coming back to the ocean. Sure, it’s beautiful and relaxing, but for me it’s something more. It’s feeling connected to life on earth in a deeper way than I feel connected on land alone. I do feel connected to the earth on land. It’s part of the reason I make a point to try and exercise outside in the morning before work. Whether I see deer or a hawk, or revel in the layers of sound – insects, then birds, then leaves rustling, maybe squirrels or deer crashing through the ravine – I feel spiritually connected to other life. But I feel this in a deeper way, coming full circle, underwater. I know the boys have tired of diving and it has a “been there, done that” feel to it for them. But for me, it never gets old.

I am reading Mary Oliver’s book of essays Upstream. I love her poetry for its attachment to nature and its recognition of solitude, loneliness and our fleeting lives. She begins by writing about a time she wandered away from her family, upstream in the water.

“My heart opened, and opened again. The water pushed against my effort, then its glassy permission to step ahead touched my ankles. The sense of going toward the source. I do not think that I ever, in fact, returned home.” 

She went on to write about the connectedness of all things: 

” Do you think there is anything not attached by its unbreakable cord to everything else… Understand this from the first certainty. Butterflies don’t write books, neither do lilies or violets. Which doesn’t mean they don’t know, in their own way, what they are. That they don’t know they are alive – that they don’t feel, that action upon which all consciousness sits, lightly or heavily. Humility is the prize of the leaf-world. Vainglory is the bane of us, the humans.” 

Being in the ocean, especially diving and snorkeling, make me feel connected to the full circle of life. Huge corals larger than me make up the forest of the ocean. I regularly contemplate the relationship between fish and birds when I watch the different ways fish move underwater. Those grey parrotfish look an awful lot like African grey parrots. Fish have their own personalities. Some are shy and scatter quickly, darting by like blue tang. Other shy ones recede into a closed space and look out at you, like the porcupine fish that hung out under the ledge in front of our condo. Some, like all manner of parrotfish, ignore you completely. My favorites are the Odd Shaped Swimmers from the Reef Fish guide to Florida and the Caribbean. The filefish who are a little shy but will let you regard them from a distance. The honeycomb cowfish with its weeble-wobble body gliding around. The trumpetfish who regard you with curiosity from a safe distance. One followed us off and on for the second half of our dive after I recorded it hunting, suspended vertically in the water like an exclamation point. I love to be in the middle of a school of fish, thinking “Where are we going, friends?”

Our dive gear is still laying out to dry on the basement floor. I should put it away but I don’t want it to be over. I know there will be a next time, but I don’t know where or when. This year I decided that I am not too old to put stickers on my computer like the young folks. I saw one that says “I’m only here for my surface interval,” the period of time a diver has to spend out of the water to rest and let nitrogen escape from their tissues. It gave me a good attitude – when I am not having a good day or feeling discouraged by the state of our school, our city, our country, the world, I remember that I am just on my surface interval and I’ll be back underwater when it’s over.

Some Nutty Mom

I spoke to the Columbus City Schools Board of Education again last week. It was my third visit this school year. I went because one of the board members encouraged us to keep coming back, not to get tired and go away. I am tired – we are barreling through the month of May toward the end of the school year and I have been up many nights treating high blood sugars. But I came back.

I wanted to tell them that they could do better for our high school. They announced last month that they would invest $1 million in upgrades to our building, including air conditioning the cafeteria and library, and upgrading bathrooms. But then it was revealed that the district identified $29 million for upgrades to other buildings in better condition than ours. I asked them to look beyond 2020 and come up with a better plan.

I try to use the skills I have to make a difference, usually focusing on the things that are right in front of me. Our school. People with Type 1 Diabetes. A little farther removed, gun violence. It makes me feel like I do my part for things I believe in.

A couple years ago, I met with a volunteer about advocacy work I was doing with the Central Ohio Diabetes Association.

“What’s your qualification for doing this?” he asked. I explained that advocacy used to be my job before I had kids.

• 

“Oh,” he said “I wondered if you were just some nutty mom.”

“Some nutty mom?” I thought. Don’t get me wrong, I am some nutty mom. Just ask my kids. But, really, “Some nutty mom?” Look at Mothers Against Drunk Driving, JDRF, Moms Demand Action Against Gun Violence…all started by moms.

After a long pause, I answered “This is a way for me to use my skills to give back.”

I’ve been thinking about that phrase ever since. Thinking about it when visiting eight congressional offices for JDRF this spring, when Rep. Steve Stivers agreed to all of my asks on the spot because he remembered that I came to see him with my son and other advocates. Thinking about it when I got meetings with three of the four Northeast Ohio congressional offices I cold called, and all three signed the letter we were circulating.

Thinking about it when going to a legislative hearing on stand your ground legislation at the Ohio Statehouse and to Advocacy Day with Moms Demand Action Against Gun Violence.

And yes, thinking about it testifying before the school board last week, when the board president said,”Good evening, Mrs. Freeland, and welcome back.”

Yep, I’ll keep coming back. I’m some nutty mom.

#somenuttymom

In This Together

NBC news aired a segment last month about a group of young people who went to Tijuana to buy insulin because they had trouble affording their prescriptions. Together they spent under $900 for insulin that would cost them $8500 in the US. I loved that the story focused attention on the Type 1 diabetes community as problem solvers and survivors, not as victims. I loved that they did this together. Still, one young woman’s quote made me cry.

“When you are a Type 1 diabetic, it’s you against the world and you feel like every single person is stopping you from getting that medicine that you need,” she said, beginning to choke up. “I didn’t think I’d get emotional; it’s just not fair.”

It made me tear up to think of the lifetime of this that stands in front of Adam. I am shouldering this now. I thought about the hours I spend on the phone trying to get supply orders and payments straightened out. Recently our insurance refused to pay a bill because they only allow you to order supplies four times a year. We only got one month of supplies when we transitioned to a new continuous glucose monitor system in the fall – a limitation either the manufacturer or the supplier sets, no one would answer my question when I asked for 90 days of supplies. So even though we only got 10 months of supplies in four orders, they denied the fifth order. I had foolishly paid the bill without looking closely and I needed that money back in our Health Savings Account when our deductible reset in January. It took me all morning to file an appeal. On the verge of tears over the time and effort it took me to do this, I asked Ron to reach out to his benefits department and have them escalate the appeal. I hoped that the employer inquiry would work in our favor. Eventually it did – we got a notice a month later that they ruled on our favor. I am still waiting for it to be resolved.

In December, our insulin pump supplier offered to do a benefits analysis for us. I took them up on it, and they said we could save money by getting our supplies through our pharmacy benefit. I called Optum Rx, our pharmacy benefits manager. After waiting on hold and being disconnected, I was told three times – THREE TIMES – that they don’t cover that. I had billing codes to give them and they said they weren’t accurate. Finally, I put my foot down and said “I don’t see why the manufacturer would lie to me about this. I am going to spell it for you. Please look again.” The rep, who was not at all helpful, said grudgingly, “I do have a five-pack available to you at no cost.” You might think my first thought would be “Great! We’ll take it,” but it was actually “What happens to people who don’t have the life skills to navigate our health care system?” They suffer the consequences.

Six months worth of Omnipod patch pumps 

This winter, the US Senate held hearings on prescription drug pricing. A mom from Indiana shared how her son had not realized how much insulin cost until he went to the pharmacy when he was in college. Stunned by the price, he bought less and tried to ration it to save his family money. Fortunately, the college faculty reached out to his parents because the consequences could have been fatal. They have been for other young people. It’s like Senator Ron Wyden put it – it has turned patients into beggars.

I belong to several Facebook groups – for parents of children with Type 1 diabetes, for users of our medical equipment (Omnipod and Dexcom) and for those awesome people who are taking matters into their own hands and hacking old insulin pumps to set up closed-loop systems that adjust insulin automatically based on blood sugars. These sites have been very useful for us in tackling challenges including site change highs, adhesive rashes and equipment malfunctions. But at times they are overwhelmed with bickering, negative posts and judgement.

The only one I look at regularly is the local page for parents, and it is full of nice people supporting each other. People ask for and receive advice without judgement. People offer up supplies they don’t need, including insulin. I was so happy to pass on several boxes of insulin someone offered up to an adult friend. Not infrequently, people ask to borrow supplies until their shipment arrives and I rarely see a request go unanswered. If I have them, I loan supplies out to other people until theirs come and then they repay us. Ron has gotten used to me calling or texting and asking him to put a piece of equipment in the mailbox. I have mailed new families test strips when they lived farther away. One in-person exchange was particularly funny. Meredith posted that their shipment had not arrived, and she needed a transmitter. We had never met, and we didn’t live near each other, so I offered to take it to work. Rather than have her pay to park downtown just to pick it up, I told her I would come out and meet her if she let me know when she got close. I told her I what I was wearing. I went outside and waited when she texted me. She pulled over on Fourth Street and rolled down her window. We laughed at how this must look, her pulling over in her minivan and me handing her a small box through the window. But we agreed: this is our life, and these are the things we do. We’re in this together.

I hope that Adam is watching these exchanges and realizing that it’s valuable to be connected to others in your situation. He wants to be a regular kid, and that’s fine. He did not want to go to camp for teenagers with diabetes last summer and he generally doesn’t want to participate in events. This disease doesn’t define his life, but it’s good to have connections so you can be there for each other.

Borrowing supplies is not a long-term plan for diabetes care. It does not change the fact that our health care system is broken. This week I am in Washington, D.C. with hundreds of other JDRF advocates to lobby Congress for affordable insulin, coverage of preexisting conditions, and funding for Type 1 diabetes research. Together we will storm Capitol Hill Tuesday and Wednesday, because we’re in this together.

#inthistogether

Close Calls

One of the hardest things about adjusting to diabetes care is the close calls, the ones where we are just waiting to see what’s next. Some involve medical equipment, others involve illness and still others unusual situations.

The first one I remember involved a glucose meter that wasn’t working. This was back when we were low-tech, nothing attached to Adam’s body. Adam felt like his blood sugar was low. His hands, still round with childhood, shook as he squeezed a drop of blood out of his finger to test. We waited. 140.

“That’s not right,” he said.

“I believe you,” I told him. I got out a different meter. This one said 71. That’s more like it. He had juice and we waited to retest.

After repeating the test a few times on both meters, I called the company. The young man on the phone, probably young enough to be my son, told me that tests can vary by up to 30% under FDA guidelines. I mentioned that if math serves me correctly, the difference between 71 and 140 is a lot more than 30%. After a long pause, he said “Ma’am you need to stop doing so many tests; you’re driving yourself crazy. ” He did not seem to grasp that in a little while, I had to dose insulin and how much I gave Adam depended not only on what he was eating, but also what his blood sugar was.

Adam and I moved on and went to the gym. When I hit shuffle on my music, what should play out of the hundreds of songs on my phone but “Stayin Alive” by the Bee Gees. I teared up because that’s what we were doing, staying alive. In the end, I got rid of that meter. At the suggestion of my favorite pharmacist, Fred, I bought another one that used the same test strips but was more reliable. Two checks in a row were always within ten points of each other. (OneTouch Ultra2 if you are wondering).

Other wait-and-see situations involved adjusting to insulin pump therapy. People who use an insulin pump must change the site every few days so the body doesn’t develop scar tissue that occludes the site. In our training, we were taught to do a site change and then dose for a meal on the new site. The large dose would get the site started absorbing insulin. I am not sure that has worked even once. On the contrary, it’s awful in most cases. Eating on a new site results in a blood sugar triple what it should be. It takes hours and hours to get it back under control.

Here is where I am so grateful for social media. Much of what I have learned is from other users, most of them adults who have figured out how to manage to the best of their ability. One in particular uses the same pump we do and laid out for me in detail her system for successful site changes: dose for a meal, eat and then do a site change while that meal insulin is still active. Give a good dose on the new site to get it going. Leave the old site on for a while. On a good day, this is still what works best for us.

Other times we have not been sure the pump was working. In the beginning, I would get out the book our doctor gave us and turn to the page on unexplained high blood sugars (haven’t eaten and forgotten to dose, aren’t sick, having a middle of the night growth spurt, having PMS, etc). It involves a series of wait-and-see exercises. Give a correction and wait 45 minutes. If it doesn’t begin working, think about changing the site. After two hours, give a correction by manual injection and wait some more. Along the way, check for ketones. Naturally, we would like to be sleeping during many of these episodes. Once this happened at school and Adam called me at work.

“My blood sugar is 381 and I don’t know what to do,” he said.

“OK,” I said. “Let me think.”  I asked how much insulin his pump had “on board.” I subtracted that from the amount it would take to bring his blood sugar down and added the amount he would need for lunch.

“Should I eat lunch?” he asked. I usually make a low-carb meal for him if his blood sugar is elevated. I told him to go ahead and eat, but to inject himself with the amount of insulin I calculated. Injections work faster than the pump. In the end, it worked out fine and his blood sugar came back down and stayed level. But it’s hard to convey the stress I was feeling at work and how much I did not want to be there.

Other close calls have involved illness. Adam had one bad stomach virus that was  stressful. He began vomiting in the night. It’s really important to check ketones when a person with diabetes is ill. Usually this is done with urine test strips, but it can be done with a meter using blood. I did not have the test strips for the meter, which are really expensive, costing $4 each at the pharmacy and $1.50 each on Amazon. On this particular occasion, he was too dehydrated to produce even the drop needed for the urine test strip. I waited until 7:30 am when I texted the neighborhood mom I thought would be most likely to have test strips. She was in the same boat – she thought it would be a good idea to get some but hadn’t gotten to it yet.

I put Adam in the bathtub and after a soak, we got the sample he needed. He had trace ketones, and just needed to stay hydrated. All day I gave him Gatorade and insulin for it until he felt better. The following day he rested. The third day, he said he felt good enough for breakfast. I made his breakfast and he gave himself his insulin, but once he sat down to eat it, he couldn’t. Then we had to figure out how to make up the carbohydrates we just gave him insulin for. I made the largest tumbler of Gatorade I’d ever seen. I told him to start drinking. I was sitting on the couch dressed for work. His blood sugar was dropping and he’d consumed the whole tumbler.  At one point, I told him we’d give it ten minutes and then I was going to get out the Glucagon pen and give him a mini-glucagon dose. Glucagon is a chemical that signals your liver to dump the glucose it is storing into your bloodstream. Usually it is used in emergencies, and it’s expensive. It costs over $200 per pen and once you open it, it lasts only 24 hours. Luckily, his blood sugar came back up. But I didn’t go to work. I am thankful for a job where I can call and say I am staying home or working from home right now.

The other close call that comes to mind is our  first boat dives after diagnosis.  It was

Back at it: diving a couple days after feeling sea sick

summer in South Florida (because the weather had not cooperated our whole spring break) and we were not diving on our usual boat, which was full. We were diving with a captain we’d been out with before, Captain Susan. The weather was hot, which affects blood sugar levels, and the water was rough at the surface. Our first dive went OK. The current was significant, but we were used to it. Between dives, though, Adam’s blood sugar was in the 70s and we needed it to be almost twice that. He drank ginger ale. He was feeling seasick, as was another boy on the boat who was getting sick off the side. I knew the best thing for him was to get back in the water, because once we got below ten feet, he wouldn’t feel sick anymore. But if he threw up, we were staying on the boat to start the sequence I outlined above – checking blood sugars and ketones. I was really sweating it. Fortunately, we got him back in the water and it went OK. But it was stressful. I burned through my air pretty quickly on that dive due to stress.

In the end, we keep going. It gets easier. I no longer need to get out the book to look up unexplained high bloods sugars; we just dose and wait, inject and wait. I catch sleep where I can in between checks, watching and waiting, ready for the next close call, because this disease is unpredictable and there will be one.

 

The grocery store and other heartbreaks

It’s been two and a half years since Adam’s diagnosis with Type 1 diabetes. While most days this feels like our new life with its planning and constant vigilance, at times I still long for our old life.

Last winter Adam and I went to the store to pick up ingredients for a lasagna. At the end of the pasta aisle, we passed the kosher food section.  On the end cap, Adam pointed to a bag of Bissli, a crunchy salty snack.

“Remember these?” he asked me wistfully.

“I do,” I said.

I always stop at the clearance section before I leave the store. One summer there were bags of Bissli for a quarter. I stocked up on them and kept them in the van for quick snacks. They were like barbeque Fritos. The boys ate them at the pool, or on the ride home from camp when they were ravenous from an afternoon of playing in the sun. It was a different time for both of us.

“How many carbs are in it?” Adam asked.

“18.”

“How many servings in the bag?”

“Two and a half,” I answered (Seriously? Not a very big bag).

We stood there in the store, both of us thinking of a different time and feeling sad.

Adam was remembering a time when he could open a snack and eat it without a care in the world, without the chain of questions that come with eating now. How many carbs are in this? Does it have fat or protein in it? What is my blood sugar right now? Do I have any insulin on board? Am I going to be active? Is it close to bedtime? For the most part, Adam accepts this with grace. He checks his blood sugar, counts his carbs, gives his insulin, changes his pump and his continuous glucose monitor. He does all this without complaint, if not always without delay.

I was remembering my minivan life, when I took a van full of boys on adventures to the pool,  sledding, Alum Creek State Park beach, Inniswoods, Indian Village camp and Stratford Ecological Center. I was remembering the bag of snacks I kept in the car to eat while we were there, or to get us home. I was ready to be done driving my minivan, but I miss those adventures with a profound sadness.

Adam and I looked at each other with heavy hearts. I put the Bissli back and we got our lasagna ingredients. But the next time I went to the grocery, I bought the Bissli. I put it in the back of the pantry, saving it for an adventure.

Other items in the grocery store make me sad, too. When Adam was 10, he started going to the store by himself on his bike to buy Hubert’s lemonade. It comes in different flavors. Sometimes he got regular lemonade and other times the diet lemonade sweetened with Stevia. It made him feel grown up to go to the store by himself. After the diabetes, there’s no more lemonade, unless his blood sugar is low. And Kroger has stopped carrying the diet Hubert’s lemonade. He still goes to the store by himself and gets other things, but the sight of the Hubert’s makes me long for a time we could be carefree. The same goes for grape soda. Not that anyone needs soda, but Adam always loved grape soda and there are not many options without sugar .

People’s food pictures often make me sad. Pictures of frosted donuts and gooey desserts, plates of fried food laden with fat and carbs, a wicked combination. How lucky is it to be able to put something in your mouth and eat it without thinking it through- whether it’s junk food or an apple? I know families in other circumstances feel this, too, whether it’s food allergies, eating disorders or anti-seizure diets. Could Adam eat that plate of carbs and fat? Yes, but not without a lot of management and a lot of insulin. Sometimes I think about posting my own pictures, with captions like “Taco salad I made Adam when his blood sugar was too high for carbs.”

But the biggest heartbreak is when Adam apologizes for an inconvenience. Last summer he padded into my room around 1 am.

“Mom,” he said “My pod came off.”

I sat up and got out of bed.

“OK,” I said. After checking to see that his blood sugar was still in range, I said “I’ll go downstairs and fill another one. You shut that one down.”

Coming back upstairs, I got him an alcohol pad to clean his site while I primed his insulin pump.

“I’m sorry, Mom,” he said.

“It’s OK, honey,” I told him. I always let him know that I am happy to get out of bed to help him, no matter how tired I am.

We got his new pump on and I tucked him back into bed. As I kissed him on the head, he said again “I’m sorry, Mom.”  That broke my heart.

“You don’t have to be sorry,” I told him, choking up. “I’m sorry you have to do this.”

Last week, I got up at 4 am to give him chocolate milk because his blood sugar dropped below 75, just like I did at 2 am this morning. I tiptoed in and held out the straw cup for him.

“Adam,” I whispered. “I have chocolate milk for you.”

“Thank you, Mom,” he said sincerely, this fourteen-year-old kid whose daytime vocabulary often consists of grunts, along with “five minutes.” and “I don’t know.”

“You’re welcome, honey.” I told him.

It’s not our old carefree life, but it is a good life and I’m thankful for it, heartbreaks and all.

It’s a fine line we’re walking

The biggest adjustment in our life with Type 1 diabetes is the balancing act we are always doing. There are so many things to remember and most days we do a good job of  being organized. We do our best to dial in Adam’s insulin settings and make the right decisions about food and activity. We carry sugar to raise low blood sugars. Adam has it in his backpack and his pocket. I have it in my purse, in the car and in my bike bag. He has extra insulin, pump supplies and a spare meter at school and he takes a bag other places. But we have our moments where things fall through the cracks.

Last fall, Evan and I went on Adam’s Boy Scout camp out. Ron usually goes but he was out-of-town. I tried to fade into the background and just be on site for helping with carb counting at meals and making sure he was in a good place at bed time. The first night Adam gave himself too much insulin for the Oreos they had as a bedtime snack. I quickly gave him a juice. Then his pump, which is called a pod, came off. He started bleeding, soaking the side of his jeans. We retreated to the van to put on a new pod and change pants. Later, the evening activity caught up with him and his blood sugar ran low in the night. Five times I crawled out of our tent and went over to his, sticking my head in right next to him and asking him to eat or drink something.

Sometimes the best laid plans fall short. Last summer the boys went downtown on a bike ride on a Friday afternoon. Adam had sugar with him. I could see from looking at the Dexcom continuous glucose monitor app on my phone that he was running on the low side. After an hour, he called me.

“I’m low and I’m feeling better, but I don’t think I can ride home. Can you come get me?”

I jumped in the car and headed down there, naturally hitting a bunch of traffic. When I arrived, he was sitting in the grass on the Scioto Mile, with Evan right next to him. I put his bike in the back and we headed home. Evan continued his ride.

Waiting out a low at the gym

Another evening we went to the gym after dinner. Even though we were there to do strength training which doesn’t lower his blood sugar, his insulin seemed to get there before his food. He used his sugar and waited. Then my backup sugar and we waited some more.  I did some planks next to him. Evan did his exercises. Eventually, we gave up and went home, it just wasn’t our day. I don’t think he’s been back since.

One Saturday evening, the three of us rode downtown to a car show. Adam had sugar with him and I had some in my bike bag. It was hot, which affects the blood sugars. He ate some jellybeans when we got downtown and some more before we left.

Riding home after the grape soda

On the way home we got to Tuttle Recreation Center and stopped to drink water. His blood sugar was still on the low side and he ate what I had in my bag. He could probably make it home, but I thought I’d go over to Tuttle Pool and see what they had. I was happy to see I knew both people working there from Indianola Informal K-8, the boys’ old school. I asked what snacks they had.

“Just popcorn,” said Deirdre. That wasn’t going to help us.  Then she added “I have grape soda but it’s warm and I don’t want to sell it to you,” she added.

“No, actually, I need to you sell it to me,” I told her. She looked at me like I was crazy, but she was so nice about it (Indianola kids). “Really,” I told her. “My son’s blood sugar is low, and we’ve eaten all our sugar.”

We sat at Tuttle for a few minutes, sipping warm grape soda before we headed home.

In California, we had a perfect storm of setbacks. We were sleeping on the boat with our sister-in-law Carol. We took the supplies we needed overnight but left most of our belongings at the house, which they fondly call the casita (it’s a mother-in-law cottage). At bedtime, I went to turn Adam’s insulin up for a couple of hours. I programmed the controller and asked Ron to take it over to him in the front berth because my sprained ankle hurt. The controller, called a PDM (personal diabetes manager) tried too long to communicate with the pod and eventually shut the pod down, so it would not deliver insulin. I should have brought a spare with me, but I left it at the casita, so I climbed off the boat and drove back for the whole medical bag. We got the pod changed only to find the continuous glucose monitor began sending us false low blood sugar alerts. Because he wasn’t feeling a low blood sugar, Adam did a check and it was way off. After three trips across the boat in the dark to turn off the alarm, we powered down his phone for the night and went without the numbers. Our third attempt to go to sleep was interrupted by a faint beeping. It took some time to locate the noise, which was coming from the failed pod in the trash. Then we couldn’t find a safety-pin or paper clip to disable it in the middle of the night, at 1 am on a boat. I learned to keep a paper clip in his kit.

Now there are the times we are managing remotely. This fall Adam went to a birthday party at Scioto Audubon Park for a kid he hadn’t seen in a while. He rode his bike there. He texted me later that he went back to the kid’s house, and he asked to spend the night. It had been over a year since he had a sleepover; some of his friends had stopped coming around during that time. I thought right away of an obituary I read that week for a little girl in Pennsylvania who had gone to a sleepover, had a complication from a low blood sugar and never woke up. Around the country people were praying for her as she was in a coma. After determining there was no brain function, her parents turned off the life support and donated her organs. I thought about that and I still said yes to the sleepover because Ron and I decided in the hospital that we wanted Adam to do all the things he wanted in life, even if we had to do them on our own terms or do them with him. I packed up his toothbrush, his headphones and his emergency medical supplies and delivered them to the sleepover. The parents, whom I knew but hadn’t seen for a while, were terrific. I started the conversation by asking if they knew Adam had Type 1 diabetes. The mom said, “If I knew that, I had forgotten it.” The dad was familiar with the disease. I showed them the emergency glucagon pen and how to use it if he was unconscious or unresponsive. If they didn’t want to use it, that was OK, they could call 911 and then call me. Adam and I would text each other to make decisions and manage his blood sugar. I would only need to call them if he didn’t answer me. They both offered that I should call any time.

I did need to text Adam that night. First his blood sugar was too high after midnight (pizza). Then, about 5 am, it was too low. I texted him three times with no response. I called him twice. I was about to call the parents when he answered me “OK. I got it.”

He’s a teenager now and I can’t hover over him. Last week I had a nice lunch with the diabetes resource nurse at Columbus City Schools. We were talking about the importance of letting kids go at this age and trusting that we have the technology to help us stay on top of things. So, Saturday when he asked at 11 pm to sleep at another friend’s house instead of getting picked up, I had that conversation at the front of my mind. I felt a little sick as sent a series of texts to the mom, whom I knew pretty well but hadn’t seen for a while: that Adam has diabetes, he wears an insulin pump and a continuous glucose monitor I can see remotely, that we text each other to make decisions, that he doesn’t have back up supplies so I’ll need to bring them if his pump fails, that I will need to call her if he doesn’t answer me, and the kicker – that I need her to call 911 and then call me if he is unconscious or unresponsive for any reason. I am so thankful that she took it all in stride and he had a good sleepover with little sleep and no problems.

It’s a fine like we’re walking, but it’s important to let him go.

OK
I got it

 

Shirley Washington

I know, the title sounds like a Blacklist episode, but it’s not.

I had my music on shuffle at the gym this week when “Bory Samory” by Alpha Blondy came on. I used to listen to Alpha Blondy, a reggae/world music artist from the Ivory Coast, on a mix tape I brought back from Europe in 1988. He sings in his native Dioula, French and English, and sometimes a smattering of Hebrew and Arabic, as his music is political and spiritual.

I never understood all the words to “Bory Samory” but I know it is about African independence leaders. I recognize the names in the song. I learned a lot about them in a class I took at Ohio University with Dr. Shirley Washington. This week, I found a translation of the song into French and I saw that it is about the murder of those political figures. Listening to the song, I got to thinking about Dr. Washington again.

Dr. Washington taught higher level political science classes. I took Politics of Africa, Women as Political Leaders and Politics of the Middle East with her. They were small classes, ten or twelve graduate and undergraduate students together. She put the desks in a circle so we could have a discussion rather than her talking at us. We looked at the history of the region, the legacy of colonialism, the roles of culture, religion and gender, and the current political climate. They were among my favorite classes.

I visited her during her office hours several times and we got to be friends. The first time I went for help with a paper, other times for recommendation letters. I learned about her. She was a widow. She lived in Ghana for a time with her late husband. She had strong beliefs and she cared little what other people thought of her. She was a breast cancer survivor. She was the first person I saw wearing a compression sleeve. I was curious and rather than stare, I asked her about it. She explained that her lymph nodes had been removed during cancer treatment and the sleeve helped with swelling in her arm.

I can still see her small upstairs office in my mind’s eye. She had a poster on the wall. I want to say the title was “Fathers of African Independence” but that may be a title I gave it because they were all men. I can still see some of their portraits. Studying them and looking at them in her office, I recognized the names in “Bory Samory.” Names like Kwame NKrumah, Sekou Toure,  Patrice Lumumba, Haile Selassie,  Steve Biko and others.

I learned other things about her from another professor. At one point, she stood up during an Ohio University Board of Trustees meeting to protest the fact that OU still had money invested in South Africa at a time when many other universities were divesting. That did not earn her friends in the university administration, and I can imagine some of  the very important people appointed to the board of trustees did not appreciate her comments. But she was right…over time those divestitures added up and they made a difference in South Africa. Interestingly, the other professor, Dr. Barnes, was surprised when I told him she had lived in Ghana. He didn’t know that about her, or that she was a widow. She kept that, among other things, to herself.

We lost touch over 20 years ago. I have tried searching for her on the internet, searching “Shirley Washington” along with political science, PhD, Africa, Ohio University. I tried “Shirley Washington obituary”. There are lots of Shirley Washingtons including a mayor in Arizona, a professor in New York and a Fox News TV host, but none that were her.

I tried Facebook. There were a few I wasn’t sure about – what would she look like now? – but none I knew were her. The last I knew of Dr. Shirley Washington she had left OU and was teaching at a private all-girls school in the DC area. I remember the last card I got from her. I told her I was getting married, and she wrote that she was happy for me and she remembered me, her favorite student.

Shirley Washington, wherever you are, I remember you, too. I love you and I’m grateful for everything I learned from you, inside your classroom and outside of it.