And That’s the Way it Was


The home internet isn’t great, but, in truth, it’s been worse. Still, at 8:55 AM, I pack my up my laptop and head for the country store five minutes away.

I know I’m really after something more than WiFi.

Saturday morning is sunny, the cool air a reminder of a vicious storm the night before. Our south-facing, earth-sheltered house escapes the effects of even the worst winds. If not for last night’s pink lightning and intensifying winds following me and Thing1 home from the Tux shop, seemingly targeting us for annihilation, I would only note a few left-over rain drops minimizing the late spring fire hazard that threatens after the snow melts and the trees are still naked.

I hit the radio button but promptly turn down the volume as I head out our long, rocky driveway. A grouse family now lives at the top of the driveway. The territorial ‘dad’ often tries to flutter inside or attack the car, so I listened for him instead of for news .

The county store is quiet when I arrive. The first round of coffee-klatchers has already been by, sharing farming and turkey hunting gossip before abandoning the gingham oilcloth covered roundtable behind the register. I grab a seat by the deli so I can enjoy the smells of frying and baking and enjoy a view of the giant antique roll top desk and the window.

“I’m operating on four hours of sleep.” The store’s matriarch sits at the desk going through bills. She stops to prop her elbow on the desk and her head with its crown of silver-white hair on her hand. I rarely see her sit, let alone sit without moving. Normally she’s brightly chatting with coffee-breakers while answering questions about where the restroom is and if she carries a certain kind of ammo as she manages the paperwork.

“Tommy has a tree on his house, so I switched with him today,” she says.

It’s my first news of the day. Coming from the Midwest where tornado warnings regularly accompany summer storms, I’d rushed to get us home Friday night. The storm moved over our mountain and river so quickly that I’d laughed at my fears. Last night fears were realized for other people, however.

Another store regular strides past the register and round table to the hunting license counter to use the phone.

“Are you out, Margie?” the owner asks.

“We are and so’s the Pipers.” The new arrival’s sweatshirt is wet down the front, her hair is wild. “Mark had to chainsaw a tree across the drive so I could get out. Have you seen any power trucks yet?”

“A few went by, but I think they were headed up into Sandgate,” the owner answers. She looks at me. “Are you out on your road?”

“No,” I answered. “I thought the town had power.”

“The east side does apparently, but everything’s out above the notch,” she says. “Cambridge is even worse.” Cambridge, NY, the next town over from Arlington, VT is where Tommy lives.

Margie dials the power company and reports outages for herself and for neighbors she’s already checked in on before driving down her mountain. The store owner asks if they need any other help, but Margie smiled and shook her head no.

She heads out the door as the red-headed son of our plow guy saunters in. Not too long out of high school, he already has his own landscaping business. He also asks Margie if anyone on her road needs any chainsawing, and I think how unfairly the popular culture maligns kids of his generation.

Margie left. The young man grabs a coffee and a chair, telling us which neighbors have power or trees down on houses or cars. A store employee, a student at the local community college, comes from behind the deli to sit and nervously tell us about a tree on her grandfather’s car. The young man offers his help and leaves.

A few customers from Cambridge filter in. They tell us they think they were hit by a tornado, rapidly recounting moments spent huddling in mobile home bathrooms and later chainsawing trees to get out front doorways. Their voices pitch higher as they remember the panic, illustrating the magnitude of the storm more fully than any news reel.

Over the next hours, more regulars file in and out, making their calls to power and phone companies. The store owner always asks do they need help. They regularly answer with inquiries about her house. Other self-employed landscaping guys stop by for coffee breaks.

This morning customers are simply friends and neighbors who need to be safe. Later in the day, my Facebook feed features photos from friends and of New York’s governor stopping by to survey damage and make what are hopefully not empty promises.

The visit and a confirmation that at least one microburst caused the extensive damage may make the local news. What likely won’t make the news are the reports of people sending pizza to homeowners and power crews working to clear trees from a local street. I doubt I’ll hear on the radio about our plow guy helping someone out of a house or the countless offers of help and favors done — big and small — made by the country store employees.

But that’s the way it was this afternoon, and that news was just what I’d gone looking for, even if I didn’t know it.

Curating Memory

Between skipping dinners at fancy restaurants and driving themselves rather than the limos featured in every movie about proms in ‘middle class’ America, Thing1’s and SuperGal/SeriousGirlfriend’s prom expenses hover far below the $1000+ average we hear about on the news.

Even the least expensive tux rental, however is a budget buster for us. Last year Thing 1 was tall and broad enough that we altered his dad’s tux down to fit him. This year he’s 60 pounds lighter but still has his prom and hers to go to.

I finally break down and buy him a suit that can go to prom and beyond, but it isn’t just about the money.

The two of them haven’t seen each other much this winter. She was under the weather in April. He’s been trying to have a complete week of school since two days after Christmas. The last week or two, we’ve juggled his medications a few more times. Tonight he has enough energy to drive the two of them in our 20-year-old Volvo wagon.

Her mom and I are feeling unusually normal. We snap as many pictures as we can fit in our phone and camera. The kids smile at us and each other the entire time, exchanging tolerant glances as their moms and dads laugh and cry and wonder aloud where the time went.

SuperGal playfully pretend-jabs Thing1 in the chest when he makes a joke intended to provoke the females.

“Careful,” he laughs. “That’s near my bleeding intestine.”

My antennae go up.

“I thought we were done with this,” I want to say.

He was done with this morning. Now, apparently, it’s back.

I don’t go to bed early on any prom night. Until the key turns in the door, I’ll be mentally replaying every news story of every kid that’s been in a prom-related car accident (even though I’ve been comparatively calm when he drives to work at night through most of the Nor-Easters we had this winter).

This prom night when he walks in the door, I’ll ask him if they had fun. Who did they see? Was the music good? Did you have snacks?

The question that has to come, that has become part of our new normal, will have to wait until morning. Whatever the answer will be, it will not become part of his memory of this night.

Attached with Love

“Oh, I realized he was an alcoholic almost 30 years ago,” my friend told me in a moment of candor. I was gobsmacked. He, her husband, always seemed a personification control, but I also knew only the people in it know what goes on in a marriage.

I asked how his disease of addiction had affected their marriage, but I really wanted to ask, “How did you hold it together?”

“I had to just detach,” she answered without any hesitation. “I detached with love.”

I’ve thought about that phrase a lot recently.

As my friend explained and I later learned, detaching with love meant not allowing the addict’s behavior to govern her own actions or emotions.

My friend’s life had been chaotic before she began detaching with love. She explained that when he wasn’t drinking, their marriage was good. When he was drinking, he was manic and she was angry. Detaching meant finding an even path next to his.

Thing2’s illlness has been the proverbial emotional rollercoaster ride.. Just when we think we see the top of the hill, the bottom drops out with no clue where it will stop.

I generally hate rollercoasters. My stomach stays tense for days after. The current ride relaxes it’s grip on my heart for just long enough to let it relax before clenching again.

When Thing1’s symptoms start wrapping their tentacles around our hearts, it’s tempting to try to detach emotionally, but it’s also impossible. To detach means to experience the lows and lower lows of the disease through a filter, but it cannot occur without a cost.

Thing1 is not his disease, but it is part of him, and he is part of me. Anesthitizing my feelings to gain the illusion of calm, detaching enough to pretend the disease doesn’t cause emotional turmoil would require detaching part of my heart from him. That’s a price that I’m not willing to pay.

One Fine Day

Monday night we sent in Thing1’s enrollment fee to UMass Amherst. It was a huge moment but not just because he had finally decided which direction the next step in his future.

He had been back on steroids for a week to give his newest drug a chance to kick in. For four days his energy and resulting mood had been on the upswing. We stopped wondering if he’d need a medical deferral for school.

Thing1’s doctor has told us numerous times that Ulcerative Colitis is a permanent diagnosis, but it seemed as if the drugs and new diet were finally starting to control it. We bypassed hope and moved directly planning for the next few months.

Tuesday he took the last dose. After work we drove an hour to Clifton Park, NY to get a suit on sale for prom. As I drove, he talked about his plans for the prom at his school and the one at hers. A week earlier the long drive and fitting would have drained any energy and interest in conversation, let alone planning.

Wednesday was glorious. I used my day off to fax forms to schools and take care of car inspections. I listened to radio talk shows and reveled in the sunny first day that truly felt like spring. We closed out the day with burgers and silliness around the table at a local haunt. It was a celebration of normal.

It was a celebration of a new journey.

We got home while it was still light out. Thing1 claimed the coveted corner section of the sectional. I got out my laptop to follow up on a few issues at work. Thing2 channel surfed as he worked on his Star Wars fan video script. Chris stretched out on the other sofa for a well-deserved post-burger nap. Thing1 went to bed earlier than the night before. All of us chalked his exhaustion up to his busy day, refusing to entertain any possibility that the glorious string of days was an anomaly.

This morning when he came downstairs, his complexion was paler again. He silently made his diet-friendly breakfast and went to sit on the sectional. I hated the question I had to ask.

“Yes,” he answered. “One step forward, two steps back.”

“I’m sorry, Buddy,” I said, trying not to call a 6’3” gentle growing giant, ‘Baby’ as I’m often tempted to do when his mind or body is hurting.

Thing2 was almost ready for school, and I ducked into the mud room and angrily kicked off my slippers.

“I give up,” Thing1’s voice echoed around the corner. I wanted to swear at something on his behalf, but instead I slid into my clogs and yelled to Thing2 to get his shoes on.

I know parenthood doesn’t come with a finish line. It’s journey. You stay with it — sometimes a little slower — for as long as there’s breath and love in you. I keep wondering, though, if you get to a point where you automatically have a useful answer for the difficult moments.

“It’s a half step back,” was what I finally came up with. I don’t tell him everything’s going to be okay anymore. I know it will, but he’s been looking for real hope and not just flashes of it for a while now. Predicting a rosy future without knowing the solution isn’t optimism. It’s dismissive of his perspective which, while often hampered by youth, is his and which his experiences validates. “I’ll call DHMC,” I said.

Together we wondered if we needed to find a new strategy. Should we talk with our doctor(s) about alternatives such as Cannabis Oil that has been recommended by other people with UC? Should we try the next drug with a 40% success rate on the list? Thing1 finished his breakfast and got up to put his dishes in the sink where they will stay until Thing2 remembers to empty the dishwasher so discussion of staying up later on a school night can ensue.

The only strategy I could devise does not include swearing at the heavens or doctors or my life or Thing1’s. It does not allow giving into tears of frustration once I dropped off Thing2.

“I’ll call and keep calling, Buddy,” I told him, peeking around the mud room. “You call me if you start to spiral or need to come home during the day.” He nodded and started packing his bag for school.

As we have been reminded so often this winter, chronic disease, like life, is a journey. We’ve travel together for a while now. We do have our own paths, and there will be more time in our lives that we’ll navigate them independently than as a team. In these rough stretches, however, I’m sticking close. I making sure that he knows we’re working for answer and that, even with all the steps backwards, we won’t let him give up on the journey.