My husband, Dennis, and I have grown two kids. One with chronic health issues/dyslexia and the other with autism. We have had to ask them to do hard things ongoing. Over the last decade, the place where my empathy lived in me needed excavating and re-arranging to make room for reality. Our reality was frequently filled with urgency and my heart seemed to always be the causality of that urgency. One does have to be careful because hearts are fragile things. Mine is no exception. My husband and I joke that we have elastic hearts but part of mine was shut down for business for the better part of a decade. I didn’t listen to music or write while we were in the middle of learning how to be prepared for urgency. Living with chronic illness can be like living in a house with the roof torn off. Preparedness was the tarp that kept the weather out while we made repairs. Now that our kids are 19 and 23 I’ve started to write again. These are some of my words.
During the big Northeast blackout of 2003, I held my BlackBerry in my hand staring at it like it held all of the answers to everything. This was just post 9/11 and my mind was reeling. My calls to Dennis weren’t going through. No one’s calls were going anywhere. His law office was in downtown Cleveland at the time, 40 minutes from the suburb of Hudson, Ohio where we lived. Much larger than the Northeast Blackout of 1965, in America alone, this blackout affected 45 million people in 8 states. Everyone was instantly cut off. No one knew what was happening.
A software bug at FirstEnergy Corporation in Ohio caused this power outage. When overloaded transmission lines hit untrimmed trees, the alarm didn’t sound to warn maintenance workers. It was a manageable issue that spiraled into a massive problem for the electric grid. Phone services were strained due to the overload in calls. Detroit lost water pressure and was under a water boiling advisory for 4 days after power was restored. Cleveland and New York saw sewage water spill into waterways, forcing many beach closures. Our grand systems are fragile because we are imperfect.
That was the age of dial up. Reader Rabbit CDs. Netflix delivered DVDs to my mailbox that either offered blissfully instant entertainment and unbridled joy for my kids or scratched DVDs that wouldn’t play and my fervent wish that DVDs had never been invented. I didn’t even know I needed to back up my Blackberry back then because I didn’t know what back up even meant. I didn’t get what I Tunes was and I didn’t care. I was wholly unimpressed with our plasma TV. If it broadcasted some content, I was fine with it no matter what I watched the content on. I wasn’t even entirely sure what a browser was. Browsers had nothing to do with autism or cyclic vomiting syndrome or dyslexia or executive functioning skills or Stage 4 Endometriosis. I was deeply involved in homeschooling and caring for my kids and for myself. Those were the issues central to my life. Technology was mostly just white noise to me in 2003. I didn’t even own a portable radio. Only people who lived through the depression had radios and re-used foil. Only old people thought general preparedness for emergencies or lean times was prudent.
It was only months after the birth of Eamon in 2001 that I committed my first act of preparedness. He was born with severe reflux that morphed into GERD. Eventually a diagnosis of Cyclic Vomiting Syndrome was added soon after his fifth birthday. His health was fragile.
I kept a Black Bag parked next to the kitchen door in case one of us needed to go to the ER. It held everything I needed to care for myself and Eamon if he needed to go to the ER or be admitted. It was the only thing I had control over in situations that were mostly out of my control. That it rested eternally by the garage door in our kitchen was a constant source of comfort to me and helped me to not feel irreparably vulnerable.
Even after several years of deeply present living, I was a slow learner regarding what to prepare for though. One day about 7 days into a viral illness, Eamon’s status changed rapidly. I had failed to persuade an on-call doctor that Eamon needed to be admitted immediately and instead let myself be convinced of a 6-hour waiting period at home before going to admission. He had been vomiting for far too long. By the time I left for the hospital with Eamon strapped in his car seat he was vomiting blood into a bowl. I had to stop for gas because my car was nearly empty. There was nothing in my Black Bag to help me through that. My car doesn’t go lower than half a tank now. Even that makes me anxious.
The time Dennis was gone in Florida for 9 weeks for a trial I experienced for the first time what it was to be incapable of caring for myself and my kids who were 11 years old and 6 years old at the time. Brogan had twisted his ankle after slipping on some crayons that were on the floor and he damaged the growth plate in his ankle. It was purple and swollen and he couldn’t even stand. On top of that both Brogan and Eamon both had a virus with a high temperatures and fever for 8 days. Everyone was so sick. The only way to care of them since Brogan couldn’t even get to the bathroom by himself was to pull mattresses downstairs to the family room for sleeping together. When the power went out for two days it was a good thing the mattresses were already on the family room floor in front of the fireplace. It was a bad thing that I was nearly out of any food that was usable without power. When a migraine settled in with me like it was my new best friend and oral medications wouldn’t stay down and I couldn’t stand up, I sent B crawling up the stairs with the one functioning flashlight we had to the medicine closet for Tylenol suppositories. We had two left. Luckily, they were on a lower shelf so he could reach them.
That was the moment I vowed never to be wholly unprepared again. I promised myself I’d make sure my kids always understood that preparedness was a way of life. That was back before I knew that kids come with their own agendas but I persisted nonetheless. We have one kid who plans for nearly every contingency and takes the safely conservative route ahead of time by wherever possible being informed and armed with information on all possible scenarios. If I put him in charge of anything, I’ll get a bulleted report of ranked choices for all possible actions to be considered with commentary and footnotes. And then there’s my other kid who surveys most situations for about two seconds, says, fuck it, I’m going in, then quickly mounts an excavation into the middle of whatever situation is unfolding. A planner and a pouncer.
Now, on this day, while we wait for Dennis’s Covid test results, I’m uprooted. Floating. Ready. And yet unready. For more than a decade I lived permanently planted in the present. One day at a time. One family incident or struggle or joyful pursuit or fight for improvement or crisis or transition or surgery at a time. There were dozens and dozens of times I was isolated at home for weeks on end only leaving when hired help came to take over so I could go to the doctor or the pharmacy or take one kid to OT or PT or for medical follow ups. Occasionally I went to get my hair cut and afterwards I would sit by myself in the car alone with my thoughts. That was enough for a re-charge. It’s not the isolation that consumes me. It’s not the slog. It’s not that we’re in a distance race with no ending in sight. It’s that the path is not marked at all.
I couldn’t get ahead of myself in an autism diagnosis. The present held too much to attend to. Autism paths have been well traveled by folks who willingly guided me. I couldn’t end a cycle of nausea and vomiting by projecting onto it anxiety and concern. Only calm planning, empathy, a treatment plan, and endless patience will end an episode. I couldn’t expect Dennis to understand where I was in the care of myself and our family if I didn’t even know what kind of crisis I was in at any given moment. These were the hardest times. Now we finally fit together. The two of us. Dennis and I. We can snap together at a moment’s notice and during the times when we don’t, we know it. I am not one anymore. We are two.
Today I stare at my phone fully aware that people who should have known missed the warning signs that my family saw in January regarding this virus. The alarm sounded for us here in this house. We prepared. There are huge gaps in precious supply lines. People in charge who should not be. Lies and temper tantrums on live TV every day. We’ve been flashing red for a while now here in the United States.
I stare at my phone knowing that it doesn’t hold the answers to everything and I know that if he has to go, if Dennis needs care from a hospital, my Black Bag placed carefully in my closet will do exactly nothing to help him and I tell myself that we are used to things that don’t have an end in sight. I tell myself we are not instantly cut off from another. We are connected. We are connected through this.
I text my husband to see if he’s ready for more Tylenol. I want to know what his temperature is. He’s had a high fever for 11 days. It’s been unrelenting. The false negatives on coronavirus tests abound here. No one is sure what they are doing. People have started to believe only in things that will help them. Everything else is superfluous and unreal. I place the meds and a snack outside of the door of his bedroom and retreat downstairs.
“I love you all the words,” I text. “I know. Me too,” he responds. Then I stare at my phone some more looking for answers.
Dennis was alerted by phone on March 17, 2020 that he had been in a room four days earlier with a person who had since tested positive for Covid. The night before this call, Dennis had developed a fever, body aches, and a cough. Testing had just started here and was chaotic and inconsistent in procedure. He had an X-ray showing widespread inflammation. The lab would not run a doctor-ordered Flu A and B test. His first and second coronavirus test were negative. Based on his symptoms and the symptoms of other patients who had been tested at the same time, Dennis’s doctor is concerned those tests were not accurate. We’re waiting for antibody tests to arrive here in Ohio. After 11 days of fever, impressive fatigue, body aches, and cough, Dennis’s fever broke. It took a while before his oxygen stayed normal when he was going up stairs or walking around. He still has a cough but he is recovering, back to working from home and able to go on walks now as long as the air isn’t too cold. Relief is our constant companion.