In the Fight of His Life

I didn’t have this on my 2020 Apocalypse Bingo Card. Last week, my 28-year-old stepson Andrew had a stroke.

While this isn’t my story to tell, and Andrew is an extremely private person, I want to raise awareness of a form of vasculitis called granulomatosis with polyangiitis (GPA), formerly known as Wegener’s. GPA is a rare disorder characterized by inflammation of the blood vessels, which can restrict blood flow and damage vital organs and tissues. Besides potential damage to the kidneys and respiratory tract, other serious complications may include vision or hearing loss, heart disease, and stroke. There is no cure, and patients with GPA will experience remission and relapse throughout their lifetime.

We don’t know how Andrew contracted this rare disease that affects just 3 in 100,000 people, but since July 2019, it has nearly cost him his life three times.

I have known Andrew since he was one and have been his and his brother Kevin’s stepmother since 1996. When his father and I divorced, we agreed that our blended family would remain the most important thing in our lives and we have honored that agreement for nearly ten years.

The last time I saw Andrew was a few weeks before Christmas. He and Kevin met me for brunch in Pittsburgh on their way home from visiting their father. Larry and Kevin tried to prepare me for how Andrew’s appearance had changed, but I was shocked to see my tall and once incredibly fit boy so thin and pale. His once robust appetite was reduced to a bit of yogurt and granola. That night, after their long drive back to central New York, Andrew was in renal failure. He has been on dialysis ever since and is on the list for a kidney transplant.

The stroke has set back that timetable, however. Right now, there are more pressing physical issues that he needs to address like learning to speak clearly again and walking unassisted. His mental health needs attention, too. While Andrew has maintained his sense of humor through much of this, he is frustrated and afraid. He is unable to work and is on long-term disability. Because of covid-19, he has no real social life. If not for his cat, Zelda, he would be completely alone most of the time. We can’t visit him in person, although his father, mother, and brother have been allowed to see him for a few minutes each day in the hospital this week.

My birthday is in mid-August and soon I’ll create a fundraiser for the Vasculitis Foundation on my personal Facebook page. If you’d like to make a donation directly to the Vasculitis Foundation, click here.  

If you’re interested, here is one of many blogs and columns I’ve written about my stepsons over the years: The Boys Are Back in Town. I love them both so much, and to see one of them suffering like this is incredibly heartbreaking. But thank you for reading. It helps knowing others are listening. I hope this finds you and yours safe and healthy.

Andrew, Kevin, and Larry having dinner at my house; post-divorce and still family
Uncle Andrew with baby Audrey
Happier times

Reading for Sanity

My twelve-year-old granddaughter Claire (who reminds me every time we talk that she will be thirteen in October) called me yesterday, and we talked about Nerf battles, bears in Yosemite, the view of the Grand Canyon from 30,000 feet, the difference between a highway and a freeway, and how the Interstate Highway System works.

Claire knows she can talk to me about anything and yesterday, those were the things.

Claire is a voracious reader, but she’d be bored by the books I read when I was a kid. I told her how I preferred teen detective Trixie Belden over Nancy Drew, but she told me that the new Nancy Drew comics are pretty good. I had always hoped that she would like the books I did as a kid, The Wind in the Willows, The Trumpet of the Swan, Ramona the Pest or the Henry Higgins books, but she likes more angsty, futuristic books. Throw in a little dystopia and she’s all in.

In non-pandemic days, I’m always up for emotionally challenging books, one in which the ending isn’t all tied up in pretty ribbons, and intellectually challenging books that ask me to rethink some long-held (and unearthed) belief or learned prejudice. Between the World and Me by Ta-Nehisi Coates is an excellent example. I’ve tried reading a few more of those challenging books in the last few months, but I find that the emotional feels are exacerbated by real life. I read newspapers and news magazines and political commentary, and as part of my research for the memoir on grief, I’ve been reading academic papers on loss, bereavement, and the implications of not being able to see a loved one dead. All of that is enough of an emotional challenge right now. This makes reading for fun imperative.

Jennifer Wiener is one of my go-to writers for good endings, and by “good” endings, I mean satisfying; ones that don’t leave me in a heap of tears on the floor. I just finished Big Summer. So much fun! And Mrs. Everything is my favorite JW book to-date. It’s also recently been optioned for a TV show!

In an Instagram post, Weiner recommended books by several Black writers including Jasmine Guillory. I am currently reading her book The Wedding Date. Based on the first half, I will definitely read more Guillory books. Terry McMillan is another Black writer I love to read for that satisfying ending. Ever since How Stella Got Her Groove Back, she’s been a favorite.

Daughters of Erietown by the Pulitzer Prize columnist from Ohio, Connie Schultz, is one I didn’t want to end, and I hope Schultz has another book coming soon.

While the book, It’s OK to Laugh by Nora McInerny Purmort, is written as a series of essays about the life and death of her husband, is not the big downer you’d think a grief memoir would be. Also, Me by Elton John is a delicious piece of writing and includes some fun gossip about people in the recording industry whose names you’ll no doubt recognize.

I was in love with Elton John and Bernie Taupin when I was a kid, much to my father’s dismay. By the time I was twelve, I had bought or been given Goodbye Yellow Brick Road; Rock of the Westies; Greatest Hits Vol. 1; Don’t Shoot Me, I’m Only the Piano Player; Mad Man Across the Water; and Caribou. When I wrote a report on Elton John in sixth grade (we had to write about someone famous), Dad told me he didn’t want me buying any more Elton John albums because EJ was gay. I had no idea what that meant, so I asked Dad, “What’s ‘gay’?” He walked away and never brought it up again, and I continued to collect Elton John albums.

Our county library is open again and is offering Grab ‘n Go service. I have three books on reserve to pick up on Saturday: The Lager Queen of Minnesota by J. Ryan Stradal, Beach Town by Mary Kay Andrews, and Still Life by Louise Penny. I want to start reading the Chief Inspector Gamache Mystery series before it comes out on Amazon Prime Video. (Do you prefer to read the book first and then watch the show, or vice versa?)

Anyway…back to Claire for a moment. Whenever her name comes up on my cell, whether it’s a phone call or text, it makes my heart skip the same way it did the day she was born. I am still in awe of her, in awe that she exists and is part of my life. Sometimes, like now, when I think too hard on it, I get to crying a little. We play Battleship on Facetime, but it’s not the same as real life. What I wouldn’t give to hug her and to have her spend the weekend. But…I will take what I can get: phone calls, texts, Facetime, appropriately distanced visits.

While these days seem like forever, they will not last forever.  

In the meantime, read for your sanity, read to lift your spirits. And listen to Steve Martin play his banjo!