“I have always been of opinion that a man who desires to get married should know either everything or nothing.”
– Oscar Wilde, ‘The Importance of Being Earnest’, Act 1
I spent too much time today reading about Guillain Barre – blogs from adults saddled with the disease and an aftermath that lasts weeks, months and years.
There’s a very dark side to this syndrome – called so because it is not, technically, a disease. There is no virus or bacteria to attribute it to. Only a body, an individual immune system, that for some as-yet-understood reason, goes horribly haywire.
For adults, GBS is far more traumatic. Death is a real possibility, and in some older adults, permanent damage of some sort likely. The higher the age, the greater the risk.
Beckett’s case seems to be leaving his body with the same vigor it entered it. With each passing day, there are new, little miracles. Tonight, he used a spoon to feed himself applesauce. He stood up from his bed when we weren’t paying attention, and shuffled over to the cot on which Heidi will sleep tonight.
“Beckett!” Heidi exclaimed, in a “What the hell are you doing kid? You could hurt yourself real bad.” kind of way.
We try to tell ourselves; don’t get your hopes up too much. Don’t expect his condition to keep improving with such speed. Even parents we’ve met who have had children with GBS warn us of plateaus and periods where the healing stops, and the return to normalcy becomes much more tedious, much more slow, with the final stretch to movement like it was in the pre-GBS days hard, and perhaps even impossible, to come by.
We’ve always been glass-half-fullers, I think. And so secretly, we pray and believe and hope, Beckett gets there. That his stay at the Barrow Neurological Institute at St. Joseph’s Medical Center is quick, and relatively painless.
An interesting day today, really. Beckett is staying within the Neurological Institute wing – a place where adults and children who’ve suffered all kind of brain and nerve related damage are living, trying to put the pieces of their lives back together. In just the first couple hours, I got the sense that some of these patients have been here so long, this has become “home.” There are teens who seem settled here; parents who seem ready to bust out.
There are tired parents; and friendly parents – sleeping on chairs in the lobby and showing us where the ice cream stash for patients and caregivers are. “You can take as much as you want,” one man said to our family tonight, with a smile.
Like I said last night, little silver linings everywhere.
Tonight, I think was the first night, though, that the gravity of everything we’ve been through these last 10 days really came crashing down. Tonight, I realized, this process: It’s exhausting. From work to hospital to home. Shift changes and schedule manipulation. Sleeping on air mattresses, and cots, and chairs. The mental toll of it all. Tonight, I also realized, be careful, man, you could make yourself sick if you don’t take it real careful.
I know Heidi reached something of a breaking point, tonight. The facility is not what she hoped. Rather than the bright colors of Cardon – a place solely for children – this is a mixed age facility. The walls are drab, the TV small. It’s more utilitarian, with far less emphasis on trying to bring a childish whimsy into the hospital setting.
But from what we hear, they work wonders with the physical therapy. And that’s the important part now.
Tonight, too, I was insensitive. You keep trying to wear this face. This face of having it all under control; of moving methodically from one step to the next, like there’s a road map to recovery. Head west on Interstate 40, drop down south on US Highway 89, and cut in on US 60, drive 10 miles and you’re done. Situation solved. Normalcy returned.
But it’s nothing like that. I’ve eaten 25 of my last 30 meals on paper plates; and washed too many dishes in a cramped hospital sink. I slept on the floor last night; listening to an infant scream – literally a throat-stripping scream – for two hours. I’ve become immune to the beeps and wails of machines that monitor vital signs; and don’t even notice when men and women I barely know come into my sleeping space in the middle of the night to prod and poke my son.
We spent our 10th anniversary celebration trying to get home; Heidi’s birthday watching him slip into full-body paralysis and Valentine’s Day packing our family up from one institution and moving him to another – in central Phoenix – which means crawling through rush hour traffic to visit.
No wonder we’re tired.
Tonight, Heidi just needed to vent. And rather than take it all in and listen, I criticized her for having an opinion. That’s what all this exhaustion does; it makes mushy-washy out of your head.
So after a “discussion” in the bathroom, you put on your brave face and turn to your son. Where does that map say we’re supposed to go now? Next step, please. You can do it.
I had to place a picture of Brody tonight in the blog; probably the most solid rock in the whole family these days – up to her usual hijinks, embracing each rapid-fire change with a graceful enthusiasm.
Us: “Brody, you’re going to have to go to a full-day school program starting Wednesday.”
Us: “But it’ll only probably last a couple weeks. Then you’ll get to come home like normal with mommy.”
Brody: “No, I wanna stay. Longer.” (Laughs.)
Change as an agent of fear? Nah, change as a chance to do something new. That’s the Brody way.
Tonight, we ate like royalty again. You’d think I work at the Scottsdale Culinary Institute with these meals. Fresh French Bread and Brie; Asian Salad; Curried Sweet Potato Coconut Soup; homemade Chocolate Dipped Macaroons. My friend Helga made dinner tonight. She’s one of the best graphic designers this side of the Mississippi. It came with a cute menu, with sassy quotations. Under the macaroons part of the menu, it read, in italics: “Do you guys like coconut? Some people don’t. I call those people weirdos.”
God, I love my friends.
What a wonderful, magical support network. Rather than run and hide, they step up, alter their own lives for me and my family. How can one man and his family deserve such kindness?
By the time I left work tonight and got to the hospital, it was 6. By the time we sat down to eat, it was 6:30. There would be no time in the day for cooking. It would be Taco Bell, or Wendy’s, or nothing. Instead, we have this. Real, nourishing food. The gateway to health. Prepared with love.
Friends, I’ll say it again: You are lifting us up on your shoulders and carrying the family back to health; one generous contribution at a time, whether it be prayer, or love, or care packages or food.
Please don’t ever underestimate the impact you are having. If we seem strong on the outside, it’s only because you are giving us the tools to appear so.
It’s 80 here in the desert. And despite the warm temperatures, the deciduous trees are still barren. You can lift the plants from their native lands; have them thrive in new climates with love and water and care, but you can’t completely strip the basis of their coding from them.
They have their roots, their lineage, and they stick to those time-tested behavioral patterns as best they can. Like an ex-pat who seeks out a burger and fries in some Prague cafe, they have a code – a way of doing things defined by something deeper than their immediate surroundings.
So to, it is, with my mother and father. And Heidi’s mother and step-father. And her dad and step-mom. They live here; or they have traveled here. Each contributing their own piece to the puzzle. Each with their own strength.
Dad with his iPad and his Angry Birds and big love. Mom with her almost God-gifted caring touch. Electa and Andy with their ceaseless dedication – nailing the perfect Lego set that makes Beckett eternally happy, and providing Brody’s safe haven: a place where Brody and Blythe dream of sleepovers and create the perfect imaginary drive-thru restaurant. Grandpa Bob with his ageless vitality and uplifting encouragement. Grandma Kitty with her attention to detail – no little stone hiding some recovery-nugget unturned. Nana with her cookies, and prayer circles and focus on nutrition. Papa with his big networks of institutional support.
To praise friends, and forget about the power of this family would be asinine. A ridiculous failure to recognize that this support network not only involves friendship, but the deep currents of blood.
I could go on and on, because this is my therapy. A glass of vodka, mixed with the nectar of that beautiful grapefruit tree in my backyard. And a keyboard.
And you, an army of readers, pouring in the love from across the globe, healing us, one day at a time.
Without you, the picture would be quite different.
Of this, I am certain.
– Ed, Heidi, Beckett and Brody