Day 8. Today is full of visitors, which I need right now.
I wake up to a beautiful tattooed arm of black etchings of roses I would know anywhere. It’s Lorraina, the dear caregiver who was there at the very beginning of this wretched journey, reaching out to squeeze my hand.. “Oh Rach, I just want to take care of you!”
Next come my in-laws, who I feel like I haven’t seen in ages. They always make me smile. Lorraina leaves because it is getting crowed.
Then the star of the day arrives: Dr. Goslin. My neurologist and I have a special bond. “I have been thinking of you all week. How are you doing?”
I use my language of blinking to answer. “I’m great!” I back the reply up with what Evan calls my “million dollar smile.” Dr. G takes a picture of said smile and tells me she loves me.
She shows me a picture of her new Icelandic horse,, and then she has to say goodbye. A short while later, everyone follows until it’s only my friend Ellen, who manages to light up the room on her own.
“I wore this gown just for you. Do you like it?”
“It could be worse. It could have tiny flowers on it” she reasons. Note: Next time I see her, she’s wearing a mask with tiny flowers on it.
Then she has to leave, too, so now it’s just my mom and Evan. The room that was so full of life just moments ago is now just as sterile and barren as before. That insidious thing that has been growing all week finds a black home in my brain and cracks me open I feel myself sliding into depression. I try to reason with myself and focus on the immense love that remains, burning bright within my mother and husband. It’s not enough though. No
Day 9. Dark Evan emerges. He takes pictures of the screen saver on the nurse’s computer, pointing out the absolute nonsense of it – all of which I can see from my hospital bed. Then Dark Evan takes pictures of the super hero figurines hanging by their necks across the courtyard outside the window. He says, “How sick! Who’s this even for?”
Mom is going crazy looking at my stats on the board next to me. The display includes lung volume and pressure, which mean little to me but everything to her. Tomorrow’s the day we go home, tomorrow, tomorrow. I chant in my head. Dark Evan “packs” by throwing everything in a bag. Tomorrow, tomorrow…
Day 10. From the minute I wake up, it feels like Christmas. Today, I am getting my freedom.
Then we’re told the Trilogy isn’t coming today. That there are none in the hospital, or even the state. It could take weeks or months to get a Trilogy.
Evan gets worked up. “Her scheduled surgery was last Friday. We were supposed to go home this week. What was your plan?” he demands of the equipment center representative.
Mom puts down her bag that we packed last night with such certainty. If there’s one thing you should know about my mom, it’s that she’s a fierce warrior. She joins the fight.
But I don’t get the chance to see her in her glory. I have my own mission to accomplish. I lower the volume of my tobii, and whisper Evan’s name.
He hurries away to hear what I need to say.
“I’m not doing well,” I say, which is our code for “my depression is back.”
“We’ve got to get you out of here,” he says, his knuckles tightening to white on the bed rail between us. This whole situation is wrong. There should be nothing between us. I break down further. He leaves my side and heads to the window sill, then grabs the Astral ventilator and settles on his cot. He takes out his phone and alternates between typing away on the phone and Astral, waging his own quiet war. I am overwhelmed at last by the love these two people have for me. I’m back in the game and ready to fight, which in this situation means letting things be done to me.
After my mom gets rid of the representative, we get down to the plan. Evan is programming the Astral to match the Trilogy. Then he will call Home Medical Equipment. HME will send a respiratory therapist to check out the machine and either say it worked.- at which point, we would have to leave the hospital Against Medical Advice – or they could give us the Trilogy we suspect they have been withholding.
So we wait while Evan works. Mom leaves to get him some brain food – pizza – and I stare at him while he works until I fall asleep. I wake up to a strange man entering the room. Evidently Evan made the phone call to HME while I was asleep, and this is their representative. The moment of truth arrives. Time to let things be done to me.
The representative approves of the programming Evan did. I am proud of my brilliant man. Now it’s time to see if the circuit works. The representative lays the Astral circuit on my chest, and is about to plug it in to my trach when Evan sees The circuit isn’t blowing air. He climbs over the representative, too determined to be polite. He’s in “save my wife” mode.
“There’s no air coming out,” he points out, and the representative seems entirely shocked by this. “Do you mind if I do that,” Evan says. It’s more of a statement than a question.
“Sure,” the representative readily agrees.
A hospital higher up comes to watch. My mom kicks in with, “If you let her leave with that machine and something happens to her, I will rain holy hell down on this hospital.”
Evan tries and tries to get the circuit to blow air, but the Astral circuit just won’t work. I am glad to be in Evan’s hands again, regardless of the outcome of the experiment.
The representative excuses himself to make a phone call. Within five minutes, he returns and says, “You have a Trilogy.” We didn’t know why HME would withhold the machine at the time. However, now that ventilators are on the news as the virus sweeps the globe, the difficulty around getting a working ventilator has become clear.
We don’t believe our ears, but within two hours, our very own Trilogy arrives! The hospital wants to watch me overnight to make sure the machine works, which I feel is fair considering the shoddy work of the HME representative. But tomorrow, tomorrow!
Day 11. “Don’t pay attention to what they’re doing to you,” Heather, the respiratory therapist, says from up near my head. I am strapped to yet another gurney, and it feels like the squad of EMTs is breaking my fingers one at a time as they strap me in.
“You’re going home to sleep in your own bed in your own pajamas,” she continues. Then I am whisked away through the halls, never to see her again. I hope she knows what a difference she made in those final moments in the hospital. Then I am outside for the first time in nearly two weeks. It’s cold, halfway between lion and lamb, and the trees lay their dappled shadows across me. Spring happened while I was in the hospital.
I am loaded up, and Evan hops into the ambulance beside me. The wheels are churning up the mucus still in my lungs from awful Day 1. I want to cough, but my lungs have been too weak to cough independently for over a year now. I catch Evan’s gaze, then look at the machine called a cough assist. He springs into action. He pulls off part of my trach and for a few seconds, my lungs are a vacuum. Then he hooks up the cough assist, and I am hacking. Relief. I look at him with gratitude, and he says, “Clear lungs, full heart.” I smile and nod in agreement.
We almost pass our little blue home, but the ambulance maneuvers into our driveway. Then I am out in spring again. The EMTs pause to discuss entrance strategies. I notice every detail. The tulips bloomed without me. They humble me because, despite me almost losing my mind, the rest of the world continued on.
Then we are moving again through the front door, past the living room and into our bedroom. Before I know it, I’m being transferred to my own cozy bed. The EMTs are gone so fast, they could have been a figment of my imagination.
Evan kneels beside me, and a tear slips out. “Are you overwhelmed?” he asks.
I nod “Do you need some privacy?” I nod again. He kisses me on the forehead and leaves.
Finally, finally, I cry.
thing is enough. That’s the way depression works and hurts.