Mark was transferred to a rehab on Tuesday. It might have been Monday. It was definitely not yesterday. I am tired. We’re heading for three weeks of him being in some medical setting. We will likely make it to four. Over the past four days, I’ve gotten Michael and Ben off to college, my Alma has returned to Massachusetts, and I discovered that Ben’s rabbit was very sick and had to put it down. It’s just Matthew and me now, a house that was a whirlwind wound down to a whisper.
Mark has no inanimate objects attached to him anymore, other than the trach. The stuffing was removed from his nose; he can breathe through it for the first time in 18 months. The trach is now opened up so some air can go up while the rest goes down. The air going down fills his lungs; the air going up passes his vocal chords and allows him to speak quietly. Limiting the air heading north keeps pressure off the graft as it heals.
Mark is only allowed Covid-style outside visitors. Go to the window labelled Room 120, hope he’s there and not in therapy, and wave. Call him on the phone, hope he answers, and talk to him while looking at him. Hope he knows how to use the phone. The first night he was there, my phone rang. I recognized the caller ID as his direct room number. I answered. Mark? Mark? Can you hear me? There was only breathing, and the quiet murmur of a TV in the background. I hung up. The phone number called me again. Breathing sounds. No voice. I hung up and called the nurse’s station. They assured me that Mark was fine. This cycle repeated a few more times. “I am getting anxious and need to hear for myself that Mark can talk. He should be able to talk.”
One of the many problems Covid poses when you have a loved one in a facility is the limit of either one dedicated support person or in this case, none, being allowed to visit. I know Mark. I know his baseline. I know all his baselines. I know how he looks, thinks, breathes, acts, sleeps when he’s fine. And when he has air in his brain. And when he’s had a seizure. Maybe it’s a one-size-fits-all for these things. But I don’t know that every caregiver in every setting will catch the little things that are clues that he needs immediate help. My brother Dale knows the staff at the rehab, and texted me some intel last night. “He looks better in person than on paper,” I was told. This is wonderful. It’s also my constant fear. Mark fakes things so, so well. No pain, no fears, no anxiety, no memory problems. Consistently when he was at the hospital, if I asked him what he had had for a meal and he could not remember, he’d casually say, “Oh, you know, the usual.”
I know folks who work with the brain know to watch out for these slights-of-hand from people like Mark. I am just anxious. He weighs 123 lbs. His head has been through a lot. I’ve been through a lot.
The nurse went into Mark’s room and put him on the phone with me. “Mark, can you hear me?” Forced air sound. “Mark, is the nurse in there with you?” Forced air sound. “Put her on the phone.” The nurse finally figured out that using a landline, Mark was holding the bottom of the phone too close to his trach. All I was getting was trach exhales. She showed him how to hold it higher, and there was his voice, a little wobbly but there. Whew.
On Tuesday night, or maybe Wednesday, I was determined to get out and take a walk. It’s been weeks since I’ve exercised. I donned my baseball cap and headed around the block. Three houses down, the elderly Nepali woman with her gorgeous colorful textiles was standing on her back patio. I waved, she waved back. Then she turned her palm inward and summoned. This was new. I’ve walked with her around the block a couple times. I haven’t approached her house. I walked through her yard to the back. She was sitting in the shade with her daughter. They motioned for me to sit down. Grandmother speaks no English. Her daughter spoke some, more than she would give herself credit for. We weaved our way through a nice-to-meet-you conversation. Dhan, the Grandmother, Hari, her daughter and their family have lived in Pittsburgh for nine years. They like to grow vegetables and cook. Grandmother likes to walk and talk to people. With the virus, they can’t visit with neighbors as much. They hope for that to change. I visited for a half hour, then walked back home.
The next morning, I went out determined to take a longer walk. As I crested the hill, there was Dhan out for her morning walk. We walked towards each other, and when we met Dhan turned around to walk with me. She chatted away about things unknown to me. Sometimes it grew quiet. I’d point out flowers or the sky. She’d nod and tell me a story. When we reach her house, we waved goodbye. My new friend who I don’t understand, and it doesn’t seem to matter. We can be companionable. It’s really all we need.
On Day 7 of Mark being in the hospital, I visited for 5 hours and then told him I needed to go. “Already?” he said sadly. I counted in my head. “Mark, I’ve been here 60 hours in the past week.” He looked surprised. We didn’t know then that the next day he’d have another surgery. I logged another 11 hours.
We all crave companionship. If Covid has taught me anything, it’s that even the introverts have a breaking point where they need connection. Ideally, it’s with people you feel close to, laugh with, share with, grow old with. Friends, family, neighbors, colleagues. The adjustments we are making to try to keep our human connections are sometimes outlandish, sometimes dystopian. They are a beautiful testament to our adaptability, our creativity, our stubbornness and persistence to meet our basic human needs.
Maybe I’ll go watch Mark through his window. Maybe I’ll wait for him to come home and sit next to me where we can read the paper quietly together. Watch the dogs play. Talk about how the tomatoes are doing.
I am anxious for when he comes home. Will he need a walker again? Will he remember to take his medicine? Will he try to drive? Will I have to follow him room-to-room again, as I did for many months last year?
Regardless, we will be together then. He will be home. And that is what will matter most.