MY TWO WALKS | Jane McCauley
It happened while I slept. I went to bed fully myself, excited about my hot shower and a flush toilet after a 10-day hike in the Himalayas. I woke up walking like a bow-legged cowboy wearing stiff, new chaps. Staggering to the bathroom, I held onto everything in my path. The wall, the chair, the sink and finally, the toilet. I thought I was just tired. The hike was hard. My legs needed time to recover.
I called a friend and my guide for the hike, who immediately picked me up and raced me to the hospital in Kathmandu. I couldn’t figure out how my phone worked. I couldn’t walk without holding on to someone and was put into a wheelchair to move safely from place to place. My family didn’t know where I was for at least twenty-four hours because I didn’t know how to tell them.
‘Stroke’ never occurred to me. I wasn’t coherent enough to be afraid. But after an MRI confirmed it, I spent a week in the hospital, most of it in intensive care, pondering it. I had a stroke, I had a stroke, I had a stroke. I’ve never had anything except my tonsils out and babies. It was clear to everyone at the hospital that I had a stroke except me.
***
After my stroke, I pushed through months of speech and physical therapy. When I could walk again, I practiced walking heel to toe across a room. I learned to play Sudoku and other brain twisters, including matching card games with my grandchildren. I had tea in the afternoons and relaxed for fifteen minutes, absently humming something on repeat that sounds like a mantra in order to wipe out my thoughts, giving my brain time to heal.
I also have two walks now, an inside walk and an outside walk. My inside walk is how I feel when I walk. My outside walk is what it looks like to others. For my friends, my outside walk suggests ‘she’s back to normal.’ But my legs tire faster and my inside walk gets sloppy and zig-zaggy. No one sees this.
Many stroke victims can’t get back to the person they were. They don’t understand when the left side of their body doesn’t work and someone says “you will learn to do that with your right arm and leg” as a form of encouragement. The stroke survivor might ponder (assuming they are able to ponder) how their new deficit can be so quickly dismissed. They may also wonder why they are not encouraged to relearn use of their left hand and leg. They might think their people can’t see them anymore or how much fight they have. On their worst days, they might lose sight of themselves.
My friends laugh and liken their challenges of getting older to mine after a stroke, despite the fact we’re all in our late sixties. An ordinary conversation spontaneously turns into a game of charades as I struggle to find a word. Laughter erupts as everyone, again, reminds me they forget too. Why can’t they see my struggle is more than the standard chronicles of aging? I remember who I was before and know I’m currently not that person. What they see on the outside isn’t indicative of how I’m feeling or where I am in my recovery.
I stand in the kitchen with my husband and want to share an idea I have for a short story. I’m not conjuring the words I need. “With certainty.” No. “As expected.” No, not that either, but this time I keep going. A recitation of all similar phrases follows until I land on the right word. “Inevitably.” Exhausted and frustrated, I turn and walk out of the kitchen without waiting to hear my husband’s thoughts.
Last week I met my sister at a restaurant halfway between our homes. I walked up to a door that wasn’t a door. I stood there and stared at it, as if I possessed the power to will the clear glass and aluminum frame to become a door. My sister signaled me to walk around the corner where the actual door is located. When I find my way in, she is laughing. I feel ridiculous and depressed.
***
My medical chart describes my stroke as ‘cerebrovascular accident, unspecified mechanism.’ Translated, this means I had a stroke and no one knows why. I’m not overweight. I don’t have high blood pressure, cholesterol, prediabetes, anything that would make me a stroke candidate. I don’t know what caused it, so I can’t take specific action to minimize the chances of another.
In the hospital in Kathmandu, my doctor tested me for ‘antiphospholipid syndrome’ (APS) – a blood disease that causes my blood to clot spontaneously regardless of diet and exercise. The results would be sent to me after I got home. Two weeks went by and I got a call from the doctor who told me the results are positive and I need to test again in three months. I brought the results of the blood test done in Nepal to my doctors in Minneapolis. They test twice again.
My neurologist is convinced I have APS and wants to put me on a blood thinner. However, the thrombosis doctor is not so sure, even though I tested positive for APS three times in a row. He thought my arteries might be clogged. But he was wrong, they weren’t. This is followed by radio silence from the medical team.
Two months later, my husband and I spend the month of February in North Carolina. Close friends had rented a house up the hill from us. We were dining out at a favorite Asheville restaurant when I received, between apps and entrees, a call from Dr. Thrombosis who tells me I have APS and they need me to get on a blood thinner fast.
Why now? After two months of radio silence? Dr. Thrombosis ignored my questions and told me that, in the short term, I also have to give myself shots of heparin in the stomach twice a day. They will send a video showing me how. I return to the table and burst into tears. It’ll be fine, everyone says. But APS is just another deficit no one can see.
As it turns out, it became urgent because they forgot about me. My neurologist later admitted she woke up one morning wondering “What are we doing for Jane?” She is the only one of my three doctors who really listened. Maybe the one who ultimately saved my life.
***
At first, I feel like a walking time bomb — tick, tick, tick — stepping carefully to avoid the trip wire. I think about the reality of this but no longer obsessively. I generally eat healthy, limit myself to one glass of wine and try to keep stress low when life allows. Occasionally, I get tired of the routine and go through periods of weakness, where I’m more like a terrier puppy trying to hold still when someone comes to the door. I want that bag of potato chips, scoop of ice cream and mashed potatoes with more butter than I can bear. Then relief. I do my best to behave and, when I can’t, I don’t.
My husband says the things that most people keep to themselves, unlike me who is a little more measured. Recently, on our way to dinner, he talks about the hike he and our dog, Tika, took earlier in the day. Pointing to the private golf club residences in our neighborhood he says, “That’s where Tika and I turned. At Grizzly Bear!” The name of the development is ‘Bearpath’ so I correct him because the name suddenly comes to me, despite the fact it may not matter. An example of memory association gone awry. He’s been like that since the day I met him. If he can’t think of a word, he inserts something else whether it fits or not. He has always relied on my memory. What a bitch for us both.
Occasionally, he asks me questions like “What was the name of the restaurant we went to last spring that had those really good lamb chops? I look blankly back at him in silence. He might continue with “You know, the one that was on the lake!” Hello, I think, this is Minnesota, land of over 10,000 lakes, most have restaurants on them. Eventually, I look up and say in the flattest voice I can muster, “I don’t know.” I used to be in charge of dates and places. Now, we hold hands floating in the milieu through the nameless, dateless world.
I also have a post-stroke ghost. I walk from my office into the kitchen to find every cupboard door open. I search the house for a pair of reading glasses. Not downstairs on the footstool or tables by the couch. Not in the bathroom, not on my bedside table, they’re not on the kitchen island. Each place I’m sure I would have left them. Eventually, back in my office, there are three pairs of glasses stacked on my desk like a joke. Now I can’t find my phone.
I continue to work on memory. If I can quickly associate a name with something about a person, I’ll remember forever. Sadly, this means I sometimes have to associate a name with an unbecoming quality, but I can’t afford diplomacy. It is whatever comes to me first. If I meet a man named Tom, for instance, and he has bad teeth, he becomes Tommy Teeth. Each time I see his teeth, I remember his name is Tom.
***
It has now been a year since I had my stroke. I’m not sure I’ll ever be completely my former self, but my outsides will likely not give me away. My friends are still my friends (there were times when they weren’t). It doesn’t mean my inside walk is normal or that I remember last weekend clearly or that I don’t have to come up with quick associations to remember people and places. It just happens less conspicuously.
I still gently sway when I get up from a chair, or at the gym, or walk from the car to the house. I look forward to the time I can ask my body to do something, and it just does what I ask. There are early signs my insides are starting to align with what other people see. The inside walk and the outside walk may still become one of the same. But not yet.
I walk into the laundry room and set down a bag of garbage to take out to the garage. I smell something foul and lift the lid to the washing machine to find damp, moldy clothes. I wish my post-stroke ghost would remember to move clothes from the washer to the dryer. Or I wish she wouldn’t do laundry at all. On other days, I wake up and head out to the kitchen to clean up after last night’s dinner and find that it's already done.
I would never say this out loud, but it occurs to me, what if my post-stroke ghost is me?
And what if my inside walk and my outside walk never reconcile with each other? Will I remain two people, only one of which my friends and family know?
I focus on building a force field for protection from the outside world, hoping I can remove it when I return to only one walk that includes all of me. And, if I never become who I was before, only I will know.
Jane McCauley is a re-emerging writer after a hiatus to raise a family and travel. She has been a featured writer in the Walker Art Center's poetry series and commemorative broadsides for the events. Her work has appeared in Herstry, Gathered Words and Clockhouse.