Breathe in…
I’ve been plagued with a terrible sense of urgency lately. The past few days have found me in marathon writing sessions, desperate to get it all down, to get it all out.
So here I am in my 40th hour of consciousness, drinking chilled pinot grigio and ruminating over this post that I’ve started and stopped a half dozen times. I’ve been consumed by frenzied planning. There is so much I want to do this summer. Little things, big things. Ordinary things, extraordinary things. Time has never seemed like such an enemy to me as it does right now. I feel her shadow across my path constantly these days.
In the interest of sharing the good, the bad, and the ugly, I am yeeting myself out of my comfort zone right now and embracing that which I hate most: vulnerability. Being vulnerable makes me feel weak. I swear this disease has been harder emotionally than it has physically because it puts me in the position of having to ask for help, and that means being vulnerable and breaking down these walls that have kept everyone in my life, even those I love beyond words, at a safe distance. I don’t do vulnerable well. It makes me itchy.
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A few nights ago, I went out into our garage to survey the stuff we have for our next fundraiser in October. I’m paying for a storage unit close to our house to store most of what we have, but I’m deeply annoyed that they raise their prices every 3 months by at least $30 and I’m ready to abandon the unit and make some room in our perfectly good, but currently full of lots of crap, storage room. So I decided to go out to the garage to take an inventory of what we have and do some calculations in terms of space we need. It was late and I didn’t want to wake anyone, so I didn’t want to take my wheelchair because I would’ve had to go out the front door and down the ramp and into the garage through the front. Instead, I went through our mudroom and navigated the 4 steps down into the garage. I’m very careful on those steps because they’re wood, which would hurt if I fell, but there’s also nothing soft that I could possibly land on. It would either be the cement floor or headlong into the shelves at the bottom and then onto the floor.
I made it down successfully and was looking at the shelves that currently hold all the fundraiser stuff. After a minute or 2, I suddenly lost my balance and ended up falling into the shelf and couldn’t raise my arms to break the fall. The shelf being there actually saved me because it would’ve been a straight shot to the cement floor. Instead, I hit the shelf and sort of slid down, which spared me from any real injury beyond a couple of cuts and bruises and a seriously bruised ego. But I remember sitting there stunned for a minute thinking what the actual fuck? How did I manage to get down the stairs with no problem but fall down when I was standing still? This is such a stupid disease. Fortunately, I didn’t land completely on the ground, but rather was sort of propped up between the shelf and the lawn mower. So with some effort I was able to get myself dislodged and upright. I had to stay there for a few minutes before I tried to get back up the stairs, but at least I was spared the indignity of having to lie on the cold garage floor all night until someone came searching for me.
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The pain took me by surprise, probably because I’d numbed myself to it for so long. Warm tears rolling down my face woke me this morning and I thought, screw this.
I woke up sick. The familiar rolling waves of nausea associated with fear and grief and despair and loneliness. Ginger ale and tums can’t ease the discomfort; its source lies deep within me, and it bubbles, slowly at first, to the surface and finally unleashes a brutal assault on my whole being. The harsh realization that I can’t do this hits me square and hard, knocking the wind from me and sending my head reeling into an unstoppable spin.
As the realization set in slowly over the hours that ushered the dark out and the morning sun in, I started to lose myself in the enormity of it all. Perpetual dying has taken its toll. My formidable opponent. I surrender. Mechanically I arose and went about the business of the day. I had my tea, I showered, and I read and responded to emails. But I remember practically none of it. I was going through the motions.
Going through the motions. It’s been a rough few months. Between losing my Dad last November and then losing Kyle and Tucker, two friends and ALS warriors I met shortly after I was diagnosed, the loss and sadness has just been…constant.
Nights have been especially hellish. It’s the silence. The moments between the sounds of life feel like chasms of emptiness. I hardly have the words to describe the absence of sound. Each heartbeat is like an explosion. I do have the whir of the BiPap to keep me company while it does the job of lightening the load of breathing as I lay staring at the ceiling, so I got that going for me…
There have been times of relief, of joy even. It’s not all so woeful! I’ll write about those soon. But right now I’m tired. And maybe just a little drunk.
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Sunday is Easter. Easter is a complicated holiday for me. For me as a Christian, it’s a time of renewal and hope, and I always loved celebrating the holiday with family. When I was a kid, we would all gather at my grandparents’ house for dinner, after which we would partake in the greatest Easter egg hunt ever. As I grew older and understood the deeper significance of the season, it meant that much more to me. It became complicated 16 years ago when my grandmother died on Holy Tuesday, 5 days before Easter. Her passing and the subsequent fracture of my extended family just made this time of year…complicated.
Fun fact to inject some levity into this otherwise dark post: Before I fell into publishing and journalism as a career, I was on the road to becoming a Lutheran minister. That’s right, just call me The Rev. I was raised Catholic but left the Catholic church in my mid-teens when I started attending a local Lutheran church with a friend whose house I used to stay at most weekends. My time at that church awakened a deep faith in me and I fell in love with the scripture, with hearing the Word, with the community of parishioners who quickly became like family to me. Over the years, I became more involved in the church. I taught Sunday school and led the youth group. I served for a number of years on the church council.
Eventually I felt called to serve. Alas, fate (and a disagreement with my bishop) saved a multitude of luckless parishioners in some parallel universe from having me preach at them week after week. In fact, I only ever delivered one sermon in my life. I was in the last month of my undergrad studies and was applying to the M.Div program at the Lutheran seminary in Philadelphia. Part of the application process was to procure the support and recommendation from my home congregation. After several meetings with the church council and countless hours of counsel from my minister, I was asked to deliver a sermon to the congregation. The scripture the week I was to preach, which was the week after Easter, happened to be one of my favorite passages: The Road to Emmaus (Luke 24:13-35). It’s one of the early resurrection appearances of Jesus after his crucifixion and the discovery of the empty tomb, and it offers an opportunity to rediscover Christ’s presence in our lives and to gain fresh understanding of God’s transforming grace. It’s a piece of scripture that has always resonated deeply with me and, if I do say so myself, I crushed that sermon. Totally crushed it.
Anyway. That was a lifetime ago.
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It’s raining out. I used to love to go for walks on nights like this. I remember one of the last walks I took around my neighborhood before I couldn’t walk around my neighborhood anymore.
It was an interesting walk. It was after midnight and I suppose it was in the 40s, but what with the wind and all, who knows how cold it really was. I tell you though, there’s nothing like being out there that late at night while the world around you sleeps. The wind tried to snatch my hat away, settling instead for making me gasp when it blew into my face. I walked through it all, drinking deeply from and keeping warm with a thermos full of tea until I was good and dead behind the eyes.
When I returned home, I lay back on my bed, fully clothed and on top of the blankets, and covered my face with a pillow. I thought about the wind outside, how it had pushed me and made me lean into it for balance. I can tell you why we think of the wind as a living thing, if you like. It’s because it has a voice. It howls around the corners of buildings and whispers past your ears. It sighs over the ground and bustles on its way around your legs. If I thought it would tell me something I wanted to hear, I might have asked it a few things.
…Breathe out.
Rise Against ALS! 