Content Warning: Feeling loss from chronic illness, isolation, ableism, inaccessibility.
Lately, I have been thinking a lot about loss. I have been feeling a loss that I couldn’t quite put my finger on. Being chronically ill and becoming disabled has brought about some periods of grieving that I never expected to feel, or to feel this hard. And there always seems to be another one just around the corner. I try to live in the moment, be positive and grateful (all of those characteristics everyone wants to see in a sick person), but some days I’m hit head on with that very real feeling of “what if this never happened to me?” Dreadful, I know.
I might be brushing my teeth and then I look in the mirror and think: “What if I never got sick?” And then I’m annoyed at myself for having to dredge that up from the deeps when I just wanted to go and watch some New Girl and have a nice day. I can be loading a few plates into the dishwasher and then my brain will start trying to think of who I would be now if this specific brand of chaos that is a connective tissue disorder didn’t make it’s way to my joints and tendons.
So yesterday I was thinking about loss again. I felt like I had lost something but I couldn’t quite figure out what it was exactly this time. It changes on a regular basis. That’s just the nature of being sick and having a body that keeps redefining itself on you. And then I was reading a poem by Mary Oliver titled “Drifting” and upon reading it, it came to me what this week’s loss is about. Here’s the poem:
Drifting, by Mary Oliver
I was enjoying everything: the rain, the path
wherever it was taking me, the earth roots
beginning to stir.
I didn’t intend to start thinking about God,
it just happened.
How God, or the gods, are invisible,
But holiness is visible, entirely.
It’s wonderful to walk along like that,
thought not the usual intention to reach an
but merely drifting.
Like clouds that only seem weightless.
but of course are not.
Are really important.
I mean, terribly important.
Not decoration by any means.
By next week the violets will be blooming.
Anyway, this was my delicious walk in the rain.
What was it actually about?
Think about what it is that music is trying to say.
It was something like that.
The poem hit me, which sounds dramatic, but it did. Socked me right in the feels. And it isn’t God that I feel I have lost. I don’t believe in God. It was the drifting. The path, where it was taking me. A delicious walk in the rain. The independence and spontaneity you can feel when you’re just sitting around the house and decide: “I feel like going for a walk, just to see where I’ll end up.” Boots hitting pavement, head bopping to whatever album is on my phone, strolling down steep hills and endless stairs. Heading for the harbour front to take in the view. Or stopping just shy of that to pop in to a coffee shop to sit down, sip a latte, devour whichever paperback is in my pocket. Or maybe even make my way down Water Street, browsing shops three-stories high with narrow, rickety staircases bringing me up and up. Whatever I felt like in the moment, I could do.
If I had known the last time I made that trek would be the last time, I like to think I would have stopped, looked around, really taken in the wonder and brilliance of just going out into the world without having to worry about how to get to where I’m going. To go down whichever side streets seemed compelling at the time. To stay out as long as I wanted, no fuss at all. I can’t even remember what day it was, or where exactly I drifted, and I really wish I could. I wish I could play it all back whenever I need to feel that sense of freedom again. I like to think my legs took me to that adorable street that seems like it’s just an alley, the one behind The Masonic Temple. Colourful houses, a bench to sit and enjoy the view. That’s where my mind goes.
I’m making it sound like I died or something, and that’s why I can’t have this thing anymore. And obviously I didn’t die. I’m still here and I’m still fabulous, it’s just all changed now. And that can feel like a loss sometimes.
It’s been well over a year since I’ve left my house on my own. Probably closer to two. Since then, my husband or a friend has had to drive me to a coffee shop or the library where I can sit for a couple hours sometimes and pretend that what I’m feeling is that same sense of freedom from before. The closest I have ever gotten to moving freely through the city in that time has been calling a cab, being delivered to the doors of my doctor’s clinic, sitting in the waiting room for an hour or so, and then being delivered back to my driveway. I used to walk there from my house. Headphones on, fresh air filling my lungs, boots hitting the pavement. alone with my thoughts and not bothered by anyone – something I really cherish. Now instead, I dial the number to the cab company I have deemed least likely to have drivers who bother me, and I say a prayer to the Disability Gods as I hop in the backseat that goes something like this: “Please, almighty ones, don’t let this man see my crutch and ask what’s wrong with my body like he’s just casually bringing up the weather.” I feel that I am constantly at the mercy of others, now.
I used to work independently. I used to drift aimlessly. I used to while away the loveliest hours sitting at cafes all over the city, writing and reading. I used to travel on my own with no real plans when I got to where I was going, just see where my feet would take me. Now I can’t even go to the mall without someone by my side. I wonder if this is how celebrities feel, but for very different reasons? Now when I buy tickets for things my friends are officially called my “attendants” and we laugh about it usually, but it feels true. They are. I mean, friends can help friends and not have to be considered some sort of caregiver being paid to be around me, but that’s a problem for another time. I do rely on them in a way that is very hard to admit to. I rely on them how I once relied on my own legs to get me where I needed to go. It’s quite humbling. Wherever I go, I’m probably only there because my husband or a friend popped over, carted my wheelchair or rollator down my front steps, and accompanied me there. And I’m so grateful that they do this willingly and without acting like they deserve sainthood for it. I also don’t want this to discredit all of the times I go out with my friends to hang out with my friends. There are lots of times when I would want to be with them anyway, of course.
So while I will be forever grateful in ways that is hard to express, sometimes it’s also a sign that my wandering days are behind me. No more boots on pavement wondering where they will be heading next. It’s all planned out. Pick up and drop off times. Help getting to where I need to go. Sometimes we go on an adventure, try to spice things up by going to a few unplanned places, but we still have to make sure those places are accessible first and that I’m out and about with the right mobility aid for the situation. If I have just my crutches on me it limits how far we can go. And if it’s a day I’m relying on my wheelchair it limits us to anywhere wheelchair accessible, which is almost nowhere in St. John’s if we’re being honest.
It’s a big adjustment, this illness. It’s a fundamental shift every time a new symptom springs up on me and reminds me that I’m not in control like I once thought I was. And it isn’t helped by the fact that I live in a city where the idea of accessibility feels mostly ignored. I live in a spot full of well-intentioned people who don’t often put those intentions to action, who treat my access to places and things like they’re doing me a great favour. They put signs up that say “ring for a ramp to be dropped at your feet if we’re not busy” and then think they have solved the problem. I often feel unwelcome. I feel othered. I feel like any hope I have of ever experiencing one of those spontaneous days of wandering are out the window. I feel like almost no one cares that this city isn’t built for people like me. I feel sad that I can’t just go for a stroll on my own, a thing that so many people take for granted (like I certainly did), because I will inevitably be met by one curb or one set of stairs too many.
Sometimes I see seat sales to cities I’ve always wanted to visit, and I forget for a minute how hard it would be. I forget the logistics and for just five minutes or so, I let myself dream of packing a bag, putting on my Blundstones, filling up my phone with Lizzo, and taking that new city by storm. And then I come back to reality. I think of all the mobility aids I would need to bring with me. I think of all the places and routes I would have to map out first to make sure I could get there. I think of how I just can’t do it on my own anymore. And that’s okay, I guess. I know someday I will still buy a ticket with my husband or a friend. I will still go to that new place and experience new things, even if it will feel different and a little scarier than before. I will make good memories with the people I love. I will find new ways to wander, new ways to define independence and spontaneity. Feeling freedom will happen again, in some form.
But, I’m still feeling that loss. I’ve gained some things along the way too, and I think about those things as well. Closer friendships, appreciation for certain things, after-school-special type life lessons, but I honestly just don’t want to focus on that stuff right now. It’s a profound loss, I think, that deserves it’s own few paragraphs without me trying to wrap it in a bow.
For now I just need a moment to wish things were still the same, to wish that I didn’t need to rearrange my life in such big ways for even the smallest things, to wish that I could experience life the same way the non-disabled people around me can. I know that wishing for that doesn’t really help, but I can’t always do things perfectly. Grief and acceptance can be quite messy. For now, I’m just going to sit with this for a little while. It’s a bit sad, uncomfortable, and heavy, but I think it’s really important to allow myself to wander into these feelings and hang out with them for awhile. These feelings of loss deserve to be aired out. They deserve a space in the light next to the happy feelings of hope I will inevitably return to soon.
For now, though, it’s okay to miss the path where it was taking me.
BlondieDecember 19, 2019 at 11:12 am (3 years ago)
Very beautiful text. I found myself in all your sentences. 5,5 years ago I was hiking, riding my bike and walked more then 30 km a day. Now I’m using wheelchair, have no friends, depending on my husband. I miss my old life, a lot
HelenDecember 20, 2019 at 3:21 pm (3 years ago)
Thank you for this. Just wanted you to know your message is being heard. I read your blog partly because you’re a great writer, partly because my husband has MS and I’m trying to somehow prepare myself for the future. Keep writing.
mark kentDecember 24, 2019 at 7:25 am (3 years ago)
hello i am from England .i am disabled have m.e .long list health issues like
migraines .people never seethe every day effects . there views.judgements are very Snotty Nosed .i take part in a lot lot research
julia assadJanuary 9, 2020 at 6:39 am (3 years ago)
omg do I relate to this, that sense of spontaneity, and unknown adventure, letting the wind take you whither…it takes so long to accept, move on and find the places, people and freedom to feel that spirit of the unknown course thru u. I am not a young woman and so cannot feel the keenness of your pain, your blog is brilliant though, your story may have changed course because of the accursed pain, but new more intimate paths open up because they have to, just to get a coffee! I am mourning my old life, you the relatively recent, but no matter, losing mobility gave me insight, and the chance to focus on projects my well self would never have accomplished. I am so glad you write this blog. Star child.
julia assadJanuary 9, 2020 at 6:42 am (3 years ago)
plus I agree 100% you need to air the blues, sorry if I was trying to cheer you up!