January 24th, 2019

What. A. Morning. Guys, I am not kidding. We launched last night, so sleeping was weird. The morning jaunt to school was beautiful; a sweet moment when duderroo almost fell asleep against me during our goodbye hug. I was then offered a senior’s discount while shopping – because I’m cute, not sixty, and arrived home to share this incredulous story with Aisha and she was sitting quietly on the couch.

I often return home to find her sitting there. It’s one of my favorite things about us both working from home; her face, soft as she flicks through her phone, her legs curled under her and the morning light filling the window she sits in front of, embracing her in a golden glow. Sometimes I just look, taking her in; other days I come blowing in with a crazy story or something cool to report from the CBC. Sometimes she has an earful for me, and we’ll sit and talk about everything. Today was different. Her feet were planted on the floor, and my ‘offer’ held no ensuing jokes. Her eyes were different. She had finally got the call.

It’s a funny thing, being a young couple that lives with chronic pain in their life, especially when it’s the not-yet-thirty half that’s hurt. I mean, to be fair, anyone with a physical “thing” understands what I mean because it’s just a constant reality for you, but practically invisible to others. Our early relationship was very physical: dancing, walks, gym buddies and active sex. Now, we’re couch buddies, have to consider if a walk is too long, and well….

Things have completely changed in relation to our physical relationship because of Aisha’s back. So, not only is this news great for her, it’s a big question mark for the three of us as a family on what ‘next’ looks like and I think we’re all filled with as much hope as we are fear.

I am high-vibration-(not, but totally) freaking-out because this is finally happening and all I can think of is: duderroo is already having some trouble and well, surgery even with the best outcome is mentally and emotionally draining for everyone involved; we aren’t as financially or physically prepared as we had hoped; my dad randomly ended up paralyzed so, that’s something my brain wants to ‘try on Aisha’ now, because that is so, so helpful. I’m a little overwhelmed. So, I reached out to my mum, sister, and sister-like-long-time friend with the deadpan, “So. Aisha is having surgery on Monday” text. My sister was great, relaxed and positive which is what I needed. My mum all of a sudden has a close friend willing to talk to Aisha about the surgery. Which is amazing BUT, pre-op is tomorrow, and we have a life to organize, so a long-distance call to Carol is a little out of reach at the moment (but anytime over the last eight months would have been cool). Mum and I are so similar, “Oh! What? You’re freaking out? Here, let me provide you with a plethora of options and we’ll talk over the details now, yeah?” So, I know, albeit late, it was with great intention. But then, and this is honestly (not to be rude) why I don’t share my news with friends anymore. Picture this, me sitting here the perfect picture of calm while my brain is alternating between imagining me building a frigging electric track for Aisha to move around the house in, and building a bionic suit, so that I just become her body – because my brain loves the worst-case scenarios so paralysis is the obvious choice – and my friend’s text finally comes in, “Oh no! What for?”

….

Well, out of the blue Aisha’s decided she’d like to look like a fox, and complete reconstructive surgery is Monday.

Guys. If you don’t have time to check in when someone sends you big news – please do not respond.

I know that this is no big deal. That Aisha walks dogs, plays with duderonomy, everything that people without chronic pain do. The thing is, she has two scales she has to check in with multiple times a day that we, non-pain people, don’t have: how is my pain and how is my panic. Because you see, constant pain isn’t just about having a sore appendage that is irksome. I have that kind of pain – I bummed my shoulder. I think about it maybe eight times a month and forget about it the rest of the time. Aisha wakes up every day and if she is at a 9/10 on the pain scale, but it is normal pain, her panic is 0 and she seems normal. A new 2/10 pain in her ankle but related to her back because she can feel it searing down her leg, causes a 10/10 panic and we are then dealing with emotions and resulting exhaustion from having no bloody clue what we are doing. This surgery is hopefully going to reduce a lot of this daily stuff. The doctor’s hope that her microdiscectomy will at least conquer the pain and loss of feeling she sometimes has from her hips down. The lower back pain will probably never go away.

Random tie in here, but I was watching an incredible TED Talk video this morning about ‘sex for money’ and how society and law-makers influence these policies (read: lives). How does this tie in? Well, we have minority populations across this world governed by laws, or directives, created by people who cannot (this is a ranty one – I recognize all the efforts and successes of minorities to penetrate governing bodies and make change) empathize with any minority population. We are well versed with my ‘minority’ report, but Aisha’s is much more insidious. We have no physical walk-through of this process. We just found out today where she has to go tomorrow, and then tomorrow where she’ll be Monday; she has not met the man who is going to shave away at her spine. She can’t get ODSP to cover these next few weeks, because she makes “too much money”. She is self-employed. Thankfully we have someone available for duderroo, but to be honest, all of that holds almost as much stress as the surgery. For me: will someone be there to meet her? She has to go alone tomorrow, so will someone make sure she is calm enough to remember to ask for the stuff that helps her with the anesthetic? She gets really sick without it. Will someone make sure she is ok? Just, ok?

We have created a world where almost everyone is between a rock and a hard place. Sex workers cannot direct their livelihood because, well, the rest of us just don’t want that kind of non-conforming behavior in our neighborhoods. We criminalize the people that turn to this ancient industry because our economy doesn’t provide job options, education access, or affordable housing, but the people who continually search out the service are…not…criminalized. I am not going to get into making sure everything here is continentally correct. The point is – it would be hard to legitimize sex-work because we’d have to acknowledge it and change a lot about how we interact with our world. It would be hard to make our health system seem like a holistic caring system because a lot would have to be done, and a lot of it for the sake of doing the right thing, meaning low ROI.

My dad’s paralysis came on one morning during a family trip to Nova Scotia. To this day I will never know the extent of rallying, organizing and everything else needed to get him from Digby to Halifax (232km) and then from Halifax to Stratford General Hospital, Stratford, On (1929km). All this kid remembers is it seemed effortless – I think it took maybe three days to get home with all of this going on. My mum did not have to worry about accommodations, about a helicopter, a ramp, a home-installed elevator, a handicap van or a rehabilitation bed, waiting, at Parkwood Hospital. The town of Stratford was behind my mum, and the entire power of the hospital got my dad home. My partner has to drive into Hamilton, alone, in the snow.

I don’t have anyone to help me make sure tomorrow works for everyone (duderroo drop off and gentle morning, so his day is successful, Aisha navigating a hospital alone, me sitting here alone, stranded while waiting for her to come back but unable to check in). I don’t have a system I can call because we don’t have a foundation. It is 100%, 50% our fault. But hey-zeus if I could have figured it out for before now, I would have. There is someone who, I know if I had just a little more time, I could and would call and my heart is already thanking her. But it’s not just having someone I trust to get duderonomy to school. It’s having someone I can call and say, “we’re going in, can I drop duderroo off at 6 am tomorrow,” knowing they hear, “I am so scared right now and don’t know what to do” and having them reply, “I can hold your walls up Jo. I’ve got you, go”. That takes time, especially for me. So, I am not throwing judgment right now or casting accusatory glares at anyone. I am accepting my share.

I am spinning, and in rereading what I have so far, I apologize. Juno Mac’s TED Talks requires its own article. And I hope I come back to it. She does an incredible job of presenting factual and impactful legal information, with energy that felt like if she had more than seventeen minutes, we would have been blasted with a force of socio-economic insight that would be world-changing.

I am spinning because while I know day surgeries are ‘a dime a dozen’ these days, they don’t all have my ‘heart’ laying on their table. A friend posted a meme yesterday, something about how grandma made it through a war. The punchline was her produce was locally sourced, labor was around the corner; she had a community. We do too and I know that. I have people texting me or wanting to chat on the phone and while it may not be the exact/complete picture I want, I have something. Just, not an ‘in an emergency’ something. The regular check-in texts make me feel very detached when I can’t catch your ‘baby shark’ drama.

I want to go back to my comment about checking in. When I interact with people, I take steps to prepare myself for an investment of time, whether it be five, ten or sixty minutes. So, when someone sends me any information my usual response is, “and how does that make you feel,” because I don’t think they’d be messaging me if they didn’t have a feeling. If I don’t have the time, I think about how it would make me feel and I respond appropriately with, “oh s*#t, that is scary – can I call you later to see how you are doing,” because we all have stuff going on and rarely have the time for someone else’s stuff. I’m not preaching. I am sharing this with you because it has given me the space to be a better friend, partner, and person in general. I will not be doing any check-ins this weekend because Aisha will be my focus. But I will also not reach out, because this is bigger for me than it is ‘for you.’ My dad was a physical guy – big voice (singing), arms splayed wide, big smile, a skier, boater, runner, biker, and taught me to do these things and then I woke up one day and it was completely different. I am sitting here watching my love, her high grey and red socks, black tights with a white splatter pattern and a maroon, grey, teal, and mustard yellow shirt and my heart and throat are doing funky things. Because I love her, and no matter what Tuesday looks like, I will only love her more.

I know conversations about ability are uncomfortable. I also recognize the levels of emotion people feel during these conversations are also uncomfortable. I love getting into uncomfortable topics, which is why I started my morning watching a video on the ethics and politics of sex-work. I had to become comfortable with physical disabilities, their total realities: the leg bag, diapers, transportation swings, really tall toilets, at a time when my body was the most alien thing to me.

I am tired now. We’ve just told duderroo the news and things feel calmer again. Thanks for being there, eh? I feel like I’ve gained the perspective I needed, and I hope it wasn’t too painful for you.

Thanks,

Jo

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