Intrinsic Echoes

why is it that some things just never get said?

I am the type of person who tries really hard to accept people at face value. What I mean by this is I take you as you present yourself on a day to day basis. I try not to make snap judgments, especially when I hardly know you. I know that one meeting is just one meeting. Many meetings over time are necessary for me to get a “baseline” expectation for how you and I are going to work (or not work) together. Before I decide that we won’t work, though, I’m a questioner. “I see this happening between us. I’m curious as to why this is happening? Here’s what I need…. how can we work together to do this? What do you need? Where can we find common ground to work together?” I try very hard to recognize that we all have stuff to work through. I also try hard to recognize that everyone has a place around the table if we just learn to work together. It’s why I find any sort of -ism so challenging to wrap my head around. I am very aware of my privilege, and work very hard to throw myself into someone else’s shoes when I don’t understand their point of view until I get it or at least a reasonable facsimile of understanding between us. I can’t truly understand what I haven’t lived. Compassion is my strength.

Before I was visibly disabled and a wheelchair user, I had a bunch of invisible challenges that were disabilities, and it was a huge uphill battle for recognition. I was involved in my workplace’s Disability Committee to ensure that the work I was doing made things accessible for a wide variety of visible and invisible disabilities. I was the person responsible for making sure that all the projects I touched met the accessibility standards, and improved as technology improved. Then my disabilities became, not so invisible and much more restrictive, and now that I am so very – Other. I am smacked hard in how Abelist society is to an often cruel degree, and at worst not only am I now excluded, Able bodied people think I should be grateful for the access I have. I should just accept that I am on the Fringe, and be happy with what I have. I mean seriously now that I’m in a powerchair I can’t honestly expect equal equitable access to everything – you’re a minority after all. Yes actually I do expect equal and equitable access everywhere. It’s the law and you’re supposed to be compliant by 2020 which is 4 months from now, but what do I know?

There is abelism in health care. I am constantly having to educate new PSWs because it’s like a revolving door of new people.

It’s been a terrible few weeks with muscle spasticity. It’s not charlie horses; it’s muscles so tight and hard that they sometimes feel like bone on the really bad days. No muscle in my body is left unaffected. It’s the reason I don’t sleep more than 2 hours at a time. It’s the reason I am currently not at work like I want to be. It’s also the thing I try to limit my complaining to “It’s a bad day” because I’m already doing everything I can to deal with this nonsense and there’s nothing I can do until I see another specialist in a few weeks. I’m managing it the best I can.

PSW: There’s got to be some medication you can take to fix that.

Me: I’m already at over maximum dose for one medication, and they’ve added a second and no – if medication, exercise, physio, massage and accepting PSW Care hasn’t dented it – It’s just part of MS and it sucks.

PSW: That doesn’t make sense.

Me: 🤷‍♀️ It is what it is.

PSW: Well you’ll have to find something so you can do care on your own eventually

Me: Chronic degenerative illness doesn’t work that way, and if it did you’d be out of a job. (It’s been a really bad week. My filter broke)

I cannot deny ableism because it is part of my lived reality.

Friday I went out to lunch with work colleagues that I haven’t seen in over a year partly because I was such a wreck health wise, physically and mentally last year and partly because losing my ability to work and seeing them crushed me so completely because they represented what I could no longer do. It was such a motivating, soul affirming, fun, enjoyable lunch. It also shone a big ol’ spotlight on exactly the reason I worked beyond my physical and mental capacity and still went down kicking and screaming “Please don’t take my career from me.” I forced myself out of bed each day when I should have stayed put because these people made going to work worth it – it some weird way.

I’m on LTD (long term disability). I worked in IT. When I say I loved my career, I mean I lived and breathed it. I never really worked a day in my life (except those few positions where I just didn’t fit, but I just moved positions to something I did fit.) The stress lit fires in me that made it a game – exciting, fun, challenging! There was no problem so big or obstacle too wide that I couldn’t find a solution or way around, and that was affirming. I really thought that sheer force of will could hold my broken body and mind together while I did what I loved most – this career that I had built from nothing to one where I actually felt competent and comfortable and energized – until it couldn’t because MS yelled louder and restricted my thinking in ways I didn’t think was possible, but it did it anyway. My last few years were in the most mission critical, core business highest stress possible in my organization. Even good stress, so I’ve learned, can be way too much for the MS brain – my brain.

A year later I have perspective now. I also have an idea on how I could approach my job healthier, gentler, kinder to myself and my constant dictator: MS. I know I could do things differently. Not today. I just swallowed the 2 tablets that will make me feel off and exhausted. Day 1 of 5 for this final year of Mavenclad. Next month I will have 5 more days of tablets and then I’m done and we see what happens until 2021. I joke with my nearly grown children that the pills are radioactive because the handling instructions come with decontamination protocols should they touch any surface outside the packaging. It’s extreme. I can’t take myself too seriously (in spite of the somber posts.)

My goal right now is to find a way back to my desk – somehow. I don’t know what the least financially damaging way that would be right now. I also don’t know how to convince my medical team to let me. They’ve been trying to get me to stop working for about 10 years. They won’t even entertain the notion at the moment. Their response is actually reasonable (as much as I want to stomp around and deny it.) I have to learn how to live outside of work. I have to find activities that provide counterbalance to the frenetic pace and provide enjoyment and relaxation that I can also look forward to when I am not in the office that are just as fulfilling. I haven’t done this piece yet. I also have to find room for the therapies that will support going back to work, and really be aware of how much time and energy really is available to work in an office setting again. If I go back before these are in place, I will end up right back where I am or worse, and that’s no way to live. However, the end goal of getting back into my career has me glowing with possibility, and this is something I haven’t felt in a really long time.

Rider Waite Tarot Card 10 of swords. Man lying face down on dirt with 10 swords sticking into his back. Dark ominous clouds. The horizon facing is facing east, and the sun is rising.

I am not your inspiration.
I am not someone to look up to.
I am not someone to admire.
Please stop.

When you place me on this pedestal, you separate me and stop seeing me as human and hurting. So stop seeing me as a hero and see me as struggling because today I am struggling, and need someone to see me as I really am.

Today my MS has the upper hand, and all I can really see is the mess my house is, and the spasticity present in my arms, legs, ribs, back and neck just won’t permit me to do anything about it. Hire a house keeper you say, as if that is simply the easiest thing is the world. It isn’t for me. I want to do things with my money that is more than just filling holes because my body is continuously falling apart. Spend on physiotherapy because my particular health insurance only covers it up to $500 then it’s 100% out of my pocket until it costs me $2000 and then we’ll start covering it again, but be thankful you had a career that gave you extended health coverage. Pay for massage because because that’s really what actually helps my muscles, but we’ll only cover $300 for the year (3 sessions and I have to go once a week if I want some quality of life.) Spend on medication (Once you hit $3000 out of pocket, then we will cover 100%) I’m lucky, so lucky to have extended health coverage. I guess I should also feel lucky that I have been medically cleared for the next round of Mavenclad and its $64, 000 CDN/year price tag means I’ve more than met that benchmark for a 6 month reprieve in drug expenses. I’m lucky that I can afford the health insurance, that my grit, intelligence and luck got me into my career that had such “perks.”

Let’s be realistic, though. The spasticity that saps my energy, and makes movement painful, shaky, limb fatiguing and means my house never gets picked up properly hasn’t been under any control since 2015. I’ve been in in-patient rehabilitation and I have no idea what I was supposed to get out of that. I did get, and still use an Ankle-Foot-Orthotic for foot drop when I can actually walk. My medications weren’t adjusted. I did physio there, but again nothing really changed. If it wasn’t for my neurologist trying her best with the medications she feels okay with playing with, I think I would have lost my mind by now. I have tried everything I can think of that’s safe and reasonable and not adding more to stressed finances. I haven’t mentioned the $3-5k a year that I have spent on medical grade cannabis just to get some relief, but the combination that gives relief is not without side-effects. I’m tired of masks. I know it’s better than opioid level pain relief, but opioid level pain relief is actually covered by my extended health insurance and is not taxed even through it is as reviled and vilified like THC cannabis is.

This is me face down on the mat, and one of these days I am not going to get back up. This is me at my most defeated – most un-heroic. This is me sans war paint and rallying battle cry. Will you turn your back on me? or Reach your hand out and help me off the mat ? (Psst… I will get back up this time because it’s the only thing I actually know how to do. Just please stop making me your hero.)