I am NOT Your Hero

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.)

I Got Lost for almost a Year

Image Description: Orange Cornish Rex Cat Staring with wide clear green eyes at camera. Only face and shoulders are visible. Instagram link to my cat Dobby because he’s just lovely.

I’ve been lost in my head for another year.  Trying to articulate this need to share my experience in the hopes that somebody out there can use it to fuel their own stories and life. It’s difficult to build a following when my own voice is being strangled by fear. Fear of what the internet has become. I’ve been online since the very beginning of the Internet as a place beyond education and research to something social. It has changed to something where it appears that only extremists, the intolerably opinionated for the sake of being right instead of being understood are the only voices adding the fray. It’s become a place of intolerance instead of attempting to understand the views of others without necessarily aiming to change the other person. Maybe I was really lucky early on to have an initially fun, radical, and supportive introduction, and that’s why my shock at the divisiveness that seems to be everywhere now. The predominant emotions being anger, fear and hopelessness. We’re becoming so self-protective. It feels like inclusion and connectedness is becoming harder to achieve. That the haves are bitter that have-nots being it from diability, to poverty, to exclusion on prohibited grounds of gender and race for dare asking to be included. I’ve seen more than my fair share of people screaming “Why does the majority have to spend money/time accommodating the embittered few?” And so it’s added one more strangling hand to my throat and hands typing away at this keyboard in from of me.

Who am I to want to reach out? Why do I think I matter enough to add my voice to the already crowded, noisy angry din that’s already so loud, and so blind and so snarly that I’m not even going to be heard to begin with?

Because I am more than what’s happened to me.

Because I know in the deep recesses of my soul that finding a way through is my gift.

Because the only way I get through is by believing going through all of this is useful somehow.

Because I still have a voice even if it’s small.

Because I am not an inherently angry person, and I can listen to divisive opinions, and have wild conversations with people without judgement. Listening doesn’t mean acceptance. Discussion doesn’t mean my opinion will change especially when the topic is something that hurts others. Finding the commonality and starting there builds reconciliation and trust.

Because sitting with hard emotions and hard content again doesn’t mean acceptance, but it does lay a foundation to trusting that no matter what comes up we’re stronger by acknowledging, talking about the reality, and finding ways to change

That all change comes from working with people where they are and knowing that my gifts still exist even though MS is turning my body into something that is unrecognizable to the spirit still living in it.

Am I back? I don’t know. I just know that my silence is becoming a prison. I just don’t know where I want to go from here. I can’t say that this is my rising. It is simply that I have to be greater than my fear, so I press publish now to reclaim my voice out here.

Edited for clarity June 14, 2019

A Former Able Body Can’t Stay Silent

I’ve been waiting for the spark that could possibly bring my words back to this space here on the Internet. I’ve been trying to figure out what I wanted to say as means of a re-introduction to blogging.  What is my intent for this space? Who do I want to be in a world of competing egos? Does this even make me a competitor when the last thing I really want is another competition and what I crave is actual conversation and a chance to try and understand differing views without name calling or anger? How do I build that? I don’t have an answer to any of these things. I keep coming back to “Start where you’re at, and just start.”

So today my re-introduction to this space is to begin again where I’m at. Today I am frustrated, angry and that’s being fueled by an exhaustion caused in part by Multiple Sclerosis,  inflamed by Major Depressive Disorder, and made all the more fun by Generalized Anxiety Disorder that clouds my reason when I’m just trying to be a reasonable human being getting on with this thing we call living. I’m also in the midst of a pretty powerful new “chemo-light” treatment called Mavenclad for MS. It’s sucked any remaining energy I had so I feel like an exposed raw nerve all day every day because I don’t have energy at all for anything extra. I try to take care of my fellow person – whether I know you or not if you’re somewhere in my sphere while I’m out and about you’ve been seen and acknowledge by me as someone should things suddenly go sideways you’re on my list of people I will go out of my way to help because like me you’re a person worthy of the same life and liberties I am. I just see a human. Always have always will.

I remember what I was like when I was a free-wheeling able bodied person. I also know that I was raised that community comes first and we’re only as strong as the weakest amongst us – I don’t say this is a bad way. I was raised to be aware of the people who struggle to do the very things I take for granted, and to help or offer assistance when I could, and above all protect those who need protecting.  Before I had a name for the things that were falling apart for me, I made it my duty to become personally aware of the challenges faced in modern society for those of us who had challenges with mobility, sight, hearing, intellectual processing difference, so that I could dismantle my own biases and hidden discrimination that I didn’t know I had until I took the time to look at myself.

Before disability became so very real in my world, I joined committees raising awareness, and changing the way the workplace viewed disability and accommodated so vibrant brains could still contribute their wealth of knowledge and experience while managing challenges that shouldn’t be barriers to working. I opened my eyes, and I am far from perfect. I was willing to work on my own incorrect thinking and taught beliefs that are outdated or never should have been dated to begin with. I have to be part of society too.

Now that I’m faced with worsening disability.  I struggled to get back to work from a MS flare that landed me as a part-time powerchair user in 2015-2016.  I managed to get back to full time employment for one year before MS and ultimately a wicked flare of Major Depressive Disorder that almost cost me everything put me back into Long-term Disability again.  I don’t know if I will get back to work right now.

I can occasionally walk without a hint of the spasticity issues that wrack my body around my house in the morning, and on rare days into the afternoon, but the zombie shuffle becomes normal after that, and then the balance issues that follow makes walking around my house unsafe… I could take pictures of the bruises my stubbornness at giving up walking has caused. Out in the real world, if my husband is with me, you might see me with my walker if it’s a short trip or frequent stops because manhandling the travel scooter is such a pain in the ass – even though my husband never complains.  I can see how much of an impact that my changing disability is having on those I love, and it rips my heart to shreds. I try to minimize my impact often to my own detriment. There have been a few scary moments where I’ve nearly fallen with my walker and I am only thankful that sheer force of will kept me upright. I know the day is coming when leaving the safety of the chair isn’t going to be an option whether I have the strength for walking or not.  It’s okay. I was adamant about the musts for my chair before I even sat in it.  There are things I dislike after spending two years driving it around, but those should be changed shortly, again increasing disability is making a lot of hardware upgrades necessary.

I do love and appreciate my chair more and more.   I do not love trying to navigate an impossibly abelist world, and I’m having to fight my mental illnesses harder and harder to not become a shut-in hermit.

People on feet are dangerous. People on feet are incredibly oblivious to their surroundings. I also realize that the traumas I’ve sustained in my lifetime have left me far more vigilant about other people than most. I’m hyper aware at all times of a lot of things that other people don’t seem to be. I try to account for that when making these statements.  People on feet are so unpredictable that I’m usually an anxious wreck vowing never to leave my house again to get groceries or shop for anything.

The number of people who seem to think my chair is nimble and can dodge people on feet is crazy. I drive reasonably for the conditions. I’m not a speed demon, and I respect the rules of being a responsible pedestrian as best I can to the conditions I’m faced with.  Powerchairs are not nimble.  They are tanks. They cannot stop on a dime, they cannot dodge quickly. In fact I’ve played with the controls on mine to see what is possible – and sorry to say there’s an awful lot of programming behind the scenes to control for tremors and shakes that prevent the machine from being responsive to light changes of direction. I’ve tried, so it now is up to you able-walking feet people.  You can’t play chicken with me. I will win and you will get hurt because guess what your legs are far more able than my chair to move to the other side of the sidewalk.  I follow traffic laws. I am always on the proper side of my given route at all times. If you are walking towards me in my lane… chances are you need to move over.  Except when I’m clearly in the wrong it’s usually because of a hole, or a heaved sidewalk that will damage my chair, or I have to be slightly over to left more because if my chair falls off the sidewalk me +600 pounds of chair would be a world of hurt for an extra inch of needed space to be safe.

Don’t yell at me if you’re a phone Zombie and I rings bells and firmly state for for to get your head out of your phone and pay attention to where you are walking.  I’m paying attention. Chances are I still can’t dodge you due to prevailing pedestrian traffic around me if I’m calling to you to be present to what you are doing. You’re walking in a world… your phone can wait. Really it can. I have one. I spend way more time on it than I should. When I’m engaged in getting from point A to point B – I am not on it. Or if I have to take the call using a device that keeps my hands free and one ear listening to what’s going around me,  and my eyes fully engaged with what’s happening around me – at all times.  If I can’t be safe to myself or others, I find a safe out of the way location to pull off and deal with whatever panic the phone has brought in that moment. I don’t just stop my chair in the flow traffic without warning.

This isn’t even about how inaccessible everything is from stupid racks in the middle of store aisles making it so narrow I can’t get through without damaging store displays. Or drug stores that think wheelchair users don’t want to wear makeup (Pharma Plus and Shopper’s Drugmart are the worst offenders for being inaccessible most of the time) and the make up aisles are full of bins, and pop-up displays that make it impassible for feet walking folks with carts. I will move displays, and make messes on days that I’ve had enough of not being considered in layout designs…. mostly I’ve just stopped shopping altogether but I miss it. I really do. I used to love shopping for my family. Now it’s a chore that ends in frustration and tears.) I am loud and appreciative of any store that is wide open with ample space to shop and be independent on my own until I need assistance.  If I can’t even wheel in the door it’s a hard pass. Look at your doorways mall stores… look hard…. you have no idea the hundreds of dollars you’re not making just by making it impossible for people like me. I’m fortunate, for now, I’m one of the lucky ones that still has income to speak of. That may end in the future. I will face that when it comes.  It’s actually not that difficult for basic inclusiveness.  Have stairs  that mean people can’t get in without a ramp? Buy a bloody ramp and have a bell to ring or a way to get it deployed. One organization I deal with has this. They’re in an old part of town the buildings weren’t built in a time where accessibility was demanded. I let them know when I intend to be there, and they have someone watch for me and they happily bring  the ramp out and I get to do business with a company that’s making an effort, and I probably spend way more than I usually would just because they’ve made a plan to include me in their business model.

A little bit of care and consideration, thought and intention and the world could be far more enabling for all.