Mavenclad

Am I Glowing? Mavenclad Year 2 Day 1

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.

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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.)

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.