multiple sclerosis

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.)

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