21 - Financial Support

Bob and I in my "recording studio" for the podcast version of this blog ;)

Audio available as usual here.

I also made a video trailer for this blog post! If your screen time allows, check it out below.
(written content to follow)

Part of the purpose of this specific post is to introduce the This Hat is a Helmet Patreon. This blog has turned out to be more time, energy and even financial cost than I imagined. This post still includes heartfelt and quirky storytelling about the reality of financial woes for people like me. I share my story here of lessons I'm learning about money and income support that I wish I had known sooner. If you're curious about the Patreon and want to check it out now, then you can click the link here. Otherwise, links will be found at the end of this blog post and in the sidebar navigation panel on the blog website.

And now, story time.

I make a point to wear my sunglasses every time I go to appointments for social services. I've gone to a few of these appointments to learn what support programs are available, if I'm eligible and how to apply. I'm currently looking into services for people with disabilities that offer income support, as well as help finding and keeping a job. I haven’t yet had too much success and for some of the programs, I’ve just started the process. However it's likely when I do start to receive benefits, they won't cover or provide everything I need. And so I continue to navigate the system and consider my options.

I wear my sunglasses to these appointments for two reasons. The first is simply because I have light sensitivity. Bright or average lighting can pain me like staring at the sun. I don't just have this problem outdoors in the sunlight, though. In fact, I think it's worse indoors under those brutal office florescent lights. I don't mind wearing my sunglasses indoors (I tell people I'm practicing for when I become famous). But the other reason I make a point to wear my sunglasses to these appointments is more inconspicuous…

I do it so that the person who’s meeting me can't see my eyes reddening and welling up with tears.

I don’t full on cry in these appointments. Still, I don't think there's anything wrong with breaking down into tears. Indeed as a health care provider myself, a number of my previous patients and clients have cried in front of me. I have no judgement - their life has been turned around. I’ve never been bothered by it and I've always had a tissue box at the ready. So being a health care provider myself, it's very humbling for me to accept that in this situation I am the patient and I am the client.

I think the only thing that holds me back from full out bawling in these appointments is that I can distract myself by thinking about it as a “professional learning experience.” I take note of how the service is delivered. I consider observations from this experience that I can apply to future work with my own patients and clients. I previously worked quite a bit in program planning. During these appointments, I can get into evaluation mode. I think about things I've learned in my past jobs that could help improve the very service I myself receive. Now, I don't share these reflections in the appointment with my service provider. In that moment, it's not beneficial for them nor myself. 

The appointment must remain focused on the pressing issue of my waning welfare.

When the appointment is coming to a close and after asking whatever questions I may have, what I feel like I want to do most is to tell my story. This blog is evidence that I enjoy and maybe even have a knack for storytelling. And having this platform, you may be thinking “so then, why do you need to tell your story elsewhere?” For me, when I was working in healthcare, I can truly say that it was my patients’ stories that made me want to do things differently - their stories are what inspired me to improve. And so, even though I'm there to help myself, there's that program development and evaluation side of me that wants to drop the seed of my story in case it grows into a better program for others like me in the future. I mean, that's the altruistic way of looking at it. But also, I know that telling your story is very therapeutic. So at the end of the appointment, when I'm planting the seeds of my story, one of the lines that often slips out is this:

“You don't ever think that things like this in life are ever going to happen to you. I never thought I would ever be in this situation.”

When growing up as kids we're often asked “what do you want to be when you grow up?” I actually have historical documentation of my answer to this question. Growing up I had this sort of portfolio. At the end of every school year I would put in it representations of my best work - from unidentifiable kid craft projects to stories about our family dog. I would also write in answers to the questions provided. Who were your friends this year? What was your favourite class? And yep, what do you want to be when you grow up? For most years I'm pretty sure the most common answer to this last question was teacher, though the most interesting was what I wrote at five years old, after finishing kindergarten. 

The answer that year was “I want to be a rockstar like Jem.”

For those of you who are unfamiliar, Jem and the Holograms was a cartoon show from my childhood. It was about a group of women who never gave up trying to save the orphanage they ran by raising money through rock concerts and impeccable 80s fashion. They were aided by a sci-fi computer character that generated holographic disguises onto the main character to create her alter ego. The show has been both credited and questioned as good role modelling for young girls. That’s the problem with going back to watch the show as an adult - I was happy to see a diverse cast of strong women working together to lead their own company, advance their own projects and take charge of their challenges. I also realized that in every episode the women are put into peril and are saved by the male protagonist, who at the same time is allowed to cheat on the woman protagonist with her own alter ego, Jem… one rather problematic aspect. Regardless of this, I lack my own sci-fi computer friend as well as the chops to sing that soundtrack - it seems it would be truly outrageous for me to ever grow up to be Jem.

I'm not sure if any kids today have similar grade school portfolios or quirky aspirations for their future. It's probable that more goes into prepping high school students for choosing colleges, courses and careers with job fairs, counsellors and career assessments. But I don't think at any point in this reflection does anyone ever say “when I grow up, I want to be given a disability.” I doubt anyone thinks “when I graduate high school, I'm going to try for a chronic illness.” I would think it rare that a career assessment would reveal someone to be best suited for unemployment or scoring high for a future struggling to navigate income support services. In other words, I don't believe anyone is truly prepared for situations like this in life.

So maybe it's obvious for me to say that I never thought I would find myself in this situation. But for some reason, I still feel it needs to be said.

I did try really hard to keep working. For the first two years of this PCS, I did not give up work. I did cut back and I did take time off, but I was still recklessly pushing through when I should have been resting. I wanted to be self-sufficient. I was blatantly aware that I didn't have benefits or coverage for disability to fall back on. Work gave me something to do, something to focus on and provided me some income. But what it didn't give me was a chance to recover. Over those two years the number of hours I was able to work per week kept going down. I had enough setbacks to lead to an inevitable burnout, leaving me completely debilitated for months.

I always thought that I should try to work as long as I could. I thought when I did stop, I would have employment insurance to fall back on. But by the time of my burnout, I had been working too few hours per week to qualify for employment insurance. In other words, I was wrong to think I always had access to EI. This came as a devastating shock to me. I didn't realize there was a minimum amount of hours you needed to have worked in the past year to qualify for this insurance. Plus, the online application process was so painful. Literally. All that screen time triggered a whole bunch of symptoms. I have gotten so mad thinking about how I should have just given up on work sooner - I shouldn't have tried so hard to be self-sufficient. But with a broken brain, I was unable to realize how unwell I truly was.

Denied by EI, I then went to apply for social assistance. This was another lengthy online process that was followed up by a phone call asking all the same questions. With a very basic phone plan, this call surpassed my allowed minutes that month and actually cost me. And the result? After an additional in-person meeting going over all the same stuff, I discovered that I didn't qualify for that either. This time last year I still had in my bank account in Winnipeg money in RRSPs. In order to qualify for social assistance, your total assets have to be below quite a low limit. My RRSPs put me over that limit. So the last time I went home to Winnipeg, I withdrew my RRSPs.

When I left the bank in Winnipeg that day, wearing my sunglasses, I cried.

I knew my RRSPs would be subject to tax. But I was upset to discover that this tax would be deducted immediately instead of at income tax time like I had assumed. Plus, the amount deducted was nearly one third of my money. Although I am grateful to have had that money as backup, I again was shocked at my lack of knowledge around how money works. I was left with far fewer funds than I anticipated. I felt stupid. But my tears reflected more my devastation at seeing my RRSP account empty. It felt like I was seeing my future, hopes, dreams and welfare cash out as well.

I'm now applying for the province’s government disability income support program. I have yet to try for this one as other PCS survivors in a support group I had attended were having a hard time getting it. A caseworker I met encouraged me to apply nonetheless. Like most of these programs and services, it's not an easy process. During my first in-person appointment I had to review and sign five different forms - not a painless task with a throbbing discombobulated brain. And this is just one step of many. There are more forms for me and my doctor to fill out. But paperwork aside, there is also the emotional taxation. Despite the fact that as a health care provider I know better than to think this way, it’s still hard for me to not feel like applying for this is a symbol of me failing to take care of myself. But I have a long time to work through those untrue and shameful thoughts and feelings - it will be 4 to 6 months before I find out whether my application is even successful.

The stress is mounting as I watch the funds in my bank account progressively vacate. Every small little thing that makes this difficult now feels like an enormous hurdle.

I'll say it again, I never thought I would be in this situation. Unable to get a job for so long, unsure of how much I can work without impairing my recovery again, paying out of pocket for medications and therapy, sad and frustrated for my dog who has been wearing a ‘cone of shame’ for months now due to on again/off again eye ulcers and allergies… Three-and-a-half years out from the initial injury and I am still having symptoms up and down, unpredictably.

I know this all makes me sound in peril, like Jem and the Holograms found themselves in each episode of my favourite 80s cartoon show. I may not want or need a male protagonist to save me, but I do want support to take charge with the strength and leadership of the women in that show to keep moving forward. Maybe I did grow up to be like Jem after all - I have yet to give up and I do have hope for my cause.

I just embarked on a government funded employment support program that helps people with disabilities find and keep work. They're not a placement agency so it's a “we work as hard as you do” model. But I'm already motivated and trying. I just need help to figure out what it is I can do, connect with employers who offer that and then work with employers should I need accommodation. This program offers that.

And then there's this blog/podcast. This is work too. I know other health care providers have read this blog and have passed it on to others. I've received messages from others with PCS to thank me for this work. I'm connecting as many people as I can with the limited resources I have. And just like at the end of my social services appointments, telling my story here is therapeutic and is hopefully planting the seed for others to grow their capacity to assist and to accommodate others like me.

So if you'd like to support the work I am doing here I'd be more than grateful.

A friend of mine has graciously helped me set up a Patreon (it's too much extra screen time for me to do alone). Your contribution to the Patreon helps cover the cost of my Soundcloud account. This keeps the information and the stories here accessible to PCS survivors who also have screen time issues. Your support also helps me to keep spending time and energy on this mutually beneficial blog, while keeping my welfare afloat.

So if you've ever learned anything from this blog; if anything here has ever made you smile; if you've ever related to, seen yourself or someone you know in any of these stories, please consider supporting me to keep it going for others who may not be able to.

For whatever support you can give me, know that my eyes will redden and well up with tears, but this will be paired with a smile on my face - no sunglasses required.

Best in brain health for all,

- Krystal

Thank you for reading. To check out the Patreon, you can click here.