Can You Open This For Me: an ALS Anthem

09/17/2021

I would pay a lot of ransom money to spiders for them to collectively agree it's not fair to f**k with me anymore. Currently very scared of a big boy next to me on my hamper, pretty sure it can smell my fear and it knows I'm defenseless. I never had a problem with them before ALS, my boyfriend would get me to move them but now that they'd beat me in an arm wrestle they need to stay tf away from me. If any spiders are reading this I'll do whatever you say plz just don't crawl on my body thank you xo 🕷️

06/03/2021

This response bothered me and don't come for me I know people ride or die for Selby's lol it's not just them, it's every business.

My question is why can't accessibility just be the standard from the beginning instead of such an afterthought or something that may or may not get done sometime? This is a great example, this outdoor patio is brand new construction, surely including a ramp from the beginning would have been easier and more cost effective than doing a separate future reno? Am I wrong in thinking that?

It's only three steps, so why couldn't a small ramp be built INSTEAD of steps? That's literally a win-win for anybody since people who can walk can walk the ramp and people in a wheelchair will get to participate.

It should be a priority to include the disabled community, not just when it's convenient a few years from now when you get around to it. I always try to support local businesses and I'd be a very regular customer on this coffee shop patio but it's more than that, more than being a paying customer. Myself and other people with disabilities have so much to offer, our presence and existence brings value to the world. Our thoughts, opinions, conversations, energy, laughter, joy, etc. are being missed out on when accessibility isn't present. We matter, on so many levels.

We are missing out on experiences, but the world is missing out on us too.

06/01/2021

You guys think I'm so wise and mature but I still eat my noodles buttered with the sauce on the side 👶🍼 I'm not cut out for big decisions just ask my Mom how stressed I get when she asks me what shirt I want to wear for the day

03/16/2021

I never wanted to come on and bitch about places being inaccessible by wheelchair because I know it's not possible for every single place I want to go to be able to accommodate a chair but DAMN nothing is actually, truly accessible. Even if you think it is, I have a feeling that the people who assess/decide whether or not a location is accessible are fully able-bodied and not testing it with a real wheelchair. Maybe we could hire members of the disabled community to be a part of accessibility assessments, planning, renovations, etc. since right now there's very few places that are fully thought-out beyond just a ramp in the entrance. We know what we need so listen to us instead of guessing!!

I'm at the point in my disease progression that if I want to actually enjoy myself in public I need to be in a chair. It's something I think I've adjusted to well, I actually really don't mind being in one. The convenience of walking on my own? Oh yeah I miss that more than anything. But am I going to pretend it's not kind of amazing being wheeled around in a comfy seat while everyone else must 🏃🏻‍♀️exercise🏃🏻‍♀️? No. It's fun lol the lazy gal in me has adjusted just fine. The part I'm seriously struggling with is that I can't go certain places or do things just because I'm in a chair. It actually fu***ng hurts, why shouldn't I get to be a part of all this cool stuff just because my muscles aren't strong? I like fun stuff, I'm still a person who wants to be involved in the world and it really sucks to miss out on things because I can't walk.

Recently I've been researching and shopping for houseplants suitable for my room. There's lots of plant shops around but if you've been in any you may have noticed they're super full and crowded, not the clearest/widest paths to take a chair through. So I've been sure to ask in advance whether or not the spots I want to visit are wheelchair accessible inside and out. Most aren't 🙃 that's okay, but one that I'd messaged said both of their 2 locations were so I was pumped. Getting ready and going out is a ton of effort especially in the winter but I got it together to go (see excited mask selfie). We drove over, found parking, unloaded the chair, unloaded me into said chair, and went down to discover there was a welcome mat in front of the almost full step to get inside the door. I know you're probably reading this and thinking it doesn't sound like a big deal but honestly the frustration of going somewhere, being right there looking at it and not even being able to enter is so so disappointing and hurtful. It would have taken the tiniest mini ramp, that's it and it would mean the difference between me being able to participate in my life and having to turn around and leave with nothing but disappointment.

It's hard to have physical limitations. It truly sucks wanting to get out and enjoy life and having a body that holds you back. It's already hard enough so I think the able-bodied community should care just a little bit more considering they are the ones that can easily change our lives and help us live them. People in wheelchairs deserve the little bit of effort it would take to include us.

03/05/2021

To clarify things about my last post I very rarely go to the hospital that's just where my mind goes every time. Just happy to be fresh af and ready for anything!!! I think I'm still traumatized from my first ever hospital stay if I actually take an honest look back LOL 🥴 I had no idea I was being admitted or even being assessed that day and my legs were the hairiest they've ever been. I'm really not one to think or care about that stuff but I'm not talking a few prickles, I am talking a gorilla in a hospital gown with socks on. So many doctors. So much fur. So many lower body strength tests under the watchful eyes of attractive residents and neurologists. So much length 😪🦍 Never again.

03/04/2021

My thoughts after a shower before ALS: I am clean

My thoughts after a shower with ALS: now if anything happens I am ready for the hospital, their coziest best-smelling patient 💐😌🧼🚿

02/19/2021

Okay this photo just popped up on my memories from one year ago is actually a great example of my entire experience with ALS AKA taking the good with the bad.

We were on a road trip from here in Nova Scotia to Niagara falls. This room was amazing, the whirlpool bath tub was what my dreams were made of and you could actually see out the room to a view of the falls. I got in fairly easily with a little help from my boyfriend and we had a nice soak together, what could go wrong? 🥴🥴🥴🥴😅

Getting me out of this goddamn whirlpool bath took more innovation and ingenuity than either of us were prepared for. At this point I was still able to stand up from the ground but the size and shape of this tub was just making it impossible. Plus it was extremely slippery I was like a slippery catfish trying to climb a ladder. Also a bizarre side note/reality is that when I laugh I literally lose all strength. If I'm holding something and you say something funny I immediately drop it, so trying to stand up while Shawn and I were laughing at how ridiculous this was was such a disaster. Eventually we basically used towels as a pulley system and that was the last time I got in that sucker.

Was it worth it? Of course. Did I have thoughts of spending the rest of my days naked in this empty death trap? Also yes. But that's the thing with this disease that I learned quickly, you can't take a vacation away from it because it comes with. A sh*tty travel buddy for sure, but you just decide what's worth the inevitable hard moments. I'll flop around for some special memories with Shawn any day but I won't pretend it was a breeze.

Anyway, moral of this post is that adaption is key baby! What is worth suffering for? Lots 💛🛀🔑

02/05/2021

Since we just passed the 3 year "anniversary"? of my diagnosis I thought this month I could chat about my time trying to get a diagnosis and how I was feeling going through it. I'll start by acknowledging that I got extremely lucky to have great doctors and a diagnosis fairly quickly in comparison to many. It can take years to get an official diagnosis as there isn't one determining test, you basically have to rule absolutely everything else out and go from there.

For me hearing those official words from the neurologist wasn't the big, devastating, life-altering moment you'd expect. I don't think I even cried to be honest, shockingly because I am a very emotional gal lol. For me it was the period of knowing something was deeply wrong but not having an official diagnosis or answer that was the hardest part.

I had been in college for only a month or two when I first went to the doctor about my left pointer finger curling slightly, and being unable to straighten it. At this point my doctor was not overly concerned, she said muscles can tighten or act funny from lots of different deficiencies or lack of whatevers, so she told me to supplement calcium and a multivitamin and we would get some blood work done just to be sure. Within a month my finger had worsened and my right pointer finger had begun to do the same. I was writing hundreds of cue cards out a week studying my buns off, trying to stay focused and it was getting harder and harder to do them all. We were practicing typing and while everyone's times were getting faster, mine were getting just a little slower. It was so frustrating to have my hands not responding normally and trying to balance the two battling thoughts of "you're fine, no way it's something serious" and "this is fu**ed up".

I know that you should never Google your own symptoms but in the midst of waiting and testing and changing of course I did. I knew from my medical courses how many conditions exist and that it could be anything. I browsed through these and nothing resonated; not MS, not anything - until I got to amyotrophic lateral sclerosis. The second I finished reading the Mayo clinic info page I literally knew, right then and right there. My Mom was with me in the living room watching TV while this was happening and I burst into tears. When she asked me what was wrong I said "what if it's ALS" and she did her best to remind me we really don't know anything yet, that it'd be okay etc. but believe me or not I knew from that day on I had ALS, I had zero doubts about it and I just needed to hear it so everyone else would know too.

So, now I'm trying to ignore this fact and finish my first semester strong. Of course in a sick cosmic joke this is when we have to learn about neurology. I could not focus on any other disorder in this section because I knew ALS was included and I'd have to read it. There was one day at lunch when I was sitting with a few classmates who were studying. Side note: my mom's cousin lived a 45 second walk from campus and I would go there at lunch to let their pup outside and I had just gotten back from doing that. One of my friends got to the evil definition and started to say something along the lines of "I think ALS is the most horrible disease you could have because your body becomes completely paralyzed but your mind is aware of everything like you're completely trapped" etc etc. Of course she had absolutely no idea what I was thinking and going through with my health, noone did. My heart was racing so bad and I tried to get through it but I couldn't. I stood up and yelled "I have to let the dog out" so I could escape this conversation before I threw up. I basically ran down the street, smoked probably 4 ci******es in a row and cried my eyes out before pulling it together and heading back for class.

This unit was the only quiz of the semester I didn't score 100% on.

01/15/2021

A quick note (never quick, I try though)

In the beginning of my life with ALS when I thought of writing or sharing my experiences, I had just joined a few online support groups and ALS forums and quickly learned that I had no idea what ALS was like yet, I was just a person with weak hands. I felt that it would be not a full or complete expression of what is like living with the disease as I had barely progressed. It would have been too positive and I felt it might be a disservice to people who were more advanced. Then I went through a period where all of my thoughts that I was writing were extremely negative and I was just constantly frustrated so again, I didn't want to write and make people think it was all that. What I'm realizing now is that that was all so stupid and to evaluate it like that was the inauthentic part, writing about how I felt when I felt it would have been an honest look at a real journey through life with this disease. So, I really wish that I had started to sharing earlier but I decided to at least start now. I don't want to call it a blog, sometimes the thoughts I write down are literally one sentence that I feel so it will probably be the most disorganized expressions but I think it will be therapeutic to me, hopefully it could help with someone else who is facing similar challenges, and also give some insight to the rest of the world.

I think that a lot of what we consume online is perfectly organized, even social media which used to be simply updating and sharing your own life for your friends is now perfectly curated, planned content usually with a goal in mind. So maybe that's why I felt I had to have a clear vision or a plan on what to say before I said it. But that is just not real life.

The hardest part of doing anything is always getting started. I really don't know where to begin but I will just try to start opening up a bit and hopefully become more comfortable along the way.

This page is intended for me to share the ~unique~ experience of a 20-something female living with the most challenging neurological disorder, ALS. My goal is just honesty, openness, and awareness. Never pity, sadness, or negativity.