Double Shot Espresso, Please: The Daily Grind Living with SMA
Updated: May 29, 2020
So I thought that writing my first post would be the hardest part about launching my blog.
Once I took the leap of faith and published the site, I had a panicky feeling resembling something like, "Oh shoot! What have I done! Where do I go from here?!"—or what is more eloquently know as writer's block. While there certainly isn't a writers handbook on blogs (or is there?), it didn't feel right to write about "just anything." Yes, I've introduced myself but most of you still don't know my story. When I said something similar to my counselor a few years ago, she smiled and joked that maybe we needed to go on a weekend retreat!
While that obviously is unlikely, I'm going to have to come up with a different approach to sharing what my life is like with SMA. I had thought of writing about my recent trip to Palm Springs or summers at our family cottage but I think starting off with these topics would be a little misleading. While I do want to write about my adventures yet, you need a bit more context of my daily grind before I share the highlights. This way, you will be more aware of what all goes into those adventures. For example, when I go on vacation, I take my travel mug of troubles with me wherever I go. I once explained it to someone this way: You may be able to get away for the day or go on a tropical vacation to Cancun but I will never be able to escape my disability. For me, there really is no such thing as a vacation.
So, imagine I'm your barista serving you up a double shot espresso of my reality. It may be a little bitter, a little intense but after you're done, you will feel invigorated to tackle life, and not just mine but yours as well. (by the way, the pic featured is one of four paintings I did called Cuppa Jo. To see it in my online shop, click here.)
So since we are on the topic of coffee, I'll start off by sharing the fact that I can no longer eat by myself. SMA has such a slow degradation that it's sometimes hard to pinpoint exactly when it happens but this one I remember: summer of 2011. This was such a hard loss that I spent the summer in mourning. I felt like a child again, needing to be fed bite after bite. I felt frustrated. Embarrassed. Sadness. Grief. Helpless.
Now, this is not to say that I was Miss Independent before this either. Ever since I was 9 years old, I have needed assistance getting into a very specific eating position. I lean forward, prop my head up with my left hand, and tilt my head to the left. While unusual, this position helps me swallow my food better. Choking and food aspirations are common problems for people with SMA but thankfully this has not been a huge health concern for me. However, I feel self-conscious of what my eating position looks like and try to avoid eating in public unless I feel comfortable. I'm surprised I could even find a pic of what this looks like because I don't particularly like being in pictures leaning forward.
Another huge part of my daily life is resting. I rest (not nap!) 2 times a day, for about an hour and a half each time. Fatigue is a huge enemy of mine so if I have plans, I know that my day will consist of gearing up for leaving the house. It takes planning and structure to go somewhere and sometimes I wonder if it's even worth it.
Yet, if I stay home I would miss out on, well, life! My parents and I have an accessible minivan, equipped with a side-entry lift. Because I can't drive myself, my mom is often my "chauffeur" and we love to go shopping, sit on patios in the summertime, and visit greenhouses. I can only be gone from home for a max of 6 hours so we really have to be strategic of how we spend our time away. I also have quite a few doctors appointments, which eat up a lot of my days. I am currently being fitted for a new wheelchair (more details coming soon!) and we have to go to Winnipeg—a 45 min. drive each way—every few weeks for appointments.
I also need assistance bathing and toileting and even though I have had a SMA since birth, I am still working through accepting help in these areas. While I don't want to go into too much detail about it all right now, I do want to make people aware of the kinds of battles I face every day.
There are obviously other details I could write about, but I'll end this post by disclosing what has been one of the most difficult transitions yet of having a disability: going from manual transfers to using transfer lift devices.
The process started in 2014 after my mom experienced a painful bout of tendonitis. After a few months of physical therapy it was determined that she should no longer do manual lifts. Since then, we have been trying to integrate ceiling tracking into my daily care, which has taken its toll, both physically and emotionally. Each transfer takes 5-10 minutes so sometimes I spend 3 hours a day on transfers alone!! (i.e. getting in and out of bed, onto the couch for resting, washroom breaks etc.).
Since I can remember, I have been dreading this transition for several reasons. How invasive it feels. How time consuming it is. How limiting it is because it ties me up to being at home. And finally, how it looks. I was so worried that people watching would get scared off by the bulky machinery and that it would just be one more thing that makes me look weird.
So that summer, I refused to let anybody—especially my nieces and nephews—see me being transferred but one night it was inevitable. I needed to lie down. Sensing that we needed a distraction, my mom had a good idea of turning on the TV. I was so nervous as she started hooking me up with the transfer sling and to my total surprise, no one even watched!! My nephew Oliver turned around and asked what we were doing and when we said this is how I lie down now he simply said "Ok" and turned back to watching cartoons! Talk about eating some humble pie lol.
This was a huge turning point for me and while I am still incredibly anxious about how much time the transfers takes, I have become more relaxed because of the unconditional love my family has shown me. They even think it's cool, as you can tell from this video! (Important to note: this is not how I use the lift! I get put into a hammock sling and get raised and lowered with the machine. For clarity, I probably should have shown a pic of me using the tracker but this video is one of my faves!).
Taken in combination, then, all of my needs can be a pretty intense existence. I am constantly having to work through the cold hard facts that my body has extreme restrictions and yet I am aware of the abnormality that a woman nearing 20+10 needs 24/7 care. My daily life is so different than anyone else's I know and even though we might not be able to relate to one another in some areas, I still want us to be able to share in each others' joys and struggles. My hope for this blog is to establish connection, empathy, and self-awareness among you and I. While I want to yet focus on our shared experiences, you also have to be aware of the baggage that comes with SMA that is just mine. And when you do realize what my life is like, you'll be able to say cheers to celebrating life....
"Double shot Espresso ready for pickup!"
- Crissi xo