Being a Junior ‘Spoonie’
By Jasmine Gailer
I recently read about The Spoon Theory and what it is to be a ‘spoonie’. It describes what it’s like to live with chronic illness and thus is the perfect tool for explaining chronic illness to people who are trying to understand it. The original spoonie, a sufferer of Lupus developed the concept over lunch with her friend. Her friend asked her to explain what it was like to have Lupus…really explain it. What’s it like to live with it? How does it feel?
Her answer involved spoons, believe it or not. As they sat across from each other at lunch, she reached for whatever was nearby. She handed her friend a bunch of spoons and told her she would lose one spoon for every imaginary daily activity she completed. She explained how carefully her friend would need to make choices, because the spoons were limited and once they were gone they were gone. She related it to having chronic illness and a life filled with constant choices: ‘Can I cook dinner for myself or will that use up too much of my limited energy? Do I have enough energy to go to work today, or to clean the house?’ Her friend played the game and before long seemed to be truly grasping what her friend’s life was like for the first time.
Since then it appears to be helping people all over the world. The hashtag #spoonie is spreading and it’s allowing people with chronic illness to express themselves accurately. It saves spoonies the burden of explaining their illness and experiences in depth. A simple “Sorry people I will be staying home this Halloween #spoonie” will suffice.
As a 5 year cancer survivor left with a minor disability in my right leg from surgery, I jumped on the #spoonie wagon immediately. After spending the last five years with a limp and a titanium hinge sitting where my knee joint once did, I feel like I’m entitled to class myself as a ‘junior level spoonie’. The choices I make are not based on energy and sickness anymore, but they sure do affect the way I live my life. My first tweet read, “when ppl invite me on a walk I ask, ‘are their any hills?’ #notlazy”.
The ‘Cancer Card’ is a big deal among my cancer patient and survivor peer group; the permission to say “no” or “this is too hard” is a right that I believe is earned by anyone who has been dealt that dreaded diagnosis. But lately I find my friends and loved ones are starting to scoff at my comments about having a disability. Granted, most of the time I say it in jest, attempting to get out of climbing a ladder or any chores that require a lot of bending. I joke, but as with most jokes there is truth behind them. I genuinely don’t feel comfortable climbing, bending or doing any manual task that could risk me falling, stumbling or experiencing pain. The problem is people have gone from saying, “oh that’s right, no you shouldn’t do this, I’ll find another task for you” to “pfft you can’t keep playing the cancer card your whole life!”
So I’m glad to have come across the spoon theory, because it’s about time my people had a refresher on what it’s like to live not only as a cancer survivor but also with a disability (no matter how minor). To start with, the endless possibilities that my life once held are not so endless anymore. I actually feel like they’ve been cut right in half. Skipping….can’t do. Hip Hop dancing…can’t. Becoming a professional rower…out of the question now (ok that last one may not have been a real possibility but I was told once that I had a natural talent for it).
But onto the serious stuff: I can no longer dream about hiking the trail of Machu Pichu. I can’t even run, let alone play netball, ever again (I was good at netball, and I loved it). When my colleague says, “hey I’ve organised paintball for our corporate fun day,” my heart sinks and I know that I’ll have a terrible time because I can’t run away from the dreaded paint gun or chase anyone. I'll lose by a long-shot, and that's not fun at all.
Oh and the decisions! I get nervous when it rains if I’m on a slippery surface and my knee and hip ache more so I have to decide whether getting out and about is worthwhile. More often than not, a drink at the pub with friends or three hours standing on a mate’s veranda just isn’t worth the pain. If I choose to go to a music gig or concert I am choosing to be in agony approximately 30 minutes into the first set. So you guessed it, I no longer get out much. It’s just not worth the pain.
And what about for the future? This plays on my mind every day. How long will my titanium hinge last? The surgeons estimated 10 years. With each physical activity I’m wearing it down and reducing it’s lifespan. When I eventually have children (providing my ovaries do their job since chemo affected them) I know that walking around on my unstable and weak knee will be difficult with an added 10kg of baby weight. I’m nervous about how I will take care of a toddler when I can’t chase after him/her if they’re in danger. I can’t squat down and talk to them at their level so I think I will spend a lot of time on the floor.
Every day, as a junior spoonie is filled with more decisions and considerations than before. I guess it’s a bit like when you become a parent; there’s suddenly way more to think about. On the plus side I am certainly more organised (where it counts); there’s no last minute dash to the airport gates these days. On the other hand I am also far more relaxed in general because on the days when unforeseen circumstances (peak hour traffic that I forget exists) gets in the way, I know there’s not much I can do but go with it. I can’t run to where I need to be so I just chill, park the car and have a nice stroll.
I guess I just wanted to remind people that being a spoonie or playing the Cancer Card aren’t cop-outs. People don’t choose to have an illness or disability and we don’t want to miss out on anything, even the tedious manual tasks. I’ll always joke with my friends about my disability and ‘gumby’ leg, but it will continue to be coupled with just a small pang of sadness. I’d give anything for a fully functional, flexible, agile body that can climb ladders to clean gutters and push a pram up a big hill and take an untrained Doberman for a walk.
So when you go read more about The Spoon Theory, which I know you will, have a think about how many of the decisions you make in life are dependent on your physical health. Would you head out to the Valley on Saturday in that super cute dress if you found it difficult to walk or if the weather easily made you sick or uncomfortable? Would you squeeze onto a crowded dance floor with a dodgy ankle or lowered immune system? Maybe you’re a spoonie like me, whether you consider yourself a full-blown spoonie or not, and tonight you just can’t wait to get home to your safe, warm home.
#spoonie #spooniehopefullynotforlife #cancercard