Before I begin my post I would just like to say to all of you who think I’m a goody two shoes, you should know that I stole all these spoons off of my food trays yesterday (I get clear fluids – so a spoon for jello and a spoon for broth) and hid them in my drawer for the purpose of this picture. And to all of you who now think I’m a pretty bad ass cutlery thief, you should know that I returned all the missing spoons with my breakfast tray this morning.
And I digress…
Today is my five year spooniversary. A spoonie is someone with a chronic illness. I know I’ve mentioned it before, but in case you don’t know what the spoon theory is all about you can click here for more information. (It’s also my little cousin’s 6th birthday today so happy birthday to him!)
October 11, 2009 I woke up with what I thought was just a normal flu, and I have not had a normal or healthy day since. I’ve had good days and stretches, of course, but it’s been five years since I’ve eaten a normal meal, gone a day without nausea, gone a day without medication, and been able to just go throughout my day without having to being conscious of my health.
Last year my spooniversary was a bit of a rough day. It was a Friday, and it also happened to be the Friday of the SFU Science fall convocation, which, had everything gone as planned, would have been my convocation. Instead I was at home with a feeding tube up my nose and down my throat, and stuck in my bedroom while hooked up to 24 hour feeds. I remember thinking next year will be better! Next year on my spooniversary I will be past all this yuck. Next year I will be able to look back and see all the ways my life has improved.
This year I’m in the hospital. And I’m not going to lie to you, it’s been an exceptionally tough week. I have not been feeling well, and I’ve also been dealing with a lot of miscommunication among doctors and other staff. I haven’t felt heard or understood. All in all it’s just been incredibly frustrating, overwhelming and exhausting. It’s ‘next year’ and it’s not exactly better. And I’m not past all this yuck; I am still right in the middle of it. While I am usually full of joy and hope, I have been pretty miserable and I’ve been having a hard time mustering up positive energy.
So instead of dwelling on everything bad that has happened in the last five years, instead of focusing on the nightmare of a year I have had, and instead of thinking about all the ways I’d hoped my life would be different, I’ve decided to celebrate my spooniversary by sharing five good things about my life that have come about because I’ve been sick. One for each year!
1. I have become a really good advocate for myself. I’m a lot better now at asking for what I need and speaking honestly about how I’m feeling. Rather than put on a brave face I know that in order to have a chance at a better quality of life I have to fight for it. It’s a work in progress, but I am slowly figuring out the appropriate balance between my stubborn “I can make it on my own” side and my desperate “this illness is bigger than me” side.
2. I am am much more patient and accepting person. Being a patient requires an incredible amount of patience! Lots of the time your schedule isn’t even your own. You need to see a specialist but you can’t get an appointment for months and months. You show up for an appointment and have to wait two or three hours. You’re in the hospital and you really need to talk to your doctor so you have to stay in your room all day waiting for them to come by. And then there are the 13 hour days in ER. All that waiting is hard, especially when you’re already worn down and sick to begin with, but there is absolutely nothing you can do about it. The nice thing is that all of this waiting has made me a much more patient and accepting person in general.
3. I have met so many wonderful people and had so many meaningful connections with them. I realize that if I was going to school or working full time I would still be meeting a lot of different people and making connections with them, instead, but it’s different. It’s deeper and more honest. There has to be a lot of trust and a lot of respect on the table when you take care of a stranger, or let a stranger take care of you, and that allows for some really honest and real connections to take place.
4. I learned how to crochet! If I hadn’t been taking some time off school and been worried about getting bored, I never would have decided to learn to crochet and now I cannot even imagine what I would do if I didn’t crochet. It’s been so good for my overall well being to have a creative outlet, to have a sense of accomplishment, and to have something that makes me happy but also allows me to make others happy, as well. I’ve had to give up so many things that I loved and that gave me a purpose and an identity, and I’m so grateful that I found crochet to help make up for that loss.
5. Joy. I know I’ve talked about joy before, but I cannot say enough what a difference it can make. Finding joy doesn’t mean you’re avoiding your problems or ignoring a tough reality, it just means that you’re choosing to not let that reality break your spirit and take over your life. There is lot more hardship in my life than there was five years ago, but there is a lot more joy, too.
So there you go. Five good things have that come about from being sick for five years. Honorable mentions: I have acquired a lot of really great pajama pants, and I have a pretty sweet collection of medical supplies now!
And now it’s your turn. After all it is Thanksgiving weekend here in Canada. I’m not asking you to outright be thankful for the hard times you’ve been through or for the struggles you are currently facing, but try and think of just one good thing that has come out of it all, big or small.
And if you’re feeling really crazy share it with me in the comments below.
Happy spooniversary to me and happy Thanksgiving to you 🙂
12 thoughts on “Happy Spooniversary to me!”
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I am thankful that you decided to walk through my office at SFU a couple years ago. My life has never been the same since. I am thankful for you and the joy you spread to all around you. I am a better person…thanks to you. xoxo
Aw shucks, Darleen – thanks! You have made my (perhaps neverending) time at SFU so much better xoxo
I am a parishioner at St Clare and your mum and I often serve together. That’s how she ended up mentioning your blog recently and sharing it with me. For that I am grateful and so touched by all your blog entries. The weirdest thing is that you help people in a way you could not have imagined. Last Sunday (October 5th) I had just finished reading your day back at the hospital and was smiling at your picture when I got a phone call from a paramedic saying that my oldest son Rodrigue had an accident. Somehow, Catherine, having read about your experience and having been touched by your positive attitude I was better prepared to deal with what was happening in my life. My son had a mountain bike accident, was in terrible pain and had suffered a grade 4 laceration ( I know that you like medical terms!) on his left kidney. I spent hours at the ER and at the back of mind you were there. I remembered you writing that you tried to bring joy to the ER. I tried as well (it worked partially!).
My son will be fine and I reflected on this strange question that you quoted in one of your previous posts: why did my son need that accident/disease? Because it made him realize that he is not invincible, that life is a gift and that our life can be turned upside down in a fraction of a second. For me spending days at the hospital gave me quality time with my son who is usually either in front of a screen or with friends when not at school. I even played a card game with him which ended up in laughter because of my total incompetence!
Well Catherine, that was my bit to share with you. My husband, my kids and I keep you in our family prayer. Love
Hi Sandy – I know exactly who you are! Thank you so much for sharing you and your son’s experience with me. I am so touched that you were touched by my words, you have no idea. I’m glad your son is okay and I wish him a speedy recovery!
I think I am most grateful for the support and compassion that has been shown by my friends, family, and significant other. Although they can’t say “I understand,” their support and willingness to learn about my symptoms, triggers, and treatment has made a world of difference. They encourage me to be brave. I think it is because of them that I am able to hold a job at the moment and for that I am extremely grateful.
It does make a world of a difference! I too consider myself lucky to have friends and family that, even if they can’t fully understand, do their best to walk in my shoes. So glad you’ve got such great support 🙂
Catherine – through this all, I have learned to graciously accept help when I need it. I have also learned that there are so many incredible people in our lives that are so ready and willing to help us. Today I am especially thankful for you, for two school parents who have really been there for you and for a former student, Emily, who surprised me with a visit this morning just to simply share love. Love Mom
Catherine… normally, I believe the word amazing has been rendered meaningless due to its absolute overuse these days. However, as I sit here writing this, I’m scratching my head, but cannot possibly think of another word that better suits. You are amazing. I am amazed by your fortitude, your resilience, or positivity and your humour. Your perspective is inspiring. You are, as always, in my thoughts, and in my prayers. Happy thanksgiving to you- certainly I am thankful that you’ve chosen to share your journey through this difficulty with us through this blog. You teach us so much about how human spirit can triumph. Hang in there!
Thanks so much Miss Triveri! I hope you and your family have a wonderful Thanksgiving together.
You’re amazing my dear sister. I am so thankful for you and the joy that you bring to my life and the lives of so, so, so many people.
Thanks! You’re alright, I guess 😉