Happy Disabiliday – A Letter from A Canadian CRPS Friend
This Disabiliday blog was originally featured on Pain Matter‘s website. It was submitted to us by Paula to share with our wonderful #TheTuesdayBurn community. We hope this helps inspire all those living with disabilities, especially CRPS/RSD.
“You may remember Paula Orecklin, the inspirational Canadian CRPS patient whom I wrote about in yesterday’s blog post:
Let’s Talk To An Inspirational Young Canadian Woman, Paula Orecklin, About CRPS, Sativex, Physiotherapy and Neuroplasticity
(There are additional References and Links at the end of this blog post.)
This week, Paula sent me a beautiful letter to share with all of you (see below). Paula’s letter contains a very important message for everyone, on behalf of all people living with disabilities including chronic pain. I feel delighted and honoured that Paula decided to share her inspiring letter and beautiful photos with my Pain Matters Blog (as well as any other media that Paula chooses). Upon reading Paula’s letter, I thought to myself, “Paula’s idea to start a ‘Disabiliday‘ tradition for patients whose lives are challenged by disability and pain is fabulous! In fact, any day, whether it is April 1 or otherwise, is a great day to celebrate people who face adversities and obstacles due to disability including pain, and to also be grateful for our own blessings.”
Quoting from Paula’s her own words written to all of you from the bottom of her beautiful, caring and generous heart:
“This past Saturday, April 1, 2017, I held the world’s newest disability holiday – Disabiliday. I just entirely made up a holiday. I figure someone has to have started every other celebration, so why can’t I do the same? Last year, I had my 15th anniversary of having Complex Regional Pain Syndrome, a severe chronic pain disease. With such a large milestone, I knew I could either get very depressed, or make something positive out of it. It wasn’t something I could just ignore. Instead, I chose to make a celebration out of it. I hadn’t just been in pain for 15 years – I was in pain for 15 years and was still going. It became my Disabiliday.
The event turned out to be so positive and wonderful that I decided to hold a second one this year. I ended up making more progress this past year than I ever had, in terms of function and ability. I wanted to celebrate that as much as anything – that I’ve been in pain for 16 years and am now going somewhere. I don’t really know where yet, but I figure I have another year to figure that out.
I think Disabiliday could also be relevant to other people with disabilities. When you’re disabled, you can often feel isolated, or like you’re not having the same kind of lifetime milestones other people have. Maybe you can’t move out and have a housewarming, or maybe you can’t have a long term relationship with engagement and marriage and babies. Of course, plenty of people with disabilities do just those things and I’d never discount them or their lives – but I, at least where I am right now, don’t feel like I’m able or ready for them. And even birthdays can feel like you aren’t where you should be in life, especially compared to people around you.
So I wanted to do something new and different. I wanted something that fit where I am in life, where I am emotionally. And thus, Disabiliday. A day to celebrate that despite the amount of pain I’m in, despite the limitations my disease has enforced, I still am. I still have worth. I still have a presence in people’s lives. I still am going. Surrounding myself with the support structure I’ve been so lucky and honoured to have found in my life, I was able to sit back and take in just how many people love and care about me. Without them, I would never have gotten through so many years of pain. They’ve made the time worth it.
Disabiliday is a way of reinforcing my place in life. The place in my life, and in my family and friends’ lives. Emotionally and psychologically, all of the normally invisible ways people care were made evident. It might seem silly to just make up a holiday out of nothing but a terrible pun my friend came up with to have a Disabilitea Party that I later expanded because if I’m going to make up a celebration I might as well get a full day out of it, but the meaning really is there. And it was a lot of fun too. I got my hair and makeup done at Sephora and Mario’s Salon (now Aura Polo Park) respectively last year and felt amazing once I was all made up. This year I got my hair highlighted, trimmed, and makeup all done at Aura Garden City. It’s superficial to some extent, but I felt so much better once finished. It’s an external thing, of course, but that doesn’t mean it doesn’t matter.
Last year we went to Sam Po Dim Sum and also introduced all of my non-Jewish Winnipegger friends to the deliciousness that is a shmoo torte from Gunn’s Bakery. It’s this layered angel food and whipped cream confirmation that’s North End of Winnipeg Jewishyear I upped my game with a wonderful dinner at Kildonan Park’s Prairie’s Edge restaurant and a cane cake from Dolce Bake Shop. I’ve used two canes for quite a few years now (when I wasn’t in a wheelchair), and I’m finally, finally starting to walk on my own. In fact, I made a great entrance to my party by walking in. That alone made the night amazing.
But I wanted to step it up. I went to this awesome bakery (I recommend the chocolate cupcakes with pistachio buttercream icing) and had the pastry chef make a custom cake for me- a replica of one of my canes. And man, did slicing that thing up feel good!
Other highlights of this year’s Disabiliday party included a featured guest, my physiotherapist Maria Pawlyshyn of Movement360 Inc. She is a huge part of why I’ve made so much progress this past year. Working with her, I’m doing better than I ever have since developing Complex Regional Pain Syndrome. Other features included a dinosaur balloon- a DisabliT-rex of course (I hate myself for these puns just as much as you do) – and a truly stunning purse my mom and I designed and she made for the event (see top photo). We’ve made a lot of purses over the years, but this one has to be one of the best. Just really gorgeous. The writing on the front of it is my handwriting.
We also filmed the Disabiliday parties for a documentary Dr. George Fulford of the University of Winnipeg and I have been filming for a few years now, with the assistance of Steven Mellor for sound. Originally meant to be the first of a series of five minute videos of young adults with disabilities, this project has ended up capturing the huge amount of progress I’ve made over the past couple years. I was at my worst, nearly entirely wheelchair bound, when we started this project and I’ve made such huge gains. To actually walk on my own – I never expected ever to do that again in my life.
In other bragging about things news, my wonderful friends got me the most amazing sets of rings for a Disabiliday present. This isn’t quite as materialistic as you might think. For many years now, I’ve developed open sores and wounds all over my body. My doctors think that with the amount of pain I’m in, always, the skin has just sort of gotten very weak and opens up into wounds. I don’t do anything to create them, I’d like to explain – they just open up without any influence or action on my part. They eventually close up but leave scars. Even though the scars eventually start to fade, it doesn’t help because more new wounds have already opened up. To detract attention from all of my wounds, I wear lots of rings (and wear makeup) to both cover up wounds on my fingers and to attract attention away from wounds on the rest of me. My friends know this, and so rings really do mean a lot to me. Plus they are adorable and I totally love them too.
So Disabiliday does really have some meaning. One one level, I realize how weird – and how self-important – it is to make up your own holiday and expect people to celebrate it. On another hand, this matters to me, and my friends honestly do support it. If it makes me feel better, if it doesn’t harm anyone else…why not? Maybe a lot of people – if they were to ever even hear about it – will think me stuck up or even that I’m celebrating being a victim of my disease, but I can’t help that. All I can do is lay out my reasoning here and hope maybe other people might understand. That’s really all anyone can ever do, really.
Finally, I want to thank Prairie’s Edge for hosting us, Dolche Bake Shop for a delicious cane, and Aura Garden City for totally making me over. And I really want to thank my best friend, Eryn Schor, for not only organizing both of my Disabiliday events, but actually sticking around for the better part of five hours as I got all made up. Now there is a truly loyal friend! She means so much to me and has been by my side since we met in elementary school. Without her, these events would never have happened. Thanks also go to Dr. George Fulford for filming the whole event – and for filming my life over the past few years, and to Steven Mellor on sound. Dealing with that boom mike was not easy!
And lastly, thanks to my parents. My dad was unable to be in town for the event, so we just got him on Skype on a phone to take some family photos. With my parents, all of my friends, and my health care providers, with all of their love, care, support, understanding, work, and through their thought, research, and education, I can truly say that despite the amount of pain I’m in, the past 16 years have been entirely worth it.
I am certain that most of you will be equally touched by Paula Orecklin’s letter just as I am!
Sabina Walker, Pain Matters Blogger
PS Are there any thoughts on Paula’s idea of a ‘Disabiliday‘ tradition from the rest of you in ‘Pain Matters Blog Reader-Land?’
FURTHER REFERENCES AND LINKS ON PAULA ORECKLIN, CRPS PATIENT:
(2A) CRPS Video on CRPS by PARC (a CRPS website)
(2B) This blog post also includes details and links to a video/DVD called:
Living a Life in Pain – The Story of RSD/CRPS (by Sarah Panas, film maker):
This video is also accompanied by a 5-minute trailer: