I get a fair amount of emails and messages from people wondering what my secret is, where I buy my fairy dust. They want to know how I manage to be bright and cheery when things in my life are on the stormy side.
You want to know how I always stay so positive?
You guys, there is a reason I haven’t written a new post in almost a month now, and it’s not because I’ve been off gallivanting. It’s because I’ve been in a bad mood for pretty much three weeks straight. It’s because I’ve had nothing to write beyond “I’m really bummed out and everything sucks” and I know I can keep it real here, but I like to think I’ve set a higher standard on this page than a seven word post.
I’ve just been frustrated lately. Discouraged. Defeated. And did I mention frustrated?
It started when I found out that I’m looking at a 12 to 16 month wait for a follow up appointment that was supposed to happen last fall, plus another referral that was supposed to be put through in December never actually went through. Next I learned my extended health won’t cover something because I have Ehlers-Danlos Syndrome and not arthritis. After that the government deducted from my disability payment for no clear reason. Then my car died beyond repair. There is also the issue of my most expensive medication no longer being covered and even after four hours on the phone and six retellings of the whole situation, it’s still up in the air.
Plus of course there are some new symptoms, some worsening of other symptoms and some more baffled looks from my doctors.
And I’m really struggling lately not to feel angry and let down by the healthcare system here. I hate when I feel like this because I really do believe in the idea of universal healthcare, but it’s hard when people in other countries, and actually even in other provinces across this country, don’t seem to have to fight as much and wait as long as you do. It’s even harder when they have access to services and treatments that are unavailable to you altogether.
Life has just been a little too much lately and I haven’t had the energy for anything extra so I’ve kind of been hiding out.
It’s called turtle time. At least it is now. Patent pending.
And there’s my negative story for you.
Here’s where it starts to turn around.
Before I continue, you should probably know that I have this random interest in random holidays. It’s not uncommon for me to text someone along the lines of, “Happy Day After New Year’s Day (observed – New Zealand)!” or, “FYI it’s Showa Day in Japan today.” I love learning what all these different days are about and how they came to be.
A while back I was texting with my bestie about upcoming Earth Day, except that Earth Day was auto-corrected to warty day. Kind of gross, sure, but we thought this was hilarious and so then of course we said we will have to recognize warty day, too. When Holly asked me when it should be I randomly yet officially picked May 5. I later realized this was already Cinco de Mayo (duh) and less obviously also Children’s Day in Japan, but official is official.
By the way guys, we know we’re really weird. Just go with it.
Yesterday morning, I texted Holly to wish her a Happy Warty Day, which of course is not a significant day at all except for the fact that it made us laugh. I asked her what her plans were and if we could celebrate. Thursday is often her only day off all week, and the only reason she never works on Thursday is because she volunteers overnight at the crisis line, so when she told me she also had an appointment yesterday afternoon but could pop over after, I almost said no.
All of my “don’t be a hassle on anyone” chronic illness instincts told me to just say never mind, but my “I’m having a tough time” human instincts told me that I really just needed my best friend to make things better. Remembering that my focus on the word branch this year includes reaching out even when I feel like hiding, I said yes.
So Holly drove over to my house, and since we both adore baby geese, we popped Julio (my wheelchair) into her 1998 minivan (just to give you an idea of how cool we really are), and we drove to a nearby park to see the goslings. The scenery, weather and company were perfect. Plus the goslings were fluffy, clumsy and adorable. It was the most wonderful Warty Day there ever was. It was also the only Warty Day there ever was, but still.
I don’t have a magic answer for how to stay positive, but this story is the closest thing I have to some fairy dust for you right now.
I am most certainly not full of sunshine all the time, not even close. Honestly, I don’t even think that’s healthy, let alone possible. It’s not real, and forcing it gets in the way of genuinely living it. I think you have to feel it all, the good and the bad, and I think that hope is found in spite of the bad, not by pretending it doesn’t exist.
The bad exists. I know because I live through it and so do you. Everyone does. We have no say in that. But I think maybe we’re able to live through it because of what we live for, and that we have some say in.
I live for random made up holidays that come into being because of texting typos, no matter how dermatologically unappealing their names are. I live for gushing over baby geese. I live for hanging out with Holly and Julio, and I live for delighting over the realization that even though I didn’t plan it, their names sound superb together.
I live for all sorts of tiny little things, and when I need to, I let these tiny little things become everything.
It’s not a perfect plan, but it’s all I’ve got for now. There is no perfect plan. There’s just life. Life and reality. And tiny little things that turn into bits of fairy dust.
It’s not perfect, but I’m hoping it’s enough anyway.