Sunday, 18 March 2018

Stephen Hawking died on Wednesday and his passing brought to light a lot of the issues surrounding how people with disabilities are portrayed and talked about in the media.

Instead of rewriting columns about the use of language and Stephen Hawking, I'm linking to two articles that I thought were really well written about his passing and the coverage surrounding it. I hope you take a moment to read them!

"The fact of the matter is that Stephen did all of his amazing work with his disability — not in spite of it. To erase that fact of his life as we mourn the loss of him in our world is to ignore part of who he was simply because it wasn’t something that could be easily understood. He did not need to be free of his disability and wheelchair to change the world, so why must he be freed of it now that he has passed on?" 
From TeenVogue: Saying Stephen Hawking Is "Free" From His Wheelchair Is Ableist

"As a disabled person, however, I'm also troubled by the way the media has framed his life and his passing. Among the run-of-the-mill condolences I saw on social media, there were a few that bothered me, including a meme depicting the spirit of Mr. Hawking walking out of his wheelchair, as if he were now free of it.
As a fellow wheelchair user, these kinds of depictions, while perhaps well-intentioned, sting. I wouldn’t want someone to erase my identity as a disabled person in my death, as it is a huge intrinsic part of who I am and how I see the world around me. It is unfair that in order for us to celebrate his life, we feel it necessary to remove a part of who Stephen Hawking was: a disabled man."

Sunday, 11 March 2018

This cold has been endless. It got significantly worse last Sunday night when I woke up at 2am with a fever. It was low grade but I was so uncomfortable and shaking so much. Isaiah piled all the blankets on me until my feet were warm but the rest of my body felt like an ice block. He kept promising that I was actually quite warm to touch and turning the heat up to 80 degrees still wasn't going to help.

My only fever experience has been with chemotherapy so of course I was panicking. I thought for sure I had the flu so then I started spiralling with "I could die from this. Wouldn't that be unfortunate? I don't want to die from the stupid flu. Tell my family I love them!"

Isaiah told me I was being ridiculous and to take some Tylenol. I would have gone to the emergency department if it weren't a 20 minute drive away. After the Tylenol kicked in, I stopped shaking and managed to get a bit of restless sleep. In the morning I called my CF team who prescribe me two antibiotics and weren't that concerned.

The fever really knocked me out for almost two days. I spent Monday sleeping and then Tuesday trying to get some energy back. I think in the end, I overdid it last weekend when I thought I was finally over this cold and had maybe exercised a bit too hard.

I'm still nervous it's going to happen again but this time my cough does feel almost gone. The antibiotics have kicked in so I am more tired because of that but overall, I feel an improvement.

It's weeks like this where I'm thankful that I only work one day a week. A lot of people ask when I'm going to move to more hours but I'm quite happy where I am. The truth is, I will probably never be able to have a full time, or even a true part time job. Even when I'm not sick, I need to be able to spend days relaxing when I'm not feeling 100%. I also need to spend a lot of time exercising so that I can keep these lungs healthy for as long as possible.

The upside of this cold is that I've been staying inside and working on some craft projects. I've been practicing my calligraphy, finished knitting a hat for Isaiah, and made myself a prototype apron! I bought fabric in Hawaii to make an apron but thought I should make a trial one first with fabric I care less about.

Sunday, 25 February 2018

Urg I'm sick. And since I don't want to ramble on about how terrible I feel and how I have very limited energy, here is an abstract beach card I made. I was practicing top stitching as well as layering fabrics without worrying about being precise. It was quite fun.

Sunday, 18 February 2018

Camp Koru

I'm going back to Maui the end of April!! Woohoo! I heard from the cancer camp this week and then immediately booked my ticket. 

After a bit of delay from the the camp doctor who wanted to check in with my respirologist about me traveling post-lung transplant, I got the acceptance email this week! I guess the follow up was fair, it's probably not something the doctor gets a lot on the application forms so wanted a second opinion. My doctor was fine with it, she just wants me to take antibiotics with me which I should be doing when I travel anyway.

This time I'm going without Isaiah (No family allowed! Even if they had cancer too!) and to hang out with a bunch of other young adults who also had cancer. And to suppose to learn how to surf!

The purpose of Camp Koru is:

"...a camp to help cancer survivors diagnosed between 18-39 to find healing and renewal through outdoor experiences in the ocean and mountains." I'm doing the "ocean" part with their surf & standup paddling camp. 

It's a total hippie camp where everyone has a "power name" which is:

  • Your power name can’t be any form of your real name (first or last)
  • Your power name can’t be anything you’ve ever had or been called before
  • Think of something that is less of a nickname, and more of a POWER name.
It's probably a way to get people to let go of their past and just be in the present with a powerful name! I have enough trouble with real names and faces that having to learn a bunch of words in Hawaiian that mean various things like "strong" and "river" (I'm just assuming this will be what people choose) is going to be hard. Or maybe it'll be easier. I do need to come up with something that I can recognize when someone is trying to engage me in conversation. It would be bad to forget your power name. 

The camp is all-inclusive and free (minus the flight) which is the other great part and mostly why I decided I should go. Adventure camps seem to be a popular thing post-cancer in the States. I guess it's part of the recreation therapy philosophy which is that meaningful and enjoyable activity will help with emotional and physical recovery. No complaints from me! 

Here is more information about the camp if you're interested or know someone else who might be interested.

Sunday, 11 February 2018

Cooking: Popcorn!

I learned how to pop popcorn this week! I'm sure this will be super obvious to a lot of people but I've always bought the pre-bagged stuff or used an air popper.

I used the recipe from the first website that popped up with I googled "stovetop popcorn" and it worked like a charm. Find it here. But it's pretty straightforward.

Add oil.
Add three tester kernels.
When they pop, remove from heat and add the rest of the kernels.
Return to heat and shake pot occasionally.
Take off heat when the popping has stopped.
Add butter and salt and enjoy.

I think our cast iron dutch oven helped keep everything from burning. I just kept shaking it all the time and took it off the heat when the popping slowed down/stopped. I kept opening the cover to check on it and then popcorn flew everywhere.

Generic popping corn.
Coated the bottom of the pan and added three tester kernels.
Magic is happening inside.
Tonight I tried the paper bag/microwave method. I looked up how to do it and the article made me paranoid the bag was going to catch on fire.

I was paranoid it would burn so I stopped it quite early so there were a lot of kernels unpopped. But it was very quick and easy and just as tasty.

Cover kernels with a bit of oil and salt (I probably used too much oil).
Put in bag.
Microwave until right before the bag catches on fire (or the popping stops)
Add butter and salt and eat!

Popped and didn't catch on fire!