End of a chapter. Also, pictures of pottery.

My pottery class is over. Boo! I'll still probably go to a few drop in classes in June but my three hour class, no waiting in line days are over. I'm going to try and time it so that I can have pieces ready for the end of June but it's not a big deal if they aren't as someone from my class offered to pick up and hold anything for me. 

It's sad that pottery is over, not just because I always have more ideas of fun objects to make, but because it's like the end of a chapter in my life. A chapter that I'm clearly pleased is closing but this is the one area that I'll miss. I'm going to be hunting for a studio back in Cumberland County where I can play with clay.

Taking pottery classes was one of the best decisions I've ever made. It's probably my recreation therapy training coming out here but I can honestly say that taking the classes was like medicine for my mental health. It kept me focused on something other than the long wait. In fact, when I was signed up for a class, I was okay with not getting the call during those 8 weeks as doing so would've interrupted my pottery.

I spent a lot of time between classes looking up ideas, watching how-to videos, and dreaming of glaze combinations. Having a weekly commitment outside of the hospital was also a huge bonus. I could talk to people about non-medical topics, it didn't feel like all the small talk I did was medically focused. Whereas at physio, all everyone talked about was their health or someone elses health. That's fine for a few minutes but gets old for me pretty quickly. Lastly, working with the clay probably also helped my somewhat physically.

I'm so thankful I convinced Amy to go to a drop in class with me when she first visited a year and half ago when I completely fell in love with it. There is something about getting your hands dirty and being creative that is incredibly therapeutic. Hurry for recreation as therapy!

The bowl is red for now but post-kiln it should be yellow!

My garlic press vase, post-kiln the green will turn clear and it should be red underneath. *fingers crossed*

Book discussion: Smoke Gets in Your Eyes.

Over the weekend I finished a book by my favourite mortician (ok, the only mortician I follow) who does the Ask the Mortician videos, Caitlin Doughty. Her book is called Smoke Gets in Your Eyes: And Other Lessons from the Crematory and is as blunt and straightforward as the videos.

I must say, while I enjoyed the book, I think youtube videos and long-form essays are more of her forte. The book was something like an autobiography with some discussion of death rituals and description/critique of the modern death industry. It was a bit all over the place and I wish there was more about the death rituals from different cultures and less about her failed romance whose inclusion in the book made no sense.

The plus side is much like the Ask a Mortician videos, it didn't hold anything back and explains very honestly how cremation, embalming, and all other death related activities work. Stuff that we should be talking about more but don't because no one likes to talk about death. I did learn that embalmers sometimes have to resort to superglue to keep peoples' mouths closed during a viewing if the person doesn't have strong enough gums to hold the wiring in place.

If you didn't like that fun fact, you probably shouldn't read this book. It can get quite heavy despite the fairly humorous tone (not literally, it's a short book) and I found I could only read a chapter or two at a time before having to switch to a light silly romance book. There was quite the disparity reading about how babies are cremated to about a woman trying to find herself in the woods and meeting Mr. Right.

I noticed while reading the book that I haven't been searching for death related material as much as I did pre-transplant. It's probably because my death no longer seems as emanate so it's not something I think about as much overall. Or possibly it's because I got a lot of my death-related issues out of the way pre-transplant and considering how close I came, feel more at peace about the idea of dying. As weird as it sounds, learning how a body decomposes and all the other random facts, really helped me come to terms with dying. That said, I'm still fascinated by death rituals and the things the funeral industry sometimes does to hide the reality of death.

I think the best and most universal part of the book was at the end (if you don't think you can handle reading the book, maybe just read the last chapter of the book at the book store sometime) when she discussed death denial in our culture. She argued that while most of us want to live forever, death is often the reason for a lot of creativity and is a motivator for a lot of our actions.

Regarding accepting death, Doughty says:

"Accepting death doesn't mean you won't be devastated when someone you love dies. It means you will be able to focus your grief, unburdened by bigger existential questions like 'why do people die?' and 'why is this happening to me?' Death isn't happening to you. Death is happening to all of us. A culture that denies death is a barrier to achieving a good death." 

She continues on but you get the idea. The only way we can get to a point where talking about death and dying is no longer taboo, is to accept our own mortality and not live in denial about the fact that we will all one day die. A good death would be one that celebrates life while grieving passing. One that doesn't try to deny that it happens but embraces that it's as natural as birth and deserves the same amount of respect and dignity.

Inspiring...the unplanned second part.

Today was pretty quiet. I guess everyone already learned all they needed to about me. I also slept better last night which was a bit of a relief.

My aunt suggested that I watch the TED talk by Stella Young as it is basically what I said in my “Inspiration” blog post. I had previously watched a clip of it but it’s definitely worth watching the entire thing. It’s basically my entire "Inspiration" rant only much better said.

One thing though, at the end of her talk, she talked for a minute about the whole “the only disability is a bad attitude” vibe that comes from a lot of places. People are told that they just need a positive attitude to get through. It sounds ridiculous to anyone who has ever struggled with anything that all they needed to do is ‘be positive and the problem will be solved!’

However, people do say it. Like yesterday, when a nurse who was taking my blood told me that I just needed a positive attitude to get my transplant. I wish I could say that it was the first time I’ve been told that. I didn’t feel comfortable getting into a debate with her as she was poking a needle in my arm so I simply said something about how it’s hard to have a positive attitude every day for 11 months.

To which she replied, that when she thinks she is going to have a bad day, she has a bad day. So the reverse must be true. Also, that when she is running late for work, she’ll send out positive universe vibes to get green lights and sometimes it works.

How do you respond to that? 1) Waiting for a lung transplant is not the same as the 50/50 chance that you’ll get a green light on your way to work. 2) What happens when I send out good vibes and the family of the person who is dying sends out good vibes? Do they cancel out? Does the person with the most people caring about them win? And 3) (and the one that I find most frustrating), if I just need to send out a positive attitude, than clearly I’m at fault for not having a lung transplant because if only I was more positive. And obviously anyone who has ever died from some horrible disease was just not being uplifting enough to please the cosmos.

It’s not my fault. Shit happens. Stop pushing your positive attitude theory on me.
 

Anyway…I wasn’t planning on spending much time on this post this evening but it seems my ranting got out of my control. If you have 10 minutes, check out this video. It’s well worth your time. You'll learn much more than that cat video you were going to watch afterward.  

Inspiring?

What does it mean to be inspiring? It's a word that gets thrown around so often that I feel like it's pretty much lost all meaning. 

I've been thinking about this a lot recently after listening to several podcasts that touched on the topic (brace yourself for some rambling). Each podcast could have probably spawned their own blog post but since they're all on inspiration, I thought I would mention them all together.

A summation of the podcasts:  

1) A CBC interview with a man who is visually impaired and is planning a kayak trip down the Colorado river. The entire interview is worth listening too but my favorite quote was when he said (roughly quoting), "People always overuse the word inspiration. A blind person walks across the street and doesn't get hit by a car, and someone's like 'wow that's inspiring.' I think it's meant well and nothing against anybody but when you're disabled, you feel like sometimes people are using that word to separate themselves from you. They're saying 'you're the inspirational one', and you're over there and I'm over here. I think this idea of living a no barriers life is not just delegated to people with disabilities, we all have this capability to overcome our barriers. "

2) The Stuff You Missed in History Class (SYMIHC): Deaf President Now podcast. While the actual podcast is the story of Deaf President Now (a student protest in 1988 at Gallaudet University), the hosts prefaced the podcast by talking about how hard it is to find stories about people with disabilities where they are doing their own thing and aren't being portrayed as overcoming a barrier inspirationally for the benefit of those without disabilities. 

This is basically what they said (again, roughly quoting): "It's incredibly hard to find a story about a person with disability or disability rights without the inspirational overtone. There is a whole thread about overcoming hardship but it's presented in a way where it's an uplifting heartwarming tale told to non-disabled people about a disabled person. Some stories seem very positive initially until you stop to think about it and realize that it sets up people with disabilities as 'other' and having to overcome things to be equal and that's not how it should be. We have nothing wrong with inspirational stories, such as the story of the first woman to become a M.D. in the USA. It was a hugely inspirational event but today, telling a story about a woman going to medical school would be a pretty boring story about a woman going to medical school. But if 'we' (meaning the media or public) told a story about a blind doctor in 1849, the tone would be fairly similar to the story of a blind doctor in 2014. We want stories that break the pattern of setting up people with disabilities as inspirations for others and focus instead of people with their own agency and identity."

3) The BBC disability podcast (the 'inspiring discussion' starts at minute 38:00 minutes) where they interviewed a man with cerebral palsy who wrote a show about how people call him inspiring for dressing himself or having a job. He finds this super annoying (as one would). The entire discussion was filled with sarcasm which I thoroughly enjoyed. They were pretty rough on inspirational speakers but one woman went a little easier on people by saying "there is a huge difference between someone saying, 'you made me think about how I live my life and how I can do things differently' versus a patronizing, 'I can't believe you can go to the toilet by yourself, how inspirational.'" They ended the conversation by naming the person who inspires them and most of them named someone with a disability. 

The main theme of the three discussions was that there is a huge tendency to see people with disabilities as ‘other’ and it’s very easy for their stories to turn into an inspirational saga about how the person learned to live a ‘normal’ life. I think this happens more to people with people with developmental disabilities (autism, down syndrome, etc.) or physical impairments (visual impairments, quadriplegic, etc.) and less with chronic illness but to be honest, I’ve still had my share of being 'inspirational' for mundane things.

Sure, people with disabilities may have moments of inspiration for others, as may people without disabilities. The problem is when a person becomes inspiring just because they have a disability. Personally, I have no problem if people say David and I inspired them to start cycling again because we cycled across Canada. Because yes, that was pretty awesome. And really hard at times. We had to find all of our determination and self-motivation for it to happen which I still use to inspire myself at physio by telling myself things like "you cycled across the country, you can handle five more minutes on this stationary bike" or “what’s the matter with this stationary bike, at least there aren’t mosquitos biting your eyelids.” So sure, if you want to call me inspiring for that, I will accept it.  

What I have trouble accepting is being ‘inspiring’ while I'm living my day-to-day life. Honestly, all I do most of the time between physio and doctor appointments is read and watch TV. That is not inspiring. That's boring. And a bit depressing. I don’t feel as though I’m doing anything different than anyone else would in my situation. In fact I probably do less because some people who are listed go give talks on the importance of organ donation while I sit at home at read about fantasy druid worlds. 

I realize that the other side of my 'stop-calling-everyone-with-a-disability-inspirational' argument is that people have a right to find inspiration wherever then can or want. And if someone finds the fact that I read a lot of books while I wait for a lung transplant, I guess they can go ahead. As long as it's not patronizing like the woman in the 3rd podcast stated, there is really no harm in it. The problem happens when the person with a disability exists solely for the inspiration of others. No one wants to exist to be a life lesson, or to teach people how to love and live life to the fullest or whatever. People have a right to be their own person with their own goals and own successes that may have nothing to do with you whatsoever. 

I think I'm just so tired of the endless Upworthy stories on Facebook and elsewhere about someone who is an inspiration to us all because they got married 'despite' having an amputation or started a business 'despite' having Down syndrome. Who would have thought those things are possible!? Those stories are only there to make other people feel good about themselves. I still really like what the host said from the SYMIHC podcast about how the first woman who became a doctor was inspiring. She broke down barriers and dealt with misogyny and was probably socially ostracized. Now no one thinks twice about female doctors. So why isn't it the same for people with disabilities?

In conclusion: I'm not saying that we should stop being inspired by things. I just want stories about people with disabilities to change to be more about the actual person and less about them overcoming something. So the next time you hear one of the 'inspiring person with disability stories, think about the person. Does the story give them autonomy? Do they exist for reasons other than making non-disabled people feel good? And most importantly, are they truly doing something inspiring or are they just living their lives as human beings?

An explanation of how it sometimes feels to have CF.

I spent the evening tonight talking with Amy on the phone about the shittyness of CF. Well, I more listened while she ranted. She had a check up appointment today that didn't go as well as hoped. And there is nothing more discouraging than going into an appointment feeling fine only to be told that your lungs are actually worse despite all your healthy eating, exercising, and never skipping an aerosol mask. It's beyond frustrating. The worst part is when no one can tell you why you’re lungs are crapping out. You wish you had pneumonia because at least then you could point and say ‘that is the reason my lungs are worse.’ Then you feel weird about wishing you had pneumonia.  

The trying so hard and experiencing failure makes everything seem pointless. What’s the point in exercising when it doesn’t seem to be helping your lungs anyway? Why should you spend two hours each day on four aerosol masks when it doesn’t help? That is the thing with having CF, there are never any victories. Never a moment to say "yes, I’ve worked hard and put all my energy into treatment and self-care and now the disease will not bother me again."

It doesn’t happen. There is never a break. It can wear anyone down. You sometimes get angry at people who say ‘hope you get better soon’ (then immediately feel bad because they were just being nice) because you know while you may recover from a certain infection, you will never be able to recover to where you were 5 years or a year ago.

To put it intp the battle terms that everyone loves so much: You never get to beat or fight off the disease. You only experience losses until you have nothing left to lose. You never get a win. You might sometimes gain back some lost ground but it will never last forever. There is never a chance that it will one day it will be defeated and you’ll come out the victor on the other side*.

I'm not sure if people without CF or a debilitating disease would ever have a similar experience. Sure, everyone has disappointment and goals that they fail to accomplish. But have that happen over and over again and it's a bit like having CF. I wish I had a brilliant metaphor but the only thing I can think of is that it’s like standing at the top of a descending escalator, not wanting to go down. So you keep climbing the steps but it's moving too fast for you to make any progress. You try as hard as you can but you never make any gain. And then you try to sprint up it but you can’t keep that speed for very long and then you end up losing ground because you have no more energy. Or you stop for one second and suddenly you're lung function has dropped 10%....okay, maybe I'm bad with metaphors. I think you get the idea.

It just. never. stops.

The feeling of hopelessness can be unbelievably overwhelming. So overwhelming that it's sometimes hard to shake off or crawl out from underneath. It takes time to recover from a decline and there are only so many times you can put on a positive smile in the face of horrible news. You crawl out of it and shake it off, but it’s damn hard sometimes. Eventually you reach a point of acceptance that it’s out of your control. That it will happen despite your best efforts. And while you may not be able to ‘win’, you can sure as hell delay the loss for as long as possible.  

….I think that's the end of my rant. I've probably already posted one like this before but after talking to Amy, I needed to rant again. Because it's hard. If you didn't already realize it, having CF sucks.

 

*I just wanted to add as an aside, that while having a lung transplant may rid my lungs of CF and may seem like I have 'defeated CF', I still have the disease in the rest of my body. Also, transplants are hard and avoiding rejection is it’s own never ending process with little or no reward. Getting a lung transplant is just replacing the inevitable doom of CF to the-just-as-cheery-inevitable doom of organ rejection. It’s not a victory so much as trading one thing that will almost-definitely kill you right now with something that will almost-definitely kill you in the future.

Smokers and Transplant

Last week at physio, there was a morning that was fairly quiet, and the three other couples on my on my side of the room all bonded over their health woes (there were two newbies and one post-transplant). I had sadly forgotten my headphones so I had no choice but to listen to their conversation to help pass the time. I learned that all of them use to be smokers, how their health declined at a shockingly rapid rate, and that they all felt better before they had to quit smoking (except for the post-transplant person). One of them seemed to imply that smoking withdrawal was the reason they felt so bad instead of their crappy lungs.

I had conflicted feelings listening to the conversation. Part of me wanted to say that they only had themselves to blame for smoking all those years and that they had no right to complain when I was there because of something I have no control over. And how dare they get lungs before me. But then I felt bad for feeling that way because 1) Just because someone has it worse doesn't mean the person doesn't have a right to complain about their problems; 2) I'm sure the people who smoked have already beat themselves up over it and don't need more piling on from strangers; and 3) just because my disease is genetic, doesn't mean that I don't also have some control over my health.

Obviously I didn't yell at anyone but it made me realize how easy it is to blame people for their health problems. It's easy to say that people who smoke who get lung cancer or copd only have themselves to blame. That they should have just not smoked in the first place and they would be fine. But it's never that easy. I have no experience but I imagine that people don't start smoking thinking that one day they hope it ruins their health and leads to a lung transplant. They start because they need a coping mechanism for their stressors and nicotine happens to be the best option. Unfortunately for the people at physio, they were the ones who ended up being susceptible to pulmonary fibrosis or cancer while their friends or family who smoke will live to be 94 with no health problems.

But someone doesn't have to have to smoke or have lung cancer to feel like they are to blame for their health problems. There is part of me that feels like it's my fault for requiring a lung transplant at this point in my life. While I grew up knowing that I would most likely always need a transplant, I feel as though I could have done more to stay healthy. If only I walked more instead of taking the bus. I only I spent my vacations relaxing instead of madly travelling. If only I didn’t stop running or had been more vigilant about doing my second aerosol mask. And on and on. It’s hard to stop.

I've been trying reach some conclusion about why I want to yell at smokers who are on the transplant list with me but I have yet to have an epiphany. Really, it doesn't really matter how we all got to this point, we're all in it together now.