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.

Book Review: The Immortal Life of Henrietta Lacks by Rebecca Skloot

I just finished reading The Immortal Life of Henrietta Lacks by Rebecca Skloot and I thought it was interesting enough to warrant a blog book review.  

The synopsis: 

 “Henrietta Lacks, as HeLa, is known to present-day scientists for her cells from cervical cancer. She was a poor Southern tobacco farmer…, yet her cells were taken without her knowledge and still live decades after her death…HeLa cells were vital for developing the polio vaccine; uncovered secrets of cancer, viruses, and the atom bomb’s effects; helped lead to important advances like in vitro fertilization, cloning, and gene mapping; and have been bought and sold by the billions. Yet Henrietta Lacks was buried in an unmarked grave.

The journey starts in the “colored” ward of Johns Hopkins Hospital in the 1950s...Today are stark white laboratories with freezers full of HeLa cells, East Baltimore children and grandchildren live in obscurity, see no profits, and feel violated. The dark history of experimentation on African Americans helped lead to the birth of bioethics, and legal battles over whether we control the stuff we are made of.”

For non-fiction haters, while the book is non-fiction, it isn’t technical or heavy on the science despite being a science themed. But for the non-fiction lovers, if you hate when authors inject themselves into the story, this book is not for you. It is very much the story of the journalist discovering and telling the story of Henrietta Lacks and family. 

The book isn’t perfect, I would have liked some topics to have been discussed more and I would agree with the critics who say that while she claims to have better intentions than all the other journalists, it may have been that she was just the pushiest or contacted them at the right time when they wanted to tell their story. However, all that aside, it’s a great book. 

Although the entire book is fascinating (it’s not just about Henrietta; it’s also about her family, abuse, education, privacy, mental health and treatment, and racial tensions), I thought the last section about whether we have a right to our cells once they leave our body was the most interesting. 

While doctors now require full consent to take any tissue samples, once the consent is given, we relinquish control of how that tissue is used in the future. Hospitals keep most (if not all) of the samples taken and they can be held for an indefinite amount of time. It may seem pointless but it was helpful in 2009 when tissue samples from people who died in the 1918 flu pandemic were used to aid the development of the H1N1 vaccine. Though it seems that many institutions have started requiring consent for research, there is no law stating that it’s necessary.

And really, most people don’t have a problem with having their tissue used for research but when money gets involved, it can get a little trickier. Right now, if you have a tissue sample taken and it shows that you have cells that are immune to the common cold, which then leads to someone developing a cure for the common cold, which is sold for 10 billion dollars, you’re share of that profit would be zero dollars. The only way to get around that would be to be aware that you have the magical cells that everyone wants and demand your cut of the profits ahead of time (the book discusses one man who did just that). 

Another problem that people have is if the tissue is being used for research you might not ethically support. If you didn’t support vampires, you would not appreciate your blood being used to support research into developing a line of super-human-vampires. 

All the information in the book was US based, but it seems it is no different in Canada. In June this year, a Canadian court ruled “thathuman tissue removed from the body for diagnostic medical tests is personalproperty that belongs to the hospital…” They were basing their ruling on the US court case so unless anyone knows different, I’m going to assume that Canada does not have any better tissue-right laws than the US. 

On the flip side of the argument, researchers need tissue samples to work with and it makes people more comfortable giving samples if they know they’ll be anonymous. Right now when you give a sample, it would take a lot of work for the researcher to be able to figure out the original source. The woman at pottery class who works on CF samples told me she can’t even know the age of person despite the fact that she is doing research on aging and infection for those with CF.

So if you like a good story about a family who was wronged by the medical community, a healthy discussion about medical ethics, along with a heart breaking side-story of the institutionalization of African Americans with mental health conditions in the 50s, this book is for you.

If you want to learn a bit more about Heneritta Lacks but don't want to read the book or even if you did read the book, Radiolab did a segment on the HeLa cells as part of their Famous Tumors episode. The segment is 10 minutes long and well worth you're time.

Book review: "The Etiquette of Illness" by Susan Halpern

I finally got around to reading The Etiquiette of Illness: What to say when you can't find the words by Susan Halpern. It's a book I've been meaning to read since last May ever since I read about it in the End of Your Life Book Club by Will Schwalbe.

It was okay but I honestly thought it was going to be better. I'm not really sure what I was expecting but Schwalbe described it as providing helpful tips for talking to his mother about cancer so I guess I was expecting more of a 'how to'-type advice book. Instead, it was really a collection of very short (a paragraph or two, sometimes a sentence) stories. The upside of that format was that it was incredibly easy to read in spite of the heavy subject matter. The downside was that I could only read a chapter or two before tiring of so many short stories. I'm not a lover of short stories so reading so many at one time was a bit much for me.

I also found it was quite cancer focused. Halpern was a counselor for people with serious illnesses and had cancer herself it makes sense but I feel like a better variety of stories could have been helpful. There was one chapter about chronic illness but again, that was from the point of view of someone who got cancer and now has to realize that they have a chronic illness.

Maybe it's because I've been in the hospital system for so long or because I'm the one who is ill but I found like all of the advice from the book could be boiled down into one thing: communicate with each other (but that would be a really short book). Communication is important for all when it comes to illness. Not just for friends/ family but also for the person with the illness. Keep an open communication and everyones' stress will be reduced. 

For example, no one is going to know if you want people around when your hospitalized if you don't tell anyone.  Or as the friend/family member, you don't know if the person wants a visit if you don't ask. Or if you're worried the person will die without having their fiances or will in order, tell them. Everyone will be a lot happier if there is communication on both sides.

Good communication will help overcome a lot of the fears about saying the wrong thing (I covered most of that in my tips for talking to people who are going through a rough time post). Honestly, if you don't know what to say to the person, just say 'I don't know what to say but I want to be here for you.'

One story that stuck with me was someone who didn't tell anyone, not one person, about their cancer. Their reasoning was that they didn't want anyone to worry. Since this is the complete opposite of my coping strategy of talking to everyone about all my concerns, I don't understand that desire at all. In the end, the person regretted their decision, not just because they found the process isolating, but because it also meant they had to celebrate their successes in silence. I guess after a certain point it would be even harder to announce to your family that "Surprise! Today is my 1 year remission date of the cancer I didn't tell you I had, must have slipped my mind while I was having surgery. Celebrate with me and don't ask any questions!"

Point of the story: talk to those in your support circle. Don't have a strong support circle? Find a good support group in person or online. Tell people about your fears and concerns and wishes. It's as important for both the person with the illness and as it is for the family/friends.

The only other tip that I thought was helpful from a family/friend side, is the importance of adding 'don't feel you need to respond' when sending sympathies or a 'thinking of you' message. As a friend/family, the desire to express that you're thinking of the person is valid and welcomed but it can also be incredibly overwhelming to the a person with the illness to feel as though they need to respond to all the messages. Most people who sent sympathies or well wishes cards or emails don't usually expect a response but telling the person that it's okay not to respond could help relieve some stress.

I guess the book might help some people who don't have much experience with illness or the medical system. Or for people who love reading about other peoples problems. Or for people who love short stories. Or if you have nothing else to read. If you are one of those people, this book is for you.

Books books books!

The books made it to Halifax and Petty. Yay!!

Aaaand all the extras have sold. Already. Before they could actually be removed from the box. The support I'm getting is outstanding!

I will be doing another order this week so if you missed the first order, let me know and I'll make sure a copy is held for you. Don't miss your chance to get your hands on what all the cool kids will be reading this winter!

Here is another poster from my ad campaign!

E-version is actually available now! Just click on the 'I wrote a book!' tab to download your copy today!

The Fault in Our Stars by John Green: Some musings.

Two nights ago I read The Fault in Our Stars by John Green as the trailer was released and my cousin convinced me it was worth the read. She was right. Everyone should read it.

The basic synopsis is that two teenagers fall in love after meeting at a cancer support group and bond over a book about a girl dying from cancer.

If spoilers bother you, you should probably stop reading (although a study showed that people actually enjoy stories more when they know the ending so I'm actually enhancing your experience).

Besides some minor medical points that I had issues with (ie I can't imagine her oxygen flow only being at 2L), it was really good. It deals with illness, death, and dying in an way that doesn't talk down to you or make it all be part of some grand scheme in the end. There was also an abundance of sarcasm which I really enjoyed.

Here were some of the things I really related to:

1) The teens talk about how awesome good nurses are and how horrible the bad ones can be. It's true. Nothing beats having a nurse that treats you like a human being and listens when you explain how you like things. Nothing is worse than a nurse who refuses to see you more than their job or who gives you pity stares and makes comments about how depressing your situation is. Ummm, thanks?

2) Being teenagers, they hate any sort of motivational saying or cliche that tends to provide more comfort to those saying the phrase than those hearing it. Even as a non-teenager, I also hate those cliches. I understand people say them because they have no idea what else to say and I get that. I have said those cliches to people in the past because I also have no idea what to say. But can't we all come up with something better? I have ranted about this in the past.

3) The boy wanted his life to be part of a greater purpose. He had a hard time recognizing that most people live and die without ever getting their '15 minutes of fame'. This is probably getting harder for people as everything now is about leaving a legacy behind (which I've ranted about in other posts) or having a greater meaning to one's life than simply being a good person. In the end, he came to the conclusion that often in our attempt to leave a mark on the world, we end up leaving scars instead and maybe leaving the world as you found it is good enough. I loved that sentiment and appreciated that in the end, the author did not make his life as part of a great plan.
So much of literature writes characters with disabilities as a) having their purpose in life being to inspire everyone else, b) a saint-like figure, or c) the villain. It is always refreshing when a person with a disability is written having a regularly complicated life filled with video games and sarcasm. 

4) The boy made his friends write their eulogies while he was still alive which I think is a brilliant idea. They called it a 'pre-funeral' and he got to actually hear all the nice things that people said about him. I think everyone should get this chance. There is the problem of never actually knowing when you are actually going to die so you could have a pre-funeral and then go on living for another year. It is impossible to know when one's 'last good day' is going to be so maybe we need to annually start telling people great things about each other on the off chance they will die that year. I think talking about death would would help people recognize how much they have impacted other peoples' lives. It might also make people more accepting of their mortality which I believe is a good thing. We really need to stop pretending that death will never happen to us.

5) When the boy died, the girl got really angry when everyone he had gone to middle school with posted sympathies on his fb wall and commented about stuff he enjoyed then but had hated when he died. She felt it was insincere considering they hadn't made any attempt to keep in touch after he withdrew from school. I agree that typing on a facebook wall wishing someone is 'up in heaven playing basketball' when a) the person no longer enjoyed basketball and b) didn't believe in a literal heaven seems like a dick move. However,  people need an outlet to express sympathies and if a facebook wall is how we do it now, that's fine. Also, people drift apart and you remember people by how you knew them in that moment. It would be unfair to think that everyone you ever knew will know your preferences when you die. There is a fine line of remembering the person as they were and remembering them how you wanted them to be.

I feel like I could ramble on about the book for much longer but that is all I'm going to say for now. In conclusion, if you have a few hours and want to spend it on a really good book, read this one.

The books have arrived!

[Gmail and affiliates (ie, this blog) was down for most of the day in case anyone was having trouble viewing the blog. Send your angry letters to Google!]

In other news...the books have arrived!!! Well, the Toronto ones anyway. I was so excited to get the slip in the mail but then disappointment when I saw that I had to pick them up at the actual post office instead of the front desk (I though that was why I had a doorman?). Apparently I owed 'taxes' and whatnot. Stupid taxes and whatnot.

It was super thrilling to actually have the books, even though going to get them was annoying thanks to the crazy cold wind that has overtaken the city today (yes I took the car but it was still cold). I know the e-version is up and the book has technically been done for a month or so but it seems more real when I have the final version in my hands. For some reason a .doc file isn't quite as satisfying (not that I'm anti-e-books, it's just different when it's mine).

When I started writing the book, my personal deadline was 'before my transplant'. Seeing as that is a unknown date, after Oct, I had no more time to procrastinate as I could have gotten the call any minute. So now that the book is here, I can be comfortable having my transplant knowing I made my deadline (not that I would have turned down the call on the grounds of 'my book isn't ready yet').   

So if you live in the Toronto area and ordered a book, they are here! Hopefully the Halifax and Petitcodiac will arrive next week!

Amazon does not have fancy packaging.

Yay!!!!

So I wrote a book...

One of the projects I've been working on during my free time is writing the story of when my brother David and I cycled across Canada. I've always wanted to write out our adventure for myself as it seems like something that should be better documented. I didn't know where to start as writing 'we cycled, we cooked supper, we pitched the tent, we slept' 86 times would be incredibly boring so I started out writing one story I thought was interesting per province. 

Then I realized I had other funny traveling stories that I thought should be written down and kept writing until I had something that resembled a book. So after a lot of editing (which is so boring and made cleaning the apartment seem enjoyable), I will soon have for you (after just one more check for spelling mistakes)...

Wanderlust: That time I cycled across Canada and other stories

My "make sure everything looks ok copy". The actual copies may look slightly different.

The paper copies will be 12$ and will be available for pick up or delivery in the Toronto, Petitcodiac, or Halifax areas (hopefully by the end of the month).

For those outside of those areas or for anyone who prefers an e-book, there will soon be available as pub or .mobi download on here for your e-reader/tablet/phone.  

And if you live outside of the Toronto, Petitcodiac, or Halifax areas and feel like you must have a paper copy of the book, it will be available as a ‘print on demand’ book on Amazon at some point in the near future (However, royalties from Amazon are only about 2$/book and you would have to pay extra for shipping so if at all possible, it's better for both of us if you could buy it from me/my parents/my sister/Isaiah's sister although I completely understand if that is not do-able).  

So if you want a paper copy in the Toronto/Petitcodiac/Halifax area, please email me (adwtsn at gmail.com) so I'll have a rough idea of how many to print off (I don't want to print off too many copies and have to start pedaling boxes of them in front of the subway stations).

Me Before Yo by Jojo Moyes: Some musings

This isn't really a book review but rather musings on the book that I just finished that left me bawling on the couch so much that my partner came out to see what was wrong. I even went for a bike ride after I stopped crying to try and clear my head. Let me say that I started this book knowing nothing about it, I just thought it looked like another feel-good happy ending book.

If you haven't read the book, go read it now and come back when you are done.

This is the synopsis of the book from Goodreads:

"Lou Clark knows lots of things. She knows how many footsteps there are between the bus stop and home. She knows she likes working in The Buttered Bun tea shop and she knows she might not love her boyfriend Patrick. What Lou doesn't know is she's about to lose her job or that knowing what's coming is what keeps her sane. Will Traynor knows his motorcycle accident took away his desire to live. He knows everything feels very small and rather joyless now and he knows exactly how he's going to put a stop to that. What Will doesn't know is that Lou is about to burst into his world in a riot of colour. And neither of them knows they're going to change the other for all time."

That paragraph does not prepare you for the gut-wrenching-emotional drive that is this book. The plot of this book is more about ones right to choose to live and die then the little love story you think is about to happen. The man in this book, Will, felt that being a quadaplegic and having to live trapped in that body was not a life worth living. He felt if he could not be his old self who traveled the world or had an awesome career or use the bathroom by himself that it just wasn't worth living. The female in this book tries to show him that there are still experiences worth living for but in the end he decides that it is not enough. 

This book made me feel and think about a lot of issues. The first being assisted dying and a persons right to die. I am pro-assisted dying for probably obvious reasons. From my vantage point, I think I understand that at some point your life might end up being so different then what you want out of life that it does not make living enjoyable. I empathized with Will, I think that I would feel the same in that situation. I'm not saying this would be the same for everyone because obviously a lot of people who are quadriplegic find a lot worth living for and still get enjoyment out of life.

One can never be sure until they are in the same situation but when I think about what makes my life worth living: travelling, camping, making art, cooking and eating that delicious food, hugging, cuddling, biking, being with my friends, none of them would be possible with the body he was in. He was in close to continuous pain and was often hospitalized for illnesses and while he very much enjoyed some aspects of his life, he did not find it enough to continue on. I believe strongly in quality of life over quantity and living just for the sake of being able to say you lived one more day does not seem worth it to me.  I realize this contradicts my last post where I said I need to start accepting more the body I have and things I am able to do and stop comparing myself to the old-me. I think that is still valid up to the point where the old-you is so completely foreign to the new-you that you don't see any point in living.

This book brought to the forefront my greatest fear: that I am going to get a lung transplant and then have to spend the rest of my life in and out of the hospital, continuously fighting infections and not being able to live my life outside of the medical bubble I will be forced to live in. That is not any quality of life to me. I would rather spend less time living an awesome life than one spent in and out of hospital with illness. That said, I might feel totally different if/when I ever get to that point. 

The other aspect of this book was that it made me feel incredibly guilty for complaining about not being able to travel as much or walk up some flights of stairs without wheezing. There are tons of people who would love to be able to do as much as me. I vowed never to complain about my situation or have days of self-pity again (I wonder how long that will last). I felt like one of those children I mock on youtube who are screaming that they were given the white ipad and not the black one and how their lives are now ruined. Then I thought of one of my friends who told me that the following quote from Perks of  Being a Wallflower has helped her when she was feeling guilty for feeling sad and it really stuck with me.

“I think that if I ever have kids, and they are upset, I won't tell them that people are starving in China or anything like that because it wouldn't change the fact that they were upset. And even if somebody else has it much worse, that doesn't really change the fact that you have what you have.”

I guess the best thing to do for everyone is to acknowledge your feelings (because suppressed feelings are rarely healthy), work through the self-pity or general shitty mood but also realize that it probably could be worse. There is a balance that needs to be found somewhere in there.

I think my next read will be something a little more upbeat.

End of Your Life Book Club - Book Review

I am a fairly big reader and I recently read "The End of Your Life Book Club" by Will Schwalbe. I went into this book knowing nothing about it so I had no expectations. It did not take long to realize that it would not be a book that would distract me from the the thoughts of death.
It is a first person account of a man whose mother is dying from cancer. They spend the last few years of her life reading and discussing books together. The books ranged from books that I have read years ago to books I had never heard of before. They were definitely not reading the latest bestseller crime thrillers by John Grisham.

While it was a book about heavy topics, it was not a difficult read. However, despite my love of books, I did find that I started skimming through the paragraphs that listed and described the books that they read. I think it would have been more interesting if I had read all of the books the author discussed.

The book did make me want to read the "The Etiquette of Illness" by Susan Halpern. Schwalbe described it as a guide on how to talk to people with illnesses and how to approach death and dying as a caretaker or friend. I think it would be helpful to read as I try to handle social situations involving illness. I hope it says what to do in social situations for the person with the illness so I know how to talk to acquaintances (see previous post).

I thought the discussions they had about death were very interesting. The Schwalbe's mother had a very full life and spent a lot of her time traveling and doing volunteer work in or for Afghanistan with the refugee camps. I thought the most poignant section in the book was when a friend mentioned to Schwalbe that if his mother had the ability to choose her death, having to choose death in her late 70s surrounded by friends and family having lived a full and happy life, would not be the worst decision to make. It got me thinking that while we can not choose when we die, we do choose how we live.