The first day of the rest of my life

Hey everyone! I thought I would post again to let you all know that I’m okay! It’s been a really difficult few months, for me and for the people closest to me. I basically had an enormously productive nervous breakdown/midlife crisis. It’s been fucking awful.

I’m sorry that I’ve been lashing out a bit. I’ve been blessed with a lot of clarity recently and my life is going to be changing radically as I move forward. I’ve been so fucked up and lonely and stifled/oppressed by my PTSD and trauma that I couldn’t see myself clearly at all. I couldn’t see how much my PTSD and trauma were colouring every aspect of my life.

These very vulnerable posts that I’ve been making have been an important way of asserting boundaries that I’ve never had (I have almost never set boundaries when it comes to people at all) and also as a mechanism for me to discover who is at my back. Cancer started this process for me and now I’m trying to move forward more intentionally. The path I’m carving out for myself is financially precarious and seething with the critical voices of millions of people who are more hurt, angry, and damaged than I am.

And they are going to come for me.

So thank you everyone who has responded to me over the past few weeks or sent me inspiration or really anything. All of you have inspired me so much and have had a profound effect on everything I will be doing for the rest of my life.

I am finally going to show some of you (those who are smart enough to be interested right now) who I am. I’m going to teach you about all of the things I’ve loved and all of the things that have brought me inspiration, gratitude, and joy over the course of my miserable 38 year long life.

I’m going to teach you how cancer has been the most significant rung on my growth ladder to date. And I’m going to show you a way to live, a way to think, and a way to appreciate yourself and the things around you because I really fucking don’t want cancer to be a part of anyone else’s growth ladder.

I’m also going to teach you about health. About how I’ve become invested in my health as a fat person, and how fat phobia, particularly medical weight stigma, has made me destroy my body. Because that’s what I’ve done, I destroyed my body. There are a lot of very complex, vulnerable, scary reasons for that. They’re reasons that can help you live a healthier life, whether you’re fat or thin or somewhere in between.

I am the owner of three (3) very serious inflammatory auto-immune conditions. I have decreased the inflammation in my body to the point where it basically doesn’t exist anymore. Let me teach you how I still get to eat Wendy’s and also reduce the inflammation in my body at the same time.

The ultimate secret is gratitude. It’s finding things in the world that you can be grateful for. It’s finding things in the world that lift you up, that you can love despite their flaws: people, books, video games, crafts, art, culture. It’s about not punishing Jeff Gerstmann for giving Twilight Princess an 8.8. It’s about kindness and generosity and accepting that we can still love things that others don’t like and that we can still love things even though they aren’t perfect.

I’m sorry that I don’t have much to show you yet, but let this be my commitment to you that something big is coming from me. I’m not sure if it will ever be anything other than my new, whole face, my new whole combined self that I use to build my tribe. But I realized that I’ve been compartmentalizing my life in all the wrong ways.

And really, none of you know anything about me.

I want to rectify that. I want to be a whole ass adult fucking person. I want you to see what I’ve been doing all these years, because no one has any fucking idea! I want to publicly, without apology or guilt, live my best fucking life.

I’m going to be planning out this project in October. In November, I’m going to do NaNoWriMo for the first time. I love writing challenges. I’ve done NaBloPoMo (National Blog Posting Month) at least 5 times now (2 or 3 times successfully) and it’s always been a challenging but rewarding experience. I want to do that differently this time. I want to write essays, but I want them to have a unifying theme and this is what I will be doing over the next two months. 50 000 words is nothing, I can do that in my sleep.

I will also be doing some reconnecting with friends, chosen family, and with my incredible partner, Sean Whitworth, who has been my amazingly supportive #1 fan for the past 6 years and who I could never, ever have done any of this without. When I was in my most desperate and lonely place, he extended a hand to me. I don’t think either of us ever knew how important that would be, but that was my true lollipop moment. I would not be here right now without you.

And really, I wouldn’t be here right now without all of you. Everyone who has touched my life has inspired me in some way. Some negative, some positive, some mixed. I have loved you all in some way and my love is pure and eternal because I can see your damage too. I can see your hurt and pain and your flaws and I’m still here. I see you. I notice you.

And what I really, really want to do is put my arms around all of you and bring you with me. So please be patient, but consistent, and I will show you how much I love you.

Taking a nice, long break

To start this post off on a positive note, I just want to announce that my long term disability application was approved today.  As I’ve mentioned previously, the application process has been long and stressful and I’ve been living without any income or savings for several months.  I’ve been planning hypothetically, based on a number of outcomes, how I was going to deal with my current financial situation and I’m extraordinarily grateful that I got the best of all the outcomes.  If I manage everything responsibly, I’ll be in a great position to start moving forward with all of my financial and life plans when I return to work, rather than being in debt with no savings and having to start over from scratch.

Prior to receiving my cancer diagnosis, I often scoffed at the cost of my long term disability benefits.  No more.  I know that they seem expensive, but if you are ever in a situation like mine (and anyone can be), you will be terribly happy that you have them.  Sometimes life throws curve balls at you and cancer can happen to anyone, even if you have no family history at all (which I don’t).

Now that I’ve dispensed with the happy news, it’s time to move on with the less happy news.  As I’ve said on social media and to friends privately, my health has been declining significantly over the past few weeks.  Because of this, writing has become much more difficult.  My low energy levels have been sapping any desire to be creative at all.  Coming up with topics to write about has become an exercise in pulling teeth and once I get started on writing something, I don’t feel attached to or interested in it at all.

And this is all okay, I expected that this would happen at some point.  I think the best thing to do is to take a step back.  I’m taking all of these feelings as my body’s way of telling me that I need a good, long break.  I need to rest and let my body do what it wants for my last two treatments so that I can begin to recover.  I’m going to focus on reading, resting and taking care of myself as best I can.

I can’t even begin to describe how happy writing has made me over the past six months.  I managed to mostly keep to my schedule and write essays that I am (mostly) genuinely happy with.  I am terribly proud of myself.  There were a few folks in my life who doubted that I could keep up with writing for so long during treatment and I can’t tell you how happy I am to have proven them wrong.

Thank you to everyone who has read what I’ve had to say during this time.  I’ve been writing for myself — just writing to write — but it’s been a tremendous boost and comfort to me to know that some of you have been reading and considering what I’ve had to say.  I will always be grateful for your time, attention, and kind feedback and comments.

If I have any significant updates to share or if the mood to write strikes me suddenly, I’ll definitely be posting.  Once I’m feeling better, I hope to resume a regular, if a little less frequent, posting schedule, but we’ll see.  Take care, everyone!

Media Round-up for 29/04/2018

Heavy Rain

heavy rainI have an odd relationship with David Cage/Quantic Dream games.  In many ways, they’re terrible.  The stories are odd mash-ups of bad American action film tropes, the actors are all Europeans who generally fail at speaking with American accents, and everyone hates quicktime events.  Despite all those flaws, I generally credit Indigo Prophecy with rekindling my interest in video games back in 2005 — it had a huge impact on me at the time.

When Heavy Rain was announced, I was so excited about it that I purchased a Playstation 3; however, I chickened out and never played it.  Given the story’s subject matter of trying to catch a serial killer I thought it might be a little too scary (I am a baby about scary things, despite loving true crime).  Since my boyfriend and I got together four years ago, he’s been trying to convince me to play Heavy Rain, which he loves despite and because of all its ridiculous flaws.  Over our last two visits, we were finally able to finish it.  I played the first half of the game while he watched and, due to my hands being awful, he played the second half of the game while I watched and made the narrative choices.

Overall, I enjoyed Heavy Rain, but I don’t think I would have had nearly as much fun with it if Sean and I hadn’t played it together.  Many elements of the game are unintentionally funny, such as the awful voice acting and the bad controls.  Being able to laugh about those elements together made the experience enjoyable in a way that I don’t think would have been the same if I’d been playing alone.  I also think that, while the story has its share of trite moments and some of the side characters are more than a little offensive, the way the it unfolds and the sheer number of endings and branching paths is quite impressive.  Character death is meaningful and can completely change the outlook of the story.  Many games attempt to provide players with narrative choices and they mostly don’t mean very much in the long run.  While the story mechanics aren’t perfect in Heavy Rain, I think think that Quantic Dream has pulled these elements off quite well.

The Girl on the Train

girl on the trainThe April theme for my ONTD reading challenge was to read a book with an unreliable narrator.  After poking around some lists on Goodreads, I noticed that I already owned The Girl on the Train and figured I should read it and avoid purchasing something new.  I’m trying my best to use the ONTD challenge to read books that I own and haven’t yet read — it’s been working out quite nicely and I’ve enjoyed both the books themselves and the feeling of using up things I already own.

The Girl on the Train isn’t the best thriller I’ve ever read, but I did enjoy it.  I love authors who risk writing female characters that are not likeable (I loved The Bell Jar for this as well) and I think that Paula Hawkins has created three remarkable female characters who are strong, smart, messed up, and interesting: not likeable, but somehow also sympathetic.  I have a lot of thoughts and feelings about the likeability of female characters in fiction, but Roxane Gay has said all of them a lot better than I ever could in this essay, so I won’t go into them here.

The story is mainly about a woman named Rachel, who lives just outside London.  She is struggling with alcoholism after her divorce and she commutes to work by train.  Over time, she becomes a bit obsessed with watching this one married couple whose house she rides past every day.  When the wife of the couple she’s obsessed with, Megan, disappears, Rachel has information about the disappearance, but she struggles to remember due to an alcohol-induced blackout: mystery and deception ensue.

The book’s narration is first person and, while Rachel is the main character, some chapters are written from the perspective of Megan and another woman named Anna (who is currently married to Rachel’s ex-husband).  The best aspect of the book, for me, was this three narrator format.  It’s obvious that Rachel’s memory is not particularly reliable, but having the two other narrators always made me wonder which of them might also be lying or deceiving the reader.  This kept me guessing about what was going on throughout most of the story, though I did have some accurate guesses about the true nature of some of the characters early on.

Overall, The Girl on the Train was an enjoyable read.  Nicely written, an interesting main character, a decent mystery and good suspense.  While I sometimes veer away from books that are wildly popular, I sometimes like to check them out to see if they live up to the hype.  I would say this book falls a little short, but it’s still a fun read.

Life Update: the Chemo is working (and a lot of other random stuff)

I was going to start writing a series on my relationship with stuff and money today, but I don’t quite have my thoughts on it in order.  I know I want to write several posts on this topic, but I’m not yet sure about how I want to split them up and how I want to approach writing them.  I’m also a little shaken today by the Toronto terrorist attack and the relationship between the perpetrator and the Incel movement.  Since the 2014 Isla Vista killings, perpetrated by Elliott Rodger, this kind of misogynistic, woman-hating violence has been terrifying to me.  It drains my energy and makes me want to withdraw.

And so today I’m going to take things easy and just write a bit about what’s been going on in my life.  The biggest news I’ve had to share recently, of course, is that I received the preliminary results of my latest PET scan and they’re excellent.  I have very little active disease remaining and the chemotherapy is doing its job.  Hopefully, if all goes well over the next few weeks, I will be having my last infusion on May 25th.  And then, of course, the uphill climb toward recovery begins.

As I said in my last update, the recovery process is more than a little daunting.  I had a bad wake-up call on the severity of the neuropathy in my hands a last week.  I had been itching to play video games, so I spent more time than I should have playing my favourite MMO, Final Fantasy XIV, with a controller.  I had horrible nerve pain in my fingers for several days afterward.  I’m even more afraid of permanent damage now than I was a few weeks ago.  I have to test things out from time to time, though, or I won’t able to judge my limits.  I’m going to try playing for shorter periods and only a few days per week and see if I can manage that.

My long term disability situation is finally being worked out, though things were quite stressful there for a few days.  The company I work for decided some time ago to switch insurance companies and the transfer will be completed at the end of April.  I was assured that this would have no bearing on my LTD claim as our old insurer, who I was paying premiums to when I became disabled, would still be responsible for me.  I received a call from my boss the other day that sent me into a an awful spiral.  She told me that she had been informed by our company’s benefits administrator (who is a consultant) that my insurer had still not received the medical records from my doctor’s office.  She implied that those records needed to be sent to the insurer before the end of the month or it would cause problems with my claim due to the transfer.

Of course, my stomach dropped into my knees and I started cursing myself for not speaking with a lawyer as soon as I found out that my employer was switching insurance companies.  I had been doing my best to resolve the medical records issue (which, as I suspected, wound up being an enormous and frustrating problem) and had not been successful at getting my doctor’s office to fax my records properly.  I frantically drove to my doctor’s office, basically having a huge meltdown on the way there only to receive a call from their office manager, while in the car, confirming that the records had been sent.

The next day, I called my boss and asked for a meeting with the benefits administrator.  I got her contact information and she assured me that there is no problem with the transfer.  She had simply been following up on my claim and told my boss that I might be able to expedite the situation if I contacted my doctor’s office and prodded them about the medical records.  My boss then, without knowing what she was talking about at all, called me and gave me incorrect information and sent me into a complete meltdown about nothing.  It was more than a little frustrating.  I just don’t have the energy to deal with intense feelings like that right now, but thankfully my medical records have been sent in and now all I have left to do is wait for the results.  I just want an answer, I’ll be okay with whatever’s thrown at me.

To finish up, I want to say that Frankie is doing very well.  She’s a little small so far for a French Bulldog, but she’s finally starting to understand where she’s supposed to go to the bathroom and she’s starting to grow into a lovely dog.  My mother and I were getting close to hiring a private trainer for a little while there and I know I frustrated the hell out of my old friend Deirdre (who is an awesome trainer and dog walker) with my whining, but things are finally starting to work out now.  We’ve been enjoying the nice weather and she loves exploring in her yard.  I finally feel like I’m in control of my own life again and I’m starting to love her the way I wanted to when we first brought her home.

I have chemo this afternoon and will be hunkered down in bed for most of the weekend.  I hope you’re all well and plugging along!

 

 

Let’s read some books!

The chemotherapy-induced neuropathy in my hands has forced me to make a lot of changes. I love cooking and baking, doing arts and crafts, and playing video games, but I haven’t been able to do those things since my first treatment. To keep myself busy, I’ve had to fill my time with some of my older hobbies that I haven’t made as much time for over the past few years.  Mostly, I’ve been reading.

Right now, reading is exactly what I need.  I’ve been avoiding physical books because they’re hard for me to hang on to, but my iPad mini and Kindle are easy on my hands.  Books are also a great value for entertainment media: even if I’ve spent a bit more than what I should on them recently it’s pretty tough to get yourself into financial trouble by buying books, especially since I’m a fairly slow reader.  Even better for my budget right now is the fact that I’m able to borrow free ebooks from the library.  It’s a little tough to wait for the numerous holds on popular titles, but easy and free are worth it.

As I said above, I haven’t spent a lot of time reading books over the past few years.  I’m currently on track to read 7 books in April which is, on average, a little more than I’ve read per year since I graduated university.  This has definitely been a source of embarrassment. I’ve always seen myself as a reader and for most of my youth, reading was my main hobby. As I got older, I slowly found myself reading published books for fun less often. I think there were several reasons for this.  Mostly, I struggled with finding my identity as an adult reader. With world of books being so enormous, I had trouble finding well-written, contemporary fiction that suited my taste and I didn’t always enjoy slogging through well-known classics.  I would stick with one or two authors for awhile and then have no idea where to go when I had read all of their work that interested me.

University also took a lot of the fun out of reading.  As a history major I would often have upwards of 600 pages of reading (or more, especially if it was time for term papers) per week. It wasn’t fun, easy reading: so much academic writing is dry and boring and remarkably difficult to slog through, even if the subject matter is interesting. The last thing I wanted to do with my free time was read more, even if reading fiction was more fun than reading academic non-fiction.

After finishing my undergraduate degree, I started my long and strange journey of being intentionally single and trying new things.  I started playing video games. Video games led me down a path toward a lot of new (to me) media, like manga and anime. For a good while, I wanted to immerse myself in those new interests and give myself the time to enjoy them. This didn’t leave me with a lot of room for reading published books (though I did read lots of fanfiction, but that’s another story for another day).  It’s hard for me to admit it, but books just sat on the back burner for awhile.

Being absorbed in reading again has been wonderful, like settling in for a lovely afternoon with an old friend.  The ONTD reading challenge that I decided to participate in has been especially fantastic.  I have the freedom to choose any book that fits each month’s theme, but I’m also forced to try out authors and genres that I normally wouldn’t consider reading on my own.  Best of all, the participants all make loads of recommendations each month, which has helped me make some fun new discoveries!

In some ways, one of my greatest struggles as an adult has been balancing my free time.  There are so many different activities that bring me joy that I often have trouble choosing what I should do on any given day.  I hope that once my condition improves and I return to work that I’ll be able to make room in my life to continue reading.  I won’t have as much time as I do now, but I’ve realized that it’s a hobby I should keep up with.  I certainly have enough recommendations to keep me going for a good long while!

Are there any interests or hobbies that you aren’t making enough time for?  What books are you reading right now?  Let me know in the comments!

Things you shouldn’t do for your friend who has cancer

As a follow-up to last week’s post about things you should do for your friend or loved one who has cancer, I wanted to spend some time discussing a few things that it might be best to avoid.  Of course, everyone is different and your mileage with these tips may vary, but I would say that these are the issues that I’ve had the most trouble with.  It’s important to note that my intention is not to shame or scold, I’m just looking to provide you with some best practices that might help you avoid some awkward moments (or landmines).

1. Try to avoid asking invasive questions.

Even if your friend is comfortable speaking publicly about their health, it’s important to remember that you have no right to information about your friend’s body: their body is their business.  Asking questions about your friend’s ability to perform sexually or whether they’ve lost their pubic hair is incredibly rude and will likely make them feel uncomfortable.  Of course, there are people out there who won’t mind sharing this kind of information; however, in my opinion it’s best to give your friend the opportunity to make that choice for themselves.

When you have any serious medical issues, you give up a lot of your privacy.  When I was in the hospital, for example, I had to answer hundreds of invasive medical questions in front of an entire ward of strangers (and their visitors).  As a result, I’ve become both desensitized to sharing things about myself and also even more guarded about my privacy than I was before I became ill.  I don’t like it when people ask me invasive questions, because I think it’s rude, but if I’m comfortable I don’t mind providing information — particularly if I think it can be helpful.  Let your loved one share what they want to share and realize that your curiosity isn’t important.  As I said last time, this isn’t about you.

2. Try to avoid giving unsolicited advice, particularly if you have no firsthand experience.

This one is a little complicated.  In my experience, we tend to interpret a person’s posting about a problem on social media as a request for advice.  The uncomfortable truth, however, is that sometimes that person is only looking to share their experience and they’re not seeking advice at all.  Sometimes interpreting the difference between those two things is difficult, but in general I believe that it’s a good rule of thumb to avoid dispensing advice when you’re dealing with a topic in which you don’t have any personal expertise or experience.

Don’t tell your friend who has cancer what they should or shouldn’t be eating — oncology teams generally tell cancer patients to eat whatever they can stomach.  Don’t tell them what supplements to take or how they should manage their pain or nausea.  If you’re a survivor or you have another loved one who has cancer, feel free to share what may have worked for you or them in the past, but try to do so in a way that is respectful and polite: what worked for you or your other loved one may not work for the person in question and that’s okay.  It is, of course, fine to respond to a request for suggestions, if your loved one happens to make one.

If you do feel like you have some advice to offer in a given situation, I think it’s important to remember that it is your loved one’s right to follow through with your suggestion or not.  If they thank you for the advice, leave it there and know that they have respectfully considered your input.  In the end, your loved one will do what they believe is best for their mental and physical well-being and the rest isn’t really your business.

3. Do not congratulate them on their weight loss or tell them that cancer is a great diet plan.

In our culture right now, we almost universally see weight loss in a positive light and this is a complete fallacy.  People lose weight for all kinds of reasons and many of them can be negative, such as chronic illness, mental health issues or eating disorders (just to name a few).  If you know that your friend or loved one is suffering from any of these issues, it’s probably best to assume that the weight loss isn’t intentional.  Cancer sufferers, for example, often lose significant amounts of weight due to the cancer itself (lymphomas often cause unintended weight loss) and nausea.  The weight loss that they experience is likely a reminder that they are sick and can’t eat or digest food properly and not something to celebrate.

Of course, it’s possible that your loved one won’t find comments about weight loss offensive — they might even make a joke or two about it themselves.  The most important thing to remember in all of this is that everyone is different.  In order to really support your friend who has cancer let them take the lead.  Try to be as gentle as you can and pay attention to the cues that they give you.  I’ve said this a lot over the past few weeks, but it’s never going to be less true: it’s just not about you.

Media Round-up for 15/04/2018

Accused: Elizabeth Andes

accusedI first listened to Accused last year, not long after the first season was released.  When I found out that the team at the Cincinnati Enquirer was making a second season, I decided to listen to the first season again before continuing on to the new case.

Similar to In the Dark, Accused is a podcast where a team has investigated one particular crime.  Season 1 of Accused examines the 1978 murder of Elizabeth Andes, a 23-year-old Ohio woman who was killed in her apartment just days after graduating from university.  Elizabeth’s boyfriend, Robert Young, almost immediately became the police’s prime suspect.  Young was tried twice for his girlfriend’s murder, both in criminal and civil court, and was found innocent both times.  The case remains open, but it seems as though local law enforcement officials are so dedicated to the idea that Robert Young is guilty, they have not conducted any substantial work on the case in a very long time.

Accused is a terrifying story about how law enforcement officials can get bogged down in pursuing only one suspect.  Personally, this is something about policing that I’ve never been able to understand.  I know that investigations are rarely resolved as tidily as they are in police procedural dramas, but I’ve always believed that detective work should be about keeping an open mind.  In the case of the murder of Elizabeth Andes, however, it seems as though the police focused on one suspect early on and convinced themselves that they were finished.  In this light, law enforcement looks far more like a game of winning and losing than it does like a game of trying to find the truth.

My only real problem with Accused is its audio quality.  There are a lot of interviews with the victim’s friends and others involved in the case and I found that the poor quality of the audio in those interviews can make it difficult to understand what some of the interviewees are saying.  As such, I would recommend listening to Accused on the highest audio quality you can find and with decent headphones rather than trying to listen to it in your car or in a loud environment.

Ugly Delicious

ugly deliciousAs I said in one of my March Media Round-ups, I think that Netflix is knocking it out of the park with documentaries right now and Ugly Delicious is a great addition to their current library.  The series is a discussion about the history and social impact of certain types of popular food such as pizza, dumplings, tacos and fried chicken. Renowned chef David Chang and his good friend, Peter Meehan (a food writer), discuss these foods with friends in the culinary world and travel to various locations to see how those foods are produced.

While I’ve never eaten at any of David Chang’s restaurants, I was familiar with him as a food personality prior to seeing Ugly Delicious.  Chang was the featured chef in the first season of the excellent, Anthony Bourdain narrated, PBS documentary series The Mind of a Chef (which is also available on Netflix) and I’ve been interested in his perspective on food since watching that show.  Ugly Delicious is less a documentary and more a series of conversations about food.  Central to those conversations are two topics of particular interest to me: culinary authenticity and culinary politics.

Chang and his friends ask some important questions about authenticity.  For example, what is required to produce an authentic Neapolitan pizza?  Must it absolutely be made with Marzano tomatoes and Mozzarella di Bufala Campana, which will almost never be fresh if they’re exported internationally?  Or can it be accomplished in Japan with local tomatoes and local mozzarella?  Does authenticity come from using highly specialized ingredients from a particular location, or does authenticity come from making the highest quality product from the highest quality ingredients available nearby?

There are also some phenomenal conversations about sociopolitical aspects of food, examining issues such as the troubled association of African Americans with fried chicken and how Italian pasta is always considered better than Asian dumplings.  These discussions ask a lot of questions that are nearly never asked in food-related programming.  If you are a bit of a foodie or you like cooking shows, please do yourself a favour and check out Ugly Delicious.  It’s awesome.