Milestone

I should be sleeping but I suddenly had the motivation to clean my room. Seeing as how my room hasn’t been deep-cleaned since May at least and there’s still stuff I haven’t unpacked since I moved back almost 14 months ago, I figured I should just run with it.

So I spent the next two and a half hours cleaning and putting away clothes and throwing away junk that I have had since elementary school. I even cleaned out my “pharmacy”, which had meds filled in 2012!! I threw out food that I moved back with me but never unpacked.

Results:
– giant trash bag full of trash
– full trash can of plastic recycling
– full paper bag of paper recycling
– full paper bag of items for donating
– one dress for dry-cleaning
– full hamper of clothes to wash
– empty laundry basket of clean clothes
– mostly visible (but not so clean) floor
– noticeably less dust
– new memories for my project life album

Wow. I’m exhausted. (It’s surprising how much you can get done when you’re supposed to be heading one hundred papers!)

Cheers,
Abigail Cashelle

the tables have turned (in a good way)

Now that I’m on faculty at a university (can we just pause and reflect on how amazing that is??), I have a student in my class with a significant chronic illness. She came up to me with some paperwork from the Disability Office asking for some specific accommodations. Now accommodations are annoying to teachers, and I get why. You have some great plan and vision for your class, and all of a sudden some random person comes up to you and says, Sorry. Mandatory change of plans.

But I looked at her sheet and listened to what she had to say and realized that she wasn’t asking for a whole lot. In fact, she was asking for exactly what I asked the ravenous lion for on my very first encounter. She asked for a flexible attendance policy. Attendance is mandatory in my class. You can miss up to 3 classes penalty-free, and attendance counts as 10% of the grade. That’s bad news if you have an unpredictable chronic illness.

What made me really happy was that I was able to sit down with the student and talk through some of the logistics with her. I told her that I was more than happy to give her the full 10% as long as she realized that she was fully responsible for all the content in the class. If she missed a lot of classes, it would be a huge challenge to pass the class. (So it doesn’t really give her much of an advantage.)

But mostly we just talked about life with a chronic illness. I asked her if there was anything she wanted me to know about her illness, anything that I could do to make things easier or intervene in the case of an emergency. I told her that I myself have a chronic illness and am familiar with how scary that can seem to other people. And that secret made her really happy.

She said that most people are freaked out when they find out that she’s not healthy and immediately want her to vanish. And so she spends a lot of time thinking about accidentally making other people feel uncomfortable and how she can avoid that. She was really happy to meet a teacher who felt comfortable talking to her about it and who was immediately on her side. She said that she felt so much safer in the class.

I’m so happy that she found me approachable and understanding. I’m still really nervous about my illness and my lack of a Ph.D. in the department and haven’t told anyone at this university about my illness besides her. I know exactly how she feels because I live in that exact same world. But I’m glad that I could make her feel a little more at home in school. And it gives me a comrade too. Someone else who knows that I’m also struggling some and that sometimes, things are not what they appear.

Abigail

the rest of that ER story

I realize that I left you hanging with that last post. I guess that’s what happens when you write blog posts at 4 am. Short Story: I’m fine. Long story:…

I haven’t been sleeping very well because I’ve been a lot of pain. (I guess so much for telling the doctors that I’d been in much less pain.) Anyhow, I woke up because I really couldn’t sleep, and I was in a really bad mood. I couldn’t decide if I was just hungry or actually in pain, so I tried eating some stuff which made things worse. In debating over whether or not to go to the ER, things got WAY worse. So I wrote a note to the family, put it on my bedroom door, and grabbed some stuff & Molly and headed to the ER. Fortunately, I’d done my research before and figured out which ER made the most sense for me. (There are three ERs that are basically the same distance from my house.) That was about 3:15 am.

The whole trip was kind of surreal. I was SO exhausted that I wasn’t thinking clearly most of the time, but I was feeling bad enough to know that I couldn’t leave. I spent at least two hours in the waiting room with a young couple and their 14 month old daughter. She was really cute, and we managed to lean on each other a little bit emotionally, so that was nice. Both the dad and I had a lot of abdominal pain but were trying to be really saintly about it. (Not sure how much we succeeded on that point.) So I was grateful for the company, and Molly made a new friend.

I would have to say that it was the one time in my life that I was jealous of someone with appendicitis and was heading to emergency surgery. It sounds bad, but I saw the dad in the hallway right when he was getting diagnosed (and then word travels around the ER pretty easily since there aren’t exactly real walls.) I felt bad for him and for what they were going through and was praying for them and everything. I was just jealous of the fact that his middle-of-the-night ER trip was totally justified, that he had an answer, and that he was given a solution. Unfortunately, I had none of those.

They were able to confirm that I do not have appendicitis nor an infection nor anything else life threatening. It wasn’t even immediately obvious if it justified an ER visit anyways. It could have been an entire waste of $700 and a whole bunch of “sleep”. But talking it over with Alana, I realized that there were some serious red flags. Like I measured my heartrate with my phone app and it was 136 beats/minute. (My resting heart rate is generally under 70 bpm.) I was so scared and so tense because of the pain that I was having a hard time breathing. So perhaps even if the ER doctor was confused why I went in, I think it’s a good thing that I got things checked out and that I got a few things ruled out right away. Otherwise, this girl who has to take care of herself all the time would have maxed out capacity-wise.

So yeah, I didn’t get back to my house until 9 am. And I taught two classes and tutored for an hour all after that.

I’m actually still up and down as far as pain is concerned. Dr. Leo has me on some formula that’s helped some when eating is just a nightmare. And I’ve been trying to rest a lot even when I’m not tired because I know my body is in mega temper tantrum mode still. I’ve been listening to this song (above) over and over again when I can’t fall asleep at night. I reminds me of great childhood memories, and it helps with the not freaking out & actually breathing. And I try to remember that my body tends to throw fits when it’s thrown new things. So I’m trying to take it all in stride.

Just another day in the life,
Abigail

All quiet on the western front…

I’ve been pretty quiet here mostly because things have been looking up. I’ve been feeling better (in general) and have been working a lot. Here are a few updates.
– I witness the marriage of aaron and his beautiful wife ealier this month. It was a surreal experience, not mwrely aeeing all my friends again and seeing aaron marry my housemate, but even more seeing the work of God in his life.
– our little community also had another wedding that same weekend, so I also got to be a part of that which was pretty awesome and gave me more time to spend with my friends.
– I started a new job this week. I’m actually a (part-time) faculty member at a local university, which is pretty awesome! Now if lectures could just prepare themselves and I could figure out how to mute the ravenous lion in my head, we’d be headed to even greater success.
– I got to visit both Dr. Leo and Dr. Samuel this month. Both of those visits were extremely encouraging. We reflected over how much has changed in the past three years and they both remarked that they were so proud of what I’ve been able to accomplish in the past year: trying new activities, getting a job in my field, and beginning the path of healing with my family. They also see me as so much more self-confident and mature. That was extremely encouraging because it’s easy to lose sight of the big picture when you’re to busy living ordinary life!
– my pharmacist (who is also awesome) is really excited that I’m a professor now. He said that seems like just the perfect fit for me (which is cool). Last time I saw him, he said, “go get ‘em tiger.”

image

Just another day in the life

The downside to ask this awesomeness is that I’m writing this while sitting in the ER waiting room with massive abdominal pain hoping that someone will have the answer. Oh the life of us chronic illness citizens.

Abigail

Join Me in Making This Wish Come True

As I’ve told Tabitha many times over, one advantage of being stuck in bed all the time is that you have a profound amount of time that you can devote to being the bestest friend ever. How? You’re the only person who has an infinite amount of time to talk on the phone, to rehash every detail of the a scenario, and who isn’t really bothered that it’s dinnertime or 3 am.

This girl thrives on social interaction, and you have to be rather creative if you want to maximize your social interaction when you’re holed up in bed. One of the things that I’ve started doing is writing letters to people who need a little extra cheering up. I sent a few “get well” cards to Jeff Bauman last year, and I’ve written a few letters to troops stationed abroad. I saw this sweet little face and decided that I can write “Happy Birthday Danny” just as well as the next person.

It’s not very often that you have the opportunity in making someone’s wish come true. Won’t you join me in wishing this little boy Happy Birthday??

Abigail

Honored to be Chosen…

as the Advocate of the Month for the Mesothelioma Cancer Alliance Blog.

Briefly, succinctly, mesothelioma is an aggressive type of cancer that attacks the lining of the lungs and/or abdomen. It’s primarily a result of exposure to asbestos but can take many, many years to surface.

I wrote a little bit more about Robert and tried to add a whimsical twist to the story. If you know me in real life, you know that I like to tease people that the mere fact that they are tall makes them special. Come to think of it, I think my fascination with Robert and Matthew’s height started it all.

I only have a few memories of life before age 5 — being chased by a goose, my best friend’s family moving to Russia, and Matthew and Robert. Matthew and Robert are memorable because they were tall, so tall in fact that they were the only two people in my whole church who had to duck to fit through a doorway….

Read more: http://www.mesothelioma.com/blog/authors/warrior/advocate-of-the-month-july-2014.htm#ixzz36YvEqxLD

Abigail Cashelle

CPBC: The Fault in Our Stars

Molly and I snuck out tonight and saw a movie. I’d been hoping to do something really grand for the 4th like go to a waterpark or visit some friends. But my hip is majorly hurting me, it was supposed to be storming, and my friends are (mostly) out of town. So a movie it was.

We saw The Fault in Our Stars based on the novel by John Green. It was beautiful, very heartfelt with really amazing acting.

The premise goes something like this: a teenage girl has been diagnosed with terminal cancer… in her lungs which makes it difficult to breathe. She’s convinced that the only point to life is to make her parents happy because if she dies, the meaning of their life will die with her. Her mom forces her to go to a cancer support group meeting week after week where she meets this teenage boy. She falls for him because he’s handsome and smart and kind of dangerous (and oh he also has cancer but he’s in remission.) The story follows them as they fall in love and are destined to live happily ever after until cancer gets in the way of destiny. Something like that.

I like movies about characters struggling with illness because it’s something I spend a lot of time thinking about. The Fault in Our Stars has some amazing jokes about being a chronic patient that are really relatable, like how people always tell you that you are brave for living with illness (is living with an illness a choice?) and you’re strong for saving that this pain is only 9 out of 10 (when all you’re thinking is how is pain quantifiable? and there has to be something worse than this even though you really wish there wasn’t.) The problem is that they tend to have cheesy endings. And usually someone ends up dead. Like A Walk to Remember or The Sisterhood of the Traveling Pants. And it’s all about survivor guilt and the legacy that people leave when they succumb to illness. Or Dear John or The Vow where the premise seems to be about letting go of the past you can’t change and holding on to the hope of the future. They make for great movies but rather cheesy realities. Even though some of them are based on the lives of real people.

TThe Fault in Our Stars has its fair share of movie stereotypes. But it has sufficient redeeming moments to make it worth watching.

  • Like the moment when Hazel confronts her parents about their motivation behind her positive prognosis. It turns into a conversation about how her mom is going to continue to live a purposeful life even after she dies.
  • Or when Hazel tells her dad that it’s not fair to Gus to be his girlfriend, and her dad tells her that it’s not fair to be her parents either and that they’re thinking of abandoning her on the sidewalk outside an orphanage and just walking away so they can live the life that they were supposed to live. For reals. Not even kidding.
  • Or what it means when two (or three) broken people support each other and lean on each other and face their fears together.
  • Or what happens (spoiler alert) when someone dies, and it’s not the person that was “supposed” to die. What does it mean to walk in the shadow of death? How does a dying person survive?
  • Why is it that the simple platitudes that are all around us never seem to bring us any comfort? At “that person’s” funeral, Hazel makes a comment that funerals are really to comfort the living, not to speak to the dead. And sometimes that means ignoring the truth and sugarcoating the past because it’s easier to swallow.

Oh, and the best part, egging the car!! Because I’ve definitely like shattering something. (But the stupid chronic fatigue syndrome keeps me from ever actually getting out and being destructive.) And because the last I thought of when he said, Do you have $5? was that that they were going to egg a car. Plus the line: Between us, we have five legs, four eyes, two and a half pairs of working lungs, and two dozen eggs. So I would suggest you get out of the way.

There were definitely parts of the movie I didn’t understand. And parts of the movie that I would have left out. But I could feel that the movie (or the storyline at least) was written by someone who had passed through the loss that comes with chronic illness and comes before death. And now that I think about it, it makes sense. John and Hank Green are a working example of two brothers supporting each other, making up for each other’s deficiencies, and supporting each other’s curiosities. Hank’s been very frank about his long journey with Crohn’s disease and the way in which society affects us and we them. It’s lovely to see John’s perspective on the issue, particularly in the form of entertainment.

I might just have to start reading the book! Molly, I sense a visit to the library or the bookstore in the very near future.

Abigail