Category Archives: disability

Osteosarcoma Distal Femur0002

anniversary #33

Osteosarcoma Distal Femur0002Today, May 21st, is a day that is generally difficult for me because it’s the anniversary of the day that I was diagnosed with bone cancer.  And that diagnosis forever changed many aspects of my life.  A diagnosis like this one brings with is a lifetime of having to explain my complex health situation (my ‘pre-existing’ condition). It colors many of my social interactions, it means that I live in a state of simmering concern that the cancer will return.

It would be two days after my diagnosis that I would learn that my leg would be amputated and that I would be disabled for the remainder of my life. But in some ways that concern was very much on the back burner because what mattered most was that I somehow live long enough to let that matter–to have the problem of actually living with a disability instead of death by cancer being imminent.

Recently I mentioned to some of my students that I’d had bone cancer as a teen. Their demeanors changed dramatically when they heard that–I could see that even the very word of cancer was an impactful one, and to have ‘lived’ so long since my diagnosis (33 years!), well, that is a powerful thing.

Perhaps what I think about the most now, as I consider what the next 33 years might bring for me, is how I can maintain the greatest amount of health and mobility for myself as I face the natural declines that come with ageing.  I continue to need good prosthetics and good healthcare in order to live an active life like the one I have now, and that is an expensive prospect.  It also takes a lot of time and commitment to walk well and be strong.  Sometimes I am up for the effort that it takes and sometimes I’m not.  Sometimes I just want to be a couch potato and not have to try so hard every day.

But I think that is probably what changed the most on that day that I was diagnosed–that day I lost the luxury of laziness.  Since then I’ve had to work very hard to achieve even the basic goals of ambulation and self-sustenance, not to mention the extra energy that it takes to be gainfully employed, intellectually agile and socially engaged.  I don’t necessarily resent or regret it–it is what it is and there is nothing gained by wishing things could be different.  I suspect, too, that much of what I have achieved has come from being forced to be responsible and diligent in so many aspects of my life.  And in that I might even be called fortunate.

However, even if I realize that it is likely a larger good that this has happened to me (I don’t take even the simplest stroll down the street for granted), today I might indulge in a moment of ‘what if’…and consider what it would have been like to have been able to grow up without the added challenge of bone cancer and the loss of my leg.

Want to read a few other of my posts written on my cancer-versary? Click below.

Last year I spent my anniversary #inthegarden
In 2010 I had a giant fundraiser to buy prosthetics for a Chinese amputee
My 39th Birthday year
In 2012 I met up with an old friend in Zurich
In 2014 I told my daughter the story of my diagnosis


(image is not of my knee, but shows how osteosarcoma looks in a patient with a similar tumor)

I am a teacher

photo of a powerpoint slide from a talk by Martha Burtis

Image is from Martha Burtis’ keynote talk at the Digital Pedagogy Institute that I attended earlier this summer. Her full talk is available here.

I am a teacher, and am happiest when I am grappling with how to share what I know and what I think with others.  Thus, I am fortunate that I hold a position where I am teaching nearly everyday–either through technology training or through teaching courses at ChapmanU.

With this new semester, as with each new semester, I am considering how I can improve my teaching skills.  And I’ve determined that incorporating a more regular reflective practice will be the best way that I can improve my teaching.  I’ve written about this a bit before on my blog, but I am now committing to make this a more explicit focus of my blogginb.

So, to start off, I will invoke one of my greatest mentors and fellow Friend, Parker J Palmer, who asks:

“How can I develop the authority to teach, the capacity to stand my ground in the midst of the complex forces of both the classroom and my own life?”

He clarifies, that by “authority” he means:

In a culture of objectification and technique we often confuse authority with power, but the two are not the same. Power works from the outside in, but authority works from the inside out. We are mistaken when we seek “authority” outside ourselves, in sources ranging from the subtle skills of group process to that less-than-subtle method of social control called grading. This view of teaching turns the teacher into the cop on the comer, trying to keep things moving amicably and by consent, but always having recourse to the coercive power of the law.

External tools of power have occasional utility in teaching, but they are no substitute for authority, the authority that comes from the teacher’s inner life. The clue is in the word itself, which has “author” at its core. Authority is granted to people who are perceived as “authoring” their own words, their own actions, their own lives, rather than playing a scripted role at great remove from their own hearts. When teachers depend on the coercive powers of law or technique, they have no authority at all.

I am painfully aware of the times in my own teaching when I lose touch with my inner teacher, and therefore with my own authority. In those times I try to gain power by barricading myself behind the podium and my status while wielding the threat of grades. But when my teaching is authorized by the teacher within me, I need neither weapons nor armor to teach.

Authority comes as I reclaim my identity and integrity, remembering my selfhood and my sense of vocation. Then teaching can come from the depths of my own truth—and the truth that is within my students has a chance to respond in kind.

His words remind me of something that I have grappled with so many times as I’ve stood in front of a classroom:  that feeling of vulnerability and exposure that comes from the unpredictability of human interaction, as well as the actual physical limitations of my own body to enact and enable a teaching experience.

Perhaps I feel this more keenly because of my awareness that my body can be awkward in the physical space of the classroom.  On days when I am using crutches it can be nearly impossible to deftly use the podium computer or to meander around the desks of the classroom.  Or on some days when I am physically spent and need to sit instead of stand, I feel the challenge of engaging students with my less-than-powerful physical presence.  And of course even on days when I am standing confidently there is the sense that my cyborg body is speaking louder than the words that I am sharing with the students.

But then there is the flipside of that, the fact that I am more physically vulnerable can break down the barriers that might be typical between professor and student.  If we all gather our chairs in a circle on a day that I need to sit, the students also move away from the spaces of their desks and the trappings of their classroom role.  On those days there is no barricade of podium and desk.  On those days learning can happen in ways that are quite different from the learning that occurs when I am delivering content from a screen.

Given that I have little control over the days that I can stand in front of my students versus those that I cannot, I try to do the best I can to prepare for whatever might happen when I enter the classroom.  A teaching exercise that I used in the past might have to be altered, or a student might need to run the technology if I cannot.  If nothing else, it keeps the teaching experience varied, fresh, and open to all kinds of learning possibilities.

So, to return to reflection about my teaching experiences this week, here is a list of a few moments that stand out:

  • Creating the class rules in my HIST 233: Disability in American Life course, in a way that fosters a welcoming experience for all class members
  • Giving each of my students in my Introduction to Digital Humanities course, their own WordPress site, as a sandbox domain where they can write/play/experiment and carry out the weekly practicum exercises for our class.
  • Supporting dozens of faculty in using the Chapman ePortfolios platform for creating their T&P dossiers, and in doing so, helping them to create the best-possible digital representations of their scholarly efforts.  The wide gamut of content that faculty can embed and link to from their dossiers is not only remarkable, but represents the best and brightest work done by early-career scholars at our university (and never ceases to inspire me to do better work myself).
  • Leading a workshop on how to use Classroom-Response Systems at a time where we had a major technical snafu that resulted in my presentation being derailed.  Having to accept that the workshop was unrecoverable in that moment (there was no graceful alternative) and not letting my frustration about something that I couldn’t control, completely derail the conversation about how instructors could use technologies for student-response.
  • Allowing students to choose the platform for their collaborative sharing:  one class created a closed Facebook group and the other opted to create a Slack Team.
  • Having my Intro to DH students read the “Letters to a Future Student” from my previous classes.  Seeing that this exercise increased their enthusiasm for what they will learn this semester as well as their sense of courage to try new/hard technologies.

As I think about this list and all that has already happened in this Fall semester thus far, I am feeling pleased about my efforts.  As Palmer reminds us,

Good teachers join self, subject, and students in the fabric of life because they teach from an integral and undivided self; they manifest in their own lives, and evoke in their students, a “capacity for connectedness.” They are able to weave a complex web of connections between themselves, their subjects, and their students, so that students can learn to weave a world for themselves…

Creating an activist Twitter bot

the L Word on TwitterIn my workshop at Digital Pedagogy today, we discussed how and why someone might want to create a twitter bot.  The uses of such bots can vary widely–they can be playful (such as the Billy Joel bot, which tweets out song lyrics) or can expose hidden behavior (such as the Valley Edits bot, which shows edits to wikipedia from Silicon Valley).

I wanted my bot to do something similar to the bot that corrects people who tweet about “illegal immigrants,” offering corrective language.  However, I wanted my bot to call attention to everyday words that denigrate the experience of disabled people.  So I chose to target my bot on people who tweet the word “lame.”  It took about 30 minutes to create the bot, most of which was time spent on signing up for the various services that I would need to create a new Twitter/IFTTT/Buffer accounts.  Here’re the step-by-step instructions if you want to do something similar:

  1. Sign up for a new Twitter account (a few tricks: you can use your regular gmail account by adding +something to your name.  For example, I used janaremy+something@gmail).  Also, you will need a cellphone number when you sign up, but you can recycle your own cell number from your regular twitter account by texting “stop” to 40404, and then re-use your cell number for your new account.
  2. Sign up for Buffer, which can schedule your generated Tweet content.  In Buffer, add your new twitter account and choose the schedule that you want to use for your content.  As an example, I chose to publish my content 8 times per day, and Buffer then selected the appropriate schedule for that frequency. (note: so that Buffer would accept my new twitter account, I had to follow a few people and also gain a few followers–so be prepared to have a few friends who will be willing to follow you):Buffer schedule
  3. Sign up for IFTTT to create a ‘recipe’ to publish your content to Twitter.  In IFTTT, select the option to create a new recipe.  It will then ask you to define the following:
  4. If This: For your This, choose for the trigger to be Twitter, and then select for it to search for usage of the word lame:Trigger screenshot
  5. Then That: Select Buffer at the service, and then edit for the following content to be added to Buffer, to create an at-reply to the users who are using the word lame in their tweets: Buffer instructions
  6. After creating your recipe, select the option in the Upper Right corner to “Check Now” and then toggle over to Buffer and check if your tweets are populating:Buffer schedule
  7. A few other notes:  I linked to a few articles in my new twitter feed account that raise awareness about ableist language.  I am hopeful that this will educate people who receive @replies from my bot.   Also, I’ve already managed to piss off a random person who received a reply from my bot.  I suspect that this will happen fairly often, and I also suspect that Twitter may shut down the account, once it becomes obvious that it’s behaving as a bot and @-replying people that I don’t follow.  I’ll report back if/when it’s shut down…

What a difference a day makes…

It was 30 years ago today that I was diagnosed with bone cancer.  I shared that story with my daughter as I drove her to school this morning, not realizing that I’d never told her before how it happened.

My life completely changed that day, and in the days that followed.  On the 21st I was diagnosed, on the 22nd I had biopsy surgery, on the 23rd I learned that I would lose my leg, on the 24th I had my first chemo treatment, and on the 25th I celebrated my 13th birthday by sipping 7Up and puking birthday cake in front of friends and family.

I remain amazed that I am still alive and relatively healthy, three decades later…

2012 Retrospective #1 (finances)

I’m planning to do a series of reflective posts about last year.  It was a big year for me, primarily because it was my first full year being divorced.  What that meant for me was that it was my first full year on my own, where I was financially and physically responsible for myself and my kids.

That’s a lot to grapple with.

Perhaps the biggest challenge of being on my own was managing my own finances.  First, I set up a rough budget and tried to live with that, being careful of my spending.  I was fortunate to find a very affordable home for our family, which made living within my means easier than I’d feared it would be.  There were many financial unknowns on the horizon for our family and I also had to pay full tuition for my last few quarters of my PhD program, so I had to be quite careful with my spending.  I found that the (free!) software helped me to keep tabs on all of my accounts, debts, and assets quite easily.

The next step was that I anticipated how much I would owe the government and adjusted my tax withholding accordingly (and was so close in my gu-esstimation that I owed less than $200).  I then filed my taxes on my own (with a wee bit of help from TurboTax), which was a bit complicated because of divorce-related entanglements, but I managed to figure it out and also, several months later, I managed to convince the IRS not to audit me when they questioned my status as Head-of-Household(!).

My employer offers free retirement consultations, so I set up an appointment to ensure that I was taking full advantage of my employer’s matching contributions, and also to discuss how much additional money I should be putting away each month.  While I could definitely be doing better in my long-term savings, I saw a significant increase in my retirement account this past year (it more than quadrupled), so I feel satisfied with my efforts in that arena.

Overall, while there were some facets of my finances that still warrant improvement, I’m calling 2012 a success.  I sat down and crunched some numbers a few days ago and realized that I began the year with a negative net worth, and am ending it in the black–and all of this while supporting my kiddos well (and even paying for my son’s first semester at a private college).  Whew.

I know, all too well, what it’s like to not have paycheck-enough to stretch to the end of the month.  I know, too, how careful I still have to be with my finances so I can keep my bills paid and not feel stressed by those expensive emergencies that crop up now and then.  Also, I recognize just how precarious my own financial stability is in today’s economy.  But…even as I realize that, it’s a good feeling to mark 2012 as being the year that I established a strong foundation for my future financial security (and for that of my children, too).

Photo of my daughter, when she was about 3 or 4 years old.

better than able…

When I go through the “TSA personal massage” process, the agents giving the patdown are usually skeeved when they feel my right calf and foot, which are textured to feel like real flesh and bone.  I’ve been told that it gives them the “chills” to feel something so real and know that it’s not.  Or, as has happened more than once, they assume that my titanium thigh (which is evident as hard metal even through clothing) is somehow connected to a real flesh-and-bone knee, calf, and foot).

From Cyborgology:

This may or may not be so – it’s difficult to be sure, in what are arguably still early days of this particular kind of human augmentation, but again, I would take this a step further: that, as both Jenny and I have argued, what makes us the most uneasy right now about human augmentation is the idea that it might make people – especially people with disabilities – better than abled humans. We can usually stomach humans with close relationships to objects and machines, provided they don’t begin to transgress the boundary that not only delineates a category but defines that category as an ideal.

I don’t yet have bionics that rival an organic limb, but I welcome that day and I assume that it’s not far away.  For now, my fake-leg-wishlist includes the ability to add a wifi hotspot and a USB port for charging my phone.  I’m not far off from that goal, either–my awesome friend Scott has already built up a prototype of the USB-adapter leg with my old bionic knee.

And once that’s in place I suppose that I’ll even let my friends charge their devices off of my battery once in awhile.  Because I’m nice like that and I feel a little bit sorry for the rest of you that don’t have awesome bionic peripherals like mine.  😉

going the distance…

I spent this morning in the ocean with some coaches, getting tips on my long-distance swimming.  I’m new at this, so I had a lot to learn, and it was incredibly generous of these folks to offer their time to help me.  It was arranged via the Challenged Athletes Foundation (CAF), for disabled athletes who are preparing for triathlons and need open-water swim skills.*  This is the first time that I’ve worked with CAF and it was an interesting experience.

First of all, I want to emphasize how appreciative I am of the experience and how responsive the coaches were with me, not knowing me beforehand or being confident of my swimming ability (and, I did choke a few times out there–I’ve never tried to swim for distance in the open water and it was tougher than I thought it would be).

What made me feel the best was when the coaches critiqued what I was doing and challenged me to do better, rather than when they took it easy on me.  For example, for the first 30 minutes or so I simply couldn’t get my head in the water–it was so cold that every time the water closed around my ears I couldn’t breathe.  It was probably partly from the temperature and partly from my own nervousness at ‘seeing’ what was underneath me with my goggles on (I never really want to know what’s down there) that I struggled with this.  And there was also an element of fear because I didn’t know how to swim straight with my head in the water–how was I supposed to see the turn buoys up ahead and aim for them?  But one of the coaches helped me to focus on bringing warm air into my sinuses before I rolled my face into the water, and blowing that out more actively which each stroke rather than holding my breath.  By doing that I was finally able to get my head in and make progress (it was also much less exhausting than trying to stroke with my head out of the water).  And, by the time two hours had passed, I’d put in some really good laps out on the water and had improved markedly.  By the end it was pretty easy to swim the length of the Newport jetty and back.

Perhaps the most important thing I learned from the experience: if I’m going to spend a lot of time in the water I’m going to need a wetsuit (despite my confidence that I already spend enough time in the ocean that I’m acclimated to the cold water temperature).  It took more than an hour after I returned home to get warmed up again after my time out there–my fingers and toes were still numb long after the rest of me was thawed out.  I’d also like to find a swimming buddy who wants to make a habit of early-morning ocean swims.  Once I have a wetsuit I could imagine that this would become an important part of my training regimen.

And finally:  as I was walking back through the waves to the beach (and struggling a bit to get my feet under me in the shifting sand), one of the coaches scolded me a bit:

“Never turn your back on the ocean,”  she explained.

I realized in that moment that I had no fear of the waves coming up behind me.  I laughed it off–telling her that if I fell in, there was hardly any damage done (I was already cold and wet).  And while I’m sure her advice was sound and I should keep it in mind for times that I’m alone, but I like the surprise (or anticipation) that comes from letting the ocean pummel me a bit.  I rarely feel more alive than when I’m being rocked to and fro by the rhythms of the water…

*I’m not necessarily prepping for a triathlon, but I am in the midst of setting some ambitious athletic goals and this morning’s swim was part of that process.

why I stopped taking PPIs for gastric reflux

This post feels a bit like a PSA rather than a typical pilgrimsteps post.  But I wanted to share my experience with PPIs just in case it might be of help to some of you….

Last year I struggled to paddle because of severe back pain that was due to some problems with my prosthesis.  But it wasn’t just back pain, it was horrible painful muscle spasms that I had in my back, but also happened just about anywhere whenever I exercised vigorously.  My muscles just simply didn’t seem to be responding well to exercise–I was continuously fatigued and got cramps easily no matter what type of supplement I tried.

As a result, I quit paddling about halfway through last season.*

It wasn’t until a few months later that a lightbulb went on in my head as I talked with a friend about my chronic gastric reflux problems.  She told me that long-term use of over-the-counter PPIs did have long-term side effects (despite my thinking that they were nearly-benign meds) and that one of those was mineral loss.  I realized that the muscle cramping symptoms that I was experiencing were quite similar to the problems I’d had more than a decade previous when I was calcium deficient.  Given that I already have the double-whammy of bone density loss from being female and from having had high-dose chemotherapy, I started to become nervous about my dependence on PPIs to get me through dinnertime (it was almost always dinner that gave me problems–causing acid reflux for hours afterwards).

So…I stopped taking the PPIs cold-turkey and modified my diet as much as I could to compensate (such as no citrus or tomatoes and more yogurt).  Within a few weeks my acid reflux symptoms mostly disappeared–with only an occasional flare-up during stress.  And I found that I regained my muscle endurance fairly quickly after that.

I know that PPIs are necessary for many people and I’m not suggesting, necessarily, that you do what I did and stop taking them.  But I think it’s worth reading this recent article that warns of their side-effects, and to consider whether they are drugs that you really do need to be taking regularly.  In my case, I think the PPIs caused me to exercise less which exacerbated my reflux and led to weight gain (weight gain being one of the major contributors to reflux issues).  And I needed to get off the PPIs to I could become more active and healthy again.   My hope now is that the year I spent taking them won’t result in any long-term effect on my bone density.

*Additional motivation for quitting mid-season was due to some problems with my coach and the need to focus on my studies.  But the major reason was that I was in terrible pain each time I tried to paddle, I and I simply couldn’t figure out why my body was hurting so badly.


Monday morning I found myself in Zurich, as an unexpected but pleasant detour on my Europe trip. It was the day that the full force of jet lag hit me, so I was walking around in more than a bit of a mental fog. Fortunately as I breakfasted with a local friend (@chanson), she showed me the sights without my having to think too deeply about where we were headed…

And for lunch I met with a friend that I hadn’t seen since I was 14–someone who knew me when I was diagnosed with cancer, lost my leg, and underwent chemotherapy. I asked him what he remembered about that time because my memories are so dim and fragmented. We talked a bit about what it was like as I lost my hair and became sicker and sicker.

“it was just so sad, we were all so sad,” he said.

Then he recalled a clear memory of seeing me in the hallway at school one day, when someone was carrying me because I was too weak to walk. He said that even though I had to be carried around the school, I was happy.

“You were always happy,” he affirmed. And then the conversation moved on to a different topic.

It wasn’t until later that evening, long after I’d moved on from Zurich and was on the next leg of my trip through the Alps, that I remembered that May 21st, that Monday that I met up with my friends, was the anniversary of my cancer diagnosis. 28 years ago. 1984.

Lots of tough things have happened since then…many long dark nights and many days filled with fear. But I’m still happy and expect that I always will be.