Life without major relapses

It’s been about 2 years now since I had a major relapse (meaning weeks and weeks of more severe symptoms). This is huge — it means that I am willing to take risks like signing up for a work trip, taking on something larger at work, and being more responsible for things at home without a backup.

Most recently it meant I could say yes to being on a program committee, a work event that I have not been able to participate in much over the last few years because I have restricted my travel to (mostly) no plane flights, and (mostly) no time zone changes. In other words, it means I can live my life a little bit more like I did before lyme, before 2006. But does it mean I am cured? 

Training a service dog

I had my first session with a private dog trainer to explore what Gryffin could do to be of help to me. I have my work cut out for me! Here’s what we discussed:

• Retrieving things: Gryffin could help pick things up and bring them to me when I need them. One of the most important: Getting my cane if I realize I need it and don’t have it handy (since I am often just fine, and sometimes have very rapid onset problems, getting a cane and/or a jacket for me could be quite valuable). To help him learn this, I have two first steps: For things that have names, begin teaching the name by putting a treat on it and saying “find name” (for now). For things that don’t have names, he has to learn to pick up first. So I need to give teach him to “take” “hold” and “give” a variety of items with treats. Eventually I’ll be able to point at something or name it and tell him to pick it up and carry it back to me, and maybe even send him down the hall to my office for my cane or jacket if I need it.
• Finding people: This is useful when I am tired and want to ask one of the kids to bring me a drink of water (for example). Teaching it relates to the find part of the last thing. I’ll teach him the name of each family member, and to go to them on command. Eventually we’ll teach him hide and seek and other fun games so he can get someone if I need him to.
• Closing and opening a door: This is useful because I often need to close my door (for private conversations or a nap) and open it (when someone knocks). When I’m feeling tired, it would be nice not to have to get up to do this. To learn closing a door, he first need to learn “touch” which is to push agains something with his nose. Eventually I transfer this to a door by literally taping the thing to the door and letting him practice touching that. Opening a door: This will build on “take” and “hold” by attaching a rope to the door, and teaching him to back up while holding it. Eventually I’d also like to add turning on and off the office light to this.
• Carrying things: He can carry about 1/8th of his body weight, which translates into one laptop and cord on the way to class if I’m having a bad day. Right now we will work on wearing a backpack, and eventually add water bottles for weight.
• Behaving in public: Lots of effort needs to go into this. He still isn’t a great heeler, and he tries to nose new people. He needs a down stay that is totally reliable. And he needs to learn “quiet” which I will probably teach him partly by teaching him “speak” on command :).
• Equipment: My trainer feels it’s important for him to wear a cape to limit attention when he’s “working” at the workplace. I am going to probably transfer some badges I have (“In Training”) and (“Working Dog”) to his backpack so I can use that as his cape. Eventually she recommended getting a handle for balance in those moments when I need it.

I don’t expect to need his help most of the time, but at the moments when I do, it will be a relief to have his help with all of this. And so far he loves every minute of the training, especially when it involves treats!

Disability Accommodations?

I have spent the past two weeks exploring what it means to work with Lyme disease from a new perspective. I’ve blogged before about why I think it’s valuable to view Lyme disease through the lense of disability. I’ve also blogged extensively about work and Lyme disease. However, I’ve never really put the two together. An important question, for those of us who work with Lyme disease is what accommodations, if any, are appropriate to ask for, and how one might go about doing that.

First, it is important to know about the Americans with Disabilities Act (ADA), which protects people with disabilities from discrimination. The ADA specifically prohibits discrimination by employers with 15 or more employees, public entities, public accommodations, telecommunications, and so on. It was passed in 1990 and progressively narrowed by the courts in terms of the situations to which it applied. Thanks to an amendment in 2008 it was broadened again to ensure that it focused on discrimination across a wide range of disabilities. Because of that change, Lyme disease is now covered by the ADA. 

How does all that misinformation online affect Lymies?

I have been working toward this for two years now, and I can finally talk about the work we’ve done with the help of many volunteers. My paper, “Competing Online Viewpoints and Models of Chronic Illness” will be published at the premier venue in my field, the 2011 conference on Computer Human Interaction. For those of you with a medical background, in my field, this is equivalent to a journal publication in impact. Needless to see, I’m very excited to have finally gotten the work to this point, and extremely grateful to all of my co-authors, who helped me with every aspect of the research and writing, and all of the lymies who helped us to collect the data on which the study is based. I could go on for a long time about the personal accomplishment this represents and what it means to me (and I may in another post), but what I want to do here is say a little about what we did.

I am not a doctor, and however much I would have liked to do so, I am not qualified to conduct research that can identify a cure or otherwise directly affect the medical experience of individuals with Lyme disease. Rather, my area of specialty is information technology, and how people interact with it. Because of this, my work focused on how people with Lyme disease use online information in the course of their illness. I specifically wanted to understand how people negotiate the competing viewpoints present online (consider the contrast between the IDSA/Mayo Clinic/CDC/Wikipedia style information and that found on websites such as CALDA and ILADS). I knew that I personally had encountered both sets of information when I was diagnosed, and as a result I ended up putting my trust in doctors who did not treat me correctly. In my study, I wanted to document what happened to others, and identify possible solutions to any problems we discovered. My next step will be to begin to implement these solutions.

So what did we find? We found many examples of people who grappled with the mix of information online. Surprisingly, the kind of information that people trusted seemed to be affected by their diagnosis experience/initial beliefs about Lyme disease:

Getting off the banks

For years now, I have been (on and off) on the bank, resting among the soft moss and watching the river go by. I stepped to the side for a few months when each child was born, and again for longer as my illness progressed. I’m not sure just when it happened, but I no longer know the literature in my field inside out, I don’t know the people by sight and some not even by name, people I do know have have moved. The river is moving onward and I’m left behind.

Personal limits

Not a lot phases me and I generally don’t care how people judge me, my clothing, my cane, and many other things … But a few things, I’ve discovered I am very sensitive about. Some I have been lucky enough to avoid (such as using a wheelchair — I decided not to get one, but exploring that issue led me to my invaluable flipstick cane). Others are harder to escape, such as cognitive impairments (and perhaps, though it’s hard to know given how fresh it is, the idea of having a relapse).

Last Sunday, I gave a talk on my lyme work in a (friendly) audience of about 140 people who care about health and wellness informatics. The talk went well, and the questions too, up until a long-winded, two part question. I planned my answer as the speaker spoke. He finished, I responded: “In our experience… [here I realized I had forgotten his question and my answer… so I stalled for time] … we found that… [now I know it’s not coming back easily] … give me a second please.” I pause, flustered and unsure what to do.

Are you disabled?

People with disabilities are a unique minority, a group that any of us can join at any time. I first identified with the group as a graduate student in the 90s when my hands were so non-functional that I had trouble doing many basic things …  and no one could tell me if/when I would improve. Thanks to the advocacy of many individuals with disabilities, the Americans with Disabilities Act, (and related legislation) has set accessibility standards [1], and I soon learned, for example, to press the automated door-opening button at the front of my university building.

I will never forget the day that button failed me: A stranger became very angry on my behalf, opened the door, and went on to complain to the building manager. I was shocked, upset to think of myself in the terms he obviously did. I had an invisible impairment that, at the time, some people did not believe existed (echoes of the future!). Although I was high functioning, it had eliminated my ability to play the viola (a beloved hobby) and, from the perspective of a graduate student in Computer Science, seemed to make my career of choice next to impossible.