1.24.2017

Prison Bus

Surprises:

  • finding a 40-foot prison bus for sale on Craig's List
  • the fact that the bus fit in our driveway
  • the array of artifacts left behind in the bus by the folks at the Department of Corrections
  • how fun it is to drive

I've started overhauling the interior, and should post something about that soon. In the meantime, here is a video tour of the bus in its original, person-hauling state.

 




1.20.2017

I'm Not a Bike

After riding my bike to campus today, I came across a video of this bike that has been tweaked in a variety of ways to mimic/reflect some of the more prominent MS symptoms. On my ride, I rode quickly and smoothly. I enjoyed the feel of the cool wind on my face and the subtle spray of mist. I have MS and that was my experience on my bike. The video portrays quite a different story:



While I appreciate the quality of the video itself and the effort to literalize the experience of having MS for those without the disease, there is no one "MS experience." This is mentioned in the video -- that is, the fact that the disease hits people differently -- and yet the wonky bike represents the disease with a bounded set of characteristics. 

Some with MS can't do anything even close to riding a bike. Others of us ride with ease (at least for now). This MS-altered bike is somewhere in the middle of that continuum of experience, and while I understand the impulse to make the bike and the video, the project certainly flattens the experience of having MS.

1.17.2017

What Happened to All the MS Blogs?

I started blogging in 2001, posting semi-regularly about my bus rides. Yes, bus rides. It was mundane and silly and I didn't even use a blogging platform at first (though they existed). Over the years, I've had blogs dedicated to everything from my Etch-a-Sketch pictures to building a house to found notes I've encountered on the street. And like many teachers, I've compelled various groups of students to blog about various things. So this is all to say that while I've done my share of blogging, I'm a newbie to blogging about MS.

When I started blogging about my experiences with and thoughts about MS, I had the impression that there was a thriving community of MS blogs and bloggers. There were even "MS Blog of the Year!' awards circulating. But now that I'm a year or so in (and yes, this blog had previous themes in previous lifetimes; it's only in this past year that it's really become "an MS blog"), I'm either missing the thriving MS blog and blogging community -- or it's not there.

As I peruse various MS-themed blogs, I find stories of people doing well: and as a result, they're not blogging. But there are sadder stories of others with challenges that keep them from blogging. Other blogs appear to have simply fallen quiet. As I know so well, we bloggers tend to sometimes leave our blogs over time. I wonder, is the incentive just not there when it comes to blogging about MS? I mean, YouTube channels dedicated to everything MS are thriving and multiplying. There are dozens of them. I have a few videos up on YouTube myself.


And so it is that I'm left wondering: where are all the MS bloggers? I'll have to try harder to find you.

1.12.2017

A Guy With MS Walks Into a Neurologist's Office

A guy with MS walks into a neurologist's office.

The neurologist says to the guy "So, how you been feeling?"

The guy says "Well, doctor, I've actually been feeling really good. I haven't had any exacerbations or real problems in a year and things seem to be going really well for me."

"Any symptoms at all?" asks the neurologist.

"Not really," says the guy with MS. "I mean, I have a bit of peripheral sensation stuff that is residual from previous events, but I've been feeling really good. I was having exacerbations every few months, and they've completely stopped."

"Well," says the neurologist. "It's clear to me that you need to start taking a medication."

"Really? Which one?" asks the guy.

"Any medication. It doesn't matter which one. You just need to be on something."

...............................

This "joke" happened to me yesterday when I visited my neurologists. No new lesions on the MRI. It made me think of Joseph Dumit's book Drugs for Life.

Needless to say, I didn't start taking something. What I'm on seems to be working just fine.

1.07.2017

MS Mentors

When I was first diagnosed with MS, I was reeling. The diagnosis seemed bleak, the advice from my doctors was inconsistent and troubling, and I didn't know anyone with MS. So I immediately started looking for mentors. Mentoring is funny: I think we tend to think of mentors seeking out their mentees, but in many cases it's the other way around. If you want and need good mentoring, sometimes you need to look for it.

First I found Phil, a guy in my local community who had a story that had many similarities to mine. We met, talked, and he described something that was invaluable to me: his path through this disease. Then I met Susan, a fellow academic who helped me think of useful ways to navigate the profession with regard to MS. I also talked with Sharon, a family friend with a lot of perspective on MS: she's had the disease some 40 years, has pursued a non-pharmaceutical treatment approach, and is incredibly positive.

I met with some of these mentors face-to-face and others via the phone or online. And there are others: people I've chatted with on YouTube, mainly, as there is so much sharing and discussion about the disease on that site. Every one of these mentoring relationships has been extremely valuable to me as I've worked toward sorting out my feelings, perspectives, plans, and approaches.

And today I had the chance to meet Sharon in person. She and I were called to Colorado for a funeral (my stepdad; her uncle), so it wasn't the cheeriest of meet-ups, but it was a meet-up nonetheless. I'm in my mid 40s and Sharon is in her mid 60s, and we're both doing very well. Yes, we both have this disease. And yes, we both have a few impairments. But overall we're both thriving. Seeing Sharon means seeing future possibility, longevity, resilience, and hope. It was a great meeting.

1.01.2017

Multiple Sclerosis FaceBook Groups

There are groups for most things on Facebook, and multiple sclerosis is no exception. The main (drug-promoting) MS organizations have their groups, as do a wide array of folks who are invested in alternative treatments. Scrolling through the list of MS groups, you also find an array of localized and smaller groups: "I am, love, or miss someone with MS: 50 members." "Multiple Sclerosis Smiles: 60 members." "African American Multiple Sclerosis: 23 members."

Over the past year, I've joined several of these MS FaceBook groups, stayed in a few, and posted things from time to time. Like most Facebook groups, there are distinct cultures in them all, recognizable personalities, and the occasional heavy-handed admin. Some of the groups are more serious than others, and only a few are all that active (in terms of posts-per-week).

While I can't say that I've "found the perfect MS group" on Facebook just yet, I do appreciate the way these groups transcend the dynamics of my local MS support group. The groups don't seem controlled by the admins all that much. Instead, it's just folks like you and me posting about what's relevant at the time.