The Importance of Being Aimless

It’s not as if I’m a prisoner all winter. Even in the cold months I manage to leave the house often, either in my minivan or by negotiating the neighborhood snowbanks in my wheelchair. But travel becomes purely utilitarian. It’s about getting from point A to point B in the least painful way.

Today, I set out with the intention of picking up a prescription at the pharmacy. My wheelchair was set in high gear so as to minimize time spent away from the house, and my mind was singularly focused on the task at hand. But only seconds before being engulfed by the sliding glass doors of the supermarket, I had an epiphany.

For the first time since, I don’t know, November, it was pleasant enough that I could stay outside simply for the sake of staying outside. I spontaneously morphed into summer mode, where it’s perfectly acceptable and generally advisable to take the scenic route. So I did just that, and it was cathartic. (I hope that my spontaneous metamorphosis did not frighten any bystanders.)

For the next six months or so, I shall endeavor to be aimless whenever possible.

Here are some pictures from today’s wandering:

One of several walking/biking paths near my house.


My view of Maine’s largest city, Portland, as seen from South Portland, near my home. Note how the buds are just now emerging on the trees.


And for the first time this year Kim drove her Vespa to work. I didn’t get a picture this morning, but here’s one from last year.

Book Recommendation – “The BS Of My MS” by Lauri Wolf

A couple of weeks ago I received an email from Lauri Wolf, whom I had never corresponded with before. She indicated that she had been reading my blog, and proceeded to quote me from a February post where I lamented the lack of attention given to PPMS in the literature.

"…there’s very little in print that gives more than a passing mention to my particular type of MS…Going forward, if you find any new and interesting books on MS, please let me know."

In her email, Lauri indicated that indeed she did know of a new and interesting book on MS, because she had just published one on April 1. In her book she chronicles her experiences with PPMS, the particular variety of MS that she and I share. I immediately went to Amazon and purchased the Kindle version. When I finished reading the book I wrote this review at Amazon.com:

“Lauri Wolf has written the MS book that I've been waiting to read.

Like me, she has primary progressive multiple sclerosis (PPMS), a particularly disabling form of the disease. Unlike the more common form of MS, relapsing remitting multiple sclerosis, PPMS has seen no medical advancements. Ms. Wolf spent her career as a pharmacist, but is no longer able to work in that capacity. I believe she has found her true calling as a writer.

‘The BS of My MS’ chronicles her life challenges since being diagnosed some 14 years ago. Not only has she battled a creeping paralysis that has rendered her a quadriplegic, but she has dealt with other medical conditions, parenting challenges, marital struggles, and depression. But through it all she has emerged an emotionally and intellectually stronger person. Her secret? It's all about attitude. For example:

‘Beyond intelligence and common sense, I think the most important survival trait is a good sense of humor. I don't take myself too seriously and can laugh at myself. I allow myself some leeway, a margin of error, and make sure it's okay to fumble. If I didn't, I would be certain to disappoint myself often.’

Her writing is straightforward, brutally honest, and unembellished. It's the style of writing that draws you into the narrative and ushers you through the pages as if by absorption rather than through the conscious act of reading. I recommend this book especially for those dealing with chronic diseases, but also for anyone interested in reading about the triumph of the human spirit. I've read a lot of MS books over the years, but this one is now at the top of my list.”

And I meant every word of it. To visit the book website click here. To order the book at Amazon click here.

Thanks, Lauri, for sharing your story with us. I know you’re already working on book number two, and I look forward to its release.

What Do I Do All Day? I Blog

Obviously.

Why do I do it? It feels right. For example:

• I am productive, creative, and sometimes even influential when I blog.
• I become engaged in life, as opposed to dispassionate about life.
• I feel that I am sometimes helping people when I do it, and this makes me all warm inside.
• Against my better judgment, and despite the knowledge that I should not base my happiness on the approval of others, I relish the positive feedback I receive.
• I am networking and meeting people when I do it, and this satisfies my modest need for human contact, much of which had been lost when I stopped working.
• Since I’m an introvert, and rarely initiate communications with others, this is a way for me to update friends and loved ones about what is going on in my life and/or in my head. This way, I need not take any drastic action like picking up the phone and calling someone. Oftentimes even Kim learns what I’m thinking through my posts.
• I’m able to learn useful and interesting things from readers’ comments and emails.
• I’ve become introspective through the process of collecting, organizing, and acknowledging my thoughts and feelings before I write them down, as opposed to running on emotional autopilot (which I am prone to do at times). I’m not certain, however, that this is always a good thing. Ignorance and denial have a certain appeal in the world of the chronically ill.

My Process

I sit by the ocean and wait for inspiration to strike. No, not really…

I have a Microsoft Word file where I keep all of my future posts, half written posts, poorly written posts, and posts I may never post. I try to publish at least once per week. To meet this goal I begin formulating my post on the weekend or early in the week, whenever an idea emerges from the recesses of my brain, or maybe from something I read, heard, or watched.

I go to my Microsoft Word file, and I start writing, which for me is actually dictating using a program called Dragon Naturally Speaking. My first pass is sometimes just a collection of random ideas, or it may be a lengthy narrative. But either way, it’s utterly unreadable and suitable for my eyes only. Then, over a period of a few days I keep going back to the piece several times a day and make another pass at it, each time improving it a little more. If the piece is long, I try to cut it to below 1000 words, or under 800 words if I can. Interestingly, this paring process usually improves the quality of the piece at the same time it reduces the quantity of words. I try to take the perspective of the reader. Am I being clear and unambiguous? Will the reader give a damn about what I am writing? Can I be more succinct?

I usually post in the evening. Earlier in that same day I put the finishing touches on my writing. Sometime after dinner, when I think I have it ready for publishing I email it to Kim, who is likely sitting on the couch about 5 feet away, for review and proofreading. It’s funny, even though I may have read over a piece twenty times, Kim can find a glaring grammatical error that I missed in each of those passes. It’s a classic forest and trees situation.

Once Kim has helped me find any errors, awkward sentences, or outright lies, I make the final edits in Microsoft Word. I then add graphics and hyperlinks, and generally jump through a bunch of hoops to get the product from Microsoft Word to my blog page.

When I’m ready, I click the Publish button, and the post goes live.

I have a couple of programs that I use to monitor traffic at my website. Don’t worry; I can’t see your name, IP address, or what you are wearing when you visit my blog. But I can see where you are visiting me from, and how you got to my website (Google search, hyperlink from another website, Facebook, etc). I particularly enjoy the comments and the emails that I receive from you. Keep them coming. Don’t be shy.

Thanks for being a reader.

(726 words)


This is the sixth in a series of posts about how a disabled person like me passes the time at home, now that I no longer work.

Here are my other posts in this series:

1. I Watch (mostly) Quality Television
2. I Digitize and Archive Family Photos and Videos
3. I Read Books
4. I Attend Courses at Top Universities (sort of)
5. I Nap
7. I Read Other People's Blogs

Thought control of robotic arms using the BrainGate system...

Life with paralysis is going to be better in the not so distant future. Thanks Stu for sharing this story. Click below.

** Stu's Views & M.S. News **: Thought control of robotic arms using the BrainGat...:

What Do I Do All Day? I Nap

This is the fifth in a series of posts about how a disabled person like me passes the time at home, now that I no longer work.

“Are you serious Mitch? You expect me to read a blog post about napping, and not fall asleep myself from boredom and disinterest?”

Challenge accepted! This will be THE MOST INTERESTING blog post you have ever read on the subject of napping.

Approximately 80% of people with MS suffer from disease-related fatigue. I’m one of them. In addition to the MS fatigue, as a person with limited mobility I have difficulty remaining comfortable throughout the night in bed. That’s another reason I am tired during the day.

Before MS I never, ever napped. But now I’ve gotten the hang of it. I can take naps between 15 and 30 minutes long once or twice a day while Kim is at work.

One tool that has made napping easier for me is my Invacare TDX SP wheelchair, which I use most of the time when I am inside the house. Here are some pictures of me assuming the napping position.

First, I have to silence my TV, laptop, iPad, and iPhone, and then I put a pillow behind my head.



I recline to a comfortable position, even though I could recline even further if I wanted to. Note that the 90° angle between my legs and my back is maintained throughout the reclining operation. My occupational therapist who helped me obtain this wheelchair said that I couldn’t get the flat reclining feature because I had no particular back problems. Maybe next time I’ll go for that feature. But this is pretty darn comfortable as is. It’s like I get to spend all day, every day, in my own mobile La-Z-Boy.



I lift my feet up a little bit, even though I could lift them further if I wanted to. I take one last look at the clock because I want to know when my nap started, and then I close my eyes.



I lie there until a little alarm inexplicably goes off in my head, and my eyes suddenly open. I then check the clock to see how long I napped. I sit back up and choose one of the other What Do I Do All Day? activities, now slightly rejuvenated.

How’d I do? Are you still awake?

Here are my other posts in this series: 
    
1. I Watch (mostly) Quality Television
2. I Digitize and Archive Family Photos and Videos
3. I Read Books
4. I Attend Courses at Top Universities (sort of)
6. I Blog
7. I Read Other People's Blogs