The Gangway Adventure

We’re back from our cruise vacation, and I’m happy to report we did not have rough seas so I was not swept overboard, folks were very nice, we did not get sick with some heebie-jeebie stomach virus, and we didn’t end up wrecked onshore a la Costa Concordia.

I wish I could report, though, that I handled my mobility frustrations with charming graciousness, but I did not. I succumbed to tears several times because my rage at the inability to “do for myself” got the better of me. I did not like the fact that for nine days I was unable to be as independent as I usually am when at home in my familiar environment.

After a while I calmed down and looked around me. There were other folks onboard who used scooters, wheelchairs, walkers, canes, and other mobility devices, and they were actually smiling! They were having fun! What a revelation! So, armed with this new possibility, I became determined to also have a good time.

And you know what? I did. I can’t say it was the easiest vacation I’ve ever been on, but the pre-planning paid off. Where I anticipated trouble before the trip, I circumvented it by advance preparation. When I was blindsided by something unforeseen, I overcame it by adapting to it. Like my husband said when asked how we did:  “We had some difficulty here and there, but we worked through it.”

Actually, I guess that says it all whether you’re handicapped or not. Living your life is a matter of sometimes just showing up. Difficult things will get resolved one way or the other. I found out that it also helps to be creative with those resolutions. Don’t even ask how we put to use a wall-bolted, glass-framed picture with my hand-held, suction-cup gripper! You wouldn’t believe it.


Hair I Am

So. I’m getting ready for our anniversary cruise vacation this week. My stress level is astronomically high. I’m beating down visions of all the things that could go wrong. My better angel is perched on one shoulder pooh-poohing any sign of calamity, while my devil angel is smirking on the other shoulder with anticipatory glee regarding the pitfalls of travel.

BA (Better Angel, who is always female) is calming me down with visions of smooth seas, good food, pleasant fellow travelers, and easy disability access to things. DA (Devil Angel, who is always male) is showing me panoramic vistas of doom: rough seas where I, in my wheelchair, am swept overboard, poisonous food where trips to the bathroom are impeded by distance, snarky dinner companions who will be rude and impatient with me, and barriers to movement onboard wherever I look.

Now, you may be thinking that I’ve got to get a grip. Cruises are notorious for being handicap friendly. BA also reminds me that I am not the only person who is in a wheelchair. DA puts his two cents in by telling me that while I am not the only person in a wheelchair, I’ll be the only person onboard who will have multiple embarrassing incidents: backing into people, running over their toes, knocking tables over. Well, maybe even I couldn’t do that last one…but you never know.

All this flipping back and forth in my mind led me to think about dyeing my hair. Currently, I have hair that is shot through with experience and maturity. I’m thinking I’d rather tell folks I have a chronic illness than to have them think I’m in the chair because I’m OLD. Vanity, thy name is Jan.

My third  angel, Logical Angel (who is sexless and floats in front of my eyes and usually is a source of wisdom) told me to leave my hair alone. I did, and anyway, in anticipation of the vacation, I bought a really cool pair of red-framed glasses. How chic is that? I’m also borrowing a pair of stiletto heels (tres very chic). If I have to have gray hair and be in a wheelchair, I might as well make a statement. BA, DA, and LA will just have to silently go along with me for this ride.


Channeling My Inner Superhero

I’m still training my Dragon voice-recognition software. It’s become a mental contest now between me and the little guy (or gal) who lives in my computer. So far he/she is winning. I’m not advancing very far in my understanding of exactly how this software works.

For instance, I’m still typing this essay one-fingered because I can’t seem to make Dragon work with writing in this blog format. Yet, when I was working on a document in my Word program, I was easily able to voice command it to type there. However, it’s not perfect. It’s still adapting to my voice and not all my words are translating properly.

I was happily going along “speaking” my biography of a local, early twentieth-century photographer, when, after dictating for a while and glancing away from my screen for a moment, I returned to it and found the Dragon had substituted “Viagara” when I had said the word “biography.” Needless to say, my “G” rated writing quickly had the makings of an “R” rated story. Come to think of it, it may have made the whole thing a lot more interesting. I may leave it in there just to see if anyone actually does read the final product!

I’m finding out that the learning curve for each new thing I try is sometimes difficult and frustrating. You would think living with MS would make me a paragon of patience, but instead a creeping sense of impatience has entered my life forcing me to breathe deeply more and more often just to keep me away from a sledge hammer.

I suppose  by trying to learn new things I am keeping ahead of the dreaded stagnation of mind and spirit. Adding humor to that curve is what keeps me going. Like in that same Word document I told you about:  When dictating further along, Dragon popped in the word “Batman.” I’m not sure what I spoke to make that word appear, but I’m going to think a psychoanalyst also lives in my computer. He/she may be trying to tell me that sometimes you have to be a superhero just to get through the day.

Oh, all right. Score one for the computer.


What’s in an Acronym?

When I first created this blog, of course I wanted a catchy name for it. Because MS has fully consumed my life, I thought everyone who saw the title would know exactly what it was all about. This was very narrow-minded of me because I’ve since found out “MS” can represent many different things.

For fun, and because I have way too much time on my hands, I looked up the term “MS” and see what the search uncovered. Imagine my surprise when I saw that there were 269 possible acronyms, abbreviations, shorthand or slang for the term. For our discussion here, I’ll relate a few that could be used in my future posts:

Many Symptoms, Most Significant, Management Science, Master Slave, Moral Support, Minor Setback, Mighty Spirit,  Morning Stiffness, and one from a fellow MS blogger – Many Surprises. 

If I’m in a particularly feisty mood against the medical establishment, I may write about the Mad Scientist, the Mess Specialist, or the Millions Shafted. No, that’s too harsh. I’ve got hope that someday I’ll write Mystery Solved. Then I’ll bless the medical community and Big Pharma.

So, in conclusion, I hope when folks see my site,  thinking that it could be about MicroSoft or Martha Stewart, they won’t be disappointed because I know very little about computers and even less about crafty home touches. I’m very definitely Missing those Skills.