Poetry of Disability

As Disability, MS, and other similar Awareness Months draw to a close, I thought this would be an appropriate time to share a in a different way. Describing how MS really affects me can prove difficult, outside of a list of concrete symptoms. So how does one communicate this? How about poetry?

National Poetry Month begins on Monday, so it’s time for poeming and pondering.

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“Scars” by Angela Knight

MS

Multiple Sclerosis.
Many Scars.

a Misbehaving System is what I call it.
You can call it what you wish.

Cells that should kill germs harm others instead, and what do they leave behind?
Scars.
What do they take away?
Energy. Control. Ability. Freedom.

“It’s all in your head,” you say.
And I agree.

With scars in my head,
I sometimes wonder what’s left.

Besides scars.

But then I hear an inner voice, one of assurance:

“Scars are not alone. When you look, you’ll find unexpected gifts:
The gift of Empathy to offer an ear to hear of invisible pain, filled with frustration and hard to see with the outer eye.
The gift of Peace beyond understanding, easier to feel when busy-ness is forced aside and stillness found.
The gift of Love you’ll feel as dear ones see through and beyond your scars, and the truest love, shown through one whose scars bring new life.”

MS

Multiple Sclerosis.
More than Scars.
That’s what I call it.
You can call it what you wish.

Not sure I’m “Cool,” but I can try…

“Be Cool. We Are!” An intriguing theme for Indiana’s Disability Awareness Month. I do encourage you to take a look at this message, shared by individuals with varying struggles. Governor Holcomb kicked off the month with support, and I appreciate the words he shared. What does it mean to be “cool”? To be “comfortable in your own skin,” he suggests.

As we face disability, either through experience or observation, it inevitably causes us to feel uncomfortable. As I have gone from starting to use a cane fifteen years ago to gradually using other methods of physical support, I have gradually learned to be comfortable in my own skin, so to speak. I first felt that my cane flashed neon lights, then that a walker screamed of weakness. But as a person facing disability, I have certainly learned the importance of helping others like me feel less awkward. A smile and positive words can work wonders. My cane didn’t glow, my walker didn’t scream, and my wheelchair was just fine.

Some disabilities appear outwardly, others are less obvious. When they appear more obvious, I appreciate the Governor’s Council’s advice: “Be Cool. We Are.” Sounds like a good plan! And for those with disabilities that are more hidden (but just as real), this theme may give reason to contemplate… what hidden limitations are faced by those around me? Whatever they may be, I’ll try to be cool.

A new start -Angie’s blog returns!

Happy 2019, friends! It’s been entirely too long since I have posted to this blog. Am I still battling “invisible issues,” you ask? Hmmm… will there be snow in January?

Yes, life with disability leads to paths I never would have foreseen. MS may not be a walk (or stroll) in the park, but blessings still come our way. Though I’m not one for “New Year’s Resolutions,” I do wish to give my blog a jumpstart of sorts. I intend to post at least twice a month, sometimes more. Topics ahead include our “Knight Rider,” driving decisions, my Ocrevus experience, caregiver challenges, chair that offers a lift… and definitely National MS Awareness month and National Poetry Month

So why “Queen Anne’s Lace” on my cover page? For one thing, it’s one of my favorite wildflowers. I also love how it pokes up where it wasn’t planted, sometimes considered a weed. I’m convinced that people would pay good money to grow this bloom if it weren’t so common. I find blessings in this flower that was not purposely sown. In a similar way, I wish to bring attention to blessings that may be found despite very real struggles.

So let the blog begin!

Gen Con 50 – View from the Chair (days 3 and 4)

 

Yes, Day 3 of Gen Con came, and though the numbers were technically not larger, it seemed more packed, I think. Yesterday ended later for us, but for a fun reason, as T.R. attended an awards ceremony for the ENnies, the EN World RPG Awards. His “Cyclopaedia” blog was one of five blog nominees for an award, and though it was not a winner, two different games he assisted with did win gold and/or silver awards!

But what were those other snapshots of on Friday? The one plain shot of an elevator was a reminder of how thankful we are for the elevators and skywalks that allow us to attend events in and around the Convention Center without trying to navigate stairs or crazy twisting ramps. …We hit our first snag here, though, when Thursday evening’s elevator from the skywalk to the Convention Center was dead. And there was nobody to contact, no number to call. We ended up making our way across to a parking garage where we could take an elevator down, then walk along the city street to enter the Convention Center, once we found an entrance on that side that didn’t involve a stairway. Thankfully, it had been repaired by the time we were on the way back from our evening event.

Other events Friday included demo-ing (then purchasing) two new games. One that excited me to most was Codenames Duet, a cooperative two person version of the popular party game. Yes, it’s a neat game, but what excited me the most wasn’t just the game itself, but the fact that the convention demonstration size of the lettering on the cards was huge… so I could read it from a few feet away without problem! Though the demo sized tiles are not sold, I’m contacting the company to encourage them to make this version available! Small text size on playing cards is one of the more frustrating bits of gameplay I face, and what a beautiful solution this option could be. We shared these thoughts with those running this game room, and I will communicate with the publisher after we’re home.

One little piece of Gen Con I enjoy each year is the balloon sculpture.

 

This year’s Golden Dragon, representing the 50th Anniversary, is quite lovely. More was pieced together each day, and we could view the final celebratory piece on Sunday! (I didn’t attend the final popping.)

Bob Ross “The Art of Chill” board game

Saturday evening had also been an extra special game time, with friends gathering in our hotel lobby/breakfast area to share pizza and snacks, then play new games we had purchased – my favorite was one that is now available at Target stores. If you also grew up watching “The Joy of Painting on PBS, you also may enjoy the game where you earn points for painting fluffy clouds, happy trees, and mighty mountains.  Some of those who gathered were those who rarely meet face-to-face, but know one another via online communications through Innroads Ministries.

Sunday brought one of our favorite parts of the week, the Christian worship service. This gathering of believers to sing praise, share communion,  and hear a telling message from Tom Vasel. Though the speaker is known in the gaming community as the founder and host of the game review podcast “The Dice Tower,” he is also an ordained minister. His message was right on target with this audience. The three points (as most sermons possess) were simple:

1. Be content. (even when you’re attending an event that shows you so many games and things you “must have.”
2. Listen. In our busy world – and a busy Con also – take time to stop and listen. And Hear. Sometimes, we need reminders to stop talking, to take in messages from others.
3. Rest. This goes hand-in-hand with the previous note to rest… and no, resting does not indicate laziness, but it is necessary physically, emotionally, and spiritually.

We certainly appreciated Tom Vasel’s timely words, and after we left to join the final day at Gen Con, we prepared to meet with various people, then we had a unique, unexpected lunch that showed another way a business took an “invisible issue” seriously. At a daughter’s request, we decided to visit “The Walking Waffle Company” in the food court of Circle Center Mall. Their menu offered different meal options – the breakfast waffle with bacon, eggs, and cheese looked lovely, and the chicken waffle sounded fun. I have an unusual, rather annoying allergy: black pepper. As I do at any restaurant, I asked the gentleman taking orders if the chicken or breakfast waffles contained any black pepper. He thoughtfully responded, “The eggs don’t, but several items do, and I’m afraid pepper could  remain on the grill and leach into the eggs.” He then carefully considered and found that the Waffle Club Sandwich should work for me. Not only was he correct there, but I found a new, unexpected treat. I know that food allergies can be tricky, particularly when they’re uncommon. I do appreciate a private restaurant owner, even in a popular food court, taking the time to accommodate a silly allergy.

As we walked toward our room after lunch, a game-editing friend passed us in the hallway. John had injured his foot and was in a wheelchair (where he had not been when I talked with him on Saturday morning). “The world is different from this view – it’s quite… disconcerting.” John then described an interaction he’d had with a taller friend – about 6′ 5″ – and he said they were so far apart that he felt cut off from the rest of the world. Trying to converse with a taller friend woke him up to a different perspective.

Gen Con 50 did hold more than the snippets I described. So many neat conversations with people from around the world, here just a ninety minute drive from our home. Games and costumes and celebrations and more. But me? My “battery” is such that I took a nap each afternoon, while the rest of the family worked at a booth each afternoon. I enjoyed and appreciated the experiences I had – Nice job, Gen Con 2017!

 

 

 

 

 

 

 

 

 

 

 

Gen Con 50 – Views from the Chair (day 1)

 

Today marked the first actual day of Gen Con, and we have definitely found that a bit of planning helps those “invisible issues” not be issues at all. The convention itself is sold out, and we are thankful for the tickets and reservations we got secured in advance. Even more so, I’m thrilled with support from “Special Services,” offering specific assistance to those with physical needs. Wednesday evening, in fact, I obtained a blue wristband that may help with lines and such in the coming days… I’m not certain this will have an impact on things, but we shall see.

So were things busy in the Convention Center today? Suffice it to say – yes. As in years past, we found that a “plan” helped. We had our list

Andy Looney and me

of booths to visit first, and each of us went to the booths that were most important to him or her. Em visited an artist she has gotten to know, Rach purchased a superhero book and chatted with the author as he signed it (the book was tied in with a game he wrote), T.R. directed us to the booth that sells “scratch and dent” games at wonderful prices, and me? I wished to visit the Looney Labs booth and have a pic with Andy Looney. (We also purchased the new “Chemistry Fluxx.”)

Even as we enjoyed lunch at Noodles, Inc., we found one thing to be very true: people here are kind and thoughtful, for the most part. The wheelchair didn’t seem to be a barrier, just an accepted part of life. I’ll share more tomorrow, also planning to add more photos, fun, and insights. Please let me know if you have questions you’d like to see answered.