“The Present” – more than a disability story

Sometimes, a short story or film will come my way, and it just won’t leave my head until I revisit it. And go again… and at least one more time. Here is one such piece of work, an animated piece just over four minutes in length. Though I first viewed “The Present” less than a week ago, I found out that it was released last year, by an animator in Germany, based on a comic strip from Brazil. The story has been translated into several languages, though it can be understood without words. It has since won awards at the presentfifty film festivals around the world. At one such festival in Brazil last November, the comic artist and animator met face-to-face for the first time. (Little side stories like this make the subject even more meaningful to me, proving that subjects like this cross generational, geographical, and cultural lines.)

Please watch this short film – it shares truths about dealing with disability more eloquently than yours truly ever will. I think I need to watch it again now, which means I need to grab a tissue. You may want one also – enjoy!

 

Marching into Awareness

AngiewalkerAh, the month of March. For the past several years, I have been highlighting MS Awareness Month, wearing my “teacher” hat as I explain what MS is (and isn’t). This also gives me the opportunity to more openly share personal struggles of living with multiple sclerosis.

You may (or may not) have noticed something about this blog during March 2016. What was there to notice, you wonder… it seemed rather absent. The irony of last year’s “Awareness Month” is that I was more aware of my confused nervous system/immune system than I had been in the previous eighteen years. After thinking it was a dental issue that caused my mouth to feel as if was being attacked by scads of tiny, flaming pitchforks any time I tried to speak, swallow, and eat, a series of tests and MRI scans led us to the discovery that a major nerve in my tongue was quite confused. I didn’t have a cavity or worse, but the diagnosis came: “hyposlossal neuralgia.” In essence, the main nerve on the left side of my tongue, allowing me to speak and swallow and such, had a short circuit of sorts.

They say that “knowing is half the battle,” but what I really wanted to know was how to function decently despite the uncooperative tongue. For almost a month, we tried different medications to help tame the crazy nerve. The craziest part of the struggle came when medication that tamed the tongue also took away the ability for my legs to move. At all. Because I appreciate the ability to do such things as go to the restroom, this was not appreciated. So… by April, things were tamed enough. But MS Awareness Month had completely passed me by. And I had visited doctor offices and MRI machines in three different cities, very aware of MS.

So that was 2016. 2017 holds different challenges and paths, as my tongue is tamed. Usually, at least. My point here: MS is unpredictable, and those who live with it are “aware,” no matter what month it is. Over the next week or so, I will be sharing about MS in general. I’ll also share about March’s other campaign, “Disability Awareness Month.” My own journey into and through the world of MS and disability is just one story, and I hope to shine a little light to increase awareness for us all.

Gen Con: chair view (part 3)

 

If you follow my blog but not T.R.’s, you likely missed part three of this Gen Con accessibility mini-portrait. As you may have read yesterday, I left Indianapolis at that time to head home and attend a writers conference at Taylor University. But Gen Con continues, going strong as four very full days create those “Best Four Days in Gaming“.

After my views from the chair, here you can find T.R.’s “Views from behind the chair.”

If others have experiences in this area, positive or negative, I’d love to hear about them!

Gen Con – views from the chair (part one)

IMG_0655

Games: a frequent theme of life in the Knight house. My husband T.R. adores games, and our family enjoys them together in many ways. He not only taught a “Game Studies” course last semester at Taylor University last semester, but he helped organize a “Family Game Night” at our church in July. One reason he and I have enjoyed more games together is simple: board and card games create great activities we can experience in full despite disability.

Over the past four or five years, he has also become more a part of the professional side of gaming. Gradually, he started volunteering for a European game company that was to have a booth in Indianapolis. Then he got to know those in the industry better, and he started freelancing, primarily as a proofreader. Fast forward a few years there, and you will find all four of the Knight Family members at Gen Con.

Gen Con, “The Best Four Days in Gaming,” will find scads of people filling the Indianapolis Convention Center, even spilling into Lucas Oil Stadium this year. Estimates predict 60-70,000 attendees this year, making this event the largest Indy tourist attraction of the year, a larger financial boost for the city than the Indy 500 or NCAA finals.

IMG_0657.JPGIMG_0652How does this affect me? We arrived early, as T.R. and our daughters spent time yesterday and today helping set up a booth, where they’ll be working for a few hours each afternoon. With this large of an event, participants also pick up tickets early. And this is the second way the Convention Center really impressed me! After dinner, we decided to see if we could pick up and exchange a few tickets, changes we had made since sign-up a few months ago. A long line, twenty to thirty minutes long, we were told, snaked through a hallway then around a group of turnstiles. We weren’t certain a wheelchair could make those turns, and T.R. saw a sign near the line’s end that read “Special Services.”

The kind, patient folks helped all four of us with our ticket switches! Being in a wheelchair may not hold a lot of bonuses, but this certainly ranked up there. If this was the second, what was the first? It came in January, when Gen Con attendees are first able to reserve hotel rooms. Because we needed to reserve a handicap accessible room, we were allowed to hold a room before the official time window opened. Proof to me that sometimes, one needs to plan ahead. And ask. Also a demonstration of the professional hospitality one can find in our great state.

I already feel more encouraged about tomorrow’s Gen Con time – you’ll be hearing from me then, as I describe my “view from this chair.”

Day 27 – Thirty Days of Thanks – nineteen years and counting

thankful2

Nineteen years ago on this date, the air felt decidedly hot. And quite humid. And very sunny. (Of course it was… it was July in Indiana.)  So what made it memorable? July 30, 1997 was the day of the official word, the day that Dr. Stevens confirmed that the preliminary June diagnosis was correct: I have Multiple Sclerosis.

Nineteen years later, this journey continues. Few wish for struggles, and I admit that I do not enjoy them, but my MS path does indeed contain pieces for which I give thanks. Today’s list will focus on that:

5 things I’m thankful for, highlighted by MS in my life:

  1. Embraced Slowness –I’ve never been super speedy (as my parents and brothers can vehemently attest), but MS has enforced a movement level that has me running races with snails, and sometimes they win. But you know what we’ve discovered? When you refrain from being speedy, you notice and appreciate things you may have missed otherwise. It can be refreshing.
  2. Connections with others –More people than I can count have contacted me for assurance or advice – or commiseration – after receiving a frightening diagnosis. This was never a lesson I had planned to teach, but I’m thankful that I’m able to step in here at times.
  3. Little everyday ADA blessings –I credit the ADA for many bits of blessing, and I am thankful for things like not-too-steep ramps, early boarding for an airplane, and special seats at the theater. I read last year that we are now a part of “Generation ADA” – we have indeed come a long way. I have an understanding here that I never would have before!
  4. Learning the blessing of giving AND receiving –For some of us, giving is a lot simpler, more comfortable, more joyful than receiving. And rightly so… but I have finally realized that by being an appreciative “receiver,” I bless the life of those on the other side of the equation. For a proud and independent type of person, this wasn’t a simple lesson, but I feel that I am experiencing this truth more fully after nineteen years.
  5. Deeper family relationships –Life as it is in the Knight house requires a level of giving, understanding, patience and love that I don’t think would be if not for challenges MS brings our way. My husband and daughters are so very special, and there are bonds within our family that have been strengthened by this thing called MS.

So “Thankful for MS”? Not today. Thankful for (sometimes hidden) blessings that abound? You bet!

 

[Note about “Thirty Days of Thanks”: I continue being thankful, but writing about days 28-30 will actually begin again August 9. As mentioned above, I am indeed slow, and my energy is limited. I will be attending two conferences, and my writing time and energy will be focused there. I love adopting a mental and spiritual posture of thankfulness, and it will be fun to bring my thirty days to a proper close!]

Day 15 – Thirty Days of Thanks – There’s no place like home

home sweet home

I wrote this on Friday the 15th, but due to craziness of luggage, laundry, and anniversary celebration, it wasn’t posted. Here it is, a tiny bit before Day 17.

Today’s 5 Thankful things – Returning home

  1. Fresh streusel – http://www.harbertswedishbakery.com/ Starting our final lake morning with fresh streusel from the nearby Swedish bakery was indeed lovely. (Thank you, T.R., for the bakery trip yesterday!)
  1. Sweet hugs from young nieces – It was nice to see our young nieces, ages 9 and 11, for an entire week. They may be similar, but they are as different as our own two daughters (more, of course, since they’re two years apart rather than thirteen minutes.) It reminded me of our girls’ elementary years, while also helping me appreciate how far Em and Rach have come.
  1. Ahhh, home – How nice it was to step into our own house. Aaaahhhh.
  1. Sleeping in our own bed – Our own mattress, sheets, pillows… so we can be home for our anniversary. Nice.
  1. A home without stairs – I don’t fully appreciate the way we designed our own home until I spend time at a place with plenty of steps. Our stairway-free house is appreciated even more at times like this!

 

Day 7 – Thirty Days of Thanks – physical

disabilitiesThis morning, as I went through normal bits of routine, I couldn’t help but notice a few very obvious snippets of life here that I was very thankful for! Why does that bit of thanks deserve an exclamation point? Well, as you may recall, my “invisible” disability is sometimes very obvious, as MS impedes my dexterity, to put it mildly. So here I’ll share some thankful things that are very real to me.

5 helpful things I’m very thankful for:                      

  1. shower seatChair in the shower – I’m not sure why it took so long for me to figure this out, but last year, my husband and I realized that a shower wasn’t invigorating me, but was exhausting me. After a time or two when I dropped down to the floor, we decided that sitting while showering was worth a try. Boy, did this help!
  1. Bars in the shower grab bars– We’ve had these for almost a decade now, and I appreciate this so much!
  1. toilet gripsHandles around the porcelain “throne” – It is so helpful to have a handhold when sitting on or getting up from the toilet. Not fun to talk about, but even less fun to struggle with when you’re stuck.
  1. Rockerrocker switches and bar light switches – I’m so thankful that our light switches are all this type, so I can hit it with an elbow or palm of my hand, rather than having to hook a toggle switch. For those who have traditional switches, changing to this type is a simple, inexpensive way to add accessibility to a room.
  1. rampSmall ramp near garden – Most of our doors out of our house are at ground level, but our back door has a small step. This was a tiny bit frustrating, but T.R. found a tiny ramp we could order to help fix this stumbling spot. Cool stuff!

Thirty Days of Thanks – Day 24 – 18  years of …

18th

Eighteen years ago on this date, it was similar to today in that it was rather hot. And quite humid. And very sunny. (Of course it was… it was July in Indiana.)  So what made it memorable? July 30, 1997 was the day of the official word, the day that Dr. Stevens confirmed that the preliminary June diagnosis was correct: I had Multiple Sclerosis.

Today isn’t exactly a celebration, though it is strangely encouraging to know that my MS can now vote… not really, I know, but it does build a more substantial “life experience” dwelling (cottage or sky scraper or sand castle, I’m not sure). I may not be in a “lighthearted” sort of spirit, but I do wish to portray a thankful one. Why? Eighteen years into my MS journey, there continue to be blessings that I see.

I will still never be “Thankful for MS,” but as I type this, I am reminded of my daughter who told me last week that she plans to “Never say never.” …to which her twin sister responded, “You do know that by saying that, you’ve said ‘Never’ twice, right?”.

So let me rephrase that: I don’t believe that I will ever be thankful for MS. That having been said, here are things am I thankful for in the midst of MS:

5 Things I’m More Thankful for with MS in My Life

  1. Needed Slowness – I’ve never been super speedy, but MS has enforced a movement level that has me running races with snails, and sometimes they win. But you know what we’ve discovered? When you refrain from being speedy, you notice and appreciate things. It can be refreshing.
  1. Connections with others – There are more people than I can count who have contacted me for assurance or advice – or commiseration – after receiving a frightening diagnosis. This is never a lesson I had planned to teach, but I’m thankful that I’m able to step in here at times.
  1. Little everyday ADA blessings – I credit the ADA for many bits of blessing, and I am thankful for things like not-too-steep ramps, early boarding for an airplane, and special seats at the theater. I read earlier this week that we are now a part of “Generation ADA” – we have indeed come a long way. I have an understanding here that I never would have before!
  1. Learning the blessing of giving AND receiving – For some of us, giving is a lot simpler, more comfortable, more joyful than receiving. And rightly so… but I have finally realized that by being an appreciative “receiver,” I bless the life of those on the other side of the equation. For a proud and independent type of person, this wasn’t a simple lesson, but I feel that I am experiencing this truth more fully after eighteen years.
  1. Deeper family relationships – Life as it is in the Knight house requires a level of giving, understanding, patience and love that I don’t think would be if not for challenges MS brings our way. My husband and daughters are so very special, and there are bonds within our family that have been strengthened by this thing called MS.

So “Thankful for MS”? Not today. Thankful for (sometimes hidden) blessings that abound? You bet!

30 Days of Thanks – Day 22 – more “everyday” thanks

thankful2

This summer continues to be filled with lots of special moments. With yesterday’s celebration of 25 years of the ADA, it brings to mind some of the things I take for granted.

Day 22 – More everyday thanks

  1. Canvas bags – We have myriads of canvas bags, most with ads or messages written on them. But no matter what they say on the outside, I love being able to carry items in a sturdy way. Many of our bags have fun memories attached… bonus indeed. 🙂

  1. suitcase
    Suitcases with wheels – I remember going to camp as a child, bringing a hard suitcase that I lifted and carried. Even a small carry-on is now easy to roll along – how nice!
  1. Lists – I find more and more that things I’m sure I’ll remember… well, I remember them tomorrow. Maybe. So I am very thankful for lists!
  1. Greater cultural acceptance of disability – T.R. shared with me a nice example of this. Take a look here at a lovely image of an aunt and her niece… the most telling thing to me is that the aunt may be in a wheelchair, but this fact is not celebrated or degraded. It just IS. And that is beautiful. (After yesterday’s celebration, this was particularly telling.)

5. E-mail – I recall when I was in college and used email for the first time – it was winter 1992. I was rather amazed. Then in 1994, During my first year of teaching, my school became connected to the Internet… and it was my privilege to show students in my science class the magic of e-mail. When we typed a question to “Bill Nye the Science Guy” then received a response the next day, this was a special kind of magic. Today, I’m still amazed when I look at the screen of my “inbox,” viewing the list of places these messages are from, when they were sent, and pondering the “magic” of today’s technology.

30 Days of Thanks – Day 21 –  Happy 25th Birthday, ADA!

  1. disabilitiesSummer 1990 was a time of transition for me, as I was preparing to move away to college. My senior year had been an eventful one in the big scheme of things… the Berlin Wall had been torn down in November, student protests at Tiananmen Square in Beijing had shaken the world just a few months earlier, and Nelson Mandela had been freed after 27 years in South African prison.  After graduating, I had no idea that our President would sign a bill that would have more of a personal impact on me than any of these other storied events that filled the news ever would. On July 26, 1990, George H. W. Bush signed into law the Americans with Disabilities Act (ADA). As he stated at the signing, this act was meant to tear down another wall, removing some of the barriers experienced by those facing disabilities.

Has the ADA succeeded in tearing down that wall, as the President stated? Though I know implementation has been imperfect (what isn’t?), The ADA has succeeded in making life fuller, places more accessible than many would have imagined 25 years ago. So this leads to today’s thankful list:

5 Things That Make Me Thankful for the ADA:

  1. Parking places – Because of the requirements legislated by the ADA, those of us who have difficulty walking (or using a cane, walker, or wheelchair) may park in closer spots. Before I started using a cane, I would often use my tag and park at these spots – I may not have looked “disabled,” but MS left my legs less cooperative than I sometimes wished, and my internal battery just didn’t hold any extra charge.
  1. Required Accessibility in Public Places – Except for older locations, all public places are required to allow those who are disabled to use them. So doors need to be wide enough, an entrance without stairs must be present… the power of this law became obvious to me when I called the restaurant where we were planning my parents’ anniversary. Not having visited this out-of-town establishment before, I asked whether the room was handicap accessible for one in a wheelchair or using a walker. The answer was immediate, “Of course it is. It’s the law.”
  1. School stuff – For me, I was able to quietly make arrangements to have the location of a college course changed, as I researched in advance to discover that the planned classroom was one that had a few steps at its entrance. Though I was only using a cane, I knew that the unpredictability of MS could require the use of a walker later in the semester. So the room switched. And the other students never knew about this. (At first, the instructor had questioned whether this needed to be switched, but when I copied a college administrator on the email conversation, the prof was told that I shouldn’t have had to ask more than once, and law required that this reasonable accommodation be made.)
  1. “Magic Doors” – This is what they seem like anyhow. Though automatically opening doors are not an ADA requirement for many locations, they do help for the accessibility standards to be met. Pressing a button to open a door allowed me to enter school, work, and church.
  1. Elevators! 🙂 – I was thrilled to hear a report last Friday about ways the ADA has made a difference in the lives of those who may not face disability. I can only imagine navigating New York City in a wheelchair, but I was very encouraged to hear of subway stations that are in the process of adding (or are planning to add) elevators. Here at home, I appreciate the existence of elevators, more than I used to, and I know the ADA has helped fund improvements here nationwide.

Curb cuts, accommodations, accessible theater seats… there is so much this law has helped make available. This isn’t only for the disabled community as it is now, but for those who don’t view themselves as “disabled” but find their lives enriched by structures, events and cultural trends impacted by the spirit of the ADA. Thank you, George H. W. Bush!