Gen Con 50 – View from the Chair (day 2)

Today has been a lovely but full day – because of the late hour, I decided to share photos only, with the story to fill in tomorrow. So stay tuned for the explanations…

img_1404

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 fromimg_1376-1 “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

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.

Gen Con 50 – Views from the Chair (preview)

 

As the final summer before our daughters leave for college approaches its end, we’re preparing for one last adventure. And I’m looking forward to sharing these experiences on this blog!

Coming later this week – Gen Con 50: Views from the Chair. The four of us will be attending Gen Con, and unlike last year, I will be able to attend the entire week! With 2017 marking the fiftieth anniversary of this gaming convention, many special events and celebrations are scheduled, and it’s nice that we purchased our tickets several months ago. Many of my regular readers may see this as odd, but tickets for most days are sold out. I anticipate crowds everywhere, beyond those of years past.

What will a more crowded Convention Center mean for those of us with mobility issues? Time will tell. In the past, I have been pleased with the way these issues have been tackled, and I anticipate the same. My laptop will come with me to Indianapolis, and I’ll plan to share my experiences throughout the week. What will the Exhibit Hall experiences be like? Hotel? Dining venues? Restrooms and such?

If any of you have questions you’d like me to address, I’d be happy to do so – please share them in the comments below!

(See last year’s notes at https://angieknight.wordpress.com/2016/08/03/gen-con-views-from-the-chair-part-one/)

Celebrating 18 years!

DSC_0285

Funny how “National Poetry Month” didn’t result in more blog posts in April… April and May were beautiful, challenging, and exhausting. Why so? Our lovely twin daughters were completing their senior year in high school, which meant senior prom, final theater productions, band contest, AP tests, and final programs of many kinds. Of course, in the midst of this, MS has popped in from time to time… since late April, I’ve had great fun with “mandibular neuralgia,” where a nerve on my bottom left jaw (mandible) has decided to act up. But I can deal with this, just glad I don’t have current speaking engagements ;).

Graduation was last week, and by the time we returned home after our lovely open house celebration on Saturday, my “battery” level was quite low… it’s taken me a few days to “recharge,” but I feel like I’ve done that. Good thing, as today marks a huge celebration. Which celebration is that? Emily and Rachel’s eighteenth birthday!

In honor of this day, and as a final poetic post, I’ll share the story of their birth from the perspective of their mother. (This won second place in an area poetry competition, with the theme, “The Great Outdoors.”)


The Magic Door
by Angie Knight ( a true story – April-June 1999)

The time was close – six weeks to go,
spring was on its way.
Mommy waited patiently and
treasured every day.

Her favorite season brought new life
to tired, faded trees,
while she and Daddy took a walk
to feel the April breeze.

Soon they would come, two little ones
who waited now to see
the lovely world that would be home
for Babies A and B.

But then the doctor put the brakes
on time for work and play,
“Lay and rest, this will be best,
and soon will come their day.”

Six long weeks, they plodded by,
with Mommy longing for
a moment to just take a step
out through the wooden door.

She’d missed the daffodils, the scents
when spring was in the air,
the Great Outdoors were calling,
but she couldn’t visit there.

The day, it came, the babies joined
the world, first A then B.
They stretched and cried and lay in beds
for everyone to see.

Two days later, home they came
and all could hear them cry.
Eating helped and swings were nice,
but everything they’d try

to calm the smaller baby failed –
not song, not bounce or whirl.
The tired mom was wondering,
so holding Baby Girl,

she opened up that wooden door
and let the infant see
the outside world –
then something seemed to happen magic-ly.

Her eyes were new, but what she saw
brought silence to the place.
The spell she felt, the Great Outdoors,
the fresh, green quiet space.

In days to come, the parents found
the “magic door” still reigned:
quiet overtook the child
and peacefulness remained

each time they took a step outside
to venture out and see
“The Great Outdoors,” a view of life
that helped her to feel free.


Eighteen years later, not only do these young ladies sleep through the night, but they are amazing, intelligent, talented women who will be starting college in August. Ironically, the infant who loved stepping outside is now happiest when reading, making music, or interacting with technology inside. RachelRachel will be pursuing a degree in social studies education, with plans to eventually become a school librarian. I love watching her pursue story, literature, and truth – all with that special spark that is “Rachel.”

Emily, however, loves to spend time outside and DSC_0529frequently helps with the garden. She will will be working toward a degree in chemistry education. Having won the top award for science and for math in her high school class (yes, ahead of the fellows), Em is on her way to becoming the most engaging, artistic, and inspiring chemistry teacher we’ve ever seen. Her art blog may be viewed at www.emilyknight.org, and it will be wonderful to see where this talented twin’s life heads.

What a wonderful blessing and adventure these eighteen years have been – Happy Birthday, ladies!

dancing twins

April has arrived ~ it’s poetry time!

national-poetry-month-horizontal

April is here, and spring is in the air. The season of growth and life around us doesn’t only bring leaves and blooms, but it also inspires the poetry in each of us. Yes, April is National Poetry Month!

To encourage any who wish to craft verse in honor of this special month, I thought I’d share again a piece I penned a few years ago. The first seeds in our garden were just planted last week, and it was when I planted lettuce seven years ago that I wrote this piece. (It also hails back to my science teacher days in the mid-90s, when we planted seeds and charted their growth, measuring and marveling at the miracle of “tropisms.”

So, happy poem-ing to the poets among us!

 

Tropisms

By Angela Knight

 

Diminutive as a speck of dust, the black seed glistens on my palm.This onyx-tinged grain holds promise; it encapsulates life.

They say that if I bury this bit into the soil, a stem will soon point upward as roots burrow into the dirt.

“Magic?” I ask.
“No – science,” they say. “Tropisms: stems go up, roots come down. That’s just how it is.”
“But why? How do they know? Where do tropisms come from?”

As I ponder, I hear a silent reply:
“It is I who created the constellations, the oceans, the peaks, the valleys, the beating hearts, the seeds.
And I AM.”

So with awe more expansive than the waters of the world, I unite this tiny beacon of hope with the earth. Rains come: geotropisms tug down, phototropisms pull up, and the Creator smiles.
It is good.


Published in Parnassus, Feb. 2012


 

If you are in the Upland area this weekend, check out the Barton Rees Pogue Poetry and Arts Festival!

 

…I will share other poetry related to life’s “invisible issues” later in the month.

I’m aware – what should I do?

Disability-Awareness-Month

As I face life with disability, T.R. and I frequently hear a passing comment, “Let me know if I can help.” Folks mean well, but it can be hard to pinpoint “help” that can be done. Like many of you, we like to live our lives, feel that everybody else has plenty on their plates also, so it seems lazy to ask for assistance with everyday things. And specific ways to help just don’t cross our minds.

We realize that friends really do wish to help, so as this month reaches its end, I thought I’d share a few examples of ways one can reach out to those facing physical issues (and their families!).

Groceries – Sometimes, we don’t even realize what little parts of our lives we take for granted.  For me, grocery shopping was one of them.  It didn’t seem big until it grew a little more difficult to maneuver all of the grocery aisles, fill the cart, wait in line… and have any energy left. Then my friend Christa, about fifteen years ago, said, “Hey Angie, I go each Tuesday to get groceries at Wal-Mart – if you want to get a list to me before then, I’d be happy to pick up yours, too.” She brought the receipts and groceries, and I paid her the appropriate amount, of course, but it was astounding to me how much of a help this was! Christa and I continued this for about two years, and I now have a similar deal with nearby family. I love viewing the grocery ads online and creating a list of what I know our family would enjoy – and sales are a bonus! When people asked how they could “help” our family, this had simply not occurred to me. If not with groceries and such, a simple “I’ll be in — at —, is there anything you’d like me to pick up for you?” can be a help.

Garden help – If a person has problems that involve energy, movement, or heat, helping with planting and/or pulling weeds can do a lot to not just physically assist, but to lift a person’s spirits. And if pulling weeds or helping children do so, make sure you can all determine what NOT to pull. Planting times have arrived this year for early seeds, and it takes dexterity and strength to correctly prepare and plant a garden bed. (Huge kudos to my dear husband for doing amazing prep work and then planting this past week!)

Food – This is especially true if the main “cook” in the family is one who is now facing physical troubles. When friends knew my MS was acting up more nastily than usual, a friend sent us a message that she was going to make a pan of lasagna for us – she just wanted to be certain of food allergies and such first. Then we’ve had notes with gift certificates for area restaurants with take-out and delivery… so kind! None of these are things we’d ask for, but I assure you they were all appreciated. [Angie note: if you wish to help with food-related things, make sure to find out about allergies. Even something as simple as black pepper can set off an allergic reaction… says the lady with the irritating black pepper allergy.)

Your presence – Sometimes, just having a friend drop by to say hello and chat can be welcome! Call (or email or text) first to be certain the time works – but a visit from a friend can help a person who spends a lot of time alone feel less isolated. And more loved.

This month has been one for developing awareness of those with disability issues, and I hope it can help us each give thought into ways we can reach out to and encourage our friends and neighbors.

 

 

“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!

 

Disability Awareness Month 2017 – not your inspiration

Disability Awareness Month 2017 has an interesting, unusual, and meaningful theme: “Not Your Inspiration.” When I first received a flyer about the theme in late January, I was surprised. I was also a bit apprehensive, as over the past few months, I have had a number of people share very kindly that I am an inspiration to them, as they watch how I face various struggles. I’m never quite certain how to appropriately respond to these comments, though I generally smile a “thank you.” And I don’t wish to overtly defy well-wishers. But let’s take a look at the message here:

So if not “your inspiration,” what would I wish to be? As I asked myself this question, I came to the conclusion that these posters don’t tell the whole story. Thinking of neighbors, coworkers and classmates who face challenges, I do see some whose stories and examples are inspiring. Many face difficulties not so visible to others, with no cane or chair or facial expression that paint the picture of disability. Like me, I think others wish to be seen beyond the outward bit, as the “not your inspiration” campaign insinuates. For those who know me, I’ll add a fourth poster:

I’M NOT YOUR INSPIRATION:
I’m your friend.

Admiring those who overcome disability is fine, but this month us a good time to focus on the people beyond the challenges they face.

MS Awareness and Ivanhoe’s shakes

ms awareness weekI composed the following article for our small local paper, and it’s an updated version of my 2011 piece. I think this milkshake analogy is my favorite way to explain how MS doesn’t always look the same. 



MS Awareness Week, March 5-11

           As spring nears, March again brings “MS Awareness Week.”   I find this interesting, as I experience 52 of these each year, but is nice that a bit of time is set aside to share information with others.  Over 400,000 individuals in the United States face this challenge, so this week offers the chance to shine a light on information that may be new… or misunderstood.

As our friend “G. I. Joe” used to say at the end of each cartoon in the 80s, “Knowing is half the battle.”  Knowing what MS is – and what it isn’t – is helpful in gaining an understanding of this illness.  So what is multiple sclerosis?  It is an autoimmune disorder, meaning that the otherwise helpful immune system is affecting something it shouldn’t.  In this case, the white blood cells are attacking several (multiple) places on the coating of the nerves.  These attacks create scars (sclerosis).  Sounds simple, doesn’t it?  Not so fast.  Consider the nerves that run through the body, not to mention the large bundle of nerve tissue that we call the brain.  In fact, using MRI technology, scars viewed in the brain often lead to a diagnosis of MS.

ivanhoe shakes            If it is anything, MS is unpredictable.  Scientists are still uncertain as to the initial cause of this disease, there is not a certain pattern that it always follows, and it can vary widely from one individual to another.  The best area analogy I have found is the menu of Upland’s Ivanhoe’s restaurant.  Hoe’s is largely known for its 100 varieties of shakes and sundaes, and MS can vary just as much, if not more.  Some are diagnosed and may have a “vanilla acapella,” with no additional or noticeable symptoms after the initial onset.  Others, though, experience a shake not even on the menu, with ingredients they never liked to start with.  Symptoms can include fatigue, loss of coordination, heat sensitivity, slurred speech, cognitive problems… and I’ll stop there, as this is a bit disheartening.

Besides knowing what MS is, it is equally important that we realize what it isn’t.  MS is not a death sentence: though chronic, it is not fatal.  MS is also not the sign that somebody has lost his or her ability to be productive.  Every individual, like those beloved gourmet shakes, is different.  The last two homes where we lived had us next door to an individual with MS, something I certainly didn’t realize at first.  You see, MS is not obvious.  Two thirds of those diagnosed with multiple sclerosis are female, but this means that many are also male.  MS is also not age-specific.  A few are diagnosed as young as six, some in their 50s or 60s, but many in their 20s or 30s.  Many are from Western European ancestry, but this also varies.  And about a fourth of those with MS end in a wheelchair, but three fourths do not.

So why should we be aware?  More and more medical breakthroughs are on the horizon.  There are currently fourteen medications on the market to help slow MS progression, and a cure is closer each day.  In the meantime, patience and understanding are key in helping support our friends and neighbors with MS.  Now you know, and though simply knowing may not be half the battle, it is certainly a step in the right direction.

Angie Knight was diagnosed with MS in 1997 and lives with her husband and daughters in Upland. Visit her “Invisible Issues” blog at https://angieknight.wordpress.com .

So what exactly does MS look like?

Angie MRI 2006

This is actually a slide from my lovely MRI brain photo shoot in spring 2006. Brighter spots are the new active scars. 

…This is like asking what a March day in Indiana looks like. The answers will change from day to day, sometimes minute to minute. One MS descriptor I appreciate is “unpredictable” – scars in the brain can do funny things, and misfiring nerves can be quite disconcerting. I appreciate the image of this posted by MS Lifelines. Ten common symptoms were highlighted here, and I’ll focus on the few that affect me most (I understand these most clearly).

 

  • Cognitive issues: Words sometimes fail me, and I will forget things… it’s hard to tell what is MS and what isn’t, but these issues are frustrating. My thoughts also seem to process more slowly. (This definitely affects the games I choose to play!)
  • Vision: my  eyesight is already poor, but MS scars on the optic nerves sometimes keep my eyes from cooperating. My left eye likes to wander, ignoring messages from the right. In fact, my first symptom in April and May of 1997 was “optic neuritis,” and scarring on the optic nerve led to uncomfortable eye issues that stopped before I knew where they had come from.
  • Fatigue: This isn’t just a case of “I think I’m a bit tired,” but true weariness that strikes. A nap can help, but the need for a mid-day nap can be frustrating, I must admit. The analogy I often use is that of a battery. Most folks start the day with two fully-charged D batteries (8-year-olds may have three), while I have a single AA or AAA size. And on some days, I’m convinced that many have Duracell, while I have the off-brand battery that had been forgotten at the bottom of the drawer.
  • Strength and coordination: This is why people with MS are sometimes mistaken as inebriated. Walking in a straight line is more difficult than one may think! Personally, when my feet and legs stopped moving where my mind was telling them to, I agreed wholeheartedly that I was not going to drive. (Hand controls would not be a good option for me either, as my hands become flakey when my feet also stop cooperating. Not helpful.) I also used to play piano… no, I haven’t “given up,” but accepting the fact that my hands will not move in a detailed, coordinated, practiced method is a truth that I face.

If you care to watch a short video answering the MS questions, the MS Society has a nice one here:

March is MS Awareness and Education Month, but this week is specifically MS Awareness Week.On Friday, I’ll post here the op-ed piece I submitted to our local paper, the SEGway news (for South Eastern Grant County). It is a little more lighthearted than this MS laundry list of sorts. Did you know that MS is like an Ivanhoe’s shake? Visit back in a few days to see how.

« Older entries