“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.

Day 30 – Thirty Days of Thanks – Year five finale

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Five years ago, I decided that my “Invisible Issues” blog would focus on something besides disability difficulties. Why? Mom battled a breast cancer diagnosis, and I was so inspired by her beautiful outlook. When one faces deep struggle, there is still so much to be thankful for! Mom had a special little way of simplifying these thoughts, so leave it to me, her wordy daughter, to complicate the issue.

As the days, weeks, months, years have passed, I have continued to be wordy … why use one word, when two will do? (yes, that’s my attempt at levity.) I have so enjoyed these windows of thankfulness, time to focus on the beauty and blessings that are a part of life. Even life filled with “invisible issues” has its bright spots.

On this thirtieth day, I have struggled to narrow down today’s “Thankful list.” As I keep beginning this post then deleting and restarting, I decided to look back five years. On Day 1 in 2012, what did I say? How has my list changed (or not changed) since then?

Today’s 5 things of thanks (and those from July 3,2012)
The 2012 thoughts are italicized.

  1. IMG_2155My husband: friend, lover, father, caregiver – an amazing fellow – T.R. continues to fill each of these roles even more richly – I love you, Sweetie!
  1. Air Conditioning I cannot emphasize enough what a hugely meaningful factor air conditioning is in the summer life for a person with multiple sclerosis!
  1. The hummingbird feeder outside our window – I still adore watching hummingbirds hummerfeed through our sunroom window! About six weeks ago, our five-year-old glass feeder fell onto a brick path and shattered, so I found a replacement through our friendly Amazon account. This new feeder sports a perching bar that these birds really seem to enjoy. In fact, just today I watched a bird perch and drink for at least a minute. She came back and repeated this at least three more times. So fun to watch!
  1. Grandparents: this is the home where our daughters are now. Our parents! – My parents and T.R.’s parents play such an important role in the lives- of our children – and our lives! Five years ago, the girls had been at one of their homes, and I’m so incredibly thankful that Dad, Mom, Dave and Connie are in good health and still run life’s race with us!
  1. Electricity (for the AC, lights, this computer, and so much) – Again, we so often take these things for granted!

Five years ago, I wished to leave simple lists, without lots of description. Nice try, Angie. But I have had such fun taking a closer look at life’s blessings! You may recall that the beginning of this journey was also a response to Mom’s cancer experience. With other blessings, I am quite thrilled that Mom’s most recent follow-up appointment showed that she remains cancer-free!

Today does mark the end of my “Thirty Days of Thanks” blog adventure. What this has taught me is that every day is packed with blessings, so many we take for granted if we’re not careful. So my challenge to myself and to each of you: let’s continue to take note of life’s blessings, living lives of thankfulness.

Day 29 – Thirty Days of Thanks – Goodbye summer break, hello garden blessings

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What a joy it has been to focus on thankfulness as the summer continues on! With just two days left in my “Thirty Day” journey, I’ll make certain to highlight a few that are particularly timely.

Today’s Five Thankful Things:

  1. firstday16.JPGFirst Day tradition – Since our daughters were in preschool, we have taken a “first day of school” photo each year. And our lovely girls agree to hold up a sign and smile each year, with the promise that we will not follow them to college with these signs.
  1. Caring, intelligent teachers – Our daughters have attended public school since kindergarten, and we have been blessed each year with special teachers who really do care about their students. At a time when public schools face budget and political struggles, I have so appreciated Eastbrook Schools and the caring faculty and  at its heart.
  1. berriesBerries still! – Our blackberry bushes continue to be fruitful, and I try to enjoy them when I have the chance. Looks like we’ll be making at least one more batch of jam! And we have several quarts frozen. Fresh berries just can’t be beat!
  1. Fresh veggies from the garden! – Today’s lunch at IMG_0689home came from our garden, picked over the past couple days. Other than the large okra (should have been picked before it grew too large), I enjoyed sweet peppers, smaller okra, cucumber, and tomatoes. Then berries. Oh – and watermelon from our garden!
  1. Rose of Sharon’s first blooms – A few months ago, we planted a few saplings of “Rose of Sharon,” shared by my friend Ellen. Her bush is a combination of white, lavender, and pink blooms, as the bushes grew tightly into each other. But these were just planted here in April, and I hadn’t even expected them to bloom on this first year. What a beautiful surprise to find out this morning that these were both blooming!

Day 28 – Thirty Days of Thanks – celebrating the life of Uncle Otto

In “Day 27” of my thankful journey posts, I promised I would continue with “Day 28” on August 9. The past week and a half held many blessings, but one calendar addition came a little unexpectedly. How so? Allow me to explain.

Today, August 9, my uncle’s funeral is taking place as I finish typing this post. Uncle Otto  passed away at the age of eighty, and his final few years held the extra challenge of Alzheimer’s disease. For a strong farmer/businessman, a leader in his church and family, understanding and coming to terms with this hard-to-understand I malady weighed hard on Uncle Otto, Aunt Donna, his children and grandchildren. I know all of the family is thankful that they had the opportunity, while his mind was still here, to share final words with him. Then over recent months, we were all thankful for a loving “memory care center” that offered needed support.

But Uncle Otto’s life was beautiful and rich, not defined by his later struggle. So what to be thankful for on this day? I was unable to travel to the funeral, but I have no doubt that much will be shared about family, as children, grandchildren and cousins banter with a smile.

Five Thankful Thoughts in honor of Uncle Otto:

  1. Family roots – My mother’s only brother (with four girls in the family), Uncle Otto followed my grandfather’s farming footsteps. The farm carries on with my cousins Tim and Scott, then their extended families. In a world where family roots sometimes struggle to take hold, Uncle Otto’s legacy will carry on.
  1. ottofaamFamily man – Five children in the Otto and Donna Wuethrich family were neat cousins to grow up with, though I was much younger. I never really got to know the oldest cousin, Jerry, as I was only ten years old when he died in a car accident. The photo here is one Scott posted on Facebook – isn’t it a lovely image of Uncle Otto and two of his happy kiddoes?
  1. Man of Faith – Otto Wuethrich held strong to his faith, and I know he was a part of the leadership at the Apostolic Christian Church in Francesville, where my mother attended when growing up. Though the more formal, traditional church may seem unusual, the heart of this church is pure on a level often not seen in less formal houses of worship. After Grandpa Wuethrich passed away when I was in elementary school, I recall Uncle Otto leading a prayer at a large family gathering. And his voice sounded exactly like Grandpa had sounded, with as sure of a prayer.
  1. Outdoorsman – Uncle Otto loved to fish – and he even stocked fish in the pond behind their home. And young relatives who love to fish were able to do so! I appreciated him sharing this bit of his life with us.
  1. Aunt Donna – his high school sweetheart! I’m thankful that he brought into the Wuethrich family a gem of a sister-in-law for my mother. Aunt Donna, later in life, developed a sweet yet sardonic humorous routine, a la Erma Bombeck, and we’re so blessed that she is a “Wonderful Wuethrich Woman.” The long goodbye of Alzheimer’s was especially hard for Aunt Donna, who also faces Parkinson’s, but she stood by Uncle Otto even when it was tough. We love you, Aunt Donna!

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)

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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

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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 25 – Thirty Days of Thanks – random summer stuff

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Summer break is a time for fun mini-adventures, often within the walls of our house. “Fun” for us may not be what would excite others, but isn’t that part of what makes summer break especially lovely? The chance to pause and enjoy unique blessings – I’ll share a few of those below.

Today’s 5 Thankful Things:

  1. IMG_0613New recipes to try – When I saw “French toast waffles” in a recipe email, I decided to give it a try. And family members made it work – this was fun!
  1. IMG_0619Twinkletoes – or at least painted toenails. Though she has lovely blue-painted nails herself, my kind daughter painted my toenails a beautiful burgundy.
  1. Blog adventures with our girls – On her own blog, twin number one examined the inner struggle she faces IMG_0629while finishing an assignment due at the start of school. She has this final paper almost completed, and the last part of it finds her dragging her heels. (It IS vacation, and I wonder how many AP students will have this assignment finished. This girl will, I know. But that doesn’t mean she has to like it.)
  1. Blog adventure number two – The second sister has been continuing to post on her art blog daily. You may recall that she started the blog in early July – how fun to see the growth that has been taking place!
  1. More game adventures – My husband and his friends have been playing a “legacy” game over the past few months, a game where things change and cards are even torn up as they go. It is so fun to hear these four friends laughing and groaning and cheering and lamenting… proof that games aren’t just for kids. Or that “kids” are defined by more than age.

Day 24 – Thirty Days of Thanks – more writing … and chocolate, too

Continuing from yesterday – writing offers more than five things to be thankful for! So moving on, here are five more reasons I have to be thankful!

So here I go –

Today’s 5 Thankful Things:

  1. Online classes – Last fall, I was able to enroll in “Media Communications,” completing coursework at home and turning it in online. Professor Sara Brookshire was very encouraging. Among other things, I learned that I am not so fond of basic newswriting. I’d rather write something that can contain bits of personality, not just fact.
  1. recorder appSmart phone apps – Many thanks to Sara for introducing me to the “recorder app.” When I completed an interview for a course six years ago, I actually used a cassette recorder that I toted with me. (Yes, I was behind the times, but I didn’t own another portable recording device. Yet.) With a new smartphone, I was able to use a recording app that simplified so much!
  1. Siri Life 2 chocChocolate – As Siri told me just today, chocolate adds meaning to life. Even though I admit life has much Image result for Dove Chocolate Wrapper Quotesmeaning beyond chocolate, I do enjoy sharing words and chocolate with “Writers’ Bloc” frequently. I call these “chocolate fortune cookies,” as Dove chocolates have fun messages we read while enjoying our treats at our weekly lunches.
  1. Spring online class – What an incredible blessing my spring class was! “Nonfiction writing” offered many challenges and rewards. As I learned to hone this craft, life lessons came my way also. Remember my comments about March, how my nervous system turned extra-rebellious? This came to fruition the first full week of class. And it gave me extra reason to persevere – would this teacher let something like a burning tongue or uncooperative legs give excuse for missing an assignment? I think not.
  1. Wonderful instructor and new friend – Kim, a professor from a northern Indiana university, showed patience and skill. Thankfully, she believed me when I shared my reasons for schedule changes and such. But she took me seriously and took me to task as needed. My verbs are becoming more active, my sentences less bloated, and my messages more direct. Okay, sometimes … but I can keep trying. And I have a neat book project in the works!

 

 

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