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.
“Scars” by Angela Knight
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?
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.
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.”
More than Scars.
That’s what I call it.
You can call it what you wish.
Twenty years is a long time – but sometimes, it seems like no time at all. Time is funny that way.
1997 was particularly significant for me in a number of ways. In late May, I cleaned out my middle school classroom for the last time, saying goodbye to a career that would take unexpected turns. We moved to a new town, and my husband was now much closer to his new job at Taylor University (as he had been commuting until I completed my school year… I had signed a contract, you know). In May, I also visited my eye doctor… who led me to another doctor and a diagnosis in June for probable multiple sclerosis. (Because we weren’t busy enough the first week in June, as we packed boxes to move four days later… but that’s another story.) The official diagnosis came on July 30 – yep, it was MS.
This part of the my own 1997 story took a step in August when I attended a concert of my favorite musician, Rich Mullins – the link here will lead you to a review of the concert I posted the next day. What I did not realize was that this, the final concert of his tour, would be the last of Rich’s performances I’d have the pleasure of seeing. Of the fifteen concerts of his I had attended, this was also the first one that led to tears. During “Bound to Come Some Trouble,” the floodgates let loose. Two weeks earlier, that diagnosis had come, and I really wasn’t certain what it would mean. (Attached is a clip of this song that somebody recorded at his Wisconsin concert on August 10, four days before I had my little tissue-soaking time.)
September 19 was a day like any other – I was a graduate student, commuting to Ball State for class and work during the day, and the phone call came from my younger brother that evening. I had been listening to Rich’s “Canticle of the Plains” as I could throughout the day, but now I stepped into our back yard, where I could lean against the towering oak and gaze at the stars. The lyrics of “Elijah” scurried through my head, as I teared up and wondered about that candlelight in Central Park, and what it would mean to say “Goodbye.”
So here we are twenty years later, and I still feel that my life as it is today has been enriched by the music and ministry of Richard Wayne Mullins. His songs still traipse through my head, and I’ll still be reading scripture and thinking, “So THAT’s the spot where that lyric originated!” But a huge smile came to my face last Sunday morning when our associate pastor was describing what his two-year-old son had been doing at breakfast. Music was playing, and the little fellow left his cereal at the table and felt he needed to dance before our Lord… we were told this was a Rich Mullins album that was playing. I have a feeling this would have made Rich smile. And I have no doubt that Rich’s music will continue touching countless more lives in years to come.
This year, my own story will instead mark September 20 as a significant point. As I begin new medical path for my MS treatment, a new chapter may begin in my own story. I’ll plan to listen to Rich’s music as I venture on – and I’ll post more about that tomorrow or Thursday. In the meantime, I’m thankful for the legacy of Rich Mullins on this day in particular.
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.)
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!
I realized this evening, after seeing a note from my older brother, that this is indeed September 19. “Yes,” you say, “you can read the calendar. And your smartphone… and this matters because…?”
Nineteen years ago today marked a loss from which I’ve still not fully snapped back. But as I contemplate this evening, I think that’s okay. I think Rich would have liked knowing that his steps ruffled things up a bit.
I’ve written of Rich Mullins’ impact on my life several other years also, and I’ll do it here again. His own life was filled with “invisible issues,” some of which he shared in ways only he could, and many of which he kept hidden.
One song of his, “Elijah,” was particularly poignant, with poetic imagery that touched my heart as far back as my high school years. Take a look at my 2012 reflections on Rich’s special forward to my high school photographic essay. (Step back in time for a look at school projects completed with paper, pen, crayola markers, scissors, and scads of rubber cement. Color printers? Not in 1988.)
I continue to hear Rich’s music in my head at various times, but I find it happening most when T.R. and I are reading scripture together. So much of the imagery, the stories can be tied to scripture. As we’re trodding through Revelation, with its fantastical and frightening imagery (though I know a triumphant end is coming before the book is complete), I find myself offering the same prayer as Rich in his song, Be with You: “…when the sky is crossed with the tears of a thousand falling stars as they crash into the sea, can I be with You? Can I be with You?”.
Yes, it’s been nineteen years. And I thank Rich and the legacy he has left for continued little lessons I learn, from reflecting on teenage times to hearing the scriptures continue to sing today. May his songs live on.
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:
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.
Family 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?
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.
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.
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!