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.

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.

Nineteen years – still saying “Goodbye”

rich-magI 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.

title page - ElijahOne song of his, “Elijah,” was particularly poignant, with poetic Rich's preface for my photo essayimagery 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.

 

Day 30 – Thirty Days of Thanks – Year five finale

thankful2

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

thankful2

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: View from the chair (part 2)

IMG_0566.JPG

Today was the day… Gen Con after months of preparation on many arenas, the gaming conference extraordinaire was to begin. And begin it did! Though I’m certain the crowds will feel thicker in days to come, booths certainly looked busy enough. From T.R.’s past experiences, we knew that attendees should plan to purchase the highest priority game first thing in the morning. But this blog isn’t about things we purchased – it will focus on accessibility, and what we did.

First, I have to say that we are quite pleased with our downtown hotel! The Springhill Suites not only offered a handicap-friendly room (that fit ADA standards better than many accessible hotel rooms we’ve visited in the past), but the tables in the public breakfast room are even the proper build that a wheelchair can slide in appropriately. One other reason that we chose this hotel is that it is part of the “skywalk” network leading to the Convention Center. This may sound petty to some readers, but one weather-related MS symptom I face is heat intolerance. If air temperature is over 80 degrees, my energy drains quite horribly. With today’s heat index predicted to reach near 100, I would feel like a pool of jello, unable to move. So suffice it to say, I appreciated the skywalk, even though the route became less direct.

I will admit that our experience was a little less typical, as T.R. is managing the booth of the British company Modiphius, so our family members had “exhibitor” badges. (My husband and daughter are spending each afternoon working in the booth, and they completed much of the set-up work Tuesday and Wednesday. They’ve earned those badges!

Angie badgeToday held more unique bits of adventure than I had foreseen! The first main game we purchased included something special about events like Gen Con: our family was able to demo it, instructed by somebody who knew more about the game than we did. “Hogwarts Battle” was a fun cooperative game, and I even had the chance to play a favorite character, Hermione Granger! Because we played the game there, we each received a ribbon of a Hogwarts House of our choice, so you may notice the “Hufflepuff” ribbon in my badge. We also purchased and perused “Star Trek Panic,” so our family members received Star Trek ribbons for our badges. In honor of my parents, I picked “medical officer.”]

 

I have been a part of game play at Gen Con before, but the Harry Potter game table was set up in such a way that I could sit at the table, my knees didn’t hit strangely, and I didn’t feel like an outsider. Neat indeed! The Convention Center also keeps very tight watch over aisles and such. Not only did we find that people acted courteously in general, but there were even times when two or three wheelchairs were traveling almost the exact same path, side-by-side or in a line. Kinda crazy.

What made the day particularly special? For me, the people! Because T.R. has been completing Freelance projects for a number of publishers, I have heard different names,

even heard voices on podcasts we often listen to. I’ll post a few snapshots here to give an idea of neat interactions we had. One other wasn’t photographed, but I had to mention it here… I enjoyed a fun little conversation with Andrew Looney! I told him of the neat exchange I’d had during our church game day. A game card in Fluxx is signed by him to Angie fluxxme, to be particularly used as a “friend” – and I can attest that he really does look like this illustration!

This is an unusual report for me, as Friday, for me will involve an exciting Writer’s Conference at Taylor University. With so much on my plate this weekend, do I regret spending time and energy attending Gen Con? My answer is simple: not at all! This conference has offered our family an enjoyable, engaging, and memorable time. Our country has come a long way since the ADA was enacted twenty-six years ago, and this slice of gaming time demonstrated to me that physical accommodation has become purposeful, considerate, and expected. Kudos to Indianapolis, the Convention Center, and all who help Gen Con meet its goal to be the Best Four Days of Gaming!

 

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