They are Sixteen Going on Seventeen…

Emily and Rachel at tea

2 1/2-year-old Emily and Rachel shared invisible tea for a very, very, very patient photographer.

Emily, Angie, and Rachel Fall 2014

Emily and Rachel are such an important part of my life!

Really? Sixteen? Not long ago, they were very little ladies finding their place in a childlike world. Today, we are so proud of the beautiful, talented young ladies who are making their mark on the world around them.  June 8, 1999 was an unforgettable day indeed. I may joke about parts of motherhood, but life is truly enhanced by Rachel and Emily. They don’t only make me smile, but they demonstrate caring, compassion and love in everyday life. Lest you fear perfection here, know that we do have typical teenagers who don’t enjoy cleaning rooms, like to hide in the bathroom when time for chores comes, and who often disagree. Loudly. But we couldn’t love them more, and we are so excited to see what the coming years hold for Em and Rach.  We’ll travel back half of their life, and I’ll share the blog I posted exactly eight years ago, reminding us to dream and to reach. (next week the “accessibility” thread will begin again. :) )

Tracking Unicorns and Chasing the Moon
published June 7, 2007 – Eight years ago!

Unless you were on another continent this past winter, I’m sure you remember the Valentine’s Day blizzard. My second grade daughters will certainly not forget. They notice things I fail to see, and I love hearing their descriptions. The “older” twin (by thirteen minutes) received a book for Christmas about unicorns, and she had been on the lookout for telltale signs of visits. So it was that after the winds died down, leaving drifts galore, my daughter came excitedly to me, “Mommy – there are tracks! Unicorn tracks!” Sure enough, we could see through the window that one corner of the yard did show indentations in the snow. We had seen tracks from squirrels, birds, rabbits, neighborhood cats… and these had to be tracks from unicorns. To prove it, she retrieved the book and showed me a drawing of the type of unicorn this must be.Now her “younger” (and a bit shorter) sister has seen fairy rings and leprechaun signs, but the whole school got to see the starry-eyed dreamer at their variety show in May. Shel Silverstein is the girls’ favorite poet (quite appropriate for any self-respecting second grader), and she wanted to recite one of his poems. After careful consideration of several of his masterpieces, this young, starry-eyed girl chose Moon Catchin’ Net. So it was that with a butterfly net perched on her shoulder, she faced the microphone and declared, “I’ve made me a moon catchin’ net, and I’m goin’ huntin’ tonight!” I could just see this little girl chasing after the moon, swingin’ from the stars.

This Friday is the girls’ eighth birthday, and I hope I can continue to learn from them as I also hope I can teach them. Looking at the world through starry-eyed glasses isn’t always a bad thing. Granted, we can’t run through life always chasing the moon and tracking unicorns, but the girls help remind me that different perspectives do see the world a little differently. My “moon chaser,” while talking with me about this blog and possible topics, wanted to know if she could help write any of the entries. I said that I would love her to share her ideas, and not one to hold back words (ever), she had one idea already. “Mommy, I know there is at least one boy and one girl at school who have disabilities.” I know there are more than those, but she is thinking of people with a wheelchair or who have difficulty walking… and she’s right. I have watched the care and compassion that the school teachers and staff show to students who have physical or other kinds of issues. Seeing this example can plant seeds of compassion in the hearts of the students around.

So “Happy eighth birthday!” to my girls. I like a statement by writer Monica Petter in her essay “No Old Weeds, Please” in M.S. World, February 2007. “You can’t climb mountains without any legs, but you can find a way to the top if you dream.” Let us never lose the ability to chase the moon, track our neighborhood unicorns, or climb those mountains.

“Beware the Chair”?

lessons to be learned from a campaign gone awry

When I was first diagnosed with MS in 1997, I must say that one little fear I had was that of “ending up in a wheelchair.” I wasn’t certain what that might mean, and the unknown was a little disconcerting. Since that time, I have learned so much about mobility, stereotypes, and… well, life in general.Knight-110

As it was, seven years passed before I started using a cane to keep my balance. Another eight or so years, MS had expanded its reach just a little, and a physical therapist officially informed me that I was to use a walker when moving around of my own volition, as my sense of balance and coordination just didn’t work
together enough to keep me safe. (I likely should have made this move earlier, as I’ve tasted a little more pavement, concrete, dirt, and flooring than I had ever intended. And no, I did not plan any of these taste tests.)

So I do use a walker regularly, and friends and family have gracefully become accustomed to folding this contraption to bring with us in the car when we travel. But the walker requires legs with  enough energy to walk, and to do so at a reasonable pace. Because of the amount of energy it takes to traverse some spaces, we do often use a manual wheelchair.

trandangiemacinacI view the wheelchair as a useful, appreciated tool, a helpful piece of equipment that allows me to attend events, visit museums, go shopping… to experience life, really, without fear of buckling legs and kissing the pavement. This is likely why a recent campaign rubbed me the wrong way. I believe “Beware the Chair” was meant to warn women about the importance of taking care of their bones, avoiding osteoporosis, so they wouldn’t “end up in a chair.” A remote control wheelchair chased women, meant to scare them into considering bone health. Really?? Are we meant to view wheelchairs with doom and disdain, and is this really going to assist women as they tackle low bone density?

These questions were tackled beautifully by Emiy Ladeau in a piece she wrote for The Huffington Post, “Beware the Scare tactics.” As one who does use a wheelchair due to disability, Emily attacks the fright attached to the use of a chair, rather than fear of bone deterioration. The biggest lesson from this campaign came the day after her piece was published online. The organization that first posted the ad at www.bwarethechair.com completely retracted the campaign as it was, offered apologies and directIng viewers to information directly related to osteoperosis and ways to maintain bone health.

Why is this hitting me today, of all days? June 3, 1997 was the day I sat in a neurologist’s office and heard a diagnosis of “probable multiple sclerosis.” I didn’t know what this meant, and I know I was wary about a lot of things, but I am thankful that people like Emily Ladeau work to reduce the stigma associated with disability. As she recommends, I hope I can “make disability issues accessible to the world.” Maybe I can help these issues that were invisible to me before June 1997 to become more obvious. I’ll keep plugging away in the weeks to come – we have a lot to learn together here in Grant County and beyond!

“Why would a squirrel do that?”

The post below was from the first week of the “Invisible Issues” blog in 2007 on the Chronicle-Tribune website. The mobility theme is one I will build on later this week. When I watch a squirrel scampering outside my home, it still makes me think of Chris’s question.


I used to teach sixth grade science, and I smile as I remember one day when I was explaining Indiana’s historic landscapes. “Our state used to be so covered with trees that a squirrel could cross from one side of Indiana to another by jumping from tree to tree.” Thinking this could lead to an in depth discussion about deforestation or land use, I was happy to call on a student who had his hand enthusiastically raised high. “Yes, Chris?” “Mrs. Knight, why would a squirrel want to go across the whole state?” Obviously, he missed my point, but he had a different point: was it necessary that a squirrel be able to jump across Indiana via the treetops? In the same way, how necessary is it that the world be accessible to all?

Unlike a cute little squirrel who can scurry easily without jumping across the treetops, people are affected by lack of accessibility more often than we realize. I recently read a book There Is Room at the Inn, about accessible Inns and Bed and Breakfasts across the country. Author Candy B. Harrington had an interesting time as she interviewed various proprietors. One establishment was marketed as “accessible” for persons in wheelchairs, but when visiting she found that while the room inside was accessible, a person had to walk ten stairs in order to enter the building. The owner’s explanation: “Well, my friend is in a wheelchair, but she can just be carried up the stairs, and somebody can carry her wheelchair. Then she’s fine.”It is great to offer assistance to those who need it, but to assume they’re fine living in a limited world, always being carried up flights of stairs rather than having options of entering at least somewhat independently, is shortsighted. As the population ages and faces the associated challenges, I think we will all have a growing sensitivity here. Squirrels around my home leap and scurry just fine without a forest, but many of us aren’t quite so lucky as we travel from place to place.

first posted by Angie Knight on May 26, 2007

a poem of peace

As National Poetry Month nears its end, I can’t help but look to the world at large… one thing we long for, we strive for, is peace. Facing personal struggles, family issues, troubles on the larger scale that we read of in the papers or see splashed across the news, I found rest today as a happened upon a poem I wrote a year ago. It is a narrative from the perspective of the apostle Matthew. I can only imagine how it must have felt to be a follower of Christ, one who had worked with government and numbers and likely deception at times, but who left that to follow Jesus. And who was on a boat on the Sea of Galilee when they faced a storm unlike any other.

be still and know

(Matthew 4:26, Psalm 46:10)

Quiet!
Be still!
The wind obeys
The waves listen
I reach the shore
and step from the boat
And
The wars move on
The storms rage
But
I saw His hand
Heard His voice
And I know…
No storm
No war
No plague
No hurt
None is stronger than His peace.
“Be still and know that I am GOD.”
I’ll try, Lord. I will.

Psalm 46

Come and see what the Lord has done,
    the desolations he has brought on the earth.
He makes wars cease
    to the ends of the earth.
He breaks the bow and shatters the spear;
    he burns the shields[d] with fire.
10 He says, “Be still, and know that I am God;
    I will be exalted among the nations,
    I will be exalted in the earth.”

 

Matthew 8

23 Then he got into the boat and his disciples followed him. 24 Suddenly a furious storm came up on the lake, so that the waves swept over the boat. But Jesus was sleeping. 25 The disciples went and woke him, saying, “Lord, save us! We’re going to drown!”

26 He replied, “You of little faith, why are you so afraid?” Then he got up and rebuked the winds and the waves, and it was completely calm.

27 The men were amazed and asked, “What kind of man is this? Even the winds and the waves obey him!”

another poem – avoiding a fall

As promised last week, in honor of National Poetry Month, I’ll share another poem of mine, one that I wrote two years ago. This is another poem in lighthearted verse, and it, too, is based on personal experience. Learning how to fall gracefully, or, better yet, how to avoid falling to begin with, is an important skill. And though not all at the same time or place, all of the things mentioned in the poem have been “tripping hazards” during my time with MS. Yes, even chinchillas.

How to avoid falling

First of all, check the floor for debris.
Shoes or blocks? Newly formed tree?
Dogs running loose? Curious cats?
Climbing chinchillas, loose balls or bats?

Next, survey the climate conditions.
Comfortable air? Planned wind positions?
Free of ice or puddles that splash?
Wide-awake toddler to suddenly dash?

If conditions are questionable,
bring forth the cane.
You can never be too careful when crossing the living room.

Poetry winner – second place!

This National Poetry Month, for the fourth year in a row, I entered a poem in the Barton Reese Pogue Poetry and Arts Festival original poetry competition. The past three years, I was not an award winner, but I was quite thrilled when this year, I placed second. Fun! The past three years, I’ve entered poems that were lyrical or free verse, but this year, I decided to be more “traditionally poetic.” I thought I’d follow the style of a favorite poet of mine, Emily Dickinson and use rhyme and a sing-song type of lyrical feel.

The theme for this year’s competition was “The Great Outdoors.” I decided to take a different stint on this theme, telling a story of the effect a step outside had on a newborn in our home… I’ll let the poem tell the story. Before I share the poem below, I will share that I owe my husband and daughters huge kudos for helping me to physically be there and be a part of this competition today. Ideally, I wish I didn’t have to slowly make my way to a front podium using a walker, but we made it work. And though winning would be lovely, I knew how tough it would have been for me to make it up to the stage to recite it at the front… the winning piece was absolutely lovely, and I was thrilled for her! I was shocked that after three years of nothing, I actually placed, and that was more than I certainly expected. But without further ado, here we go:

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.


p.s. I’ll share a poem next week that I think those with “invisible issues” will enjoy. It is a fun description of walking without falling… stay tuned!

MS poem, “Scars”

As MS Awareness Month comes to a close, April will welcome a month I have come to appreciate, National Poetry Month.  After April, I will keep looking at the “Invisible Issues” faced by many of us. Today, though, I’ll transition from the month about MS to the month that celebrates poetry. So here I will share a free verse poem I wrote two years ago:

Scars

M.S.
Multiple Sclerosis.
Many Scars.
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?
Scars.
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.
Besides scars.

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.”

M.S.
More than Scars.
That’s what I call it.
You can call it what you wish.

 

Autoimmune Disorders… what exactly are those?

When one’s life becomes filled with a new vocabulary, it is easy to forget that some terminology isn’t quite so simple. Diagnosed with MS over 17 years ago, I first had to learn that MS was Multiple Sclerosis, not MD, Muscular Dystrophy. Over that stretch of time, I have learned more than I ever thought I would need to know about the immune system. (Dad is a doctor, Mom a nurse, and I decided not to pursue the medical profession… I wished to avoid needles, thank you very much.) But one of the first things I discovered about MS was that it was in an insidious category of illnesses: the “Autoimmune Disorder.”

I think most of us take the immune system for granted, at least a bit. The immune system attacks nasty germs, keeping us healthy… at least it is supposed to do this. I mentioned at the start of the month how MS is a case of a misguided immune system, where the white blood cells attack spots of the myelin coating of the nerves. These myelin breaks create scars, “sclerosis.” Generally more than one, or “multiple.” And there you have MS.

But if the immune system can attack the nerves, what other havoc can it wreak when it is misguided? It happens that I have friends who have experienced other autoimmune diseases – and each of these is “invisible” in many ways. So this is certainly not all-inclusive, but I will share a bit about other cases of a misguided immune system, five types of immune system mishaps that affect real friends of mine:

  • Rheumatoid arthritis: The immune system attacks the joints, causing swelling and pain. Look at your own body: move a finger, a leg, a shoulder… those are all joints. And you can imagine the frustration. (And thankfulness for medication that helps!) Interestingly, RA is 2-3 times more likely in females.
  • Lupus: Lupus occurs when cells within the immune system become supercharged, you could say, and decide to attack various organs or joints. Frankly, this one was the most difficult for me to make sense of. And about two thirds of those diagnosed with lupus are female.
  • Chrohn’s disease – this disease of the digestive tract can be insidious and is hard to explain to others. Unlike the others I mentioned, Chrohn’s doesn’t seem to care if you’re male or female. Affecting various parts of the digestive tract, this disorder affects people in different ways.
  • Type 1 Diabetes (juvenile diabetes) – the pancreas is that funny-looking organ behind the stomach, and I never thought much about its purpose until a close friend had to give herself insulin shots while I was in college. I found that insulin in the blood helps to break down sugars, and that insulin comes from the pancreas. This is a constant, necessary action… so when the immune system attacks the pancreas, that is not good. Not good at all. (Insulin shots and insulin pumps are wonderful things, but life-altering indeed.)
  • Alopcia – I actually had not heard of this until about 14 years ago, when I was blessed to join a group of college girls in “Project Hair,” a group cutting hair to donate to ”Locks of Love.” This organization was making wigs for young girls with alopecia, so that they could have a quality wig, free of charge, as nice wigs are expensive. Since that time, I have learned more about alopecia. This, you see, is an autoimmune disorder where the immune system attacks the hair follicles, most notably those on the scalp. Sometimes only a patch, sometimes growing back later. And from what I read, the struggles often lie psychologically, as one has to culturally face the lack of hair. The disorder does affect both males and females, but being a bald boy or man is usually simpler in today’s culture. And from my mother’s experience during chemotherapy, I recall that wigs are itchy and uncomfortable. (My friend with alopecia was just sharing last week that this is indeed the case, and it is why she prefers to wear soft knit hats.)

When one has a wonky immune system, so much is affected! I may write more about that later, but for now, I wanted to shine a bit of a spotlight on others whose struggles are often hidden, but who deal with very real challenges. I hope this little glimpse can help these issues become a bit more visible.

For me, it makes me stop before complaining of a “bad hair day,” and I also remember to appreciate my ability to sneak a chocolate snack without needing to test my blood sugar. And it helps me appreciate the parts of my immune system that do what they’re supposed to do.

What it means to be a caregiver to an MS patient

note: as MS varies, so the patients and needs vary – this is my own personal take as an MS patient.

 

As I consider topics for MS Awareness Month, I’ve been bouncing around a bit. I was planning to keep my “teacher” hat on, sharing more general info about multiple sclerosis and what an autoimmune disease really is. But taking a step forward, I realized that I need to share more about a personal part of my MS journey.

I’m accustomed to hearing the term “caregiver” in reference to an individual taking care of the daily needs of somebody who is a bit older than I am… a grandparent, for example. But I am only 43 years old – do I really need a “caregiver”? Really? I was married at age 22, and T.R. and I took those very special vows, the ones about loving and cherishing. And that one line is certainly not one we eagerly anticipated… “in sickness and in health.”

We had three healthy years, then MS snuck in. Didn’t knock or ask permission, it just meandered on in and embraced an optic nerve. It then left that spot, but over the years that followed, MS made its way into my life in ways that were insidious at first, becoming more obvious as time marches on. This brings me to the actual focus here: our loving caregivers.

This is certainly not all-inclusive, but a list follows below.
My Caregiver does many things:

  1. Help me keep on top of things. I sometimes joke about those scars in my brain, but there really are times a draw a blank. Show patience, but move along together.
  2. Work with uncomfortable or embarrassing things. We may sometimes need to do an unplanned load of laundry. And sometimes you help cut food… without making an issue of it.
  3. Accept “slow” as a regular speed, and be willing to accept it without complaint. This is especially frustrating when weather is too cold or hot or rainy… I’m frustrated also. Really.
  4. Remind me (gently) that scheduled plans would have worked a decade ago, but not today. If tears come, let me cry. It’s nothing you did, it’s just life. (and sometimes a version of the said plans CAN work.)
  5. Fill in those gaps I would have filled if MS hadn’t intruded. This means you get to run carpool, chauffer… and many other bits large and small. I like when I can be there too, but that doesn’t always work.
  6. Take care of yourself! We’d love you to be healthy, but this also refers to other parts of who you are. Spend time with friends, doing things you like to do.
  7. Love me anyhow – and I’ll keep loving you!

And I know that’s what we’ll keep doing, “Until death do us part.” I love you, T.R., my “Knight in faded denim.”

…to see T.R.’s perspective as a caregiver, see his freelancer blog

MS Awareness and Education Month – March 2015

The following has been submitted for publication in our local newspaper, as I try to help others understand more about this “MS thing” that is a big part of my life.


“Why do you need a cane? Did you hurt yourself?” This question used to be asked of me quite frequently, particularly when I was visiting my daughters’ school. Our twins were in preschool when I began using the cane regularly, and I had many chats with curious students over the following seven years. The questions changed, though, as time trudged on. For the past two years, young questioners have been a little more confused, “What is that thing with wheels, and what is it for?”

Depending on the audience, my response shares some version of this information:
a. A cane (or walker) helps me so that I don’t fall. (the concrete/carpet/pavement isn’t very tasty.)
b. On some days, my legs don’t like doing what my mind wants them to do. This helps them.
c. This thing called “MS” fights and makes my body uncooperative. I’m not going to let it win.

For those who are really interested, I give a little lesson about what MS is. Multiple Sclerosis actually means “Many Scars,” and these scars are in the nervous system. The brain is our biggest bundle of nerves, and that’s where lots of these scars can be seen by machines (MRI in particular). What makes the scars form, you ask? This is where things get tricky. Our bodies do a fantastic job fighting nasty things that try to invade. The immune system has armies of helpful white blood cells that attack germs, keeping the body healthy. So what’s the problem? MS, you see, tells those cells to fight against myelin, the coating of the nerves (and an important part of brain tissue). So when white cells attack this coating, they leave scars. Each part of the brain is responsible for doing very specific jobs, so you can imagine how little, unwanted bits of scar tissue can affect the brain, reaching into many parts of life.

March is MS Awareness Month, so this is a good time for somebody like me to share more than just an elementary-level lesson about the science of multiple sclerosis. Currently, the National Institute of Health estimates that between 250,000 and 350,000 people in the United States have MS, and about 200 new cases diagnosed each week. So I am not alone; in fact, you likely have a neighbor who has MS. This is what is often thought of as an “invisible” disability, as many of the symptoms simply cannot be seen from the outside. I use a walker now, but I didn’t begin using a cane until seven years after this journey began.

Even though symptoms are not easily visible, they are very real. As Awareness month continues, here are a few MS facts to help you understand the disease*:

  • MS is not contagious.
  • MS is usually diagnosed between ages 20 and 40.
  • Among young adults, it is the most common illness of the Central Nervous System.
  • MS is not hereditary, but there can be genetic susceptibilities.
  • MS does not have a significant effect on life span.
  • Fatigue is the most common symptom of MS. Others include loss of coordination, vision problems, and memory issues.
  • MS is a progressive disease, and there is no cure. But there are therapies that can greatly reduce disease progression.
  • Current research is leading to new possibilities for more effective treatment. Each day, a cure is closer!

March is a month when we can focus on awareness of those in our community who face disabilities, some visible and some not. Let’s use that awareness to encourage and spread kindness to our neighbors.
Angie Knight lives in Upland and was diagnosed with MS in 1997.

*sources: Multiple Sclerosis Foundation, National Institute of Health , and National MS Society.


If you would like to see similar MS Awareness Month posts from previous years, I’ll link to those below. I try to approach the topic a little differently each time… I think the milkshake one a few years ago was my favorite.

2013 – how the nervous system is like an electrical system… and why those scars are problematic
2011 – my favorite – how MS is like an Ivanhoe’s shake
2010 – letter to the editor about MS Awareness

I will try to post weekly during March with my thought of news and happenings related to MS and the disability in general. Stay tuned!

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