Making Lemonade

Earlier this month, I received a lovely card from my cousin Carolyn. We don’t see each other often, but she frequently sends cards with thoughtful, hand-written messages. This one was perfect.

Someday (after we say, “strange, uncertain, and unprecedented” a hundred more times), hopefully we can look back and see some silver linings and rainbows.

I’ve heard before, “When life gives you lemons, make lemonade.” Lemons are one thing,

Thanks, Carolyn!

but when life gives you crazy cancellations, online classwork, cabin fever, and time away from…well, everything, we need more than lemonade. In our corner of the world, I know that several have lost jobs, businesses cannot remain open, libraries are closed, and schools are not open again until fall. College and high school graduations have been cancelled (or delayed), and many spring events are simply not going to happen.

So where are the “silver linings and rainbows”? As Carolyn suggested, I do think we’ll recognize them more clearly when this becomes a chapter in our history books. Even in the midst of a pandemic that we’re still coming to terms with, there are indeed bright spots! How so? Let’s take a look…

·         I get to see my daughters, juniors in college, more than once a week! Previously, T.R. saw them throughout the week, as they both have jobs on campus near his library office, but now I see them throughout the day. I hear about their classes and projects, and I am also able to share in their feelings of loss. But I do enjoy being able to hear the remote chapel speaker each Monday, Wednesday, and Friday at 10 am, broadcast via Instagram. (I finally installed Instagram. It only took a quarantine to bring me forward a bit more with social media.)

·         Technology truly is amazing. When I was young, I remember the cartoon “The Jetsons,” when George Jetson would press a button, allowing him to see and speak with somebody at a different place… telephones were real, even cordless ones, but a personal phone with a video screen to also? Never. …until more than a decade ago when my personal cell phone could “Facetime.” And now, our daughters and other students around the country can use “Zoom” to glean face-to-face lessons from instructors. And on a personal note, our writing group, “Writers’ Bloc,” can still meet. Our weekly gathering was usually around a table, but here we can see faces and share feedback via this online tool. And an even more important issue is solved at our church. A gathering of a few hundred people isn’t supposed to happen during pandemic season, so UCC has very effectively transitioned to Livestream services during this brief (we hope) season. Church members are sending photos, and chatting or sending emails to our pastor to share their thoughts. (or dropping by small a bag or things for his children’s message)… these have made me smile.  I will look forward to days ahead when he’ll gives one of these lessons from the floor near the pulpit again, as kids give random, unexpected responses to simple questions. (Mark’s straightforward replies to these are golden, and I agree with our associate pastor that he should publish a book of these.) Last week’s sermon was very timely, “Live in the present! God holds the future!”. It tied in well to the post-Easter reflection of the apostles’ responses to life after the resurrection.

·         I hadn’t watched late night TV in years, and though I still don’t, our family has been enjoying Jimmy Fallon’s “The Tonight Show, Home Edition.” Taped by Jimmy’s wife (Nancy) on his cell phone, with a little help from their two young daughters. We’ve also enjoyed other quarantine-specific shows, like John Krasinski’s response to the somewhat depressing daily news. His weekly SGN, “Some Good News,” doesn’t just tell of good things, but he helps make them happen. Last week’s episode involved an online prom, and special guests were a big help, giving students around the country a way to experience a Prom experience while social distancing.

·         It’s spring, so the bulbs we planted one autumn are blooming!  Loving family members have snipped daffodils and tulips for me to enjoy. A couple days ago, T.R. and I were even able to take a stroll outside with Knightrider, our first such walk for almost eight months. (His back is recovering nicely after his October surgery.) I loved being outside, particularly with T.R. and Emily!  (Rach was inside finishing homework… she has a tough semester, not simpler with classwork online.)

·         From our sunroom window, we have a nice view of our little corner of Upland. Two bird feeders, attached to our window via suction cup, allow us to view the interactions of finches, sparrows, cardinals, and even mourning doves

mourning doves – “ground feeders”?

who decide the field guide was incorrect in calling them “ground feeders.” We also see other critters from our window, and as we viewed a squirrel using our fire pit table, T.R. snagged and narrated an adorable video. It became his first episode of “Wild Upland.” He is using this new series of his to learn about posting to YouTube, and to enjoy area wildlife on his daily walks. (Episode one was filmed from our back window, but two was filmed while he was on a walk. Others will come also, one posted each Saturday morning. New quarantine challenge, and he’s had fun with it, as we are both fans of nature shows. (Two episodes are there now, a third will be posted this Saturday!)

So what to all do presently? I think it’s time to make lemonade. You’re welcome to enjoy a virtual glass – there’s plenty to share.

MS Awareness Week 2020

Sorry I’ve been quiet for so many months! I have a lot of catching up to do, as many changes have come over that time. But this is a week I had to step in. As I prepared to write an article to submit to our area newspaper, I thought of different angles I could take when making others aware of MS… my favorite past article compared it to an Ivanhoe’s shake, and another had looked at a house with electric issues, but my friend Anne had a clearer thought. MS doesn’t make a lot of sense to her, so how about a basic Q and A session? She was right, so I submitted this Marion Chronicle-Tribune last weekend. And they published it last Tuesday – wow! So here it is for you to read also.                   

March 8-14 marks “MS Awareness Week,” but why should we be aware? According to the National MS Society, nearly one million people in the US live with multiple sclerosis. This illness doesn’t always look or act the same, and you likely have friends or neighbors with MS, unbeknownst to you. I speak from experience. In 1999, we were preparing to move to a different house when we had a telling conversation with our retired neighbors. We had lived next door since 1997, but we didn’t realize the gentleman had faced MS for many years.

When I received my teaching license in 1994, I did not know that a 1997 diagnosis of MS would offer a whole new curriculum to teach from, at least for one week each year. I’ll answer here some common questions I receive:

1. What causes Multiple Sclerosis? Many (multiple) scars (sclerosis) are left when a confused immune system attacks myelin, the white protective coating of the nerves (and the “white matter” in the brain). When the myelin is damaged, scars are created. Why the immune system misbehaves this way is another question, and the answer is unclear, likely including genetics, environment, and at least a dozen other factors. Roughly two thirds of MS patients are female the majority are Caucasian, but examples like talk show host Montel Williams show that every case is unique.
2. How is MS diagnosed? If a physician suspects MS, an MRI of

   

   MRI of Angie’s brain

   the brain can show scars in damaged areas. Other tests involve vision, manual dexterity, coordination, and memory.

3. How old are patients when they are diagnosed? Though it is usually first diagnosed in a patient’s twenties or thirties, pediatric MS is less common, starting around the teenage years or earlier. If a diagnosis first comes in a patient’s forties or fifties, they sometimes realize that earlier symptoms had been ignored or misdiagnosed.
4. What are common symptoms of MS? Symptoms vary from person to person, but they often include fatigue, lack of coordination, visual problems, and weakness. Some patients only ever have one or two relapses, and it doesn’t come back. The most common disease course is “relapsing-remitting,” where symptoms flare up then improve, though not completely returning to the original level. “Progressive” MS does not vary in this way.
5. Does temperature affect a person with MS? Yes! Before MRI machines could assist with diagnosis, a patient believed to have MS would enter a hot tub. If he or she became numb and couldn’t move arms or legs, the diagnosis was certain, and cooling down again restored the ability to move. Hot weather is generally not desirable for those with MS, and air conditioning may not be a luxury, but a necessity.
6. Is there a cure for MS? No, but there are currently seventeen different medications that help slow or decrease its effects. (When I was diagnosed in 1997, there were three.) Until quite recently, only relapsing-remitting MS could be treated with medication, now “progressive MS” patients (which previously had no treatments) have at least two options. I know more about this than I may wish, as I have taken seven of those medications over the past twenty-one years.

Today, new discoveries are being made, and a cure for MS grows closer each day. Until then, the second week in March will remain a time for me to become a teacher again, helping others become aware of MS. If you wish to learn more, visit the National MS Society or MS Association of America.

About the author: Angela Knight lives in Upland with her husband and daughters. Diagnosed with MS in 1997, she was part of an area support group for several years.

a late poem… for my Knight/Charioteer

My Knight (tacking on even though National Poetry Month has passed)
By Angela Knight
A “knight in shining armor”
is who the stories say
will ride atop a charging steed
to chase my fears away.

But what if his armor loses shine,
is dented on its ride,
if he slips from his mount
as it falls out of stride?

No, my Knight can leave that weight behind,
a light coat will suffice –
a t-shirt, jeans, and dusty boots,
they need not be precise.

My Knight is just the perfect mix
of hero, friend and more-
this “Knight in faded denim”
is forever my amor.

Twenty-five years have come and gone,
we’ve meandered, hiked, and walked –
sometimes sat, sometimes tripped,
then we stopped to talk.

Decided feet could use some help,
Wheels could add support.
How lovely to join in this new way,
It could be our special sport.

So now my Knight can take my hand,
Then push with style and cheer…
You see, my Knight has now become
My Wheelchairioteer.

 

(Dedicated to my dearest Knight in Faded Denim… I love you, T.R.!!)

 

Follow this link to read about T.R.’s special encouragement to other “Wheelchair Charioteers” – I look forward to watching this spread. I’m so proud of him!!

Poetry of Disability

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.

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“Scars” by Angela Knight

MS

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.”

MS

Multiple Sclerosis.
More than Scars.
That’s what I call it.
You can call it what you wish.

“That week”…

What am I talking about? Well, “MS Awareness Week,” March 10-16 2019, officially marked that week, though it seems repetitive to me. Every day, week, month I face symptoms of what has become my continuing journey. (Even though I managed to post this one day after the week ended, my daily  awareness level hasn’t changed. I just need to manage time more effectively.) This journey started for me in June 1997, and the scenery has changed along the way.

2006 photo of one slice of, Angie’s brain, scars included

For any interested in reading about the said “scenery,” I invite you to a 2017 post, “So what exactly does MS look like?”. When an otherwise functional nervous system is dinged around by a confused autoimmune system, it can wreak a bit of havoc. Not fun, and mostly invisible to the outside observer. My husband also posted about this particular week at his own blog, Freelance Knight. (Thank you, T.R.!)

Newer information has just been released by the National MS Society. I’m less alone than I used to think. Rather than 400,000, it is now estimated that almost a million people (942,000) are currently diagnosed with MS in our country. And one thing I know is true about this is that no two are alike. One excellent example of this is the courageous interview given by actress Selma Blair. I appreciate her willingness to be transparent and public with her struggle!

Though MS has painted paths of life I had not planned, I do know that faith and family continue to be key. Thankful for medical progress and assistance each day, I look forward  to seeing how God plans to use what I do  have, both joys and struggles. Thank you for joining me for a moment on this journey!