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!

30 Days of Thanks – Day 30

It has arrived! Day 30 – what 5 things shall highlight this final list? I narrowed that down by this morning, but first I wish to challenge each of us. Can we each identify 5 things each day that we’re thankful for? Fine, I agree – we CAN. But will we? If ending a sentence with a preposition irritates you, feel free to find a different wording method. In honor of preposition placement, I’ll even word today’s list title differently.

5 Things for Which I Am Thankful:

1. schools – As a former public school teacher, the mother of two high schoolers, and a product of such schools, I appreciate the blessing that education is! And ours will start in just a week.

2. reading – I am so thankful that I have been given the gift of literacy! And that so many books are available to us, on paper and digitally.

3. writing – and I’m so glad that I learned to write, not only with pencil and pen, but also via keyboard and pixels.

4. arithmetic – particularly, I’m thankful for calculators. :) I much prefer balancing the checkbook electronically!

5. freedom – to study what we wish, to worship as we like, to do all of these things without persecution. Watching the news makes me quite edgy, as it seems that history is repeating itself in relation to anti-Semitism in Western Europe. Freedom is not free, I know, and I hope that people take to heart the sculpture and sign on the wall exiting Dachau Concentration Camp.  “Never Again,” it reminds us.

 Not to end on a “downer” sort of note, but this freedom is certainly something to be thankful for! And I don’t wish to forget that.

30 Days of Thanks – Day 29

My 30-day journey is almost at its end, and as I was thinking about items to highlight today, I was reading different articles and blog posts. I then happened upon the newest entry from a blogger whose perspectives I’ve come to value during the past few years of my MS journey. Then I realized that today, July 30, marks exactly seventeen years since my official diagnosis. (In the words of this blogger a few days ago, my MS can almost vote.) It’s become an intrinsic part of my life, whether I wanted it to or not.

So today’s post? Trevis Gleason talked of wanting a “day off from MS.” As he says (and I totally agree!), it’s not that he’s depressed and needs a pill for that and not that a nap would make it all better, he’s just tired of the bag that he has been toting for those years (seventeen here), and the things that keep being added to the bag. It does get heavier. That in itself gets tiring.

So I know I won’t be taking a day off or setting down the “MS bag,” but I decided that today’s 5 things would be things I’ve had the opportunity to be thankful for in the midst of multiple sclerosis. Sometimes there are things I couldn’t have experienced if not for the scar-monger that is this disease.

5 Thankful things appreciated more due to MS
1. Others’ examples – I recall seeing the movie “Joni!” when I was young, about Joni Eareckson Tada and her experience. Among my readings today, I discovered that today, my 17th diagnosis anniversary, marks exactly 47 years since Joni haphazardly dove into too-shallow water at summer camp. The inspiring ministry that Joni developed years after this event makes me stop and think. She is certainly an inspiration to me in many ways.

2. the ADA – When President George H. W. Bush signed the Americans with Disabilities Act into law in 1990 I had no idea that this piece of legislation would one day make it possible for me to enter buildings, park reasonably, and have simpler access to parts of life that I take for granted too often. 

3. unique teaching opportunities – I enjoy teaching others (hence the college degrees in education), and I certainly wouldn’t have predicted the live lessons I would be called to teach. Many of them are never written, just experienced. But people are frequently asking for input or assistance in facing issues that would be foreign to me if not for MS. Credibility through obvious experience, I suppose.

4. deeper relationships – My husband doesn’t particularly feel the need to be lifted up as an example, but MS (and its “bag”) has forced the development of a deeper relationship, I think you could say. I don’t often include photos in my blog, but a particular picture has gleaned many comments and questions on Facebook… remembering the beach wheelchair I mentioned on Day 23 of this Thankful Journey, this photo clearly shows the tenderness of my dear husband. (I’ll let that picture be worth the proverbial thousand words.)

 trangiebeach

5. our Father’s love – I certainly didn’t require MS to receive the gift of God’s love, but the weakness this malady amplifies helps paint the picture of my need for His grace. One of the scripture verses I cling to is in 2 Corinthians 12:9: “But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. “ Then the following verse ends with Paul’s statement, “For when I am weak, then I am strong.” (ESV)

And this journey continues… but likely more deeply than it otherwise would,

Trevis ended his musings sharing that it would be nice to LIVE without MS, but since that isn’t currently an option, I’ll live with MS. I’ll add that I may be living with MS, and I may not desire the MS part, but I DO desire to be used just as I am. Whatever that means.

Day 28 – 30 Days of Thanks

As July continues to fly by, I continue to come into contact with many blessings! Some are things I take for granted – good things become too commonplace, I fear. I think this is the purpose of my new July tradition, to continue recognizing the many reasons I have to be thankful.

So what shall we highlight today?

Today’s 5 things I’m thankful for:

1. online school registration – When my daughters were five years old, I had to spend a few hours in different lines in the school cafeteria, filling out different papers and writing at least two different checks… it was rather crazy. The last couple of years, registration has moved more and more online – and this was the first year that it all worked for me as it was supposed to!

2. Corelle dishware – I am thankful for nice-looking dishes that are lightweight enough for somebody like me and durable (i.e. hard to break). Awesome

3. children who get along – As the teen years continue, it is fun to watch and hear the girls interact. The duets they create are a joy to listen to… wish I had been recording the instrumental/vocal Star Wars theme they created impromptu a few days ago!

4. Ivanhoe’s chicken salad – the grilled chicken salad sandwich is not only yummy, but it makes me think of my wonderful college roommate. I was thinking of you during lunch today, Catha, as I enjoyed the Ivanhoe’s lunch entrée you always favored. :)

5. “volunteer” tomatoes – two of our tomato plants are ones that sprouted in our garden on their own, from last year’s plants. We weren’t sure which type to tomato these were until today – they’re ripe, and the orange cherry tomatoes are great! (When two  of our tomato plants had wilted away, we replaced them with the volunteer plants, and these are their firstfruits of the season!)

Day 27 – 30 Days of Thanks

5 “thankful things” for today:

1. breakfast as a family – during the school year, we regularly have breakfast together before folks leave for work and school, and it was nice today to have another of these early together-times, while school hasn’t even started yet.

2. nice naps – after a refreshing nap this afternoon (that I felt a little guilty about), I read this insightful post that helped me put the nap need in perspective.

3. “iron chef” daughter – we used to watch this program on the Food Network, where chefs would be given a particular ingredient, then would create a meal centering around that theme. So a few years ago, we started having Iron Chef lunches, with such ingredient themes as peanut butter, toast, bananas, yogurt… today was blueberries and yogurt.

4. MacGyver – our family has been having a wonderful time watching all seven seasons of this classic series from the 80’s and 90’s. One episode at a time, we’re planning to finish it by the time the girls graduate from high school. 

5. bookshelves – it is so nice to have a way to organize books! Granted, there are never enough bookshelves, but as my husband was sorting through some new additions and doing his wonderful organization wizardry, it was beautiful to see the loveliness of bookshelves in proper use. :) 

30 Days of Thanks – Day 26

5 things of thanks for today:

1. Sabbath – I am certainly thankful for a “day of rest”! Sunday is a day we aim to keep this way, though “rest” isn’t always defined the same way.

2. generous hearts – it has been a joy to watch as our daughters each give their Sunday morning time as leaders for the younger church attendees (ages 3-5). I think they each roll their eyes inwardly when I remind them that the antics they describe are the same things they did not too long ago. :)

3. working washing machine – two years ago, we came home from vacation, tried to wash our clothes, and found that our washing machine no longer worked. I am so thankful that history hasn’t repeated itself!

4. three quarter length sleeves – when a t-shirt isn’t quite enough for the weather but long sleeves are too warm for July, this sleeve length is just perfect. (I usually wear these more in September or October, but this year is a little unusual.)

5. my own pillow – Last night’s sleep was much more peaceful with my head resting on my own pillow. Others are fine, but I suppose that even my pillow falls into the “no place like home” category.

Day 25 – 30 Days of Thanks

What a lovely month it’s been thus far! July does seem to speed by, so I’m glad I’m taking a few moments each day to remember a few things I may otherwise take for granted.

5 things I’m thankful for today:

1. home – Dorothy was right: there’s no place like it. I so look forward to sleeping in my own bed tonight!

2. fast food – on the way home from a lengthy trip, it is nice to be able to stop and pick up a nice, warm meal, one with no dishes we need to wash.

3. Frosties and fries – a Wendy’s chocolate Frosty is a lovely treat, perfect for dipping lightly salted French fries into… mmm! (You may laugh, but try it, and you may agree.)

4. Very fresh blackberries – how lovely to return home and find that our blackberry bushes were starting to offer delicious, ripened fruit for us to enjoy. These were more impressive than anything we saw at the Farmer’s Market last week – and so juicy!

5. comfy chairs – we have had a wonderful week spending time with family, but one thing  truly am appreciating here at home is my comfy chair… I’m sure that my wonderful siblings, in-laws, parents, nieces and all would heartily agree in their own homes now. Wooden chairs, picnic tables, folding chairs and cramped couches work just fine, but the La-Z-Boy retains its special place of comfort for me :) .

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