Invisible and silent…

With a majority of my travels keeping me close to home, I find technology a welcome, effective way for me to stay in touch with the world.  First email, now Facebook help to give me a little window into the happenings of friends who live nearby, across the state, across the country and even on other continents.  It is fun to see the “status” of friends, finding out about a child’s first steps, the discovery of a long-lost earring, a good book… or of the loss of a pet, the illness of a friend, or the fatal accident of a high school teacher (this was just a couple of weeks ago).

I’ve just recently reconnected with. a college friend who, like me,  has “invisible” physical issues, though her primary issue is with fibromyalgia.  FM has a bit in common with multiple sclerosis: it can affect energy, isn’t always predictable, it can grow worse in extreme weather, and it is exacerbated by stress.  But there is a big difference:  the most prominent symptom of fibromyalgia is pain.   Significant, extreme pain, not the “just take a couple of Tylenol” type of pain.

On her Facebook “status” this morning, this college friend shared a poem by an RN who has fibromyalgia.  I read this, and tears came to my eyes.

Mornings of stiffness filled with such pain
My soul slowly drowning in Hell Fire’s Rain.
I am alone with this coward that won’t set me free
Fibromyalgia just won’t let me be…
Hours of sleep spent only in vain
He beats at my body inflicting more pain.
Invisible silence, the most evil trick
No evidence to prove that I am so sick.
Debra Van Ness

FM is one of those illnesses that is so hard to understand – I have five friends with this diagnosis, and I will agree that they each appear fine outwardly.  But I know there are things that I will never understand, feelings they experience and problems they face that, though I hesitate to admit, I’m so thankful not to face myself.  And as I read Debra’s words, I know those feelings could also describe those with other internal struggles, things that are even less visible.

You know, I appreciate Facebook, and I must admit that sometimes it causes me to think and ponder more than I had intended.  But you know what else it does?  It leads me to pray.  As our “invisible issues” are brought into the open, we are reminded that nothing is invisible – or impossible – to our God.  Our souls needn’t drown, but be refreshed by our God who can feel our silent pain.  This is a prayer not just for my friends with FM, but for all who are feeling an invisible silence.

The heat is on!

Summer is a lovely season in so many ways, but it’s often so hot! This didn’t used to bother me, but I found twelve or so years ago that this did make quite a difference. I sometimes use the Wizard of Oz analogy, letting folks know that while water caused the Wicked Witch of the West to melt*, this is what heat does to me. I may not visually turn into a puddle, but it certainly feels that way at times! I thought I’d take this opportunity to share a little blog about heat, MS, and superheroes.

*If you’ve seen the musical Wicked, the story is a bit different, but I’m referring to the classic movie and the original book by L. Frank Baum.

First published June 3, 2007

My Kryptonite

I have two brothers, so growing up, I saw my fair share of superhero cartoons. Of all of the superheroes that were a part of the “Superfriends” we watched each Saturday morning, the hero who seemed the most indestructible was Superman. He was faster than a speeding bullet, more powerful than a locomotive, able leap tall buildings in a single bound… but he could be taken down with one little piece of Kryptonite. The green rock might have looked innocent, but it was amazing how one little thing could bring an otherwise indestructible man to his knees.

I’ve never been a superhero (and don’t think I ever will be), but I do have a “Kryptonite” of my own: heat. It’s a funny thing about M.S… heat can make me numb and fatigued as quickly as Superman would weaken when Kryptonite entered the room. If a room is warmer than 77 degrees, the sun is beating down on me, or I’m even wearing really warm socks, I melt (not literally, but I feel this way). In fact, before the M.R.I. machine was developed, this M.S. factor was frequently used to assist in diagnosis. A person would sit in a hot tub (something I used to love doing), and if he or she became quickly fatigued and a little numb, this was a trait of probable multiple sclerosis.

Now not all individuals with M.S. possess this trait, but most do. Summer used to be my favorite season, as I love the outdoors, swimming, hiking, traveling, school break… but summer also happens to be when it’s hot. So like Superman, I am learning to avoid my Kryptonite as much as possible. I now have a scarf that I can soak in cool water to help keep my neck (thus my body) cool; I don’t wear socks when the weather is even a bit warm; and we always stay at air conditioned hotels when traveling to anywhere warm. Canada is higher on our vacation wish list than Florida, and I’m glad I’ve been to Mexico and the Caribbean, as I might not have the opportunity to return.

I think we each have some sort of “Kryptonite,” some more powerful than others. The little green rock didn’t affect Batman or Wonder Woman, but they had their own weaknesses. Not being a superhero fanatic, I can’t tell you each hero or heroine’s weakness… if you want more information here, you can likely ask my husband; my brothers don’t live nearby, but I’m sure he can answer your hero questions. Though he’ll think me sappy here, I have to say that my husband is my “Superman,” and I hope you each have your own hero to help you battle your little green – or big imposing – rocks of life.

“I’ll race ya!”

T.R. and Angie on "Lovers' Lane"
T.R. and Angie on "Lovers' Lane"

I can imagine two young boys, standing side-by-side at the head of a pathway. They decide that it’s time to go to the playground, and the first boy looks at the second, a twinkle in his eye, as he ecstatically issues the challenge, “I’ll race ya!” Then they’re off – though it matters who arrives first, it is the act of “racing” that is almost more fun than the race itself.

Growing up with two brothers, I caught glimpses of boyish glee from time to time (though it was often at the expense of their sister), and it has been fun to catch glimpses of this glee in the boyish heart of my husband. An only child, T.R. may not have besieged siblings in this manner, but he received plenty of practice with his boyhood friends, I think. Currently, T.R. is able to use this fun little phrase with yours truly, proof that his sense of humor is definitely present. Let me explain…

Whenever we visit a location that requires a bit of walking around, we usually bring along a wheelchair. This certainly makes traveling around for a length of time much more enjoyable, as I don’t feel as if my legs are ready to buckle at any time, and we don’t have to be on the constant lookout for a resting spot. And much of the time, T.R. is the one who pushes and guides the said chair.

I’m sure you’ve heard before that there are times one has to choose whether to laugh or cry, as one of them is going to happen. Well, when dealing with disability each day, we have made the conscious decision to laugh, to look for the sense of humor in many situations. I am not horribly fond of riding in a wheeled contraption, but I understand its necessity, as does my husband. So the little boy in him comes out when he’s steering my chair, with me on board. I can tell when I see that grin and the glint in his eye… even if he’s behind me, I can just tell they’re there. And he says the three words: “I’ll race ya!”

You know I trust my husband when I smile and give a countdown. But you know what? He says I always win! I will actually agree, but likely not for the same reason. We all know that if he is pushing my chair, I’ll cross the imaginary finish line first. But what does it mean to “win”? I see so many factors here. I have a husband who loves me unconditionally, for better or for worse (and all of that!). I’m married to my best friend, a man who is an amazing father, one who has a heart with depths I’m seeing more of each day.

I am so blessed to have this “running partner” in the race of life. Happy Fifteenth Anniversary, T.R. – I love you!

When no news is good news

…or “no new glow worms!”

mri of msbrainFor the past twelve years, I’ve gotten accustomed to the “no news is good news” mantra. When I was first diagnosed with MS in 1997, one of the telling signs was an MRI of the brain, showing small glowing spots (lesions). Since that initial MRI, I have had more than a dozen of these scans, and sometimes they show new things, sometimes they don’t.

I will admit that there are many things about MS that are frustrating. I won’t make a list, but unpredictability is one of them. Unlike many more defined maladies, there isn’t an expected course of disease progression. A person can go a lifetime, having symptoms at one time but never progressing. More often, there is progression of some sort, measured in many ways. Basic tests at the doctor’s office test manual dexterity and mental acuity, while an MRI can show if there are new lesions or other progressions in the brain. In an MRI given with dye in the bloodstream, active lesions glow, appearing like “glow worms,” I always joke. So at each MRI, my prayer is always for no new glow worms. If my physical tests (simple walking and dexterity tests) are satisfactory AND no new glow worms have entered my cerebrum, this is a good thing. As the mantra goes, “no news is good news.”

These past twelve years have been a time of many trips to the neurologist, some with “no news,” some with glow worms, some with questions still, some with tough decisions to make. But last week was a first. I had an epiphany: when no news is good news, good news is better news! Let me explain. First of all, I found out that the MRI from that morning showed no new lesions (no glow worms!)… but there have been other months with this news. No, this time even the doctor was surprised. He asked me to do some dexterity exercises, touching my thumb to each of my fingers, both hands at the same time (sort of like playing the piano). Two or three years ago, I found this so frustrating that I asked to do the hands separately – my right hand was a little slower than it used to be, but it was still alright. My left hand though… well, it was a struggle, and I had to really concentrate, so it was hard to move those fingers at the same time as the others. This was a little after I stopped playing piano, as this had become a true exercise in frustration. Well, the doctor was a bit surprised when he asked me to move my fingers in this manner and I DID. Simultaneously and not too shabbily, if I do say so myself. He then asked me if I’d been practicing – I’ve actually tried piano a little bit again recently and I’ve been typing more, but no, I had not. And for the first time in twelve years, he saw IMPROVEMENT!!

I would call this “better news,” wouldn’t you say?

Space Invaders, Yar’s Revenge and musical soundtracks…

It’s funny how sounds can trigger memories at the most unexpected times, isn’t it?  Twelve years ago, I had my first experience in an MRI machine.  As they slid me into the long tube, lying flat on my back, I wasn’t quite prepared for the loud noises. (The headphones they provided were a bit of a joke, as anything coming through was drowned out by the machine.)  A series of loud pounding sounds ensued, so I decided right then and there that creativity was required: I would imagine what could be making such sounds!  As a life science teacher, I knew that Rabies was a mammalian disease, but choosing to ignore this fact, I decided that it was the sound of a mob of rabid woodpeckers attacking an oil drum.  And I was inside the said drum.  This may not sound relaxing, but it gave me something to think about.

Since that 1997 MRI, I’ve had more than a dozen such scans.  Lest I sound ungrateful, I really do appreciate that a doctor can see inside my brain without using a scalpel.  And it isn’t very often that a mother of young children is told she has to lay down and be still – so I do appreciate that.  But the sounds are quite loud.  In 1997, the pounding was primarily what I heard, but in the past few years, I’ve noticed particular pitches being sounded for a period of time, followed by a series of different sounds.  And ear plugs or headphones, provided by them, don’t really make much of a difference.  So the “sound challenge” goes on, beyond the woodpeckers.  Last week I was blessed to have almost an hour in the tube, having scans of the brain and of the spinal cord.  So double the fun!  (I do wish there were a better way to express sarcasm in writing, so in case you don’t know me, I’ll let you know – the sarcasm in the previous two sentences is dripping.  Profusely.)

If you know much about an MRI, you know that the “M” stands for “magnetic,” meaning no metallic objects can come in with you.  (no clothing with zippers or metal fasteners, no hair barrettes, watches or earrings, etc.)  I’d love to bring a pitch pipe with me to hear what the actual pitch of the long note is – I think it’s a D – but since I can’t move or bring metal along, I’ll just have to estimate.  But my imagination is NOT metallic – so in my mind, I can think of all sorts of things with the sounds.  This time, I decided I was inside an Atari console, the kind our family had in the early 1980’s. (I’ve not thought about these games for quite some time!)  With the regularly spaced out, then closer beeps, I was imagining a game of Space Invaders, then came a drawn out noise that made me think of Yar’s Revenge (the game with the giant fly that never really made sense to me).  With the Atari sounds not taking up the entire hour, my mind needed somewhere to go, so I went through much of the score of The Sound of Music in my head (this is how I arrived at D, as the repetitive pitch was the “Re” of “Do-Re-Mi” – a later pitch was A, I think, as it was “La”).  After the final rendition of “Climb Every Mountain,” I still had time and had to switch musicals, so we went to Les Miserables, and I actually thought through “On My Own” and “Stars.”  A bit more of “Yar’s Revenge” sounded, and it was finished.  Out of the tube I came.

What?  No more time with loud sounds to accompany my thoughts?  Maybe next time I’ll get further – I’ll have to start with Les Miz so I can get through the entire score.  I did choose two songs that are near the end… I’ll have to do it justice and start at the very beginning.  I hear it’s a very good place to start, you know. Continue reading “Space Invaders, Yar’s Revenge and musical soundtracks…”