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…”

The power of a picture

or milk, turtles and impressions

When I visit a scenic location or attend an event, I’m not one who always remembers the details. The name of a person or place may not immediately come to mind, but images certainly stick. I was reading a book last month, Less Clutter, Less Noise by Kem Meyer, and she had a wonderful example of the power of a picture.

milk ring turtleAs she was discussing the impact an image can have, Kem shared a photograph she had seen several years ago, a picture of a sea turtle that had been caught in a plastic ring from a milk jug as a hatchling. The little turtle had grown up with the plastic ring around its middle, and the adult turtle was malformed, shaped more like a large apple core. When Kem first saw this image, the point had been that we could do something simple to keep this from happening, simple as clipping the little plastic ring before discarding it.

The purpose behind sharing this image in the book was not necessarily environmental, but it was to make a point: a well-placed image can make quite an impression. In the same way, the way that we are can say so much more than any words. I know, for instance, that people see the care and love shown to me by my husband, as I face barriers brought on by disability, and we’ve had a number of people approach us with comments and questions – even for advice (?!). The milk-ring turtle speaks to us due to the way she appears, and I think we each speak to those around us in the same way.

They say that a picture is worth a thousand words; sometimes, I think an image can speak volumes beyond this proverbial sum. As for our house, we have now formed a new habit: once we open a new carton of milk, the ring is clipped. Every time. And I hope this helps us remember that the impressions we give to others can be more valuable than we may realize.

parking spots and such

I had a new post I was planning to publish today, but there was a discussion I read this morning that I just had to respond to. People were complaining about handicap parking spots. First, the comment was about people using the spots without seeming to need them (I added the “seeming” – they were judging the need, without more information). Another individual mentioned that what bothers her even more is an empty handicap spot.

The last several times we have been to our area Wal-Mart, the handicap spots have all be full, and we had quite a time finding a place to park. This is the biggest reason that T.R. dislikes shopping there. Empty marked spaces in a parking lot are there so that they are available for customers who really need them, and if a parking lot is completely filled, that is a sign that it’s not large enough.

…I just wanted to rant a bit – thank you for obliging.  The comment I referred to in 2007 was in response to the start of the original blog, the concept that many disability issues are unseen, hence the “invisible issues” title.

This was first posted on June 1,2007

And just what does that look like?

I am glad to see some conversations started here! One bit was shared by Laura about a week ago, and that is something I know many face. “But you look so good!” is a nice thing to hear, but it can also be discouraging. Does he mean that I look really nice today, but shouldn’t? Does she mean that I must be exaggerating, I really can’t feel as wiped out as I say I do? Do they mean that I’m being a hypochondriac?

The reason I’m referring to Laura’s comment is that she had a response I hadn’t really thought of before, and I thought it was very well stated. Like many, she has a car with plates marked to let her parked in a “handicapped” spot. And like some, she doesn’t necessarily look “handicapped.” As she relayed in her comment, a gentleman approached her at a parking lot, looking quite annoyed, and informed her that she shouldn’t be parking in that spot, as she certainly didn’t look handicapped. So she extended her hand and said, “Thank you. Thank you for thinking I am not handicapped. Could you tell me what I need to look like to be handicapped?” That definitely caught him off guard, and she went on to explain that she was having a good day, and on other days she might be using a cane or a chair.

With M.S., fatigue is a major issue, and even if a person is able to walk in a straight line without a cane on a given day, walking a distance can use all of her energy. So parking nearby helps at least to conserve a little bit, and this isn’t something that is easily visible. But this is a worthwhile question: what does a handicap look like? What do we expect it to look like?

Remembering Grandma

Two years ago, my grandmother passed away. My father’s mother had the same habit of holding short conversations, but there many unspoken lessons I learned from Grandma over the years. Our daughters talk of their great grandmother at times also – she passed away when they were eight years old, so their memories were of times that Grandma was living in an assisted living facility, but they smile as they tell me of these visits. With today’s economic struggles, I remember Grandma’s lessons from the Great Depression, and even in her later years, Grandma always insisted on reusing bread bags, for instance. And at Christmas, we always saved the bows – so they could reappear on next year’s gift. …maybe this is why I have the large boxes of bows and gift bags under the bed. 🙂 Thank you, Grandma, for the lessons you passed on to us!

First posted on June 27, 2007

Lessons from my grandmother

My grandmother lived a very full life, one she rarely talked much of. She was born more that 86 years ago, and she lived through The Great Depression, the death of a sister, World War II, a divorce, a second marriage, raising of two sons, the cancer and death of her husband, the aging and death of her mother, a number of hip replacement surgeries, having a pacemaker implanted in her heart, loss of her hearing and vision, her own issues of “growing old” and moving from her home of several decades… and these are just a few of the bits I know of.

Grandma was never one for long conversations or for sharing a lot of personal information. My cousin and I joked a few days ago how a phone call with Grandma was great… as long as you remembered to keep it under 60 seconds. (Her son is quite similar, but I’m afraid this granddaughter didn’t inherit that trait.)
Though she may not have “told us” a lot, Grandma has indeed passed on several lessons, ones that are useful at any age.

History matters. Grandma spent a lot of time studying genealogy, finding the historical roots of her – and of our – family. She let me know that if I ever desired, I could join the D.A.R. (Daughters of the American Revolution), as our family can be traced back that far. In fact, Dolly Madison is not just a snack cake brand, but this wife of President James Madison was my great, great… (etc.) great aunt. I had to ask the questions, but remembering information that she had shared with me as I wrote a paper in college, I asked her during our Mother’s Day visit this year to tell her great-granddaughters about her family and the Underground Railroad, as the girls had studied this in school. So she explained that her own grandfather told stories of how the horses in the barn would be sweaty and muddy in the morning, and he later found that his father had been transporting escaped slaves to the next stop in the Underground Railroad. [My father said that this was actually her grandmother, and they have even found her written stories in an old journal. Wow!]

There are times to be stubborn… and perhaps times not to be.
Grandma has always been quite determined, and I remember when she was staying with my younger brother and me for a few days while my parents were gone. (I think I was eleven or twelve years old.) The only thing I specifically recall from those few days is the “peach episode.” With dinner, we were having canned peaches. The peach halves were in bowls for each of us, and when my brother was going to start eating his, Grandma had a fit – Matt was obviously using the wrong utensil! I believe he was using a spoon to slice and consume the said fruit, but Grandma said he needed to use a FORK. (It might have been the other way around, but that wasn’t the point.) Neither would budge, so I think that Matt was told he wouldn’t have his dessert if he wouldn’t use the correct silverware. In their minds, they both won, as he didn’t switch utensils and she kept his piece of cake. But what did this accomplish? Did it lead to better table manners, or help make her time at our home run more smoothly? Not really. (Matt does have very good manners, though I don’t think it’s related to canned peaches.) I’ve watched since then, and after initially dragging her heels (quite understandably), Grandma did move from her house of several decades into an assisted living facility in Muncie. And after coming to terms with the changes, Grandma eventually told us how it was nice not to have to worry about cooking, home repairs, lawn care… I know it was a hard step, and the acceptance did not come easy for her. But she knew this was a time to stop being stubborn.

Time is a beautiful gift. After we moved to Upland, I recall being able to have Grandma and her friend Mary over for lunch at our house on Main Street. Wanting to please and impress Grandma and her friend, I made crab quiche and homemade Swiss cheese bread. Then we had fresh blueberries in Fostoria fruit cups, while we ate our main dish on the Fostoria glass plates that Grandma had just passed on to me. After she moved to Muncie, Grandma lived right by my ride home from Ball State, where I was taking night classes and finishing my Master’s degree. Grandma was much more of a “night owl” than “early bird,” so I would stop by her room around 10 p.m., on my way home from class, and we’d chat for up to an hour. I’d hear of her neighbors in the hall, of her long-lost friend from high school with whom she’d reunited, how her friend Mary really should come live there also… and Grandma would hear about young married life and family news. And she’d still talk about that Swiss cheese bread and quiche I’d made for her a few years back. As the years progressed, the girls and I would sometimes visit Grandma during the day, and on our way up to her room, there would be others who were hungry for visits from family, from children, and my daughters continued learning the lessons of life. Grandma often mentioned how friends had children or grandchildren who rarely visited, if ever, and I knew that for us, this was time well spent.

There are several other thoughts that come to mind, and I’m sure we’ll discuss many of these tomorrow. You see, my grandmother passed away early Monday morning. Her funeral will be tomorrow, June 28, and her grandsons, grandson-in-law, and great-grandsons will be her pallbearers. If there are peaches at the funeral dinner, I don’t know if we’ll use forks or spoons to eat them, but I do know that many special memories will be shared.