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.

“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!

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?