Remembering Rich

It was September 19,1997, that I received a telephone call from my younger brother.  He had heard on the radio about an accident… a musician who was very special to our family had been killed that evening.  My brother had been with us when we attended Rich Mullins’ concert on August 14 – it was an amazing concert, but I had no idea it would be Rich’s final concert in his home state of Indiana.  I was thrilled to finally hear songs from Rich’s first musical, Canticle of the Plains, based on the life of St. Francis of Assisi (but set in the Old West).  I loved listening to the CD of Canticle in the days to come, and my favorite song was “Heaven is Waiting,” a song that was to become both haunting and encouraging after September 19.  That night, I stood beside the large oak tree in our back yard, stared into the starry sky, and wept… and as I looked up, I couldn’t help but think of Rich’s song “Elijah.”  When I leave I wanna go up like Elijah, with a whirlwind to fuel my chariot of fire, and when I look back on the stars, it’ll be like a candlelight in Central Park, and it won’t break my heart to say ‘goodbye.’  So as I say “goodbye” to Rich again tonight, I’ll share a blog post I wrote in 2007.

this entry was first posted on August 17, 2007

Bound to come some trouble…

About ten years ago this weekend, on August 14, 1997, I attended the most memorable concert of my life. My favorite musician, Rich Mullins, performed in Fort Wayne that night, along with his back-up group The Ragamuffin Band. I attended fourteen other concerts of his from 1984-1997, but this was my favorite, as I wrote in a concert review for the Rich Mullins mailing list.

Part of what made this concert stand out was the beauty of the music with the poetry of the lyrics, most of which I knew by heart. But what else? About two weeks before the concert (sixteen days, to be exact), I had received a definite diagnosis for MS. I didn’t know what this would mean, but as my husband and I were coming to terms with this (married for three years, living in a new community), the lyrics seemed to touch me even more deeply. Partway through the concert, Rich sang a song that I’d always liked, called “Bound to Come Some Trouble.” It was when he got to the bridge that my wise husband – you could tell he’d been a boy scout, as he’s always prepared – pulled out a kleenex or two for his teary-eyed wife. I think these words can speak to so many of us:

people say maybe things will get better
people say maybe it won’t be long
people say maybe you’ll wake up tomorrow and it’ll all be gone
but I only know that “maybe” just ain’t enough
when you need somethin’ to hold on to
there’s only one thing that’s clear –
I know there’s bound to come some trouble to your life
but that ain’t nothin’ to be afraid of
I know there’s bound to come some tears up in your eyes
that ain’t no reason to fear
I know there’s bound to come some trouble to your life
but reach out to Jesus, hold on tight –
He’s been there before and He knows what it’s like
and you’ll find He’s there.

I had first met Rich in 1984, when I was in the sixth grade and he had a concert at our church, staying at our home for the night.  As I grew, Rich’s music grew also – his first album actually came out in 1986, I believe. If a song is going through my head, half the time it’s one of Rich’s melodies.

When I wrote my concert review that August, I had no way of knowing that this would be Rich’s last concert in Indiana, his home state. Rich Mullins died in a car accident on September 19, 1997… but I was so thankful that he was able to remind me first about the trouble that comes our way. This song was on the 1989 album Never Picture Perfect, and that is what life is, isn’t it? We know that life isn’t “picture perfect” in family or health or so many things, but it’s nice to remember that though there’s bound to come some trouble, that ain’t nothin’ to be afraid of.

Truth in fiction

One of my favorite types of literature is “juvenile literature,” that which is intended for older children.  I read some of my favorite books as a child, and Madeleine L’Engle still remains on my favorite list, not just because I enjoy fantasy, but because of the truth and beauty that can be found between those pages.  Why?  I think L’Engle explained this well in her autobiographical A Circle of Quiet: “lf it’s not good enough for adults, it’s not good enough for children.  If a book that is going to be marketed for children does not interest me, a grownup, then I am dishonoring the children for whom the book is intended, and I am dishonoring books.  And words.”

In July, my older brother introduced me to a new author to add to my “favorite” list.  I am glad that I hadn’t read Andrew Peterson’s work before July, as the first book of The Wingfeather Saga left me wanting more, and I have been able to experience book two, North! Or Be Eaten less than two months after the first.  Though these are considered juvenile literature, I found beautiful truth and imagery within.  And one truth within was a truth that is missing from too many of the books that crowd our shelves: our Maker has a plan for our lives.  On page 143 of this work, a bookseller states this well.  “Whether crushed or sheltered by the Maker’s hand, ‘tis beneath it we go, from breath to death.”  (warning: if you have not yet read these books, the review below does contain spoilers of the first one.  Not the second, though… how fair would that be?  It would be like a certain older brother of mine who used to give away the ending of a book as I was starting it.  Not nice.)

Lest this story sound simple, allow me to explain.  Here is a little synopsis of the book:

Janner, Tink, and Leeli Igiby thought they were normal children with normal lives and a normal past. But now they know they’re really the Lost Jewels of Anniera, heirs to a legendary kingdom across the sea, and suddenly everyone wants to kill them.

Their escape brings readers to the very brink of Fingap Falls, over the Stony Mountains, and across the Ice Prairies, while villains galore try to stop the Igibys permanently. Fearsome toothy cows and horned hounds return, along with new dangers: a mad man running a fork factory, a den of rockroaches, and majestic talking sea dragons.

Finding they’re royalty, as wonderful as this may sound, did bring on responsibility, not all of it welcome.  12-year-old Janner, the oldest of the Igiby children, faced this question as they started their escape.  “Is it worth it? he asked himself.  Was it worth his losing his own life in order to learn the truth about who he was and who he was becoming?  Yes.” (p 79)  Among other things, this book was the story of Janner and his very unusual coming of age.

In the first book, On the Edge of the Dark Sea of Darkness, the Igiby children were told their roles, intended since birth.  Janner, the throne warden, was not to be king – that was his younger brother Tink.  No, Janner’s role was to act as protector of the king, to keep him safe. Reading how Janner acted as caregiver to an unwilling brother and how the weakest of the three children, their young sister who needed a crutch to walk, overcame the largest of their physical obstacles … these aspects spoke to me personally, falling into the “Invisible Issues” theme of this blog.  And yes, I needed a few tissues along the way.

Andrew Peterson’s storytelling was gripping, his style engaging, and his characters memorable.  The story is one of love, redemption, family, responsibility, honor, and so much more.  And you know what?  I think Madeleine L’Engle would have liked it.

My personal September 11 anniversary

I still have that red tootsie pop, uneaten, in a little box of mementoes. It’s been there for about four and a half years. But wait a moment… I’m sure you’re wondering what in the world I’m referring to… allow me to explain.

My husband and I jokingly refer to me as “the poster child of injectible MS therapies.” You see, multiple sclerosis is one of those illnesses that has no cure. There are several factors that work together to trigger the disease, that set the immune system awry as it attacks the coating of the nerves, but without a particular cause to target, vaccinations and solutions cannot exist. Despite this limitation, however, there are “disease-modifying therapies,” medications that can help slow down disease progression. These therapies weren’t available until the mid 90’s, and three of them were on the market by the turn of this century. A fourth came at the start of this decade, and the four have something noticeable in common: they are given via injection. After our girls were born and I was able to take one of these medications, I did – and my doctor and I questioned the efficacy of each (there were still “new glow worms” in my MRI’s, though they didn’t come quickly). While I was taking the fourth of the medications, a new therapy was released, one that had proven to be much more effective in clinical trials. Though it wasn’t a cure, it did, in effect, put the brakes on new symptom development for MS patients.

This medication? Tysabri was the name. In January 2005, I was the first person to receive this treatment at the infusion center of Fort Wayne Neurology. The other four MS medications involved an injection one to seven times per week (I’ll spare you the details), but Tysabri was given monthly as an hour-long infusion at the medical office. I got to sit in the waiting room for an hour after, to make sure I didn’t have any type of allergic reaction, but then I was free to go.

“So what’s with the tootsie pop?” you may be wondering… I’m getting to that. I think the nurse in Fort Wayne was as excited as I was. Montie was thrilled, and she wanted to do something special, as she knew how long they had been waiting to offer something with this type of promise. “I wish I had a medal or something to give you,” I recall her saying, “…but wait!” And from a drawer she pulled out a red tootsie pop. I have a bit of a sweet tooth, and I’m surprised I didn’t consume the thing, but it was too special, as it was my single memento of that hour in the infusion room. I experienced no side effects (unlike the four other medications I had taken), and I would have walked away with just a Band-Aid. But I had my tootsie pop, and it made me smile.

I was only able to schedule a few weeks in advance, and I returned a month later for a second infusion. But then, on February 28, I called to set up the March infusion… and as I look at press releases, I see why it was so difficult to receive an answer from the scheduling folks. You see, Tysabri had been pulled from the market about an hour before I called, and offices were to stop giving the medication. RIGHT AWAY. No more. And thus ended my first Tysabri experience.

Why was it pulled? Two individuals who had been taking Tysabri, part of the original study group, had developed a life-threatening complication, PML. (If you are curious, this stands for Progressive Multifocal Leukoencephalopathy – which can be sung to the tune of Supercalifragilisticexpialidocious, I have found.) Upon extensive study, it was found that because these two individuals were taking another medication also, the combination of these two drugs weakened the immune system too much. PML is not extremely common, but those it strikes tend to be organ transplant or AIDS patients. And PML is like MS but much worse, and it is often fatal.

I understand why the FDA pulled Tysabri from the shelves, and I did end up restarting an injectible therapy. But I was a bit frustrated… before and during my Tysabri time, I hadn’t needed to use a cane or other mobility assisting device very often. Though I was convinced that my every-other-day injections were helping, I did slowly progress, and the folded cane I had kept in my handbag was unfolded and used quite frequently (almost always, in fact). But that’s another story – now back to Tysabri.

This medication, this treatment that was so helpful to so many, was reexamined and studied quite rigorously, and after much support was expressed by researchers, doctors, patients and such, the FDA did reapprove Tysabri in July 2006! This meant that physicians, nurses and patients would take part in the “TOUCH” program to closely monitor responses to and progress with the medication. While all of this was happening, the office in Fort Wayne was to become part of a new wing with a new infusion room, and I had another “first.” I was not only the first Tysabri patient in 2005, but I was the first Tysabri patient and the first individual to have an infusion in the new room there in 2006. No tootsie pop, but that was perfectly fine. It was nice to have something happy to celebrate on September 11.

So today, September 11, 2009, marks the third anniversary of my Tysabri infusion (this time anyhow). People like to ask if the medication is working – that’s a tough question. What it’s supposed to do is keep me from rolling down the hill of progression as much as possible. Following that definition, I do think it is doing its job. I’m not using a cane or wheelchair in my dreams, and that could become reality eventually, but for now I’m thankful for what I do have, even if I have to sing my blessings to the tune of “Supercalifragilisticexpialidocious.” I have a lot to be thankful for, and September 11 is a day for me to remember that.

Well, SOMEBODY’s gotta do it!

…or “what’s to appreciate?”

On the Discovery Channel, “Dirty Jobs” is a show we certainly enjoy.  In his show, host Mike Rowe shadows somebody holding a job that most of us would not desire: cleaning up roadkill, sterilizing dirt filled with chicken droppings, scrubbing ocean buoys… not fun, but somebody’s gotta do it.  Rowe shows respect for the men and women who are sometimes looked down upon, but who go where others will not tread, showing skill, courage and bravery that is finally recognized on the public stage.

When you think about it, the natural world around us has its own “dirty jobs.”  If not for a few undervalued members of the animal kingdom, we would be neck deep in the refuse of life.  I read last week that today, September 5, is a day set for us to gain awareness of and appreciation for the most undervalued “dirty jobs” cast member of the natural world. 

Vulture Appreciation Day?  What in the world is there to appreciate about these ugly, bald birds that eerily circle above carrion?  Reading more about this “holiday,” I saw that it is actually International Vulture Awareness Day, giving us all a moment to pause and consider the valuable place these scavengers have in the circle of life (enter the theme song from The Lion King, which is now traipsing through my head).

Unlike predatory birds, like our nationally celebrated eagle or the majestic hawk, the vulture does not kill its prey.  It may not be a vegetarian, but the only meat this carnivore enjoys is that which has already died.  Deceased rats, squirrels, rabbits or any roadkill provide a good meal for these avian trash collectors.  Worms and fungi have their place in the natural world, but when you think about it, you have to appreciate how these fowl help to rid the world of much of the foul “leftovers” of disaster and disease.  (…yes, pun intended.)

Monday is Labor Day, a day for us to appreciate the laborers of our society.  I suppose we can take a moment to appreciate the natural laborers that help make this world a better place.  It isn’t always a fun job, but somebody’s gotta do it.