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Thursday, June 11, 2015

The Joys & Sorrows of MS Disability Aids

So, I've been thinking quite a lot about the various disability aids, i.e., mobility devices, that are part of daily life with multiple sclerosis. Also, how insanely stubborn I can be about using them.

As most of my friends know, I think, I've been using a cane for a long time. For most of the years since my initial diagnosis (2005), it was a "just in case" device. The symptoms of MS are unpredictable, and having a cane often prevented me from taking a sudden spill when my right leg decided not to work anymore. I buy all my canes from the same place: Fashionable Canes. They have a great selection, will cut the cane to size, and offer fast shipping and good prices. But not all canes are created equal, and there's a lot to consider, especially in terms of the grip.

For a long time, I used a very heavy cane with a hame handle. The hame is actually part of a horse harness. Then I switched to a slim cane with a Fritz handle. All that time, I was using it in my right hand (because my right leg is the one that tends to go on vacation the most). Turns out, I was doing it wrong - and if there's ever any proof needed for the reason we have physical and occupational therapists, there it is. So, I switched to my left hand. It was awkward at first (still is a little bit), but I'm getting better with it. Still, the slim cane didn't feel very stable over the past year, and I knew I needed to make a change.

It was then that I made the tragic mistake of trying a palm-grip cane. Much more stable, unless you count the fact that it caused nerve damage and I lost feeling in my arm from the elbow down to the three outermost fingers on my hand. I'm now about 90% recovered from that, and if anyone needs a 36" left-handed palm cane, let me know. You can have mine! I now use a heavier cane with a fritz handle and so far, so good.

Alas, the cane is only good for good days or short distances. It sucks at the bad days, longer distances. What to do? Forearm crutches. You'd think choosing those would be easy, but let me tell you my friends, it is not. The regular ones you can pick up at any Walgreens weigh about 900lbs and are clunky as hell. You end up sounding like the Terminator at the end of the original movie. My initial choice was smartCrutch but it appears that the company is run by a team of people who fail to realize that in order to sell a product, you actually have to have it in stock. They haven't - for months. I eventually gave up, and after a lot of research, went with Ossenberg Crutches. Those of you who saw me tooling around the Nebula Awards this weekend got to see them in all their glory. I'm quite happy with them so far - they're light, easy to maneuver, and quiet. So, for those days when the cane won't do, there's the crutches.

You'd think that would be enough, but not so much. My physical therapist has strongly recommended that I get leg braces. Specially, PhatBraces, which help the user by returning energy from each step taken. (Energy conservation is the name of the game in MS patients.) So far, I've resisted doing this, mostly because I don't like how the braces feel on my legs and feet. Maybe the custom ones would be better.

And then there's the last step. Right now, on my bad days or when I'm in an area that requires a LOT of walking, I'm in need of an electric wheelchair. This is the most annoying part of all these aids so far. You see, my physical and occupational therapists want me to have one - places like WalMart or when I'm on campus at Western - are simply too far. I can walk it (with forearm crutches), but I'm rapidly exhausted (energy conservation, remember?). Even the Nebula's this past weekend were a lot, and by the time I'd been there two days, I felt like I'd gone a few rounds with Ali. It took two days home to recover from two days there.

The problem is that my insurance company won't pay for the kind of chair I need right now (a transportable one). I've got my eye on the KD Smart Chair (and a couple of others like it). What's nice about it is that it folds up (like a stroller), which means I don't need either a new vehicle or massive (and expensive) modifications to our existing one. My insurance company will only pay for a regular electric chair AND if I must use it in the home. Well, I don't have to use it in the home and even if I did, I couldn't - my home is too small and two floors. (As an aside, my occupational therapist really wants me to move and use the chair at home when I need to - inside the house falls, which happen to me on a regular basis, are very dangerous, as are the stairs.) And a regular chair would require a new vehicle or modifications. And I'd have to move to a different, accessible house. Are you beginning to see the level of complications involved in this? So, that mobility solution is on temporary hold until we figure out some way to tackle the problems involved. (This is one of those times where money might not buy happiness, but it's very good at solving certain problems...)

I leave for the summer MFA residency at Western in just a few weeks, and the forearm crutches are going to have to do the job. If the campus were on a flat surface and not at an altitude of almost 8000 feet, I'd feel more confident. The other trick is how the hell does one carry all this stuff, even if I have it? I guess I could wear the braces, clip the cane to the chair, hold the crutches, and then pray it doesn't rain while I'm trying to get from one place to another. :-)

Well, in any event, we've got a large incoming group of fiction students that I'm excited to meet, and I anticipate a very busy summer session. Wherever you are and whatever you're doing, I hope all is going well in your world.

Write on,

Wednesday, April 29, 2015

I Am Not My Legs

The following is the text of a reading I gave on the campus of Western State Colorado University.


I am not my legs. When I use a cane, a wheelchair, a scooter, when my legs fail with no warning, and I get the opportunity to contemplate the sudden, alarming closeness of the tile floor in the kitchen or the ragged gravel of my driveway, that’s the phrase that keeps running through my mind: I am not my legs. It’s a mantra that reeks of desperation, but it’s the one that works for me.
Of course, what I’m really telling myself is that I am not my disease, that I’m not – won’t – be defined by it. It’s part of me, part of my story, but it’s one color, not the whole painting. And believe it or not, much of what I feel and think about my disease has to do with what I believe it means to be a writer, a novelist, a poet. What it means to be a storyteller.
Let’s start with some history. In 2005, a year before my youngest son was born, I was diagnosed with primary progressive multiple sclerosis. Unlike the more common form of MS, which is called relapsing-remitting, my disease does not and will not remit. It will not relent. It is an autoimmune disease that attacks the myelin sheath of nerves, breaking it down much like stripping the plastic covering off a piece of wire. My MRI that year showed three small lesions in my brain. My MRI this year, ten years later, showed multiple lesions, including an active one about the size of a large marble.
I’m one of the lucky ones. My symptoms began, we think, in about 1999, but it wasn’t until 2003 that they got bad enough for me to seek medical help. It took two years to get a diagnosis and another year after that to get to what’s called a plateau – my disease continued, but the symptoms were under control enough that I was able to rebuild some of the muscle atrophy and leg function. This is an illusion. Muscle power overcoming the nervous system on the micro level, but on the macro level, the big picture is undeniable: the damage to my brain, each and every lesion, is permanent. And the reality of my disease is simple: there is no treatment and no cure. The only things I can do are take medications for the symptoms and throw Hail Mary passes involving chiropractic care, acupuncture, diet modifications, and nutrition supplements – all in the hopes of buying the one thing we all want: more time.
Here are some basics. Ten years have passed since I was diagnosed. 80% of people with primary progressive MS are dead within 20 years of diagnosis. 90% are dead by age 65. Death often comes in the form of pneumonia – immobility is a perfect breeding ground for illness, and so its victims die, sick and drowning, unable to move, often blind, unable to speak. Not pretty, right? And seriously, how much money would you bet on an 80/20 or 90/10 shot? I wanted to die with a headline obituary that read: Eaten by Dragons, Killed While Saving Entire World from the Forces of Darkness, or (my favorite) Came and Went at the Same Time While Bedding 23-Year-Old Twin Playboy Bunnies. Statistically speaking, my end is far more likely to be much less grand, far less pleasant.
But I am not my legs, not my disease, and I’m not a data point in a set of statistics.
From 2006 until 2015, I didn’t go back to the neurologist. If denial is not just a river in Egypt, it’s safe to say I was hip deep and wading deeper. I took the medications to control my symptoms, and as those symptoms got slowly worse, I ignored them. I blamed them on getting older or other injuries from a misspent youth. I blamed them on bad days, which is a sort of mental gymnastics that people with MS do all the time. When I repeatedly fell in the grocery store or couldn’t control the tremors in my hands, when my kids noticed that I struggled with the accelerator pedal of the car, or I simply made excuses not to go somewhere, I blamed it all on other things. I couldn’t be getting worse, right? After all, it had only been… well, it had only been. Time blindsides us all.
A few months ago, I moved to a new primary care provider who said she’d take me on under the condition that I went to a neurologist again. I agreed because I knew what the neurologist would do and say. She’d do an exam, run some tests, and tell me everything I already knew: no treatment, no cure, symptom management, and she’d do all this for the low, low price of thousands of dollars. But what the hell, right? I hadn’t been in a long time and perhaps I was overdue. So I went.
And the first thing she said was, “What in the blue hell were you thinking waiting years to see a neurologist again?!” My reply was what I just said, to which she replied, “And how can anyone help you as your disease progresses if no one sees you?” I shrugged. “I’m holding the line.”
Except I wasn’t holding the line. I’m not holding the line. There is no line. The line is completely fucking imaginary. MS is a personal disease, its course individual, and in the case of the primary progressive form… it is as inexorable as the tides. Her exam revealed symptoms I didn’t even know I had (like this special one: I can’t close my eyes and touch my nose, which means random DUI stops will mean deep trouble). That I have muscle atrophy in all of my extremities. That my reflex responses are reduced or – in the case of my left arm – pretty much gone. All that and more before she sent me for the MRI. Now you know why I didn’t go until someone made me.
And what’s all this got to do with writing? With being a storyteller? Almost everything. You see, I fundamentally believe we’re all storytellers. The fact that I’m standing up here tonight, sharing my work, doesn’t eliminate the fact the every single of one of you, whether you call yourself a writer or not, is a storyteller. Scientists look for dark matter, for what binds the universe together, and I say that when it comes to human beings of any and every shape, size, and kind, they are looking in the wrong place. It is story that is the invisible matter that binds us all together.
Our daily lives are based on story, and over time, we come to share common stories across a wide spectrum of human diversity and experience. Don’t believe me? Let’s test it out. I’ll sing a couple of lines from a song and if you know the song or the next line, raise your hand: “I don't need you to worry for me cause I'm alright / I don't want you to tell me it's time to come home.” See what I mean? That Billy Joel song first appeared in 1978. There are probably people in this room who don’t remember 1978, maybe weren’t even born in 1978, and yet there’s a song – a story song – most of us share. How about this one, “I got sunshine, on a cloudy day…” The Temptations, 1965. It’s not just those specific songs, either, since I could probably find one from every year dating back longer than anyone in this room has been alive and we’d get the same results.
Let me offer a bit more bit of proof before I tie all this together in one of those neat little writerly bows. If you recognize any of the following quotations, raise your hand, and please keep it raised. If you hear more than one you recognize, raise them both and keep them up:
1.                  “The more that you read, the more things you will know. The more that you learn, the more places you’ll go.”
2.                  “So, they went off together. But wherever they go, and whatever happens to them on the way, in that enchanted place on the top of the Forest, a little boy and his Bear will always be playing.”
3.                  “Call me Ishmael.”
4.                  “It is a truth universally acknowledged, that a single man in possession of a good fortune, must be in want of a wife.”
5.                  “It was the best of times, it was the worst of times.”
6.                  “It was a pleasure to burn.”
7.                  "Tomorrow, I’ll think of some way to get him back. After all, tomorrow is another day."
8.                  "As you from crimes would pardoned be, Let your indulgence set me free."
9.                  “Into the valley of Death / Rode the six hundred.”
10.              “Once upon a midnight dreary, while I pondered weak and weary.”
11.              “But I have promises to keep / And miles to go before I sleep.”
12.              “Do not go gentle into that good night.”
How many people do we have? Everyone? Good. It only took a dozen examples, first lines, last lines, famous lines from a children’s book, a novel or a bit of a poem to bring us all together. To prove we are all sharing in the stories of our world and ultimately our lives – because our lives are the source, the well from which all the songs, poems, and stories are drawn.
Look around you. Do it right now. You probably don’t know everybody in the room, at least not well, but yet all of you share story in some way or another. Your politics, religion, sexual preference, gender identity, ethnicity, class, place in the bureaucracy, spot on the hierarchical flow chart or lack thereof… all of it fades before the power of story.
The great science fiction writer Isaac Asimov was once asked what he would do if he was told he only had six months to live. He replied, “Type faster.” That’s pretty good advice, whether you have ten days or ten years or a hundred. Every day, every minute, every experience adds to the well that you can draw from.
So, here’s what I know: I started publishing professionally, which is to say, someone paid me a professional rate for my writing (not copies of a magazine no one’s ever heard of) in 1995. That was a mere twenty years ago. It was early in my first marriage and my eldest daughter, who’s in college now, hadn’t even been born yet. In that time period, I’ve written and sold more than thirty novels, thirty-six short stories, published a chapbook collection of poetry, two collections of short fiction, edited more than a dozen anthology titles, and edited (in all seriousness) hundreds of novels. I’ve contributed, in my own way, to this idea I have that we’re all storytellers, that we’re all sharing our stories in our own way. Not bad for twenty years, but here’s the thing that sometimes keeps me awake at night as much as the muscle spasms in my legs ever do: no one sitting in this room can probably quote one line from anything I’ve written.
That’s okay. Just because I wrote it and someone bought it and published it, doesn’t mean it was any good, let alone quotable. But still… I ache for that one. The one story or novel that will ensure that long after my time is up – whenever it’s up – my kids will still be collecting royalty payments. You know, until recently, we all believed that Harper Lee only wrote one novel and has been living pretty well on it ever since.
I don’t want to be Harper Lee, or J.K. Rowling, or Stephen King. I still want to be me – just with one crackerjack book or story that resonates so well with people, it will be in print when my great-grandchildren are going to high school. And if we are all bound together by story, isn’t the opposite of this our shared fear that our story will not last, or perhaps worse: that we will outlast our own story.
Now, here’s the thing – that writerly bow I promised you. I am not my legs, I am not my symptoms. I am not my disease. And you are not your legs, your eyes – no matter how sparkling, or your smile – no matter how bright. If you struggle with an illness, that is not you. You are not defined by your physicality or mobility or illness or health. You are not defined by your wealth – or lack thereof. You are not your house, your car, or your job. These are just colors. You are your story. Whatever it is, for however long it may last, for whoever will listen.
Share it – with friends, family, children, grandchildren, strangers at the coffee shop, people at the bar you find interesting or attractive or both, colleagues and peers that you admire, and those that you strongly dislike as well. Do this because we’ve already proven that the boundaries of story do not exist. Write it down, talk it out, sing it if you like, but share it. Craft a sculpture, which is a moment of a story frozen in time, paint a picture, which is a window into a story, compose a song or a sonnet, keep journals for your children, take pictures – but not selfies – because you will probably remember your part of the story, anyway. No matter the form or the medium, find a way, any way, to capture your story, and share it with someone, someday. Not because you will be quotable later, not because you will be remembered globally or even locally, but because the value of a story is in its sharing, in its power to bring people together, across any and all boundaries, for even the briefest of moments.
You are your story, and our world is made entirely of story. Stories written out on paper or published in magazines and books. Stories read at poetry readings with snapping fingers in place of clapping and berets that should never be worn except by really cute girls with bohemian tattoos. Stories revealed in songs on the radio or around the campfire. Stories shouted at the cold stars or cried into the wet grass next to a headstone. Stories whispered to small children at bedtime. Stories shared at the water fountain, in offices, in hallways, in classrooms and boardrooms. Stories giggled in the dark of a bedroom with a lover or a spouse. Stories of grand, fictional imagination or the most common of events, of love and hate, happiness and sorrow, sex and death. There is no subject, real or imagined, that cannot be encompassed by the power of story. The medium of words is my way, but it doesn’t have to be your way so long as you understand that finding the medium of your story and sharing it is what matters.
So, we end where we began. I am not my legs. I am my story. There will come a time, I know, that this body will fail me. Sooner rather than later. My disease will raise the tides hurricane high and they will not recede and the words of the stories I want to tell will elude me – or worse, the words will be there, but I will not be able to get them out. And yes, should you wonder, I am terrified of losing the precious gift of being able to tell my stories. But your gift, most hopefully, will not. Story is not just my gift, but a gift belonging to everyone sitting in this room, everyone you know… everyone you don’t. You do not know how much time you have with this gift, but to ignore it is a disservice to yourself, your family, your community, and ultimately, your world.
And perhaps some of you are sitting there, wondering silently, “Why, Russell, in the name of God would you share this depressing crap with us?” And my answer is simple: it is my gentle reminder to all of you:  type faster.
You are your story. Share it.

© 2015, Russell Davis. Please do not reprint this without express, written permission. Linking to this blog post is, of course, fine.

Monday, March 9, 2015

Speaking of MFA Programs...

One of the questions I often field from potential students to the MFA program at Western State Colorado University is what makes us different than other programs. That would be a very long post indeed, and I may write about it someday, but here's a (very) short answer: we're a curriculum-based genre fiction program. Put simply, our students don't just workshop pieces back and forth with a single instructor or a peer group. Instead, we have a curriculum plan that has actual classes where students both write/workshop and study the various genres of fiction. There are also required courses in pedagogy, the business of being a writer and the publishing industry, and so on. It's an intense program.

So, since there's clearly an issue out there in the world with the idea that one type of fiction is more worthy than another (utter bullshit, of course), I thought people might find it amusing to take a look at the required reading (and watching) materials for my genre studies course this semester:

Hondo by Louis L'Amour
True Grit by Charles Portis
Unforgiven (1992) - Directed by Clint Eastwood
Firefly, Season 1, Episode 1 or 2 (depending on source): The Train Job (2002) - Directed by Joss Whedon
Dune by Frank Herbert
20th Century Ghosts by Joe Hill
Sandman Slim by Richard Kadrey
The Name of the Wind by Patrick Rothfuss
The Fault in Our Stars by John Green
Dragonbreath #1 by Ursula Vernon
The Hunger Games by Suzanne Collins

Now, I didn't post this to engage in a long discussion with anyone about what I *should* have chosen, or how I could've chosen differently. I only post it to share with anyone who cares one simple idea: if you want to be a successful writer, you need to study successful writers. You need to read (or watch) a lot of different things and figure out how they succeed and how they fail. How you respond to them as a writer, so you know how to respond to your own ideas on the page.

If you're considering an MFA program, ask to see the reading list. If you've never heard of anyone on it, you might think about the kind of writer you really want to be.

Write on,