Jul 19, 2010

What is your cage doing to you?


The person who posted this to the Motor Neuron Disease boards followed the link with this quote:

"It doesn't only affect us."

I am generally a very "social model" of disability kind of person, but sometimes it fails us. It fails us when we can't do things a different way anymore, when we simply can't do them at all. What the poster was referring to ultimately is being "locked in”, the point that all connection to the outside world ends.

90% of locked in people experience brain death in short order. I am working with a man a little older than me at a local nursing home, and he has been in that state for 4 years. He isn't quite locked in by medical standards, but lack of any kind of occupational therapy has denied him the use of his remaining movement - some level of blinking and a right finger twitch, a small ability to move his head to the right. He is still in there, and I am in awe of his mental stamina. He makes his high effort, small head movement when a pretty lady walks by or one teases him that she has lost weight. He opens his eye widely when dad asks him if he wants to try our newest contraption. We are making progress, and we may have real yes\no\maybe communication this very week! It is a great mystery, what he wants, what he likes, what kind of person he has become. I look forward to really meeting him.

I know that having my communication limited has changed how I think, not just how I express my thought. I think of things to say that didn't come to mind before, things pre-structured to get a positive response with few words. Conversely, I have inner monologues that are new to my thought life, unfiltered for sharing with others. They are the thoughts of a solitary person, even though I live in a bustling house. That is what my cage is doing to me.

Jun 5, 2010

Distilling the Cry of my Heart

As my disease progression has gone bulbar, I am losing my ability to speak. It started with my ability to sing, and now if I talk too much or too loudly I wear out my voice very quickly. It is a philosophically interesting journey. The cliche is "talk is cheap“, and it certainly used to be. I am downright garrulous, and I have yakked late into the night about the most trivial of topics. I shudder to think how many hours I have spent comparing Star Trek series, D&D classes, or debating the best theoretical voting system.

Talk is no longer cheap, but instead priced fairly high. I have to think about how worthwhile a comment is, and like internet posting, it results in a lot of self-censorship. In the meantime, I am setting up a speech device and working on voice banking. Voice banking is the process of recording yourself saying things so that you can incorporate it into electronic speech. It seems simple enough at first glance, but then you realize you are going to be stuck with this collection for the rest of your life! What will you desperately want to say in your own voice in 5 years? 10 years? Does a recorded "I love you" convey more genuine emotion than spontaneously synthesized speech or will it just be repetitious?

Setting up a speech device also makes you divide your life into categories of prewritten phrases. Some serve two functions: "Faith!" could be exclaimed as an answer to a sunday school question or to alert my sister of something. Most things, however, are situation specific. How much work you put in ahead of time to each one is a very serious priority decision. Talkers are impatient and will often change the topic before you are able to type an in depth response. What should you be prepared to say well?

Mar 9, 2010

Xena, Warrior Princess

I just finished watching the full show in order, thanks to Netflix and still being stuck in bed until I get a powerchair. It was surprisingly gratifying on a number of levels. There is an underlying consistency to its alternative myths, though its cosmology is full of holes. There was even a consistent, tragic, ultimately hopeless theology if you ignore the scattered eschatology. It confronted real questions of absolute morality, even when its world had no answers. Silly episodes aside, there was character growth that included greater humility. Humiliity having been kicked out of the virtue list in favor of self-esteem, that is cheeringly old fashioned! Many geek favorites have a tendency to forget previous solutions to problems, ala Star Trek's hastily abandoned transporter ressurection technique, but the Xena team either kept using them where appropriate or explaining why they wouldn't work. I think especially of the "Pinch". It shows up in many other instances, too. They took care to bring a cleanly defined ending for the many repeat side characters, even addressing the fate of future reincarnations.

What most amazed me, given the campy nature of the show, was the ability of the character's struggles to reach my heart strings. The circumstances surrounding their internal morality conflicts were often arbitrary, but explained well enough to put you in the character's shoes to confront their choices. Those choices, whatever the enforcing macguffin, were generally timeless. Where do your rights end and another's begin? How do you confront someone who you have wronged unhypocritically if they need to be confronted for the sake of others? If you don't believe in a mediator, how do you adress a crushing load of sin? If you recognize nothing greater than yourself, how can you be transformed? What weight does the law carry when it fails to bring justice? When is meekness more effective than brute strength? How can you decide which group or individual's needs outweigh the other's?

I really appreciated the chance to watch it all. Watching in order took my enjoyment and respect for the show to a completely different level. I would love to see more long running shows that tackle a good and evil deeper than environmentalism and cultural relativism. I don't have to agree with the answer, but I am grateful when they pose the question.

Jan 16, 2010

A Long, Cold Winter

We often picture life in seasons, and rightly so. Just as nature has its spring and summer, fall and winter, each preparing for the next and leading organically into them, so do we. There are seasons where our social scene is growing, and others when even our daily bread is vanishing. Our marriages come with times of great joy and unity, and harsh storms of strife and discontent.

I am roughly in February right now. Its still hard, the cold biting wind hasn't really let up, but I can see the possibility of spring in my future. Perhaps soon even green shoots and early bloomers will appear to bolster my spirits, then I'll know I made it into March.

I have struggled with depression on and off throughout this winter, as my eyes wandered from the goodness of God's character and love for me, and to the darkness and difficulty of my circumstances. By God's grace, I'm mostly winning. Indeed, I'm surprised to find there really can be winning in this place in life.

1 Pet 4:19 Therefore let those who suffer according to God's will entrust their souls to a faithful Creator while doing good.

Entrusting is not a passive act, it is a very active thing. It is a daily, nay, hourly choice to depend on God to work things to good, to cling to him and the hope he gives, to his promises, and praise him. It is the struggle of Job, of David while running from Saul, of Nehemiah as he desperately tried to get his wall built with small armies amassing against his labor force. When we trust, bless his name in our hearts and with our lips, there is victory. Others might not see it, but Peter warrants it something of worth:

1 Pet 5:9 But resist him, firm in your faith, knowing that the same experiences of suffering are being accomplished by your brethren who are in the world.

Suffering well, fruitfully, faithfully is an accomplishment. It is something to strive for in the darkest and coldest winter.

Aug 18, 2009

Waving Across the River

I find it odd that I don't remember how Irene and I became friends. On the surface, we don't have much in common. She was more than fifty years older than me, truly a Senior Saint. I am overloud, a bit rambunctious, and a little bit of a trouble maker. What started us talking? It's been years. (I'm not sure how many - 6? 4? something in that range.)

Ah, that's it! My ride to church used to sit behind her, and one week she missed the service for some reason. It feels decidedly out of place to sit next to an empty pew spot when you sit in the aisle, so I scooted up one row. We hadn't talked till then, past silly small talk and her consistent and rather undeserved praise of my singing. My attendance was spotty for a few years, than I was out of state for nearly another year, but whenever I made it back she was my anchor in the congregation. She had sitten in the same place for decades, and whenever I wandered back I would sit with her again and we would catch up. (It wasn't just me, seeing Irene's bag is how everyone in that little region knew where the were "supposed to" sit!)

When I came home, our friendship became deeper. We lived through, commiserated through, and vented through many medical hoops. She had cancer, among other things. We'd share our family victories and defeats, and she inducted me as an honorary old lady. She continued to make too much of my singing, telling people they just had to sit by us and hear. I truly don't sing that well, but it makes my heart glad that she enjoyed it so much.

She had outlived four "pew buddies" and warned me the seat was cursed. I cheekily told her that no one had ever sat where I sat, that was the advantage of the wheelchair. We sat together, talked together, worshipped God together, and hurt together almost every sunday for the last year. I missed a few, and she missed a few for the same reason. Every week she missed, another of our old lady club would let us know where she was and how she was doing. This past Sunday, for the first time in a year, she didn't know. I resolved to call Irene and check up on her, but we have a trip scheduled for Weds morning, and a million things to do and I forgot.

I got a call this evening, that she passed away this afternoon.

Irene, thank you for everything. Thank you for enthusiastically welcoming me on every church visit while I was wandering the wilderness. Thank you for taking me seriously as a young crip, most folk your age don't. Thank you for enveloping me in christian friendship, heedless of our differences in culture, background, age, and experience. This is me, waving across the Jordan. I'm immensely enriched for having been able to sit and learn from you, and I wish I had made more of the opportunity. Have a good rest, you have more than earned it. When it comes time for the resurrection, I'll be looking for you. Peace.

May 7, 2009


Ceelie had an encounter with rain today. We've hustled through it before, and gone out with her dad under the awning, but this was a little different. She just sat in my lap, no shoes on, with a light drizzle showering on the two of us. Her arm was snuggled around my neck as she pointed repeatedly at the sky and said inquiringly, "Wain?" The large, cold drops slowly descended on us in what must have only been a minute or two but felt like forever.

It was one of those perfect, indelible moments that you could never plan but will hopefully never forget either.

May 21, 2008

Those Days When Your Ramp Becomes a Boat

This beautiful piece of art was made for me by my sister. It is the first part of a series portraying the innocence of the interactions between children and disability.

[Description: A child squats on a wheelchair ramp leading up to a patio, grasping the side, gazing perpendicular to the camera. The yard around her is replete with backyard paraphenalia. In a thought bubble on the top right, is the following poem:

I found this raft tethered
Unwanted along the shore
Its wobbly and weathered
But will sail a few times more
I followed a little fishy
Swimming, fast and free
We'll sail into the sunset
'Till Mommy comes for me

by Faith K Friedman]