Cataplexy

It was a day like any other. My normal days vary a significant degree from your normal days. When's the last time you had a conversation with a someone who is deafblind? Don't feel bad. I am not accusing you of anything. You could ask me when was the last time I had a conversation with someone who ISN'T deafblind.....I don't actually have a whole lot of those.

Manifestations of anger and legitimate frustration are rarely as much of a surprise as I wish they were. These are not my own. They are Haazim's. Still lacking constructive ways of communicating, and relying on tantrums as the most horrifically efficient way of conveying desire, he knows how to bring about an adrenaline rush that leaves me shaking in a pathetic stupor of consuming incompetence. When a child is willing to abandon all sense of self-preservation as a means to an end, it makes it hard to know how to intervene in a positive manner.

I can usually sense an incident's proximity.

So, on that day like any other, I was helpless. Outside of the school campus, walking the streets of Salt, I became tragically aware of his mental preparation to battle. The reverberations of such defiance were being silently issued by his listlessness. Already too far from the school to come up with proactive distractions, I was sensitive to his cues. Accommodating his curiosity, rather than subscribing to ignorance, I take preemptive steps to prevent the kind of misunderstandings that incite his volcanic rage. For each cue, I am willing to stop walking to give Haazim an outlet to talk in his own manner. It might be a tug on my arm, as he tries to establish an imaginative hierarchy of power which crowns him king of schedules, lord of field trips and perhaps I am the jester. It might just be to allow him to smell the air, dank and homely, a mix of sickly cats and rubbish and recently sprouted plants that still cling to hope that more rain will indeed come. It might be feeling the littered pavement, which still has a lingering chill that makes it seem as if winter is obnoxiously unaware of its obligation to succumb to the changing of seasons. He seems accepting of my offerings of goodwill, and all is well.

With the school in sight, my misgivings spring up and I sense inevitable defeat. With a ninety degree turn, Haazim declares an end to the goodwill treaty I had offered up. He senses something, which I cannot discern. Whether it was the distinct feel of the crumbly, craggy, concrete steps, or the aroma of dusty chickens in a nearby shop, it didn't really matter. He wanted something. There was no discussion. I was dismissed, and no amount of signing registered any meaning. I once again responded to his communication, but eventually we didn't obtain that which he was looking for. And just as quickly as he realizes that I don't know how to help him, he screams and throws himself down the cruelly apathetic concrete steps.

With several people around to witness this spectacle, I am frantically embarrassed. I furiously sign to Haazim that we are finished, and we are going back to school. He pulls away and claws at nothingness, resigned now to inflict damage rather than explore in calm cooperation. As I take his hand again, he tries to bite me. I would have yelled, but in the confusion, my heart seemed to have relocated to my esophagus, making any sort of vocalization impossible.

I step back. Other voices suddenly cut through the 10 second calamity that has enthralled my brain for what seems like days. It is a butcher. In his most sternly reproaching tone, he is screaming "Shame. Shame. Shame on you boy." The Arabic words sweetly slash my ego, and then I realize he is supporting me and scolding Haazim. I appreciate his candor, and kindly inform him that Haazim neither sees nor hears. His contempt falls on deaf ears. He nods in understanding, then promptly yells at Haazim, "Go back to Brother Andrew (the institute's director). Back to school." I smile, somewhere in the recesses of my mind, but my face bears no expression other than simple fatigue. I pick Haazim up and we return to the school. No one wins the battle. We both lose.

When it comes to choosing between a tantrum and cataplexy, I'd take cataplexy. Cataplexy doesn't carry the undertones of disdain that the tantrum inflicts on my tender soul. Working with deafblind children has given me a stronger resolve, and a tougher exterior. But it hurts when I am often overtly strict, or expressly severe in punishment. The toll of often sailing the waters of "last resort" leaves me feeling hijacked by pirates. Some pirates have good intentions and jolly dispositions, I suppose. I do prefer, though, a calm lake that is crowned by a wearily descending sun. The kind of calm waters that only come with having actual knowledge and training that dictates action, rather than the intuitive responses that have been characteristic of my work.

I give Mohammed a chocolate. I want to be better, for him. He starts to peel back foil, but hands the chocolate back to me. An implied, "You do it. You're better at this than me." A devilish impulse incites a twitch in the corner of my mouth, producing a vile snarl of pure evil. I let him feel as I delicately remove the wrapping, and promptly put the chocolate in my mouth. In dismay, he feels my empty hands. He couldn't believe his fingertips (eyes). I give him a second chocolate, and we begin a dress rehearsal of my self-produced play called, "Learned Helplessness." The second chocolate has unparalleled deliciousness. I savor it. Mohammed can hardly stand my reprehensible treachery. He calls for another chocolate. Not even acknowledging me, his determination is victorious. As he eats it, I wonder what vengeful thoughts are stewing as he considers the fact that he could have eaten three chocolates instead of just one. I like to think that this kind of exercise makes him appreciate independence in a tangible way, but it probably jut makes him appreciate the times when I am not around to assist in the consumption of his chocolates.

Recent forays into prayer- Mohammed has been taught that prayer is about spewing predetermined lists of blessings as they have been dictated to him by a peer. I have countered this by making prayer into a conversation. We have had many gems come out of this interaction. One day, with a seemingly genuine concern, Mohammed requested a blessing for Satan. I laughed. In one of his first self-constructed prayers, at the end of an exhausting day, Mohammed prayed this: Thank you God, bless me, that is all. I laughed again. And then, in one of his most brilliant moments (regardless of his understanding of what he said), I asked Mohammed, "Why do we pray?", which left him utterly stumped. I had him ask me, and I replied, "I pray to talk with God." I asked him once more, expecting him to copy me, but instead he replied, "Because I love God." I told him that he had given an exceptional answer. I wasn't sure if I was even grasping how exceptional that answer is.

The tantrums. The communication battles. The prayers. The daily surprises that are more challenging than I am capable of handling, yet somehow handle. But I'm not cataplectic. I wouldn't take cataplexy. Cataplexy wouldn't get me through a normal day. My normal days vary a significant degree from your normal days. It's a good thing. Peace.

Thermal Fusion

It's 5:15am, and it is my day off. Some usually delightful tune issued from my iPod has turned sour, disrupting my slumber. The melodious cacophony prompts a grotesque smile as I rise from my bed, though I dare not stand. I know perfectly well why I have chosen to be awake at this most unpleasant hour. I can taste some formless messages being emitted (either by my own body or an otherwise unpleasant demon of the unconscious dream world) which are inducing a mild euphoria at the prospect of returning my head to the comfort of a pillow. But, the sweetness is also alarming, and its allure is akin to what I imagine addiction lusts for me to experience. I vaguely remember a public service announcement about a frying pan, eggs, and a brain on drugs. I try to avoid things that could be addictive. Apparently, my logic has defined sleep as "addictive", so I indulge only in moderation.

The frying pan reminds me that the burners on the stove in my apartment are still issuing pathetically useless yellow flames. I dismantled it a couple days ago, checking valves and pipes and tubes, then reassembled the stubbornly cool fire utility. I haven't figured out how to fix it.

The grotesque smile creeps back as I take the full two steps necessary to cross my room. I have committed to being awake, which makes me happy. Not enduringly happy. More like the kind of happy I am after spraining an ankle and realizing I can "walk it off". It is relative happy.

Although I have only traversed a couple feet, my right calf is already issuing protests to remind me that it has been strained. I look down at the calf disapprovingly and in reproach. My calf lacks sensory mechanisms (such as eyes) to receive the full effect of my ire, although this doesn't stop me from imagining that tiny hands within the muscle fibers are clapping together in apologetic embarrassment.

I stand over my little bookcase, taking in the nuisance which woke me up, mildly amused by how something so cathartic can be circumstantially manipulated into an annoyance. Enough of my alarm-set music. iPod: You are honorably discharged for the morning. Sleep demon: Pathetically dispatched for neglecting to understand psychology. I am much more likely to succumb to flattery than to a simple assault on my sleepiness. Sleepiness has little effect on the fact that I am training for a half-marathon. Awake or not, I feel compelled to run so that my body won't fall apart in 3 weeks on the day of the race.

I sit back down on my bed, ready to lace up my minimalist Adidas running shoes, and I remember yesterday. It quickly flashes through my mind. Yesterday was horrible. I was teaching Mohammed about time, and we were focusing on minutes. These are new to him. So, I took a little foam clock and put braille on both sides. One side has the numbers for the hours, the other has 5 minute increments. The plan was to feel his tactile watch, and then arrange the hand on the model clock to the equivalent number of minutes. Mohammed didn't grasp the correlation, and set about to simply wait for me to help. I told him to do it by himself, which he did, somewhat defiantly, by simply twiddling around for a couple minutes without really setting out to solve the problem which was before him. Looking back, I think this is approximately the time in which he was already mentally checked out.

I helped him to arrange the clock, and then asked him to read the number. He was way off, so, we decided to focus on reading the numbers. My impatience was already brimming over, but I wanted to try to go slow. He stumbles on "0", but then correctly identifies 5, 10, 15, 20, 25, 30. His grasp of quantities is improving, as is his braille reading. Then, we get to 35....he hasn't memorized this far. He guesses, wrong, and I help. We move on. He gets 40, he gets 45....then comes 50. Mohammed is initially wrong, and then just doesn't care. No longer interested in actually reading the braille number, he is simply spewing out random numbers to show that he hasn't saved this data into his hard drive of a brain. He is protesting the thought process which I am subjecting him to. As he feigns focus, putting up 3's and waiting for my response, my inexperience once again takes hold. I slap his hand down, and tell him to read. To focus. To think. But, he would rather just keep aiming blindly at whatever the target answer is, using buckshot from his database to hopefully cover the possible answers while I wait. I repeatedly slap his hand down, asking him to show me where he is seeing a 3. He doesn't know, nor does he care at this point. I show him that it is a 5 and a 0, together. His mind is already in the kitchen, ready for lunch. I am fuming. He finally mirrors me, acknowledging that it is 50. It wasn't even school at that point, just an infuriating power struggle, which Mohammed only moderately understands the dynamics of. We go to lunch, Mohammed's father shows up, and he goes home for the weekend. I feel rather pathetic as a teacher. Yesterday was horrible. Today is better, I have already decided.

I look back down at my laces. I am not a masochist. I do, however, feel like a poor performance at works provides a little bit of motivation to push myself to be better at whatever I do. I step out my front door, and take a deep breath, in anticipation of 8 grueling miles. A sense of accomplishment comes over me as I realize that I have beat the sun in rising. I take off.

The running sends me through a wormhole. Time passes without me actually experiencing more than a few moments. An interested pedestrian says, "Good morning", with a smirk. His intrigue stems from my exposed lower legs (!عيب), blond hair, strangely attractive beard (I'm fairly certain he thought I was quite a looker), and the fact that I am running mindlessly around Salt this early in the morning. I tumble across an unknown distance. I am pulled back into the normalized time continuum by the honking of some admirers. They are shabaab, young men with their own culture (of which volumes could be written to detail the precise mannerisms and general behavior they often exude). They are cruising around, packed into their blinged-out green Hyundai, even more mindlessly than the manner in which my now jellified legs are carrying me. Back into the wormhole.

The sun shoots unpleasant rays into my eyes from around a hilltop. I feel as though I might have died. I realize that it wasn't the sun which did this to me. It was merely the luminous burst that prompted an awareness of my current state, as induced by too much running. The sun is a powerful thing. I cannot fathom the energy it produces by thermal fusion, but I appreciate it in the same way I appreciate good friends or a plate of spaghetti (not to say that friends and spaghetti are the same thing...I can distinguish the two on most occasions). I finish running.

Back to fusion. Although the time is still far off, I am already contemplating what is will be like to leave this place. To have invested so much of my time as a service worker primarily into a relationship with one student...well, that does not make for an easy transition. I feel like I have stepped into a process of fusion. Rather than two atoms fusing together in a gracefully exothermic ballet, it is me and Mohammed. We are interacting in very rewarding ways, which impact not only ourselves, but those around us. Apart, we are what we are, but fused, we do a lot more. The form of my service work is impacted by Mohammed. It transforms who I am, and who he is. It shapes me, Mohammed, and many others, in direct and indirect ways. Our exothermic equivalent is the vitality that we receive, the things we learn from each other, the relationship that is formed, and the changed perceptions on deafblindness.

Fusion. Clever analogy in what could have been an uneventful, rather forgettable morning run. Thank God for faithfully providing me with such moments of reflection. If you haven't yet, go out and look at the sun. The luminous burst is captivating. And may you remember God as you think of the fusion present in your life. Peace.

Crying Out

In the midst of program renovations and personal struggles of daily balance, I had a delightful obligation thrust upon me. A personal appraisal report. Evaluating myself.

Let's be honest. I am not satisfied with how well I do my job, because I have such vivid delusions of utopia. I see beyond what I am doing wrong, identifying what I should ideally be accomplishing. Not just the ideal, but the unattainable. I wouldn't classify myself as being entirely naive, but I certainly do maintain an admirable amount of wide-eyed, born yesterday-ness in regards to my expectations. It is as if I'm subscribing to the cliche' "Shoot for the moon, because if you miss, you'll land among the stars" notion. Sigh. More like, "Shoot for the moon, and lasso that smugly deformed heavenly body and bring it down a couple levels". And, as we both know, I lack the Herculian power to wage a futile moonbattle. I can't even do the moonwalk.

It is both fair and unfair. Unfair that my student doesn't have a professional to work with. Unfair that I expect myself to fill the role of professional. Fair that I chose to do this job, and to do my best at it (and, even more confounding, was my eager willingness to do it). Fair that I should expect this to be more than a tantalizingly entertaining experiment in cultures and service and independence. Fair that I should be able to say I am failing to be an excellent teacher without necessarily saying that I am failing to serve in a Christian way.

So, I am sitting and chuckling at some of the finer points of my personal appraisal form. Dating from the start of my term, a year and a half ago, I am supposed to address which of my "responsibilities have proved most difficult during this period". My sarcastic muscles haven't been flexed for so long, and it is hard to force myself to answer seriously. My initial thoughts, though, were somewhere along these lines: Well, having no prior experience in education, and having majored in biology in college, I would say being thrust into the position of full-time educator and program coordinator for an individual who is deafblind has proved most difficult. A concise answer that blankets over the gamut of responsibilities that my job basically entails. Boils down to an equation. Most difficult thing= my job. But that sounds too horribly positive and upbeat for me to just leave it at that.

I am looking into things like transition planning for an 18-year old that still gets confused about responding to simple questions like, "What do you like to do?". By transition planning, I am think vocational options, communication strategies, and targeted activities for increased independence. I don't feel like I could put together that kind of portfolio for myself. And I am supposed to do it for Mohammed? I mean, why waste your time scratching out a thesis paper into firewood when you know you're gonna burn it anyway. Yeah, that pretty much sucks the hope out of the room, wraps in a neat bow, then tosses it into the all-too-familiarly unkempt squatty potty at my flat.

And yet here I am, delightfully scratching away with a dopey grin plastered across my face. Almost as if I have been duped into thinking that I am coloring a Spiderman poster. But there is a reason. And this reason happens to reside in the realm of sanity (research shows sane people hold more credibility than the insane, but I have my doubts). And my reason is that I am crying out. I'll keep forging onward, but I'll be screaming for help while I trudge on.

In Mark 10, Jesus encounters Bartimaeus. Bartimaeus, a labeled and recognizable outcast, is likely looked upon in both pity and condemnation. Pity for his blindness and poverty. Condemnation for the supposed sin which brought this condition upon him (who cares if it was even his sin, right?). But, he doesn't really care about that when he finds out Jesus is passing. Bartimaeus cries out. And is healed because of his faith.

I am not a spiritual figure coming into the life of disabled persons, healing them. I'm more like Bartimaeus. In some instances, though, I get to also be the advocate, standing next to Bartimaeus. And rather than judging, assuming, or pitying, I get to simply join in the act of crying out. Or, maybe just cry out because the person beside me doesn't know how to. That is more like what my job is.

And this question, on my appraisal report, was so good for me to reflect on. The question and reflection:

1. In what ways does the work you do parallel your understanding of MCC’s mission to help bring peace, justice and comfort to God’s children?

See Matthew 25:40 (...whatever you did for one of the least of these...you did for me.). In this context, a deafblind individual is perhaps very deserving of the title “least of these”. It isn't that such a designation is derogatory. I certainly do not intend it to be. But, to be multi-sensory deprived means to be inherently disconnected from the beginning. To be labeled in such a distinct way, then pitied and stigmatized and misunderstood. At age 18, Mohammed doesn't know how to ask questions. He doesn't know how to express his feelings, or have a normal conversation. He can't tie his shoes. He has never been given real control over his life. It is one thing to be blind Bartimaeus, crying out for Jesus. But, to not even understand how to cry out for help, or comprehend that people could respond to such a call: This takes social exclusion to a whole new level, bringing together a lack of empowerment, misconceptions, and unfathomably minute awareness of one's own potential.

Working so intimately with Mohammed isn't merely a matter of education. It is about elevating him out of the prison of prolonged ostracism. It is about informing people about him, and changing perceptions about individuals with disabilities. It is about reaching out to a culture that sometimes misinterprets what it means to be multi-sensory deprived. In doing this, I am not just bringing peace to one child. I am not just striving for justice for individuals who are deafblind. I am not just comforting Mohammed. I am reaching out to an entire community to break down barriers that are self-imposed, and are preventing some measures of peace, justice, and comfort for more than just the students I work with. It may merely be a pebble tossed into the ocean, but I hope to break the surface tension, disrupting placid waters with ripples of awareness, compassion, and advocacy. I think this aligns with what I interpret MCC's mission to be.

Which brings me to my final equation. Most difficult thing= My Job= Most awesome thing (you can figure out if this transitive relation applies to your life at your leisure). And that is why I do have a dopey grin, and a rather tired face, at 3:00am. Although I am still a little bitter that the appraisal form didn't address more of my strengths.......Beard Growing: 4= Examplary-- outstanding; exceeds expectations.

Peace.

Looking to the Ocelot

I have pondered, for many years, what animal I would most like to be. To me, it seems a very relevant question. In virtually every conversation I have, I can imagine that the subject would come up, and it would be rather embarrassing to not have an answer loaded up. I mean, to simply say, "I have no idea what animal I would choose. That is a daft notion...being an animal." Well, it seems even more daft to not have pondered the thought. It is of tremendous importance.

Ocelot. I mean, for the purpose of small talk, I might sometimes go with newt as an icebreaker. Or platypus to garner adulation. Or even the yeti crab, to display sophistication and uniqueness. But ocelot, that is my most sincere answer.

The ocelot: Sleek. Solitary. Feline ferocity packed in a rather unimposing body. Intensely calm eyes. Pungent urine. Round ears. Lowest resting body temperature of in its family. At this point, you have probably forgotten that I was describing the ocelot, since it is so eerily similar to how you might describe me.

Which brings me to health concerns. I have had a relatively low resting body temperature for a while. Often below 97. Which doesn't indicate much, but it conveniently connects the animal talk with this paragraph. Also, and slightly more pressing, were the constant feelings of fatigue and drowsiness, accompanied by mild irritability. So, I went to the doctor and found out that I have low iron and vitamin D levels, which I suppose would explain my symptoms. If I actually were an ocelot, I would be eating more meat. Since I am not, I am settling for supplements. Woot for feeling slightly more healthy now!

Besides that, work has brought its unique challenges. I am continually discovering that I am much better at evaluation and analysis than I am at putting together a program. So, simple things like making a schedule that includes vocational opportunities, cooking skills, communication focuses, and recreation/leisure time just doesn't seem to come together. Maybe it isn't simple...but still, I have trouble conceiving of how to assemble it, and so it gets pushed back a week at a time.

I continue to feel like I am not doing enough for Mohammed, mostly because I am not active enough in communicating with him. Once communication starts to make sense, it will be a lot easier to explain concepts. Until then, we hit walls.

Still, we have our moments. At 18, Mohammed neither understands the how or the why of brushing his teeth. So, I am teaching him how to do it effectively. I am teaching him the Arabic words for brush, toothpaste, clean, teeth, mouth, towel. I am arguing with him over the tastiness of toothpaste, discussing the viability of the minty gel as a nutritional supplement (although in terms that I am sure he doesn't understand). I am getting into rather heated exchanges over the proper technique of spitting into the sink. I am hiding the toothpaste to get Mohammed to be inquisitive. To approach me and say, "Where is the toothpaste?". I wouldn't even mind if he would curse my name and tell me he is bored with my shenanigans. Mostly, he is just resolved to stand until I help him, or give him the answer.

So, I told him that this is important. I explained that he must do these things on his own, and have knowledge about why he needs to do them. It wasn't compelling. To raise the stakes, I asked him what he would do if I were dead. To illustrate, I simply snapped my neck down and became as corpse-like as possible. This, I should have known, sent Mohammed into an obnoxiously cheerful, uncontainable giggle fit. Perhaps the notion of me dying on the spot was humorous. Perhaps he thought it was quite silly to conceive of me not being around to hold him accountable and to teach him. Or, perhaps, he was actually convinced that I had indeed been smitten by the cold, indifferent hand of mortality, prompting a celebratory giddiness. Regardless, it didn't convey what I had hoped. So, we went back to work...

A couple days later, I decided to apply more pressure. As a part of his morning schedule, Mohammed makes his bed. So, in line with developing communication, I decided to leave everything in order so that there was no work to be done. The catch: Mohammed's pillow was conspicuously missing. He will need to initiate communication with me, and ask a question. So, he climbs his ladder, and realizes that this will be simple. Since we had just worked on asking the question "Where is....(object)?", with his braille schedule, I was convinced that M would ace this. Instead, he comes down and tells me, "there is nothing". I know what he is implying, and am also aware that this non-specific communication is usually sufficient enough to make it evident what he wants. So, I simply respond, "What isn't there?". He is baffled. Of course, it is so clear. He had just tapped the pillowless space on his bed, but why doesn't Brent seem to know. I just play dumb, and ask, "So....what do you want?".

All of the sudden, the kid is more nervous and agitated than I have ever seen him. Issuing heart wrenching vocalizations akin to wails from a torture chamber, he simply grabs my hands pulls them up, implying that this is the part where I end it. It hurts to see him so confused and clearly panicked, but I only help him remember the sign for "where". He starts to randomly ask things. He goes with "Where is under?", "Where is Annas (name of a student)?, "Where is the ladder?". I explain that his first question doesn't make much sense, that Annas is in school, and the ladder to his bed is right beside him. He firmly grabs my hands again, so I give him more options. Desk, chair, bed, backpack. He tries asking those things as well, and as I direct him to each one, he gets more desperate and exasperated. I am suffering as well, at this point. It is one of those things I don't want him to just repeat and memorize, I want him to UNDERSTAND. I want him to figure it out.

So, we keep going, and eventually find our way to a pillow. I ask him, "What is this?". He tells me it is Annas. I have to explain, then, that it is Annas's pillow, but it is not a part of Annas himself. Bing. Light goes on. The kid, with not much relief, finally asks me for the pillow. Specifically, he tells me he wants "Mohammed's pillow". With a huge grin, I tell him where he can find it. After retrieving it, I have to show my extreme pleasure with jumping and high-fives. Mohammed, though, is still not amused.

I hope, though, that when he finally figures out the power of asking questions, he will find it not only tremendously useful, but will become incessantly inquisitive. I, undoubtedly, will be happy about it. Until then, I will be happy with Mohammed for his willingness to endure the grueling interactions that stem from my insanely high expectations, as we work towards the moments of epiphanic awakening.

I will patiently wait for those moments, and then spring on them, with feline ferocity. Just like the ocelot. Peace.

Reality

This is a guy who, most of his basketball career, could remember each shot taken in each game of the current season. I wanted to know what shots went down. I wanted to know what my percentage was. I wanted to have reasonable deductions as to why I missed a particular shot at a particular point in the game. It drove people crazy that I could recall that in a particular streak, I might have been shooting 22% from 3. A selectively negative memory can be tremendously motivating, assuming that there is foundation to keep the entirety of the game from becoming, by association, negative.

As it turns out, that is a little harder to pull off as a volunteer. In basketball, even if I had strung together a horrible week of practice, I could then be absolutely torrid once I hit the court for a game. I had a couple occasions when I felt the perfection of a shot merited holding up three fingers while backpedaling up the court (to play shoddy defense...). I didn't have to be good to feel good. I just had to do something good from time to time. I do the same thing with dancing. Pop and lock for two seconds. That's all you need for people to be impressed.

Back to volunteering. I'm working as a deafblind educator. The lack of experience lends itself to failure. And an eagerness to do well, combined with passionate investment, can produce unattainable goals. But, as a basketball player, I could miss 20 shots in a row and still feel good about myself. As a teacher, failing a student over and over again doesn't exactly make me feel wonderful. A student who is frustrated enough to chomp down on my knuckle clearly has things to express, but I would usually use different means to convey my desires. On occasion, though, I do bite people when I am feeling especially needy and unattended to. You get the idea...there is a certain sense of urgency when someone is depending on you to do well.

I tend to focus on all the moments, over the past year and a half, that have been unproductive, ineffective, and inefficient. I see very little good in my own performance, simply because I am incredible gifted at detecting the bad. So, when I talk about Mohammed making huge strides, I see very little of myself in that progress. I only see my role as the obstacle that is preventing him from making bigger steps (which, in all honesty, is fairly accurate). I guess that is narcissism, without the grandiosity.

So, here is my admittance. I have been a part of progress made. I will never achieve what I want to, but success is found in imperfection more often than not. And these are the contrasts of a year's time. Then: Mohammed would repeat every sign I made. He did not respond to questions. He knew absolutely zero Arabic. He was incapable of having a conversation. He didn't know any signs for numbers. If he was confused, he would just sit in silence. He had no idea what "want" and "don't want" really meant. He was practically incapable of making choices. He couldn't tell time, and didn't know what "morning", "noon", or "night" were. He didn't initiate independent activity unless it was part of a memorized activity within a program.

Now: I ask Mohammed what time it is. He feels his tactile watch and tells me it is 12, then says it is time to go to the kitchen and prepare his food book (he just signed a number, gave an unprompted response, told me the time). He then goes by himself, and we review words related to the kitchen and mealtime. I ask him what he ate in the morning, and he responds "humus". He then fingerspells it in Arabic. I tell him that we are having eggplant for lunch, and ask him what that is in Arabic. He tells me that he doesn't know, and that he wants help. I tell him, then he goes through the book and find the braille card with the corresponding word. He puts his hands up for high fives, feeling pretty cocky. I decide to mess with him. I tell him I'm not hungry, and that we're not going to eat. We're going to take a nap instead. Huge grin plastered across his face, he says, "I've had enough sleep. Thanks be to God. I want to eat. Okay?"

I have no idea what I was telling Mohammed here. Maybe I was apologizing about him having to dress up as Baba Noel again. Photo credit: Ahlam Khreysat.

All those things, that he couldn't do a year ago, he puts together in a 10 minute session. I'm no miracle worker, but this kid is a miracle. And when I write it out, I think I am doing quite a bit of good as a volunteer without having to be VERY GOOD at deafblind education. As Mohammed says, thanks be to God. Peace.

Same/Different

I will attempt to elaborate on the complexity. Same. Different. No doubt, you think it is simple. You can tell the difference between socks and a shirt. If you can't, you probably have separate drawers, to ensure that you won't stumble into such a wardrobic mishap. You identify the simple, distinguishing characteristics of dirt and chocolate. Without that distinction, your friends will be much less satisfied when you sneak a pocketful of soil into a movie theater and proceed to hand out your "treats". You know that the blade of a butter knife slides safely upon your skin, and that a Miracle Blade does not so considerately discern the difference between digits and delectable treats. Maybe you weren't previously aware of that either, and are currently giving a thumbs down....sans thumb.

There are all sorts of stark contrasts in the continuum of same/different. But, it gets much more complicated when I give you four balls. A baseball. A football. A basketball. And a golf ball. I ask you which one is different. You say baseball. You're wrong. Unless, of course, you picked under that assumption that the baseball is different simply because I have never played baseball. You say football. Wrong again....unless the criteria was to choose the ball that is not spherical. Basketball. Another demerit. Maybe your rationale is that it is the biggest, and that sets it apart. You choose the golf ball. That's for strokes, all wrong, which puts you at par. I guess you might have chose it since it isn't used for a team sport.

Differences and similarities span a broad spectrum. And to classify things, you have to both know the criteria, as well as be able to accurately identify the qualities. So, my student has long been assumed to understand the same/different concept. Then, I braille a card game for him. I'm excited to teach him his first game. So, I tell him, based on the card that is on the pile, you can either play the same suit or the same number. He reads all his cards, then chooses at random. I implore him to reconsider. He won't budge. I ask him why he played that card. And, as I look at the two of hearts on top of the five of spades, he says, "They're the same suit." I give him each sign, which are clearly different, and tell him to try again. When he finally produces an acceptable card, I have him read each suit, and say, "THESE are the same."

Several hundred hands later, he is still not grasping it. And it dawns on me. To him, the concepts of same and different, no matter how many times presented, have been developed as invisible classifications. Classifications to be memorized in every context. And card playing is a new context, providing unknown divisions that he thinks he is simply supposed to memorize every combination. Which, I think he is trying to do. It isn't that he thinks he plays a heart, when a heart is on the table. He, quite possibly, tries to memorize that the last time a two of hearts was down, he was supposed to play a four of hearts. That is insane memorization, rather than thinking and classification.

It would be like me asking you, "What is the difference between a desk and a painting?"  You would, undoubtedly, think I am telling a lame joke. But, what if I was asking you to actually pinpoint some existential quality. One thing. How would you answer that? Can you imagine having developed, over 18 years of your life, without actually being able cognitively process the way that you do? I certainly can't. But, I am trying. Mohammed and I are trying, to develop these skills. So simple, but so necessary. So essential. And I take each task, one day at a time. Hoping that they will build. That I'll make progress.

Recently, I was asked by a pastor about if it is worth it for MCC to invest an entire service worker position into a one-on-one student-teacher relationship. When I look that the quality of life that Mohammed is capable of achieving, I see that he needs this kind of interaction to get there. And, I cannot help but think of Matthew 25:40, when I think of my work. In this community, and culture, Mohammed is often mistakenly identified as being one of the "least". In my eyes, his value is quite surely found in the kingdom of heaven. So, in short, yes. It is worth it.

Here is a link to an article that I recently wrote for an MCC publication (if you aren't tired of reading already):  A Common Place- Touching the World  (You can download a PDF version at the bottom, which has some pictures showing me communicating with Mohammed.)

Peace.

Baseline

I miss running 10-in-60's on the basketball court. Visiting the opposite baseline every 5 or so seconds, then exhaustively engaging in playful banter, such as, "See you later," before darting to the other end. It is grueling, and definitely not fun, but I miss it.

The baseline is where you start. The baseline is where you finish. But no one makes a delicate approach when the sprints are finishing. You always overshoot. If it is a dead stop on the baseline, it doesn't feel like you actually made it. The baseline is where you finish, but it isn't that simple. A line is soft. One-dimensional. Very unimposing. The baseline holds stark contrast to every other line on the court. It is a wall. When you finish that last length, you lower your head and you assault the formless barrier which is so imposing. If you walk it in, you'll know that you didn't really breach the baseline. You just folded under it.

Now, if any of the KU basketball players were on my reading list, I feel like I would have relevant things to tell them about their baselines. Despite my repeated attempts, though, it seems they are not interested in letting a former NAIA D-II one-year varsity off-the-bench senior become their mentor (talking to you, Josh Selby). So, I'll adjust my pep-talk accordingly. (coincidentally, if you have Selby's email on hand, maybe you could forward it...)

I had little business becoming a deafblind educator. Indeed, professional deafblind educators probably scoff (nay, guffaw) at the proximity of my name to the classification. I am increasingly aligned with their sentiments. Still, when one enters the field of deafblind education, there are (for the most confounding of reasons) inevitably some parallels drawn between "one who administers education" and "an educator", as if the two are in any way similar.

So, as I have fumbled about, meandering along in my prolonged educatorial (smooth word) debut, I have tried to find my baseline. I find the experience akin to what I imagine it would be like to, overnight, be made aware that for no reason other than availability I had been given the nod to start for a revived Seattle Supersonics franchise. Then, while averaging a modest 1.1 ppg, 0.3 apg, 0.4 rpg in 38.6 mpg, and a tremendous assist-to-turnover ratio of 1.0: 38.5, retaining status as team captain and having carte blanche through an entire season. Then, to my surprise, winning MVP as the architect and floor general of the league's first, and very cavalier, 0-82 debacle of a campaign.

You look at the numbers. You look at the situation. And none of it adds up. That is how I feel in my job. Lack of experience and skill, poor performance, and excessive amounts of recognition and praise.

So, in the midst of this, I have looked for the baseline that I hold myself accountable to. And while I get better at my job, I begin to recognize an ever expansive set of needs. A deafblind young man, needing guidance in communication, independence, social relationships. Everyday I see new things to work on, without conquering the old obstacles. I am enveloped by it, while it simultaneously expands beyond me. It isn't static, nor do I know where to begin, or what the end would even look like. This baseline doesn't play by basketball's rules. So, at the epicenter of the this perceivably inflating responsibility, I am foundering and lacking direction.

My disadvantage, though, is that I didn't start this job with any point of reference. I was just thrown in. And now, a year and 3 months later, I am finally realizing that having goals is not the same as having direction. I can have the goal of reaching that baseline, and be sprinting with great fervor, but am probably running parallel to it. Good way to get burnt out. I want to stop, turn, and actually cross it. To not only know the goal, but to know the direction.

I am praying for direction, so that progress becomes meaningful rather than redundant. So, in Matthew 18:11, when it says, "For the Son of Man has come to save that which was lost." I feel like I could use some of that. Plus (no blasphemy intended), it provides a good basketball visual, with an mop-top, sweat-drenched, tube sock wearing, headband sporting Jesus diving across the baseline to save the ball which I so careless bounced off my foot. I can relate to that. I want my life to reflect gratitude and faithfulness for that sacrifice. Peace.