Saturday, April 2, 2011

The Accidental Alien

IN SPACE - UNSPECIFIED:  In this handout illus...
Imagine for a second that you're a perfectly healthy, able-bodied person, minding your own business, walking down a quiet suburban street just after nightfall. Suddenly, you are caught in the tremendous vacuum of a strange whirl of blue light, and you feel yourself abruptly whisked right off the face of the planet. Milliseconds later, you find that you've been deposited on an alien world, transported by some kind of rip in the time space continuum. Hey, it's unlikely, but so was Frank Sinatra marrying Mia Farrow. Shit happens…

After getting up and dusting yourself off, you start to look around. Everything seems fairly normal; the sky is blue, the grass is green, and the sunshine feels warm on your face. You walk around for a bit, and although you don't see any of this new place's inhabitants, you do start to notice certain oddities. Approaching a fairly ordinary looking building, you can't figure out how to use the door. There seem to be way too many knobs and buttons on it, and no matter which you twist or push, the door won't open. You see vehicles on the street, which you recognize as the equivalent of automobiles, but looking in their windows, none of the controls are recognizable. As you make your way towards what appears to be the center of town, you come across a variety of objects that seem familiar but at the same time odd, all of them somehow strangely complex.

You turn a corner onto the main drag, and are shocked to see the residents of this peculiar new world. They have the familiar head and torso of a human being, but instead of two arms, they have four, and on the end of each arm is a hand with 10 fingers. They also have four legs, two pointing forward, and two pointing back, but are able to orchestrate all of these extra limbs with perfect fluidity and grace. Oddly, they notice you, but don't really make too big a deal out of your presence. Certainly, they make no move to harm you, and in fact seen kind of indifferent to you.

After composing yourself, you head for what looks to be a restaurant, and walk through the propped open front door. The scene inside is stunning, the place is filled with these eight limbed, 40 fingered creatures, drinking, eating, and having a good time, while using a variety of exotic tools and utensils that require the use of all of those extra arms and hands and fingers. You take a seat, but it's hard for you to get comfortable, because the chairs and tables are designed to accommodate two extra legs and feet, and the menu is almost impossible for you to open, it's many folds and pages meant to be manipulated by folks with a whole bunch of extra extremities.
Overcome with anxiety, you bolt to the bathroom to splash your face with some cold water. Luckily, the door simply pushes open, but once in the bathroom you find an almost impossible to understand array of gadgets and fixtures, all of which require the use of more extremities than you possess. As you explore the rest of this world, the situation repeats itself over and over again. Everything appears frustratingly familiar, but actually using any of this planet's devices is damn near impossible, all having been designed for beings with abilities far beyond your own.

The above describes the feelings and situations I often experience as a disabled person here on earth. I find myself stuck in a world in which I can no longer easily function. Amidst an abundance of gadgets, conveniences, and everyday items that require ten fingers, two hands, two arms, two legs, and two feet, I find myself at times helpless.

A knife and fork are terrific tools for carving up a meal, unless you're reduced to only using one hand, in which case a fork without its trusted companion, the knife, becomes an instrument of frustration and dismay. Zippers, buttons, shoelaces, and socks might as well be Rubiks cubes, there's no way I'm ever going to figure out how to use them. Showering with one side of your body completely disabled requires creativity on the level of Picasso and the stamina of a triathlete. I spend my days adjusting to life in a world designed by and for creatures with abilities that are now far beyond my own. And since the upshot of having a progressively disabling disease is that it progresses, with new disabilities layering upon older deficits, the act of adjustment is a perpetual process. Settle into one routine, and soon enough that routine is no longer routine, and it's time once again to adjust.

We live in a hyper materialistic society, consumer goods being dangled in front of us by a whirlwind of marketing and advertising. When I was able-bodied, I was as much a sucker for the siren call of the newest, shiniest, and brightest as the next guy. I'd satisfy my cravings for one car, only to have my consumerist fires stoked a few months later by a fancier or faster new model. These days, I could just as easily will myself to fly as to drive a car.

On the corner of my street is an Apple Store, with lines of anxious consumers often snaking down my block, all eager to get their fully functional hands on the slickest and most ergonomically designed doodads thought up by Steve Jobs and crew. Ergonomically designed? Ha! As far as I'm concerned, most of those devices might as well be made out of barbed wire and broken glass, as my one-handed approach just isn't going to cut it with the latest super iThing.

I turn on the TV and have to laugh at the endless stream of commercials for products that are impossible for me to use. Cars and shoes and exercise devices and electronic thingamajibs of all kinds, some of which I might have formerly found irresistible, but which now hold all the appeal of a burning stick. What the hell am I going to do with an Ab-Cruncher or Shake Weight? I understand that these commercials and advertisements were not meant for the likes of me, but living with disabilities has ripped the veil of consumerism from my eyes, and allowed me to see just how crass and blatantly manipulative are all of these efforts to get folks to mindlessly buy, buy, buy. I mean, does anybody really need an Ab-Cruncher? For goodness sake, if you absolutely must have those sixpack abs, just do some freaking situps and give your Ab-Cruncher money to the charity of your choice, where it might do some actual good.

I am what is known as a "collector". I'll fixate on some items of interest, usually something antique, and start obsessively collecting them. I have collections of old postcards, vintage fedoras, old New York City travel guides, and World's Fair paraphernalia, among others. When I was healthy, my biggest collecting obsession, by far, was antique wristwatches. I loved them, was fascinated by their intricate mechanical workings, learned the history of their various manufacturers, deeply appreciated the craftsmanship and art that went into making them, and spent huge gobs of money on them. I wound up with a collection of over 50 of the suckers, most from the 20s and 30s. Many have inscriptions carved into their backs, often dedications from loved ones, or sometimes just a person’s name or initials. These inscriptions would fire my imagination, and I'd picture the circumstances under which the watch was bought and treasured by some long-ago person.

I delighted in in the fact that my collection was actually functional, and I loved wearing a different watch each day. They became my trademark, friends and family often asking about my "watch of the day", and if they showed genuine interest, I'd happily take the watch off, pry open the back, and display the carefully constructed mechanical "movement", gleaming artfully polished metals and gears working in intricate orchestration, proof that in some far-off time it not only mattered what something looked like on the outside, but on the inside as well.

Now, due to my disabilities, what were once my most prized possessions sit up in a closet, hardly looked at for several years. In my current state, I couldn't wind a watch, set the time, or even fasten the leather straps to my wrist. The collector in me still likes knowing that I have them, and from a financial point of view, they've appreciated in value, but in many ways my watches have come to represent the alien I have become on my own planet. Yes, the proof of my otherworldliness quite literally surrounds me, in almost every commonplace item I encounter. But there's something about those watches that sums up my predicament, objects once so treasured now reduced to symbols of the toll my disease has exacted.

Of course, my illness has led to fits of remorse, some of them quite intense, but it's also led me to fully grasp that the worth of a person lies not in the objects they possess, their outward grace and elegance, or their physical beauty or prowess. The true worth of a human being lies far, far deeper, in their essence, their spirit, their soul. Though this disease is a curse, it has led me to befriend some of the finest people I've ever known, people who likewise have been stripped of all the adornments and material goods too often used as armor and camouflage in the land of the healthy, people who have nothing to offer but the kindness of their hearts and the keenness of their minds. We may be unwilling aliens here on planet Earth, but in our shared state of otherness I've learned the values that make us truly human.


  1. "the act of adjustment is a perpetual process"

    ...and if it were adjustment to minor inconveniences, that might be okay. But those adjustments affect who we are at the most basic levels. Indeed, they can lead to an exploration of what it means to be a human being. Some of the results of that exploration are edifying. Some are perplexing; others, downright unwelcomed. Thanks again, Marc, for an illuminating post.


  2. I was transported (the alien world,) fascinated (the collections); I identified (stupid materialism, remorse AND the marvel of new friends,) and am, once again, your humble reader.

  3. Well Marc, the onset of your blog made me thinks that Sativex has found its way into the US market and you were trying it on for size.(requires only one functional upper appendage) But, then the philosophical WK showed up to give us 'food for thought'. Once again we are nudged to recognize the true values of being part of the human matrix. Well done WK!
    Frank Sinatra married Mia Farrow ? Wow, maybe I slipped and bumped my head in the time space continuum. Explains alot actually.

  4. As a quadriplegic, I can certainly relate to feeling like an alien in a world specifically designed for able-bodied people.

    But, you are right, I have also discovered and been touched by some beautiful (and powerful) basic human values, often from complete strangers, bringing so much joy into my life and making it more worthwhile.

    Thank you.

  5. Kazmo, i recently have become quite disable and shocked to realize how ill adapted our world really is for such abnormalities as mine. I was to take the train to chicago and was basically treated like a third class citizen when the assistant looked at me through wonderous eyes while conveying her inability to get me on the train. "We aint got now way of getting you up in here" she most confidently blurted out without regards to the the others standing next to me at the train station as if i was the alien to which you refer. Meanwhile with my disabled ticket in hand and my wife at my side with bags packed were forced to turn around and head back to the car where we would later drive five solid hours to my evaluation at Northwestern. after a few days in chicago and the inability to maneuver my wheelchair through the plethra of narrow or oscilating doors it become overwhelmingly apparent to me that I would not be enjoying or partaking in teh excitement and enjoyment of downtown chicago. this world is not made for handicapp people and not a day goes by where i am not reminded. After waiting 37 minutes on hold for a ticket refund i was told there would be a 10% processing fee. Can you imagine the audacity? its basically as ou have depicted in your blog a complete and utter disregard for those with challenges.

  6. I've often felt like I look on the outside like everyone else but that the way my body works or doesn't work was hard to explain to people because I appear like them. I often am teased by colleagues that I'm lucky to not have to work everyday, that I am a lady of leisure. I tell them they can have my MS and I would gladly work for them the next day. No one wants to trade. What I wouldn't give to just trade with a healthy person for just an hour even. Just to see what it feels like to feel every part of my body and to not have pain.
    I will enjoy what I can do today because tomorrow may rob me of something else.
    As always Marc, you are the voice I cannot find and express the words in my mind.
    Take Care,

  7. I'm going to offer a positive spin on this disability "shit". I work in a school district and now can confidently tell teachers that the children with learning disabilities aren't faking it. They watch other abled-readers and think that it looks easy--why can't I do that?

    I often watch people walk and think that's easy--why can't I do that?

    It makes a powerful point!

  8. Funny, how we take things for granted until we lose the ability to do anything...And, sympathy seems to be truly generated from the underlying belief "Oh, that can't happen to me.."

    MS sucks, life sucks and then one sees a beautiful sunrise and the day seems to have so much to offer.

  9. ah, Marc - another wonderful post!

    My grandpa was one-handed(sided)and carried in a leather sheath a cool, curved knife with a double tined end for eating. He had the edge honed to razor sharpness, and he was able to cut his food and eat it with ease. Didn't help with buttons or shoes, though...grandma had to help with these.

    I so TOTALLY identify with the consumerist angle! I have a penchant for shoes, and I have all these great Chie Mihara heels I'm gonna sell on e-bay, 'cause I certainly can't rock them any more! I'm keeping the clothes I can most easily get into and out of. Getting rid of the kitchen stuff I can no longer use (hand cranked pasta machine, etc.) The guitar collection, well...that may take a little more time. I'm trying to pare down, but these babies...

    Any more, my $$ goes to my health insurance premiums, my max out-of-pocket. Not clothes, not gadgets, not toys....fucking MS!!


  10. Marc,
    Your last paragraph says it all. This unwilling alien is certainly happy to have made your acquaintance. Your words have so often touched my very soul and I am a better person for having known you. I am indeed fortunate to considerate you a friend. Beautifully written!


  11. Marc,

    I value you and your contribution in my life.

  12. An entertainingly imaginative allegory of The Disabled Life, Marc. No, it's not really entertaining to be this way, but I like thinking of the normal folks now as forty-fingered, four legged freaks of nature. It comforts me more with each Martini.

  13. I've been one handed for several years now (legs long gone). I find opening a bag of chips to be an agonizing task along with bottles and jars of all shapes and sizes. In private I find my teeth to be quite useful at times ;) As long as my 9 yr. old daughter doesn't see me and yell "Daaaaaad Stop!"

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  15. I appreciate your post, thanks for sharing the post, i want to hear more about this in future
    Disability products

  16. I am a stranger in a strange land.


  17. Loved this post. I feel like an alien much of the time lately. I'm so very sad.

  18. Have I told you lately that I love... your writing! You continue to out-do yourself Marc.

    It's truly amazing how this life of limits puts it all in perspective. Because I've had MS since I was 20, (23 years ago!) my adult life has always been a variation on a coping mechanism. While my symptoms haven't forced me to adjust on the fly as quickly as yours have- they are accumulating and do require a regular re-assess. And with that re-assess there is always an opportunity to look at my big picture.

    Like you, I recognize that this life with MS has taken me in directions I never would have otherwise gone. I truly believe it has brought out the best of me; more than I could have been without this unwilling membership to club-MS.

    Writing a blog, founding an educational non-profit; working every day to make a difference for those of us who are "living with it"- and yes, meeting all of the wonderful people (like you) that I never would have crossed paths with had my lot in life been different. Being aware of what is good in life is a skill that many don't have. In that regard we are very lucky.

    Thanks for your continued reminder of what there is to appreciate in my MS life.

    Looking forward to speaking with you on MSLOL-Radio's 7th show. "It's in the blog!" Tell your friends and fans to tune in!

  19. Thank you, I linked to my site,
    My wife is an alien.

  20. Always the time I decided to go to your blog I stay deeply sensitized with your words. You talk the language of the soul and in my life story I recognized and remenber the words that I talk with me in my adolescense. I am 55 years old and the MS diagnose since 2007 a progressive form and I am totally knock out with all this adapation process. I have discover your blog in CCSVI discovery. By the way CCSVI was not positive with me,it is only more one frustation to add the other losses that MS made to my health. It is interesting to see that you remeber adolescence when you analyze the adaptation to deficiency. The alien feelings are so strange as the egodistonic young adult that some of us were. It was really food for my soul, you have a astonishing sense of insight of human condition. Thanks

  21. I'm sorry I haven't been able to respond individually to each of these comments, but I will in the next few days. The last week has been quite busy for me, and I'm trying my best to keep up with e-mails and comments. Please know that I do deeply appreciate everyone who comments on these blog posts, and I am humbled and proud of all of your incredibly generous words. They are appreciated more than you can know.


  22. In the silence of those infinite spaces, remember you are not alone : we still can hear you. Have a thought also for our ALS brother Stephen Hawking, thousands miles further on the path of disability still testifying mind is stronger than body, and that we can live - may be long - with our diminished alternate physical states 8-)

  23. The world is not designed to accomodate us aliens. Trying to wheel between crowded department store racks. Attempting to peer into that display case just above your sightline. And has any healty architect actually rode in a wheelchair to see how accessible those hadicapped washrooms realy are? I thought not.

  24. Marc, I appreciate your photo art, your writing, your attitude. Our experiences as people with a disability are an important part of the human condition.

    Thanks for sharing

  25. I stumbled across this blog and am so grateful for it.
    Newly diagnosed and still struggling with fear/anger/regret..all kinds of emotions.
    That last paragraph was amazing, it made me gasp at your vision of the is cruel disease.

  26. My Mother passed of ALS about 20 yrs ago, it was a terrible, terrible time in my life but I truly believe that it made me stronger and more prepared (if you can ever be) for my MS diagnosis.