Beauty in the Struggle
At age 4, Itzhak Perlman was struck by polio and his legs were severely paralyzed. Now well into his 60s, this amazing musician still uses crutches to walk on and off stage.
I entered Benaroya Hall on Thursday night without this knowledge and I was struck by the amount of effort that it apparently took Mr. Perlaman to walk on to the stage to perform. For those familiar with the symphony culture, you are aware that for some strange reason soloists and conductors walk off and back onto the stage multiple times before intermission and at the end of the performance. After seeing Itzhak Perlman slowly amble front and center for his initial performance, I assumed those traditions would be excused due to his limited mobility. I was wrong.
Not only did Mr. Perlman enter and exit the stage several times, he also awkwardly walked up a small set of stairs in order to conduct the symphony. As he approached the first of three steps and swung his leg out to lift it up on the step, there was an audible gasp from the audience. The gasp was in response to the seemingly unstable way that Mr. Perlman climbed the stairs, with most in attendance unsure that he’d manage to make even the first step up.
But, as I should know, those of us who have lived with disabilities most of our lives can often easily complete tasks that others think difficult (if not impossible) for us. There was a sense of relief as Mr. Perlman carefully climbed the stairs, plunked himself down on the chair and set his crutches down at each side.
As I left the Seattle Symphony performance that evening, I struggled to place words to what I had just experienced. Ask my friend, Elisabeth, that joined me that night. I tried to convey to her what I was feeling, but I’m not sure any of my words made sense!
It wasn’t until I was driving home that the words came to me. What I had witnessed was amazing beauty in the struggle. Had an athletic, perfectly ambulatory performer jogged out onto stage that night and played with the same perfection that Perlman had, I would have been impressed. But, I left that night with a level of gratitude and amazement that was only present due to the amount of effort that it seemed to take Mr. Perlman to simply get on and off stage.
(Check out an earlier performance by Itzhak Perlman below. In this video you can see the struggle in him walking.)
These past few days I’ve been thinking about what it is that makes beauty so stunning when it’s in the context of struggle. It’s the contrast, I suppose. The music was elevated even further by the fact that Mr. Perlman spends so much energy just getting from place to place. He could easily say, “I’m going to retire and rest.” Instead, he presses forward to be a great ambassador for both music and disability.
Through this experience I have begun to better appreciate what people mean when they tell me they see beauty in how I use my feet to complete daily tasks. It simply seems like survival to me, but there is likely much beauty within the daily struggle. This is so true for all of us – disabled or not. Now, my – and our – goal is to see that beauty as we are present in and push through the struggle.
A Taste of Disability
Morgan Spurlock, of Super Size Me fame, continues to create work that is not only entertaining but also informative. As you may recall, Mr. Spurlock attempted to eat McDonald’s food 30 days straight in the aforementioned movie. Well, he has continued to take a similar approach with his TV series, 30 Days.
Though the topics vary widely, from living on minimum wage to asking an Arizona Minute-Man to live with an illegal immigrant family, the approach remains the same – put someone in a unique and uncomfortable situation for 30 days so they can experience what had previously been foreign to them.
Now Spurlock has masterfully accomplished this task when it comes to giving us a taste of disability. In the segment below Ray Crockett, a former NFL player, is asked to live in a wheelchair for 30 days. What unfolds over the course of the show is the most insightful and honest perspective on living with a disability that I’ve encountered.
Ever wondered what it’s like to be me? I encourage you to watch the full episode just below.
(Disclaimer: the segment is 43 minutes long and deals with intense topics. But, it is well worth the time if you are curious about the impact of disability on an individual.)
Although Crockett’s stint in a wheelchair was different from my experience of a life without arms, several points resounded loudly:
1. The burden on family members that have been pressed into the role of care-taking is extraordinary. Ray’s wife quickly experiences this and, in addition to the time and energy required of her, there is a heavy toll on their relationship as she shifts from the role of wife to caretaker. As I’ve grown older I have come to appreciate the extra energy that both my parents and my older brother exuded in helping me throughout my growing-up years.
2. As the doctor at the beginning of the episode suggests, I have experienced the dynamic of how store clerks will refuse to interact with you when you are with an able-bodied person. Even as I sign a receipt, a clerk will often make eye contact with the other person and hand them the receipt — virtually ignoring me.
3. Living with a disability requires a different train of thought as to how you function at home. Ray was fortunate in that he had the resources to adapt a car with hand steering, to widen doorways and to build ramps. Most people with disabilities do not have those same financial resources.
Although I feel I’ve done very well thus far — even to the point of living alone — it has been through much emotional and financial support from individuals and government resources. This is where the “pull yourself up by your own bootstraps” logic that dominates our society completely falls apart, in my opinion.
4. The desire to participate in activities that your body will not allow you to do is extremely frustrating. Ray recognizes this as he watches his sons play basketball and is impacted heavily by not being able to join them.
I’ve loved sports my entire life and have always wanted to participate in whatever way possible. My mom tells me that at a young age I came walking into the house crying, upset that I couldn’t join the other neighborhood boys in a game of basketball. This is not a just matter of not being good at a sport — it’s the physical inability to do something you love.
5. Disability complicates relationships and issues of sexuality, even if only in the mind of the person with a disability. As seen in this 30 Days episode, the mates of disabled people often say that disability is not a big issue or even something that they consider much, but it still weighs on the day-to-day interactions of intimate relationships. From the mate’s care-taking role to social pressures, the relationship carries an extra burden.
6. Life with a disability simply requires extra effort to complete daily tasks.
7. Ray’s mom suggests that people with disabilities don’t want you to ask them about what happened. Completely untrue! Ignoring the obvious physical disability is insulting and exhibits a lack of curiosity on the part of others.
Too Busy
“Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth.”
Psalm 46:10
Too busy to write, to study and to relax.
So much to be done — I’m just far too busy.
Too busy to go to church, to exercise or to do the dishes.
A mess: my kitchen and my mind share this in common.
Too busy to eat well and to take care of myself physically.
This pinched nerve in my neck serves as a reminder.
Too busy to plan my trip of a lifetime.
Italy beckons in the near future, but I’m too busy to plan for rest.
Too busy to pray or even to weep for Haiti.
If ever there was a time, it is now.
Too busy to feel; to feel for myself or for others.
A mind distracted has no emotion.
Why so busy, my soul?
What must you prove?
A man without arms juggling is surely entertaining, if not impressive.
Especially when he juggles so many balls at one time.
Making up for the wounded body God placed me in is tiring.
Maybe I was meant to live at a slower pace?
Maybe we all were.
But, that slower life is where the pain and mystery sneaks in.
It’s where emotions come in waves;
where I’m forced to wrestle with God.
In just being, I am forced to look at myself in the mirror.
Naked, not wrapped in my activities or achievements.
Forced to see myself as a person that cannot earn approval.
It’s a place I’d rather avoid.
And, well, I’m just too busy to linger there.
Too busy to sabbath.
Too busy to do what I desperately need.
Far too busy to be still.
Heard that Before
This past week I’ve been extraordinarily aware of the words and actions of people around me. Tonight, after calling in a pizza order, I pulled up to Domino’s as another gentleman was carrying his pizza out the door. He hopped in his car, where his wife was waiting, as I walked into the shop with my wallet on my shoulder. A few minutes later I turned around to see his SUV still parked, with both he and his wife looking at me through the storefront windows.
I thought it was odd, but it became even weirder when he started the car as I exited the building — both of them watching me intently the entire time. I got in my car while he backed out of the parking stall a couple spaces to my left. But, instead of pulling behind me and leaving the parking lot, he simply waited for me to back up and exit before he shifted from reverse into gear to exit out the opposite driveway. I guess I was completely fascinating to them — in the same way I assume I’d stare at an alien as it walked across the crosswalk in front of me. The staring from both he and his wife was not well disguised… not in the least.
It’s times like this where I wish I had a middle finger. I’d have used it on this guy!
And, oh, the guy at the Domino’s counter uttered a phrase I’ve heard many times throughout my life (see the first bullet point below). It was a f#$%@ing fantastic trip when it comes to dealing with the reality of my experiences without arms.
That inspired me to consider several of the phrases that I’ve heard consistently throughout my life:
- “Oh, I didn’t expect for you to be able to sign that.” Just what the guy said tonight. It’s understandable, considering you’re asking the guy without arms across the counter from you to sign a receipt! It usually leads to a decent exchange between me and the individual that states it, though. I offer that I’ve had lots of practice and the exchange usually ends with a kind compliment from the other person.
- “Which pocket is it in?” When I’m alone I have to ask a cashier to help me get my wallet out of my pocket. “Jacket pocket,” I answer. Most of the time I’m thinking to myself, “Do you think I’d ask you to pull it out of my pants pocket?!” They often seem relieved by my answer!
- “Are you cold?” This is the single most frequent question I get asked. The assumption is that I am hiding my arms inside my shirt because I’m cold. I would understand it — if I were six years old! From the moment I hear the question I can anticipate the horrified look on the other person’s face when I answer, “No, I was just born without arms.” There’s really no way to salvage the conversation at that point!
- “How are you going to do that?” Hey, I appreciate the honesty! Sometimes I’m wondering the same thing. More often than not, though, it is in response to something like how I’m going to pick up two bags of groceries at the same time. Again, I usually smile kindly and offer that I’ve been at this no-arms thing for a while and I have lots of experience. That’s often met with a blank stare as I complete the task in question. It’s usually only after I walk away that they snap out of their “WTF?” mode.
With each of these encounters I don’t necessarily hold it against the people who say these things. It’s not everyday that you encounter a person without arms. And, I’m not that sensitive that I’m offended by every double-take or odd reaction.
But, I must admit, sometimes it does get old. I’d just love to go a day or a week without hearing these phrases.
A Mysterious Manger
In reflecting back on 2009, I am left with one word that has played a more significant role in my life than any other this year: mystery. Although the word applies to many facets of my life recently, it has been particularly true of my interpretation of God and our relationship.
Although I’ve spent the last several years asking questions about my birth and the “why”s that go with that, this is the first year that I can honestly say that I’ve had that conversation directly with God. And, it is the first time that I’ve presented some of that questioning in such an open, public manner. I’m glad I’ve engaged in these areas; yet, I can tell you that none of my questions have been answered — or at least answered in a manner that I am currently satisfied with.
That’s the thing about God. His ways are extremely mysterious to me.
But, that’s not all bad. The thing I’ve come to realize about God is that I am engaged in a relationship with him – times of ups and downs, times that require work, times of contentment and times of extreme frustration. As is true with a solid relationship, though, I’m realizing it can bear these fluctuations in emotions.
I don’t need God to answer all my questions, just to be confident that he hears them and to know that there are times that he weeps alongside me.
Christmas brings us a fascinatingly mysterious story. Yet, it’s a story that I feel we’ve tried our best to take the mystery out of. Images from our nativity sets show a clean manger lined with fresh straw, Mary and Joseph with smiles on their faces and Jesus sleeping quietly.
Silent Night? Holy Night? I’m wondering if, in that moment, Mary and Joseph would have named the night as such.
Imagine the tumultuous travel that would be inherent for a woman nearing birth while riding on a donkey. The frustration of being denied access to an inn – on a night Mary would give birth, nonetheless. And, I can only imagine that Mary’s mouth was not only shouting blessings to heaven as she lay there birthing a child in a damp, stinky manger that had been used to house animals.
There are so many pieces to this story that do not make sense – so much so that you can only think that the facts are true, because no one would make up a story this crazy to introduce the Son of God!
Think about these few basic pieces of the narrative that make up the Christmas story:
- A virgin giving birth
- No room at the Inn in Joseph’s hometown of Bethlehem, leaving the birth of Jesus to be held in an empty stable
- Angels appearing to sheperds, telling them, “Do not be afraid”
- A new star in the sky lighting the way for the Wise Men to find Jesus
- Herod demanding that all males be killed at the time of Jesus’ birth
This is crazy, mysterious stuff! There’s no way around it. As much as you sing soft, quiet hymns, dim the lights and light candles in the room for a Christmas Eve service, I simply can’t get away from the absolute insanity of this story.
As a friend recently told me, though, God’s insanity is far better than man’s knowledge.
No, God does not make sense to me – but I’m not sure he was meant to. For centuries he has made himself known to humans in a way that few comprehend. So, why should I expect that to change for me?
God seems crazy. His ways appear insane. And, his methods are often mysterious.
That’s fine with me, though. To be honest, I’m not sure I’d like some of the answers that would be offered to in response to my questions anyway!
Exciting and Terrifying, all at the same time
“Do one thing every day that scares you.” That quote, from Eleanor Roosevelt, is a perfect introduction to this post. I want to tell you about something I’m embarking upon that is both very exciting and terrifying!
For those of you that are Facebook friends, you saw a status update from me this past week that stated –
“Sabbatical form submitted at work, travel dates set (April 14-May 5), consultation with Paul @ Rick Steves. Italy and France, here I come!”
The part that I left out in that status update was this –
“And, he is scared sh*tless about how he is going to pull off this trip that he’s been looking forward to for a couple of years.”
You see, if you came to my office tomorrow, handed me a bag full of belongings and told me that I’d be traveling around the United States for three weeks straight, I’d be sure my dressing device was included and I’d be on my merry way. I like to travel and I would find enjoyment in the adventure that was about to take place. But, that is largely due to the fact that I can find a handicap-accessible bathroom where I can use the aforementioned dressing device at every hotel and public facility in this country.
Traveling to Italy and France is an entirely different story, though. And that’s where the panic enters. I won’t get into the details here, but suffice it to say that a flight anywhere north of five hours long is a challenge for me because I have yet to figure out how to use an airplane restroom on my own. That is just the first step, though, as Italy and France are not exceptionally accommodating for travelers with disabilities I’m told.
My plan up until this point has been to travel with a friend of mine. However, a recent job change and the fact that he is now a client of mine (again) puts this plan at risk. Although we have yet to conclude that this won’t work, it certainly presents new challenges. So, that could put me back at square one.
You might suggest a three-week trip around these great United States, instead. I’ve thought about it and — like so many other things I’ve dealt with in my life — I refuse to settle for the easier path. Ever since traveling to Egypt and Ethiopia with a client of mine in 2005, I’ve had my passion for travel ignited. Mostly, I’ve clamored for a trip to Europe.
As I’ve mentioned here before, though, my passion for travel and the ease in which I accomplish that task do not match. This causes quite a rub!
But, like most obstacles in my life, I refuse to give in and I’ll figure out a way to accomplish this trip of a lifetime. Because, although figuring all this out is a terrifying prospect, the excitement of achieving this dream of a long trip to Italy and France is even stronger. It’s not so much than I’m that independent; I’m just that stubborn!
(Oh, by the way, I am now accepting applications to be my travel buddy to Europe this spring!)
Reminder from Sanjaya
Yes, that’s right — I was reminded of something very important by our favorite local American Idol contestant, Sanjaya. Seems like miracles are everywhere this time of year!
One way or another, last week I found myself attending Black Nativity at Intiman for the second time in a matter of days. It truly is a spectacular show and I appreciated the opportunity to see it again. This time, though, I took away a very different message than I did days earlier — something that I explored in this earlier post.
Somehow I missed his introduction during the Saturday evening performance, but on Wednesday night I picked it up clearly. The young man about to sing the old hymn His Eye is on the Sparrow was the former American Idol. Although I have never watched a season of American Idol, I knew enough to recognize Sanjaya’s name. I knew him as the skinny kid from the Puget Sound that inexplicably kept sticking around week after week following the audience voting. This was confirmed for me as my friend that I attended the performance with giggled through the beginning of the song!
Sanjaya, however, reminded me of one of the most important lessons of my life — that God is near and that he has been with me every step of the way. I spend a fair amount of time here wrestling with issues around my creation and my disability, but just as pertinent are the ways in which I see God’s active hand as I look back on my 32 years of life thus far. So pertinent are these lyrics from the song —
When songs give place to sighing, when hope within me dies,
I draw the closer to Him, from care He sets me free;
His eye is on the sparrow, and I know He watches me.
In hearing Sanjaya sing these words, key points of my life (and the questions that came with them) flashed through my mind:
- Upon my birth, my parents were told that I would never walk, never feed myself and would always be reliant on help from others to do daily tasks. But, as history has proven, that was not to be.
- Nearing age 16, I wanted to drive like every other red-blooded, American young man. After much research, we found a man in California that adapted cars with a steering wheel on the floorboard of the car. In addition, the local school district and the state government paid for the expensive adaptions to the car. Having a car has offered me independence like none other in the years since.
- Moving to college was full of unknowns: leaving home, needing help from a roommate I’d never met and moving to a big city. I’m still not sure how it all happened, but I graduated from SPU two years later and was on my way to a marketing career.
- Traveling for work posed a significant challenge. Although I had developed a basic system for how to function away from home, the device I used to dress myself was based on weak suction cups that required a flat wall surface to work properly. Again, the state Department of Vocational Rehabilitation stepped in and connected me with a man that would help develop the special device I use today.
These are just a few of the ways that I’ve seen God appear in situations that I was confounded by. And, he still often meets me in those moments today — usually at the moment that I give up trying to figure it all out!
It was nice to pause and to be reminded of this truth last week. It took Sanjaya to break through with that reminder and I’m so glad I heard it the second time around!
Inspiration can come from anywhere!
In a week where we learned from Tiger Woods what the definition of a mulligan is, I’m taking one tonight! I’ll be back in the next night or two with my next post.
In the meantime, I leave you with a photo of the person who inspired my upcoming post –
Yes, that is Sanjaya from American Idol!
Subversive Baby
This weekend I’ve enjoyed my time with my dad and brother, in town to go to the Seahawks’ game today. Although that was the main reason for the two of them making their way to Seattle, we also attended Black Nativity at Intiman Theater. My dad is a big fan of gospel music and it was a fun holiday festivity.
Although there were many facets of the performance that I enjoyed, the key message that resonated with me was the unique way in which God chose to insert himself into humanity. You know the story: a virgin mother, a census to force a return to Bethlehem, the manger, etc. But, what was presented was the shunning and rejection that Joseph and Mary experienced in looking for a place to stay overnight — in Joesph’s hometown nonetheless. According to Christian belief, it was in a manger that the King was born. A king born in a manger? Now, that’s subversive! In one of the most critical moments in history, God chose to upend logic and to upset the way of royalty.
Another story presented later in the performance was a song about the woman who came to Jesus with her alabaster box in the New Testament. Simon was having a gathering of Pharisees (men of means) at his home to meet with Jesus. These were people of influence and prestige, so it was with displeasure that they responded to the entrance of a woman from the city (a woman with a sinful past) who sacrificed everything she had in order to wash Jesus’ feet with her tears and to anoint them with expensive perfume from her alabaster box. The Pharisees (the religious leaders of the time) pushed back on Jesus, noting that this disreputable woman had interrupted the gathering of people who lived holy lives. But, Jesus noted that she was forgiven and that he did not see her as an annoyance in the least. She subverted the concept of the party in a way that Jesus must have loved!
You see, God has never done anything in a logical way. He’s always been — and always will be — subversive. I think we (especially Americans) have lost sight of the true message of the Gospel. The false vision that we have of Jesus being a white baby is just the beginning of our folly! We want an organized, safe life where God does things our way. We seek wealth and power, while God entered into our world in the most humble way possible. And, there are churches out there that tell parishioners that God will bless them only if they give generously to the church.
This brings to mind this famous quote from Annie Dillard –
“On the whole, I do not find Christians, outside the catacombs, sufficiently sensible of the conditions. Does anyone have the foggiest idea what sort of power we so blithely invoke? Or, as I suspect, does no one believe a word of it? The churches are children playing on the floor with their chemistry sets, mixing up a batch of TNT to kill a Sunday morning. It is madness to wear ladies’ straw hats and velvet hats to church; we should all be wearing crash helmets. Ushers should issue life preservers and signal flares; they should lash us to our pews. For the sleeping god may wake some day and take offense, or the waking god may draw us out to where we can never return.”
God should scare the hell out of us! As a friend of mine says, “God is insane. It’s just that his insanity is more sane than man’s knowledge.” But, we don’t want him to be so scary and mysterious. So, we domesticate him and put him in box where we can place him on a shelf where we can retrieve him when we most desperately need him.
Jesus was born a subversive baby and loved to subvert the religious leaders in the New Testament — and I’ll bet that he continues to work in ways that upset us and topple our world.
Published
During a week where we pause to remember all that we are thankful for, I’m excited to share an exciting development in my life.
I’ve been published!
Okay, so it’s just a grad school essay on leadership, but it’s a great first step. For any of you who are aspiring writers or who have one in your life, you know that being published is an accomplishment. I imagine that it’s much like an artist selling her first painting or a baseball player getting his first hit in the majors. So, as much as I want to downplay this accomplishment, I’m choosing to celebrate it with you!
Here is the description from the back cover of the book –
How do I prepare tomorrow’s leaders for the challenges of leadership? Everywhere you turn, the “leadership” question is being asked with ever-greater manic energy: Where will they come from? How do we reach this generation? I’m out of ideas on how to develop them any faster…what should I do? Here’s an approach you might consider… Listen to them. Leadership Stories from Tomorrow offers you a rare, one-of-a-kind glimpse into the minds and hearts of emerging leaders that have long eluded you. Their ideas, frustrations, beliefs, desires, resentments, and aspirations fills the pages of this book, and you’re given the raw, unfiltered perspectives of tomorrow’s leaders. In this foray into the inner sanctums of where emerging leaders reside, you will have a direct encounter with the provocative, edgy, and beautiful leadership postures of the generation of leaders waiting in the wings to take their place in the world. They will tell you most of what you need to know in order to gain their trust, train their minds, mentor their experience, challenge their assumptions, shape their viewpoints, and honor their hopes and anxieties, their theologies and desires. Once you read this book, your views on leadership will never be the same. And you will realize that the question “Are they ready?” isn’t nearly as vital as the more fundamental question… Are you ready?
It can be found at Amazon and other booksellers.
My portion covers five pages (pages 124-130), in a chapter called Stories of Truth-Telling: From Deception to Honesty.
As you know, this past Spring I decided to begin writing more frequently and posting some thoughts here on my blog. Although I hope and trust you’ve enjoyed some of my musings, the main thing I’m thankful for is how life-giving of a process this has been for me. I look forward to what the future holds and hoping that some day writing and speaking will become a career.
Thank you for continuing to join me on this journey!
