On being disabled
What does it feel like to be disabled; handicapped; or as our politically correct society would say, mobility impaired? That has been the question in my brains of late.
But before I get into this, I want to express, once again, my gratitude for the constant stream of encouragement that you have taken the time to write; I understand how daunting it is to drop all the personal apprehensions and throw down honest thoughts for all to read and, perhaps misunderstand or at least interpret for themselves.
I have tried to be honest with each thought or idea that I wrestled into existence on this lowly blog; a more difficult feat than I would ever have thought possible. You see, I found that I have a tendency to slip easily into hypothetical postulation; a type of mental jibber-jabber that is hollow and completely devoid of heart. I have asked myself why I struggle with being sincere; is it some repressed anxiety seeping into the fray? Perhaps I do it to appear wise; it’s actually something that I wanted to be; wise, that is.
Enough of that train of thought. It’s been a long time since I initiated this one way dialogue; this obscure window into my ever shrinking world. My first entry, I closed with the words “I'll post more stuff tomorrow - maybe even a picture or two, who knows.”
Indeed, “who knows” may well be the truest words that I have written. Even in my most terrifying of imaginings I certainly did not expect to be so utterly impaired on a physical plane, and still feel, for lack of other words, so normal. I don’t know what I expected to feel; certainly something more dramatic than this.
The mental transition to feeling disabled has been unbelievably slow. Even now, unable to move any limb, completely mute and barely able to choke down a few cups of thin liquid in a day, I don’t entirely see myself as disabled. Why is the idea of being disabled such a difficult concept for me to accept? Partially it is because, I am ashamed to admit, I had pompously held the view that being disabled meant that my value as a person was less; as if there existed some hierarchy in human value in which the highest form of worth is in health and the physical manifestation of control over one’s body. I cringe as I recall countless examples of my frigid disdain for those who suffered in bodies that refused to cooperate.
If you will allow my confession, there are 2 souls in particular that haunt me; even though it has been decades, the appalling judgments still hurt.
The first was a man, walking down the main street in Prince George about 20 years ago. I couldn’t tell you anything about him except that he was snotting and drooling like a pig The strings of his phlegm dangled out of his mouth and nose almost touching the sidewalk as his hunched form slowly shuffled by. I remember thinking that such a disgusting old man shouldn’t be out in public.
The other was more recent, perhaps only 12 years ago at Mama Pandas Buffet. That slob ate with his mouth wide open, flinging his head around to move the food into his cheeks. I remember how awkwardly his gait was when returning with his glass of milk; how he started walking with a full glass and how hilarious it was to watch him stumbling across the room; half the contents of his glass spilling out on his return trip.
Well, gentlemen, now I understand how you must have felt. I truly hope to meet you both someday and make it right with you. Now I must be content to have seen you through the lens of my suffering, for through this paradigm you were neither disgusting nor shameful; rather you were men of sore affliction whose hearts held the courage to be seen as you were; warts and all.
I can only hope to be so brave.
Thank you Stephen,
Your confession touched me deeply; who of us has not been guilty of pride and judgement? Not all of us have the humility or courage to go public as you have done. I admire you for that. It made me cry.It's beautiful how God is using your physical disability to heal the disabilities not only in your own soul but also in the souls of your readers,at least this one.God bless you precious brother.
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Bear one another's burdens...confess your sins to each other ...welcome to church.
Thank you for your obedience...time has a way of revealing, light has a way of penetrating...God has a way of illuminating...and redeeming..
His love is so patient and kind and absorbed and contained in such broken vessels...it must spill out...
Steve...again I thank God daily for you..and the treasure in your earthen vessel. Be blessed...you are rich...
and know that we carry you...and cry out for you and HOPE with relentless fervor...and pray with continual and fierce petitions on your behalf.
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Stephen............again you have blessed us by revealing the depth of your soul as you reflect on your life. Compassion and empathy for others are cultivated in a heart that values human life on any level. You are now in a place that understands the value of every soul as you daily face your own physical limitations. As followers of Christ,each of us must take time to consider our own mortality as we endeavor to live out our lives as an expression of God's love. The more I study the life of Jesus, the more I realize the need to live in an attitude of overflowing gratitude and obedience. Each of us will experience trials, disappointments and hardships but the question is; how will we use these circumstances to point others to Jesus? Romans 8:18 says: "I consider that our present sufferings are not worth comparing with the glory that will be revealed in us." What a glorious promise for the believer!!! Romans 8:35-39 continues to express Paul's steadfast faith in God's love as he experienced tremendous physical suffering and privations. May you also be deeply encouraged, Stephen, to know that your current circumstances are pointing your readers to the heavenly realm; a place where we will be eternally united with the lover of our soul. "No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him.........."
Your friend and sister in Christ.......Diane
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Hi steve
I am humbled as I read your blog, so herculean, so human, straining, so transparent. I doubt I myself could face my own physical decline and dependence with such courage and willingness to be the nidus of the "Steve Host, ALS" virtual community... But I see your struggle (Jan 7, 08) reflecting back such a mix of emotions from a diverse group of friends, reflecting a shared fallen humanity, a shared tension between the way it is and way we want it to be and the way God intended it to be. A catalyst for soul searching, for honest appraisal of what life really is about, of the role of pain, debility and confusion in this land so choked with weeds and hearts so hardened by pride. My hat is off to you, my friend. I miss our chats over a nice - what was it - Grey Fox Cab? I miss our mad motorcycle rides, remembering you fly by me when I was doing over 160... You sustained me in a dry time. My eyes are not dry, my mentor, my heart is breaking with the injustice, the agony that you cause to echo from the canyons of my own being. This race for the Kingdom, this uphill battle toward your perfect wholeness is an inspiration, and gives me courage. You are special to me, my friend, loved and missed and remembered, your story branded deeply in me, giving hope, bravery and, God willing that I face a struggle as yours, the pluck to keep my eyes fixed on that which is unseen, not that which is fading away. For death is at work in all of us, and as we hear your faith resonate, life is at work in us. Fight the good fight, finish the race. We do not merely watch, we live some measure of your struggle and will live it all the more as we grow to understand in increasing measure your personal suffering and pain. And we will not be subscribing to "Steve Host, ALS" any more, it will be "Steve Host, Witness" joining that cloud of witnesses that gives us the ability to carry the torch. I appreciate your willingness to let me get to know you - and many others along with myself - better.
Kudos, Brother
Dr. Rob
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Another brilliant blog entry Steve! While I cannot necessarily identify with being "disabled", this blog is certainly calls me to check my own heart, and search my own attitudes and thoughts to those who are not blessed with full command of their bodies. Thanks!
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dude .... your words teach us well.... its the gift you have been given. To show us, to illustrate to us through words and word pictures the intense beauty of life that we get to experience... thanks my friend for your gift to me... In the midst of this most challenging journey you are on and the difficulty of being alert as your human frame gives way... its always a pleasure to walk through your bedroom door and see you smile and wink with all the energy you can muster...
thanks bud...
lets go sailing
Alvin
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Hi Stephen,
in my profession as a waiter I noticed, one point for our behaving to disabled people is not, that we blame them for their disabilities, behaving or looking, but that we feel our own poorness and insecurity. We feel ashamed for not knowing how to handle the situation. How many and what kind of help is needed, do we come to close, do we notice all the disabilities just by sight, and so on... It´s a little bit like judging a man by his words, when he doesn´t speak your language too well. You know very well, he only doesn´t know the words in your language, but because he´s using only simple words and grammar, you don´t know how deep his thoughts are. Do you also speak simply, to make sure he understands you or do you talk like usual, because may be he understands better than he can talk. Of course you can ask him about that, but than you show him that his language is miserable.
But talking about misbehaving, the situation I will never forget, because it made me so angry, was, when we were in the hospital, Jaclyn parked the car and both of us went to the reception desk. You could still talk then, though a little slower. You had to give all these information about your appointment, your insurance and so on. After the first sentence that you spoke, the woman asked m e all the questions and didn´t turn back to you, though it turned out very clearly, that I neither couldn´t hear anything through the glass, nor understand what she was saying because of the language, nor knew any of those things she wanted to know. Afterwards I tried to help me over the situation with a joke, but I really felt ashamed about her, about me and it gave me a presentiment of what you would have to suffer in future besides your physical disease. And that woman worked in a hospital for muscle diseases and must have known better. How many more mistakes will we laity do, that seldom meet handicapped people?
We check your blog daily and it really means a lot to us, even if we don´t leave comments too often. (Hey, did you know, you really have a kind of fanclub in Bamberg even of people that never met you. They are deeply touched by your thoughts, wisdom, humour, honesty and strongness.) It´s like Jaclyn´s mother said, the last time I called her:
"You wake up, and your first thought is about the Host family and you go to bed and it´s your last thought." Even more, during the day we work, eat, play games, laugh, argue, watch TV, go out, go shopping, have fun, everything like usual. But during all those activities, there´s not a single moment when you´re not on our minds, even in my dreams at night.
Love, Mirjam
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Mirjam,
Up until this letter, I had no idea that our humble plight occupied such a place of honour in your hearts. And I am moved to tears that there is a group of people who would even bother to take the time to even read my stories. If you know these people please pass on my thanks .
Love you guys!
Stephen
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Stephen, your 'humble plight' is never far from my mind and I have to say (after checking and seeing no entries since Jan. 10), how DELIGHTED I was to read your last entry. Thank you! I hope to get over there sometime this week-end.Hugs to you all! Gail \o/
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Stephen, as always, your insight has brought me to tears. The raw truth of seeing people through our own cracked lenses. It reminds me of a time at VCF when a very tall man named Leonard used to come to church, grab a coffee - booze on his breath, and sometimes still drunk. I would sometimes feel fear if my kids got too close. He seemed gentle and harmless enough, but one never knew. My cracked lenses told me so. One day Leonard staggered into church, and my 2 year old son walked straight up to him, put his right foot forward, and asked Leonard if he would tie his shoe. I stood back and watched Leonard crouch his lanky body down to reach this tiny boy, and take quite a while to tie those laces. Through his fumbling, through his teetering on crouched legs, through his drunkeness, the little boy waited patiently, smiling at Leonard. When he finally finished tying the shoe and stood up, he looked down at Chris (my boy) and beamed. Chris had looked him straight in the eye, smiled, and said, "Thankyou!" and took off to play without a second thought of how he looked, how he smelled, or how he had fumbled with his laces. I looked at Leonards face. He had tears in his eyes. He looked over, smiling, and said, "He wanted me to tie his laces." What brought tears to my eyes was not the fact that he actually completed the task, or that my child went to him to have it done. What touched my heart was knowing that Leonard, being as "disabled" as he was, felt important. He said, "He wanted ME to tie his laces." Leonard felt needed, he mattered. I think we get lost in the fact that all are needed and all matter to God. Steve, you cannot possibly fathom how much you touch the hearts of the people who read your blog. I pray that we all take the cracked lenses off of our face, so we can seek His face with clarity, through the eyes of a child. As always, thank you for blessing me.
Shelly
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Dear Stephen, I just visited your site after a year long hiatus.
It amazes me that you can articulate and post your thoughts so capably. It kind of confirms your recent blog about disabilities doesn't it?
I think about you often and respect your need and ability to express yourself.
My limited experience with als and communication devices consisted of a piece of cardboard with the alphabet written on it and a woman who could only blink her wishes (1968)It grieves me that this was the best we could do for her at the time.
I wish I had the words to express the empathy I have for you, but I feel like the patient with the alphabet on a piece of cardboard--inadequate. Thank you for continuing to reach out, Stephen. You are a student and a teacher as are we all on this journey through life.
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