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A Year of Wheeling
Written by Chloe on Friday, July 16, 2010
With hindsight, my resistance to becoming a majority time wheeler seems quaint. Why would I have resisted a change in my life which has proved to be so beneficial? As with a lot of things, the answer seems complex.
Oftentimes in life the only way forward appears to be a leap of faith by jumping off a cliff. No, don’t rush out just yet; I’m talking metaphorical cliffs here. The danger is that one can never be quite sure if one’s parachute is going to open, where one is going to land, how hard one is going to land, or indeed whether one has a parachute at all. Fortunately for me, my wheelchair came equipped with an excellent parachute as standard issue. Umm; this is still a metaphor by the way. Don’t be test driving your wheelchair off a cliff to see how good its parachute is. I’m reminded of an exchange between Sean and myself a long time ago. If I rightly recall, he was advising me not to start out with a wheelchair that had all the bells and whistles. I think I replied that I was not aware of wheelchairs coming with bells and whistles, but that it sounded rather fun.
What exactly are the benefits anyway? Easily the biggest benefit is that a wheelchair is by far the most effective treatment for my BIID that I have yet tried. BIID can be seriously debilitating. "It taints everything it touches." BIID can be like a constant sledgehammer to the brain. It never leaves you alone. Thinking about anything else at all can be virtually impossible. So it was a year ago. Being in a wheelchair gives me peace from this. No, not complete peace. Once in a while BIID still rages wildly out of control, but for the most part I have a sense of calm about it. The wheelchair doesn’t do anything to take away the need for the physical impairment, but the sense of urgency and desperation about it is gone. Sean gives me three years before that returns. He has been right about me enough times in the past that I give credibility to his opinions. I have used up a year already. That went by quickly!
Why would I have had any resistance to these wonderful benefits? Well, I was pretty dubious about the extent of such benefits. Frankly I didn’t have much of a clue regarding how or why this was supposed to be such a great thing. I had been wheeling part time for a year already, and yes it was very good; but not THAT good. It had not crossed my mind that, once I reached a certain threshold of time per day spent in a wheelchair, there would be a huge non-linear increase in benefit. Besides, I’d never really seen myself as a wheelchair user, never been particularly interested in or fascinated by wheelchairs. Sean knew what it would do for me though; and he told me. I doubted him. How could he possibly know such things about me?
Although the effect on BIID is the largest benefit I receive from being a majority time wheelchair user, it is far from being the only benefit. Other benefits are actually quite substantial, yet largely unpredictable. Another big one is the reduction in general levels of anxiety. As with the effect on BIID, a wheelchair is the most potent anxiolytic I have ever tried. Again, it does not make my anxiety disorders go away; but the extent to which I am disabled by them is greatly reduced. How does this work? Is it simply a side effect of the reduction in BIID symptoms? Or perhaps one of the root causes of my anxiety has been presenting myself as different from my self-image? A corollary of this is that my social self-confidence is higher than it has been at any other time of my life. I feel more socially competent than ever before. I am more intensely interested in other people than ever before. People seem to like me better than ever before. I’m not quite sure how it relates, but guys clearly hit on me, in a sexual way, far more than ever before. I’m honestly still baffled by guys in their twenties (okay, gals in their twenties too) showing sexual interest in a wheelchair chick in her fifties. It’s nice though!
Perhaps a more obvious social benefit is that barriers to interaction with other PWDs are dramatically lowered when one is unambiguously also presenting as a PWD. This feature interacts synergistically with the other social benefits.
Things get psychologically deeper than any of this stuff. The wheelchair relieves a huge weight of psychological burdens pressing down on me. This has allowed my attention to shift to other areas of psychological concern. In a nutshell: the large collection of emotional baggage from childhood and later is all but gone. This didn’t happen automatically. It took intense psychological work. But it couldn’t have happened at all were it not for the wheelchair.
The benefits of being a majority time wheelchair user are by no means limited to social and psychological arenas. There are physical benefits too. Not only did I not predict such things, but I had expected the opposite. I am talking about pain reduction. I should have been clued in when my GP wrote "back pain" as one of the indications in her prescription for my wheelchair in 2008. I was totally ignorant about such things. At the time I had no idea that so many people use a wheelchair to manage back pain, rather than for difficulty in walking per se. I’ve already told the story elsewhere of my GP figuring out that, by being a majority time wheelchair user, my blood pressure stays normal without medication. The intermediate mystery link is the large reduction in back pain. As with other things that the wheelchair helps, the pain never completely goes away; and on occasions it still gets pretty bad. However, there is no question that during this last year of wheelchair use the back pain has generally been substantially less than at any time since the back injury in 2006.
A bigger surprise was the effect on fibromyalgia pain. I had expected this all to be negative. Admittedly a good deal of it IS negative. Strenuous wheeling both triggers and exacerbates fibromyalgia episodes. It’s a pain! However, as with other things, one learns what one can and can’t do. I’m not going to be wheeling up Mount Kilimanjaro. What I didn’t predict were the positive effects. With hindsight it now seems obvious that fibromyalgia pain in my legs would all but disappear. A more subtle effect is due to the wheelchair having a large influence on my levels of emotional stress, both directly and via the effect on back pain. Emotional stress is one of the classic triggers of fibomyalgia, and it used to be a major factor for me. As with other things, the wheelchair doesn’t reduce my emotional stress to zero; but it helps a lot. I can’t think of a single fibromyalgia episode triggered by emotional stress within the last year. It has almost all been triggered by physical stress: wheeling, hiking, skiing and car wreck. I don’t actually keep count. However, I’m sure that the number of days bedridden due to fibromyalgia pain within the last year amounts to less than a week. That’s extremely good going. On balance the wheelchair seems to be a benefit for this.
I could go on with more and more trivial stuff. My heel calluses are much less than they used to be! My heels now have that baby soft skin I remember as a kid.
Another category of unforeseen benefit is just how much FUN being in a wheelchair can be. What comes to mind is speeding down hills, and dancing.
So… A big part of my reluctance to take this step, made a year ago, was being clueless about all the wonderful things that would result. There are other factors that made me hesitate though. All of us have to face the issue of what we tell people. Most of us don’t like telling lies, but we also don’t like telling everyone about BIID. Things happen. You get in a car wreck. You use a wheelchair. You keep using a wheelchair.
Do I sound like a walking advertisement for wheelchairs? Ha ha! There has to be a downside of using a wheelchair, right? Yes. I have one word. Accessibility. Most of the time one can find solutions, but it can get frustrating. The upside of the downside is that it can motivate one to become an agent for positive social change. See, it’s all positive after all!
There’s one last observation. I don’t notice the existence of my wheelchair as much any more. It’s becoming invisible to me. I didn’t know that this would happen. It happened with my leg brace a while ago. It’s taking longer for the wheelchair. I forget that I’m wheeling. I forget that I’m making a transfer. I forget that I’m in a wheelchair. I forget that I’m disabled. Everything is so normal, so automatic, that I think about it less and less. Paradoxically, the less I’m consciously aware of the wheelchair, the greater is its positive effect on BIID.
Sean… You opened the door for me. My gratitude is endless.
Results may vary.
Tags: Accessibility, Anxiety, Back Injury, BIID, Cliffs, Impairment, Pain, Parachute, PWD, Sean, Wheelchair
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8 Comments
2 On 16 July, 2010, Sophie said:
Very occasionally you meet someone who gives you advice, telling you they don’t want to boss you around and that you have to decide for yourself, that tends to almost always be right. You get to the point with those people where you wonder if you’d just save time if you listened to them and did as you were told right away. (No I’m not just referring to Sean here, I have another friend who has this quality as well :P )
I know what you mean about the chair becoming inexistant. I haven’t wheeled nearly as much as you but when I was using the chair regularly it just became quite natural – until the day I got stuck because I was in a regular parking space, then the chair became existant.
It’s the same with the brace. It now just goes on in the morning and comes off at night like it was a pair of trousers.
4 On 23 July, 2010, Danielle aka Alicia said:
Chloe, I am so glad that you have found a way to temporarily deal with BIID and that your methods give you some sense of peace.
I also want to extend a sincere thank you to all my friends here at Transabled.org; my official website is garnering approximately 2,200 hits per day, and many of those (about 15%) come from here. Thank you so much! In August (the month of my birth) I have a very special way to say thank you, so stay tuned!
In addition, I have received numerous emails from those that primarily post here, and have enjoyed them all; thank you for letting me in on your wonderful, magical, interesting and impactful lives.
5 On 12 August, 2010, Danielle aka Alicia said:
Hi, This is Danielle and, as promised in my above post, here is my free gift to all my fiends here today: even though it is my birthday, I want to give a gift to all of you here today, for your love and support have been very appreciated. In order to claim it, all I respectfully ask is that you read this post.
I am an independent, struggling poetess and author. The primary themes I write about are self-authenticity, acceptance, oneness, how to love yourself, and utilization of the power of perspective to see the amazing potential there is for enlightenment in every situation we experience.
Today is my birthday, and I want to give a present to everyone here; I am not a fan of commercialism or materialism. For my birthdays, and for Christmases, I prefer one handmade gift, or just sincere words of’ “I love you,” or something along these lines. A warm hug or a simple gesture from one’s heart is the best gift I can ever have. As a poetess, there is nothing more meaningful as a gift that I can give to show my love than through a handmade card with a poem on it. I do love the world so very much!
However, my primary mission in life is not about healing the world per se; rather, my life is simple: it is about just being authentic to that which I am—and all I know about myself is that I am a writer. Healing others just seems to be one of the fortunate benefits that follow my work. Touching other people’s lives is so wonderful, but it just springs naturally from me just being me. In 2010, I have to tell you that it is very strange to have the calling of the poetess, for the world seems completely at odds with what I do. In this current time we are in, it seems that when it comes to seeing metaphors and extracting their lessons…when it comes to empathy, global compassion and acceptance of all…when it comes to eschewing the “more, more, more,” materialistic, greedy philosophy…when it comes to exploring the mysteries of the universe and how they reflect in ourselves…when it comes to knowing why our mythologies are important…and when it comes to having a true, deep appreciation and understanding for what art and aesthetic achievements mean to and for the highly evolved human being, then I feel like an anachronism from the long-ago, literary past.
While I recognize that money is, unfortunately, often necessary to live in this fractured world, give me a pot of pinto beans and some homemade corn bread and I am happy; as long as I am following my heart, doing that which I know I was meant to do, there is nothing greater.
You see, this poetic journey began when I was very young. I started writing 30 page short stories at the age of 7; at age 8 I was writing abstract poetry and at age 12 I wrote my first 385 page novel. At 15 I won a Michigan State championship for best short story in my age group.
When I was in the 5th grade, I was tested academically and determined to be writing and reading at a sophomore college level. I was then taken out of class during the language arts lessons and transported to either another elementary, junior high and/or high school where I tutored struggling students. When I went to first, junior college, then later to university, I was always taken out of language arts classes by the professors and allowed to just “test out.” Then, I was put back into tutoring roles again!
I can’t describe what it is like to be a poet or poetess. Have you ever been driving and had a vision of words hit you so hard that you couldn’t see the road? I have had to suddenly pull my car over and begin writing or else I could go no further. Have you ever gone 3 days without eating because a character you were writing about wasn’t eating? Have you ever written about a character who was lost in the woods and then you have become equally scared, and felt lost? Have you ever cried over the tragic events you knew a character you were writing into existence was going to have to experience? This is my world. Before you begin writing for the day, have you ever had to remind a friend to come shake you if you have been writing non-stop for 16 hours and are not responding? And, when they do come shake you, do you look up at them with the eyes of your character before being able to align yourself back into your own reality? Do you rise every morning at 3 am and write until 6 pm, eating all your meals at your desk? I am a method writer, and this is my world. Think about it in whatever manner that you wish, for it makes no difference to me. I love being a writer and knowing this is what I am meant to do. I understand BIID because I understand myself.
Of course I want to sell my books, but that is never my goal! Of course I want to heal the world, but that is never my goal! Of course it might be fun to win an Oscar or a Pulitzer, but that is never my goal! I will say this again: all I want to do is be true to who I am, and that is, living the life of a poetess and author. It is an ancient calling, and one I take up quite willingly.
Of course, it is even worse on me financially because I choose to be primarily independent in publishing my work. I am not interested in an editor telling me how poetry “should be,” nor am I going to be pushed into deadlines (for art!?!) and crushed by marketing professionals who only really care about money and thus walk around with greedy eyes that constantly flash $. I am not going to have somebody tell me, “Hey, just smile REALLY BIG for the camera…we need to sell you!”
If I ever allow a standardized publishing house to handle some of my work, believe me, they will have to allow me to make sure of the integrity of the whole project from start to finish. Otherwise, no way, sorry! I have turned down several offers already that probably could have made quite a bit of money; but, in the process I would have lost my soul and so I have refused.
The world does not reward art much anymore. But, the rewards that I reap from myself are the greatest ones of all. For me, there is just nothing greater than following my nature. So, today my natural instincts motivate me; I feel compelled to give a present to each of you on this simple Wednesday in August. Thank you for being my friends, and I love each and every one of you so very much. I know that times are tough, and I wish I could see more people just helping people in this world. As they say, you have to be the change you wish to see. So…
You can download the deluxe version of my poetry book FOR FREE FOR TWO WEEKS ONLY—BEGINNING TODAY, AUGUST 11th—by going to the following links:
The cover for the deluxe version of my book is at:
http://www.daniellesaintemarie.com/A_Glimpse_to_Open_Cover.pdf
and the deluxe version of my book in its entirety is at:
http://www.daniellesaintemarie.com/A_Glimpse_to_Open.pdf
(On my PC, after the book itself loads I have to click to page 2 then go back to page 1 to see page 1; why, I do not know, but I am telling you in case this is your experience as well.)
You can save a copy of my book (and the cover) to your hard drive, by clicking the icon in the left hand corner that reads, “Save a Copy.”
This is normally a $15.00 download, and I am sending this to all my friends here, which is currently quite a lot. Thus, if everyone downloads, the mathematics can exceed $14,000 for this free gift. That is my gift to all of you today, on the day of my birth.
If you enjoy this book and ONLY if you feel you would enjoy its physical presence in your life, and you wish to honor me with a purchase of the deluxe version, then simply head to the page marked, “works,” at http://www.daniellesaintemarie.com/; the hardback version of this book is expensive, I know. But, it is absolutely worth it to those who are open to its full experience. I have been receiving emails from the ones who bought it telling me how much it has changed their lives. So, how can anyone put a price on that?
(To read and/or watch videos and more about what this poetry book is all about, and why it took 33 years to create, go to the following links and turn up your speakers:
http://www.daniellesaintemarie.com/works.html
http://www.daniellesaintemarie.com/index_1.html
http://www.daniellesaintemarie.com/news.html)
Also, you can enter to win a free copy of my book in a drawing to be held on November 15th! Just go to the following link and read on for the simple details:
http://www.daniellesaintemarie.com/news.html
Life is tough, and I can scarcely remember a time when it wasn’t for me; I would have liked to have steak and shrimp today, but I cannot afford it. Instead, I had to take what money I had and make sure two of the utilities didn’t get cut off; I will have to settle for my pot of pinto beans, but my utilities are on and I am still very, very happy! For, I also learned a long time ago that it is never the situation that gets us down; rather, it is our viewpoint of it. Yes, some things are inherently tougher to get through than others, but that doesn’t mean we cannot get through them.
Happy Birthday to ME! I am so very grateful to be ALIVE and to have been able to share in your lives!
“It’s my party and I will give away if I want to, give away if I want to, give away if I want to! You would too if being a poet had happened to you!” (Not Leslie Gore).
6 On 15 August, 2010, Danielle aka Alicia said:
…and, i just have to add that I totally love the term, “a wheeler.” There’s just something about that…it sounds so cool! “I’m a wheeler.” Hell yeah!
After I came back from the grocery store today I commented to Alicia about the guys who had struck up conversation with me. It still surprises me because it just never used to happen. She said that when she first met me I seemed a rather unapproachable kind of person and that I used to make disparaging remarks about men. She says that now I am much more friendly and frequently smiling. Thank you wheelchair!
Another year has gone by. There have been a few little changes; I have started hiking in a wheelchair; I no longer take Prozac. But pretty much everything I said a year ago is how things are today. I am stable. Things are comfortable. I am not even remotely tempted to stop using a wheelchair; the thought is horrifying. Things are good.
Just to be clear; the need for paraplegia has not diminished.
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1 On 16 July, 2010, Sean said:
You make me sound like a prophet! Giving me way too power :) I just call it as I’ve seen it happen :)