Downside Up vs. Stuff Tetraplegics Like

"Anyone can become angry - that's easy. But to be angry with the right person, to the right degree, at the right time, for the right purpose, and in the right way; this is not easy," - Aristotle

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Well, I've decided on a new blog name and URL for my concurrent blog. It's called Downside Up: Benefits Of Living With Tetraplegia and the URL is:

http://downsideuptetraplegia.blogspot,com/

The first posting is ready to read!

Mirrors vs. Windows

"Most people are mirrors, reflecting the moods and emotions of the times. Some people are windows, bringing light to bear on the dark corners where troubles fester. The whole purpose of education is to turn mirrors into windows." - Sydney J. Harris
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I've been considering my other blog and decided to take a little different approach. Instead of writing about "stuff tetraplegics like", I'm going to write about the positives of being tetraplegic. Hopefully it will take on an affirmative spin, fostering smiles or an 'I wouldn't have thought about that' comment about looking at the world from a different perspective. Perhaps this might be a way to turn mirrors into windows for those of us living with tetraplegia. So, I'm mulling over a name for this blog. More later...the blog name and URL TBD.

Stuff Tetraplegics Like vs. Lessons On Life: Tetratales

"I try to offset any tendency towards the macabre with humour. As I see it, this is a typically English form of humour. It's a piece with such jokes as the one about the man who was being led to the gallows to be hanged. He looked at the trap door in the gallows. which was flimsily constructed, and he asked in some alarm, 'I say, is that thing safe?' " - Alfred Hitchcock

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I'm in an odd state of mind today...thinking of two blogs and how they might be twisted to speak to being tetraplegic. The blogs of interest are "Stuff White People Like" (http://stuffwhitepeoplelike.com/) and "Stuff Christians Like" (http://stuffchristianslike.blogspot.com/).

Let's see...how about "Stuff Tetraplegics Like" (http://stufftetraplegicslike.blogspot.com). Original, huh? This will be blog number three. Blog one "The Impossible" was active from June 2008 - June 2009 and blog two "Lessons On Life: Tetra (Quad) Tales" is currently active and was started in July 2009. Think I'll start the third blog to run concurrently with number two and see where it takes me. Check out the link and see what you think!

Trust vs. Skepticism

"Mistrust is the by-product of not feeling heard. At least, that is, for those of us with trust issues. For others, they just let it roll off their back, like water rolls off a duck, as though it is just an opinion." - CJS

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As I see it today, with much more clarity from a rested body, mind, and spirit, I have a choice. Trust in the expertise of those whom I have consulted for my health care, relax, and seek peace, or be skeptical and add unnecessary chaos to life. In this case skepticism is linked to fear, and, as the past has solidly demonstrated, I have nothing to fear (but fear itself - who said that???). Living from a place of fear is counterproductive to a quest for calm acceptance. I think I prefer calm over control. Perhaps the time has arrived to loosen my death grip on being in control of everything and embrace the flow of life from a place of positive past experience. Think I can succeed? It's worth a try.

Awake vs. Sleep

"To be awake is to be alive. Time is but the stream I go a-fishing in. Every man is a builder of a temple, called his body, to the god he worships, after a style purely his own, nor can he get off by hammering marble instead. We are all sculptors and painters, and our material is our own flesh and blood and bones. And nobleness begins at once to refine a man's features, any meaness or sensuality to imbrute them. Rather than love , than money, than fame, give me truth. - Henry David Thoreau, Walden, 1854
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"...I treat my body like a temple, you treat yours like a tent..." - Jimmy Buffett, Fruitcakes


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It has been a long time since insomnia has visited and taken it's toll! An occasional visit is tolerable. My mind has been filled with totally unnecessary "what ifs" tonight that have sent me web surfing rather than sleeping. Wednesday I will have a cystoscopy to evaluate the cause of some bleeding that happens sporadically and the increased difficulty with catheter changes over the past few months.

Ultrasound and KUB at the outpatient rehab clinic a couple of weeks ago show no bladder or kidney stones, yeah!!! They did identify a small tumor inside my right kidney, a benign neoplasm called an angiomyolipoma. Common in women over fifty in the right kidney, interesting. Of course, I had to find out more, thus the web searching. I want to know what questions to ask and be able to understand the answers. I also want to be reassured that this tumor is truly a benign, slow-growing mass and know if further testing should be done to provide that reassurance.

Good reason to have this night of awakeness, as long as it does not drift back into a habitual change again. Sleep times have been off again too. I've noticed it is related to late night, early morning hour visits and "sleepovers" by my college student daughter. It is hard for me to wind down and sleep when she's awake. Oh, well, it is temporary and it is good to see her for a bit after her trip to Tuscaloosa for the football game this weekend.

Observable vs. Hidden

"There is no abstract art. You must always start with something. Afterward, you can remove all traces of reality. - Pablo Picasso

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"Every artist dips his brush in his own soul, and paints his own nature into his pictures." - Henry Ward Beecher

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The Monte Sano Art Show was scheduled for today. I was excited about it and planned to go, especially when I found out that Nathan had a drawing that was supposed to be on display. This drawing has been selected for the yearbook and the principal told the art teacher that it is the the best art ever at Nathan's school. No surprise to me. Nathan has been drawing since he could hold a crayon.

Perhaps art holds a key to keeping Nathan in school. I hope so. He is so smart, but easily bored and doesn't see the point in going to school. Actually, he has inherited both his talent and thoughts on academics from his mom and dad. Adia, Nathan's little sister, loves school, and art, and swimming on the school swim team. She's an achiever and loves being a leader (she was a K-Kid last year for her class). Both Nathan and Adia tested as eligible for the gifted program in school.

It is so interesting to observe the difference in how their giftedness is so differently expressed. Nathan is lost in his thoughts, creating imaginary creatures and heroes and stories to go with them while Adia is living out loud, enjoying every activity and achievement she can accomplish. Part of the difference may have to do with gender, however, it seems to me that more is based on their personalities.

The Picasso painting "Girl Before Mirror" pictured in this post, demonstrates the observable and hidden portions of everyone's nature. As Beecher expressed, art is a reflection of some part of the artist's soul. Picasso definitely had both observable talent and dark, hidden, parts of himself. He stated that all art starts with something real, but the abstract is created by then erasing the parts of reality from the creation. In the case of this painting, a good dose of reality remains in the abstraction. I am so curious to see where Nathan and Adias' creativity leads them. My hope and prayer is that it leads them to happiness and success - their definition of success once they become adults. Until that time, the challenge will be to impose societal expectations for success (formal education) to provide the groundwork for their futures.

Why am I thinking about art today? The combination of anticipation of the art show today and of the movie on television tonight about Georgia O'Keefe. How does this relate to the theme of this blog? Perhaps first of all, the simple...I decided to not go to the art show primarily because I didn't want to go muddin' in my wheelchair. It is not worth the cleanup time. On a deeper level, living with tetraplegia is living with an obvious and observable physical disability as well as the not observable, hidden associated challenges. Like the girl before the mirror, there is always more to a person than what you see on the outside. Was that a stretch to make this fit in my blog? Maybe...but it is what it is...

Relaxation vs. Productivity

"At the bottom is the best soil to sow and grow something new again. In that sense, hitting bottom, while extremely painful, is also the sowing ground." - Anonymous

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Today, I took the day off, slept in, have done absolutely nothing productive, including getting dressed. I am tired and in need of a day of rest and recuperation. Trip to Birmingham yesterday was long and exhausting. The right side of my back is still uncomfortable after plenty of sleep. Maybe it will feel better tomorrow. It has been kind of nice to have no plans for the day. I don't feel antisocial or sad, just needing to be re-energized. Introvert paradise...

Ebb vs. Flow

"What makes a river so restful to people is that it doesn't have any doubt it is sure to get where it is going, and it doesn't want to go anywhere else." - Hal Boyle, "Help, Help! Another Day!, 1970

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Beautiful, sunny day today. a mix of Summer and Fall. My hanging flower baskets continue to bloom, especially after the massive rains over the past two days. Across the street in the wooded area separating my apartment from an upscale housing development, hints of Fall colors are starting to show on the deciduous trees. I love the Fall foliage. Woke up in my stripped and packed apartment to make a series of telephone calls which have become usual fare to keep my life moving somewhat smoothly since my injury.

First on the list is the carpet cleaning company. They will be here at 2:30 or 3PM. "Sorry we missed you appointment yesterday" they said. No explanation. Oh, well. It will get done today. I don't know how much more cleaning this ragged carpet can take. It is worn thin. Guess my wheelchair wears more than usual on this cheap, apartment grade carpeting. No carpet in my new home - textured tile it will be.

Next a call to the pharmacy that sends out my medications to check on refills. They are going through some kind of transition. The people with whom I've built some repoire over the past few years are never on the phone now and the people I do speak with are not very friendly and do not seem the least bit concerned that I might run out of medications next week. "I have to call the doctor. We'll send them out whenever they get the refills to us" commented the pharmacist on the line.

Her response prompted the need for another phone call to the doctor's office. A new medical assistant who has replaced the one I'd worked with for the past three years. I explained the need for refills, particularly on two critical medications. "You have an appointment next week, can we do it then?" No, I will be out of medication by then and the turnaround time is five days. The pharmacy is under the illusion that sending medications by two day Fedex means I get them in two days. Not so... The new assistant continues, "I don't know what the previous assistant was thinking. She scheduled you so far out that your prescriptions ran out. Well, we'll fix that this time. This just makes so much extra work for the doctor and me!" I quietly think "and it's not for me?" but politely say "thank you so much".

Call number four to verify my annual appointment at the rehab center where I discover that my appointment is at 10:45AM rather than the 9:15AM time sent to me by e-mail. I wonder how many other appointments have been actually scheduled later than I'm told? Guess that's one way to deal with my struggle to be on time for appointments. What does Martha Beck call people like me in her article on "Transition Anxiety"? Polychronic. Interesting take on time orientation with the focus on the difficulty polychronics have making transitions from one activity or encounter to another (see Oprah.com, search "Martha Beck" and "Transition Anxiety"). Time is a river...

Next call for the first hour of my morning was to the durable medical equipment provider to see if he would be available for adjustments and repairs, left a message. He will call me tomorrow. Just a snipet of how almost every day begins. Interlaced with calls from two of my daughters with issues and problems they needed help in solving. Ho...hum...the carpet cleaners are here, FINALLY!!! Time to end this rambling. In many ways, my life is just like everyone's life. Familiar, not worth stressing over, repetitive ebb and flow.

Progress vs. Patience

"Progress lies not in enhancing what is, but in advancing toward what will be." - Kahil Gibran, "A Handful Of Sand On The Shore"
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Today was an exercise, and I mean this word literally, in patience. Exercise because of the physical exertion and creativity preparing our apartment again for the carpet cleaners. I spent at least two hours moving storage containers, laundry baskets, chairs, barstools, file containers and on and on...Vaccumed the floor as well as possible with my insomnia TV sweeper. Almost everything is up off the floor in my bedroom. Picked up, but did not sort - I will do that as I replace necessary items. I have a vision of what I want my living space to look like after all of the sorting. (Keep in mind that this is all being done from my wheelchair.)

Anyway, I was stood up by the carpet cleaners again!!! I called and left a message. Patience, patience! I'm keeping everything just as it is and am not putting away anything ! I'm grateful for today. I woke up dry and warm. No unexpected bathroom runs either. Good thing. My bathroom is totally full of stuff that I refuse to move out again until the carpet is cleaned. Hopefully. this will happen tomorrow! Have patience and remember Gibron's words of wisdom...

Plan vs. Body

"It is in moments of illness that we are compelled to recognize that we live not alone but chained to a creature of a different kingdom, whole worlds apart, who has no knowledge of us and by whom it is impossible to make ourselves understood: our body." - Marcel Proust

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I am nominating today as "bodily functions" day. I had a plan, checklist and visualization about how today would go. I was psyched. It felt like I was finally making some headway on the visual torment that my cluttered apartment has been inflicting. For the past three days, I have been steadily accomplishing tasks toward the end goal of having my living space gradually opened up and arranged to let in the light of hope that a health and well-being program could be accomplished without searching for a way to get to the equipment I need.

"Wouldn't it be great?" I mused as I thought about getting into my wheelchair, doing my full stretch (yoga) routine and morning meditation without having to compete for space with laundry to be folded and put away or working around the sleepy little, jellybean shaped body of our dog curled up in the blanket on my bed. What could possibly slow down this three day burst of positive creative energy? Out of control bodily functions!

I awakened this morning to the too familiar feeling of being cold and wet. My hand slipped under the covers, tracing the length of my suprapubic catheter from my second belly button (catheter entry site - surgically created) to the drainage bag hanging on the side of my bed. No kinks in the tubing. I touch the bed below me. Ugh...it was true. Guess it was an unexpected bladder spasm or something similar that caused this nursing home smelling leak.

I don't want to get up! I know my morning will be spent washing and drying stinky wet linens and disinfecting the mattress on my bed, putting on the overhead fan to help it dry, and taking a bath. Add to that, irrigating my catheter with Renacidin, just in case some sediment was the cause, and changing to a clean drainage bag. The process begins...

Close to noon, I eat breakfast as I rest from the unplanned exercise of stuffing linens into the washer, interrupting the massive laundry job that was underway. Okay, I'll just revise my list and add the unexpected activities so when I review my day, I can prove to myself that I have had a productive day. I kept plugging away at the laundry already started and put away several loads of towels and washcloths.

I started thinking, "okay, the revision of this day is moving forward according to plan B". I decided to do bowel care early, so it will be out of the way at bedtime. In the meantime, Haley and I were hungry. I volunteered to go out to pick up salads for us. It was a rush, but I made it before Haley left for the KD house to spend the night after her meeting. After Haley left, I started eating my salad while watching one of my favorite TV shows - Criminal Minds.

The salad was good in spite of the fact that it was made with iceburg lettuce. I continued with the laundry marathon. As I unloaded and reloaded the dryer and loaded the washer, I had a feeling that I was about to have to go to the bathroom again. As I rushed to the bathroom, I realized that another change of clothes was going to have to happen.

There was a mess on my pants and wheelchair seat cover that would need washing, and I forgot that I had underwear on. As soon as I transferred to the toilet, a show stopping abdominal spasm started. All I could do was try to relax my way through the spasm, knowing that I was not going to die! The forgotten underwear had to be cut off to minimize the mess. Yuck! Partial bath number two. Back to my wheelchair and to the laundry room with yet another load to wash!

After I unclogged the toilet with a plunger, I decided to surrender! My body wins today. I'll start over again tomorrow. Victorious body, please let me start the day dry!!! :-()

Simplicity vs.Complexity

"Our life is frittered away by detail. An honest man has hardly need to count more than his ten fingers, or in extreme cases he may add his ten toes, and lump the rest. Simplicity, simplicity, simplicity! I say, let your affairs be as two or three, and not a hundred or a thousand; instead of a million, count half a dozen, and keep your accounts on your thumbnail. In the midst of this chopping sea of civilized life, such are the clouds and storms and quicksands and thousand-and-one items, to be allowed for, that a man has to live, if he would not founder and go to the bottom, and not make his port at all, by dead reckoning, and he must be a great calculator indeed who succeeds. Simplify, simplify. Instead of three meals a day, if it be necessary eat but one; instead of a hundred dishes, but five; and reduce other things in proportion." - Henry David Thoreau, Walden, Where I Lived, And What I Lived For"

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I watched a movie tonight "New Girl In Town" with Renee Zellweger and Harry Connick, Jr. about a high powered Miami executive (Zellweger) who volunteers to manage the downsizing and modernization of a food processing plant in Minnesota and, in the process, falls in love with a city boy turned small town union representative (Connick, Jr.) and the community of citizens who leave an indelible mark on her "corporate" heart. The "new girl in town" finds herself in a culture that she does not understand or even knew existed and, in the process becomes the person she was destined to become.

As I reflected on why this movie was such a warm-hearted, loveable production, I realized that the screenwriter captured the essence of the human growth and acceptance process. Growth, meaning opening up of one's heart and seeing beyond what is on the outside, peering into the goodness of people who are different, and allowing personal change. Finally, acceptance of the changed person we have become.

This process is an all too familiar companion for those of us who have sustained a spinal cord injury. We have been suddenly thrust into a new habitat, not of our own choosing, where we have to learn a new language, adapt to a totally different body, arrive at a place of peace and acceptance of "what is", and, if we are very fortunate and successful on this journey, learn to embrace our changed self and find meaning in our new life. Where are you in this process? I'm becoming more used to my body changes, am trying to live in the moment, discover the meaningful endeavor that only I can fulfill and that will keep me motivated for the remainder of my life.

So, that's the challenge of being human with the added task of coming to grips with a "catastrophic injury". Thoreau's solution to a meaningful life was to simplify, simplify, simplify. Good advice for everyone. Where are you on the journey, this acceptance process? My advice is to ask others to be patient with you while you navigate this uncharted territory and learn to lean on their shoulders when you need support.

When Pigs Fly vs. Swine Flu

"And swine flew (flu)...avoid this activity..."

Herbert Spencer coined the term "survival of the fittest" after reading Charles Darwin's reference to "natural selection" in Origin of the Species in the mid 1800s. Darwin was refering to the adaptation a species undergoes to become "better adapted for immediate, local environment" rather than the common misinterpretation of survival of those "in the best physical shape".

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As I read about the possible swine flu pandemic in the public health document sent to all health care providers in this state, Charles Darwin's writings came to mind. I wondered "is a flu pandemic nature's way of ridding the human race of the weakest links"? For the first time, I feel like one of the weakest links! Darwin, however was concerned with the gradual adaptation of a species to it's environment, not the elimination of the young, frail, ill, and disabled members of our society as his concept of "natural selection".

This entomologic fine line assumed importance in my household as my youngest daughter returned home from her on-campus living quarters with a cough she could not shake. A few days later, she woke up with a temperature of 104 degrees, chiling, achy, pale, and worsening cough. She tested positive for the flu - probably H1N1 or more commonly referred to as the swine flu. She and I are both in high risk groups related to asthma and disability. Will this "eliminate" us?

Fortunately, we were able to seek help early and get started on antiviral treatment for her and preventative treatment for me. In the midst of this time period, the first fatality from swine flu in Alabama occured - an 11 year old boy who fell threw the healthcare cracks and lived in a town only 75 miles away. It's interesting how the presence of a chronic condition alters one's perspective. Perhaps it's the survival mentality that kicks in. Who knows. I only know how scary it feels to see my daughter so sick and be concerned about whether or not she might develop pneumonia, knowing that pneumonia and the flu are a deadly combination.

So, how are we handling our "quarantine"? Watchfully and including the extra precaution of nebulizer breathing treatments every six hours around the clock. She is still very sick and coughing, but her fever is staying down...that's a good sign to me of progress toward wellness. I'm doing fine with antiviral prophylaxis. Hopefully, we are stronger than our underlying conditions would seem to place us along the survival continuum. Not to mention that we are both very stubborn...

Conformity vs. Non-conformity

"There is no order in the world around us, we must adapt ourselves to the requirements of chaos instead." - Kurt Vonnegut

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Letting go of self-perceived expectations of others is a difficult task at hand. I find myself nowdays, more often than not, caught up in the unpredictability of performance and outcomes. I expect myself to be able to keep appointments and engagements and be on time. Perhaps, because I have always had difficulty in some arenas with time management, I judge myself harshly when, in spite of my best efforts, I am unable to be on time.

I am constantly surprised by the willingness of others to accept me just as I am and change arrangements to help me participate or complete scheduled appointments. I am actually harder on myself than others. I'm the one having trouble accepting that there are more potential obstacles now than before I was hurt and that when an issue arises, it takes me longer to deal with the mishap. Every day presents a new learning requirement, not optional, but mandatory for maintaining some semblance of "normalcy".

I am so concerned about no longer being able to "blend" and quietly slip into an event without being noticed. Another concern is one of not wanting to require or need special concessions at the expense of another person or group. An example is my most recent trip to Birmingham for tests and an appointment with the urologist at UAB in the Spain Rehabilitation outpatient clinic.

Several things went wrong as I prepared to leave for the trip to Birmingham, including another first. My nightstand fell over during the night, turning off the surge protector. My wheelchair did not get recharged! So, I had to pack up my charger and plan to recharge in each department at UAB during the day. UGH!

The last straw was when, as I was driving, I realized that my wheelchair was not locked down correctly and had to stop on the shoulder of the road, open my doors, and lower the ramp to reposition my wheelchair to lock it down appropriately. I called my case manager to let her know that I was having problems and would arrive late AGAIN!!! She jumped right in and , rather than respond as I expected with a suggestion to reschedule, altered the times of the tests I needed to have done so I could complete everything with one trip on that same day.

I know the inconvenience and hassle I create and am very self conscious about doing so. I was advised yesterday during a therapy session to work on learning to let it go and just do the best that I can. How can I accomplish this? Remember to look at the situation as though I was the case manager or book club host or myself with a client having the same physical challenges and consider what I would do for or say to me in that same situation.

This approach makes so much sense. Why is it so hard to have the same compassion for myself as I would have for someone else in the same situation? I have to keep telling myself, because I'm worth it and deserve the same care that I would deliver from the opposite position. It's the old "Golden Rule" thing..."do unto others as you would have them do unto you". Chaos in the guise of unpredictability is part of my life now. My challenge is to learn to accept and appreciate the grace of others and know that it is sincere.

[BTW - It was a good thing that I was able to complete the testing. There is a small, benign tumor (angiomyolipoma - AML - one centimeter in size) present in my right kidney that needs to be followed every six months by CT scan and/or ultrasound. Perhaps that dull discomfort I have been feeling in the right flank area of my back is not all spasms after all. My intuition that something is going on with my right kidney is on target. My body is speaking in a different way than before and I can hear the messages if I listen carefully.]