I live in Northern Delaware, not far from the point where Pennsylvania, Maryland and Delaware state borders meet.  Several days ago, the weather reports began mentioning that a possible blizzard was due for the weekend.  Well, its now Friday and the snow in my immediate area began about 6:30pm — During the height of the storm, we are expecting snow falling at the rate of 3″ per hour and winds of 25-35 miles per hour, with gusts exceeding 45 mph possible.  Accumulation here is likely to reach 24″.   And, with the high winds there will be substantial drifting.  That’s what I call a BLIZZARD!

As an example of the seriousness of this particular storm:  the Dover Air Force Base (located near the central part of our state) began yesterday, Thursday,  relocating its 18 C-5 Galaxy aircraft and 13 C-17 Globemaster III transports to bases where weather would not interfere with any necessary deployment — Definitely forward thinking!

Although storms such as this one place everyone at risk, those of us who depend on electrically-powered devices for life-support (suction, breathing) are particularly vulnerable in the event of a power outage.  Additionally, a loss of heating during Winter places those with limited-mobility at greater risk than the general population — how will the severely handicapped transfer from their usual lodging quarters to an accessible alternate?  During moderate weather conditions it is often difficult to change place for just a day –  A major storm might require the assistance of the National Guard to relocate people to safe places.

I certainly hope, and pray, that the electrical flow remains uninterrupted!

I have just spent more than 4hrs working on my own and with Norton Virus Tech’s, resolving issues with the above titled virus. If I find a reliable source of where I picked up this nasty thing I will post it here!

Besides the time, it cost me $140 for advanced support to get it cleared!  I was willing to pay a higher premium because it came with a 7-day guarantee.

UPDATE: February 4th

I am still unsure of where I contracted the virus.

If you run a search on the title of this posting you will produce more than 30 million results…  However, choose carefully because you may catch the virus from one of the sites!

There is a new game in town!  It seems that the hackers/virus creators have gotten much more creative in their revenue acquisition efforts — they will now lock your computer and require you to pay a fee to have it unlocked!

I completed the below poem on January 19, 1994. It is based on events which took place during a conference, “A Gathering of Artists”, which was held on the University of Delaware campus during the fall of 1993. The conference was focused on bringing together a broad-diversity of artists, whether visual, creative or performing — Basically, anyone you’d call an artist was invited to attend 2-days of workshops, forums and discussions. There was a modest fee of $25, as I recall.

As a founding-member and representative of AbleArts, a troupe of performing members with and without handicaps, I was very excited to exchange information & knowledge with other local artists. And, although I had confronted narrow-minded people throughout my life, I was completely caught off-guard by the words, and attitude, of Ms. E. Jean Lanyon during the conference.

Following the conference, I shared my upset with other members of AbleArts — Some of them suggested I should write a letter-to-the-Editor, which I never did. However, in January we had a snow storm (storms seem to kick me into action) which left me stranded in my apartment for several days. It was during my snow-bound state that I created the poem:
_____________________________________________________________________

It was at “A Gathering of Artists” that we first met.
As she proclaimed herself “Delaware’s Poet Laureate”.

In both large and small groups that day
She took the opportunity to say what she had to say.

I reckoned that one who exhibited such power
Could be a valuable ally at some needful hour.

So, I told her I was a closeted-poet, kind of.
And, that others, like myself, created poetry for love

That we must recite in our own homes, while at night
Able-bodied poets gather in non-wheelchair-accessible reading sites.

(Ten years now, budding poets have read at O’Friels;
Upstairs, 2nd floor — Not in chairs with 4-wheels!)

Vehemently, she protested thus (Delaware’s Poet Laureate),
“Reading space is scarce.  We’ve got to take what we get”.

“We can’t possibly be expected to accommodate all!
There are so many constituencies; yours is to small.”

“I don’t think you heard me, or understood”, I objected.
“My request is consideration when future sites are selected.”

“If mobility-impaired”, I asked her, “how would you participate?
Unable to climb stairs, shall someone carry the ‘Poet Laureate’?”

“I’m not important.  It doesn’t matter about me.
The work must continue, it’s got to be!”

“I wont argue”, she said.  And, then turned away.
“It’s not possible”, I thought, “what I’d just heard her say.

How could a poet, who should be sensitive and feeling,
Defend anyone’s exclusion?”  My mind was just reeling.

In stunned disbelief, transfixed where I sat,
I viewed the departure of Delaware’s Great Laureate.
___________________________________________________________________

Former Poet Laureate (I have subsequently learned that her official title ended in 1981) E. Jean Lanyon and I almost met on the campus of Delaware State College several years after our U of D confrontation — Del State was scheduled to hold a day of poetry near the end of the Spring Semester and we had both been invited.  In fact, Lanyon was to be the keynote speaker. Perhaps fortunate for her, the event was canceled before it took place and I got the opportunity to read in front of her!

I know the poem is a much greater retribution than a letter would have been. Even though I haven’t read A Gathering of Artists in public since my 2004 hospitalization, I have given more than 35 public-readings during my appearances with AbleArts; and at least 10 public-readings without AbleArts! I can’t begin to count the many other times I’ve read for friends and family.

Now, I place my poetic work into cyberspace — to be read by hundreds of thousands of people… How absolutely amazing! 8-) (more…)

We had a very pleasant break in our cold and gloomy weather recently…  My wife had asked me to check on the weather as she was preparing to go to a Doctor’s appointment.  I hadn’t been paying attention to the news or weather and when I saw the temp was 50, I immediately looked through the window coverings and could see the Sun shining brightly!

Needless to say, I informed her the humidity was 74% and the temperature was 50 degrees so she could dress accordingly — which she did after removing her pull-over sweater.

Being the Sun Loving Southern California Guy that I am (my sister’s favorite nickname for me is “lizard man”), I followed my wife when she went outside and I found a Sunny place — Protected from the little breezes that were prowling near our apartment building, wearing only jeans and a t-shirt I managed to grab about 20-30 minutes of Sun (for recharging my psychic-batteries) before it faded…  I’d like more of those opportunities this Winter!  8-)

In late February 2004, I entered the hospital emergency room with a severe abdominal pain.  After sitting in the waiting room for almost 2 hours, I grabbed a male in scrubs and told him I was in severe pain — virtually demanding something for the pain!  He lead my wife and I to a different area and said he would be right back.

Soon, I was told by a nurse to “get up on the gurney.”  And, when I told her I couldn’t do that, she adamantly repeated her instruction.   My wife explained that I was physically unable to stand, or climb onto the gurney.  Next thing I knew, someone gave me a shot of Dilaudid and I lost consciousness soon after — Following x-rays, it was learned that I had a growth around my appendix and intestines.  Surgery removed the non-malignant growth and 8 inches of bowel.  During recovery, I rapidly developed MRSA Pneumonia (one of those nasty drug-resistant staph infections that you get in a hospital and frequently kill.)

What Happened Next?

  • 6 weeks in ICU (an Intensive Care Unit, which I have virtually no memory of.)
  • Medical ventilator (a breathing machine to assist my severely impaired lungs.)
  • Tracheotomy (installation of a plastic tube through the skin into my airway, just below my voice box, to connect me to the ventilator)
  • A PEG tube – percutaneous endoscopic gastrostomy tube (feeding tube stuck through the abdominal wall into my stomach and attached to a bag of liquid “food“.)
  • plenty of super-duty antibiotics (along with prayers from my family and friends.)

After I got out of ICU, and off whatever drugs they had used to keep me in a semi-coma,  I slowly became aware of what was happening around me:

  • I could not speak — the trach had an inflatable bulb which blocked air from passing over my vocal cords while the ventilator was forcing air into my lungs;
  • I was to weak to write an intelligible note — which meant the only communication methods available to me were attempting to finger spell or use hand/body/facial gestures;
  • A feeding tube was sticking out of my belly — and I was not allowed anything by mouth;
  • I had received my first ever pressure sore (on my left buttock near my tail bone) while unconscious in ICU — the sore caused me a great deal of pain whenever I was rolled onto it (my position was supposed to be changed every 2 hours);
  • I was confined to my bed for what lasted more than 2 months — I really didn’t have the energy, desire or breath to leave the bed anyway;
  • I remained hospitalized for 3 1/2 months!

Even after I was finally gotten out of bed, I still needed to be attached to the ventilator — my lungs had been damaged and I gasped for breath anytime the hoses became disconnected.  In time, I was able to remain out of bed for an hour or two — eventually I could do it without the vent.  But, I still needed the mechanical ventilator when laying down!  And, I was taught how to speak by capping the vent tube with a finger so that the air in my lungs could be forced over my vocal cords.

One consequence of my extended hospital stay is a significant decline in strength and range-of-motion.  And, Muscular Dystrophy doesn’t permit much in the way of recovery of strength. However, the staff did manage to give me a few days of PT/OT (physical and occupational therapy) shortly before my discharge.  And, I was also permitted some jello (after a video x-ray to evaluate my performance) and pudding during my last week, or so, of incarceration –  I had to re-learn how to swallow without choking, before I could go home!

I was very glad to finally return to my dear wife.  But, I hated that she now had to do so much for me — a great deal more than was needed prior to my surgery and pneumonia.  Initially, there were many times each night she had to get up and suction the mucus from my trach tube — Whenever the ventilator alarm signaled that I was having difficulty breathing.  The need to suction while I’m in bed is a rare event today, fortunately.

For at least the 1st month I was home, my wife had to find someone to stay with me whenever she needed to leave our apartment (to go to the drugstore or the grocery store).  I was very dependent and could not be left alone — I needed a babysitter, and they had to be willing to be trained in the technique of suctioning the trach tube!

Eventually,  I regained most of my pre-surgery independence

I have never regained the strength I had before the surgery:  a hydraulic patient-lift must be used by my wife to remove me from my hospital bed each day — and to return me to the bed at night.  I’m unable to change my positioning in bed or wheelchair — my wife must do that for me.

I can do the suctioning myself, without assistance, as long as I’m in my wheelchair.  The feeding tube was never used at home and was removed about 4 weeks after I came home.  But, I still have the trach and I’m attached to the vent whenever I lay down — lungs are permanently weakened.  I can speak, with some difficulty — loudly enough to be heard, but not in noisy environments.

Items I use from the refrigerator are positioned for my easy reach — provided they are not to heavy or difficult to handle.  We have a separate upright freezer with microwaveable items within my reach, in case my wife is not around when I get hungry.  And, as a final coverage for my short-term food/water needs — I have saltines and a jar of peanut butter always on the table and four 12 ounce bottles of water on the refrigerator door!

There have been lots of times when people would say the above title applies to ME! I can’t deny it — there are times when I AM a pain! No, that isn’t what I had in mind here. The title refers to the type of pain I am experiencing every day –  have been for more than just a year or two.

When I started using a wheelchair, about age 10, I had muscle-tone in my backside and thighs — The muscles were weak, but not unusable. I didn’t need any other cushion or padding during the 25 years or so that I rode around in manual wheelchairs.

However, when I got my first power-chair it came with a very comfortable foam cushion — it was a wonderful change for my shoulders, and my bottom, when I became an electrically-powered-wheelchair user.  You see, all those years sitting and pushing, dangling my legs, had taken quite a toll on my shoulders and buttocks.

Over the course of my life, I became aware that I had great sensitivity and feeling throughout my body — like in the story, “Princess & the Pea!” So much so,  I had begun brushing my bed before I got on the sheet each night — there always seemed to be grit or sand that I could feel against my skin unless I brushed it off the sheet. I guess I got over that — or the new places where I was living didn’t have as much gritty stuff to end up in my bed!  At some point, however, I did quit the nightly sheet-sweeping!

In February 2004, I had emergency abdominal surgery, due to a growth around my appendix and intestines — I remained hospitalized for 3 1/2 months.  (I plan to detail that experience in my next post.)   I was at 234 pounds shortly before discharge from the hospital.

Following my return home, I had some difficulty with my intestines which I addressed by cutting  my food intake.  Then, in the spring of 2007, I entered the hospital (not related to 2004) for 4 days — I weighed 160 pounds at that time. (Hospitals are the only places I’ve found to get weighed since I can’t stand.)  I had lost around 70 pounds in about 3 years — between hospitalizations.  Since my teen years, I had been called a hearty eater.  I was still eating pretty much what I wanted, but I just didn’t want as much as my old former-self did.

So, now my body doesn’t have the fat to provide the cushion between bone and muscle/skin — I hadn’t considered my weight loss might bring about a pain problem.  Perhaps it didn’t…  But, now I’m trying to eat more often.  The one thing I do know, however — my sense of feeling is a burden like never before.

I’ve recently learned of a facility nearby which can perform “pressure mapping” — I could sure use some of this 21st-century technology to help with the pain of  sitting or laying-down. Maybe I can find a new hi-tech, customized, drug-free, solution!

During my first 62 years, I’ve had plenty of adversity and challenges…  one of them being an expected life-span of less than 25 years.  Most of the guys I knew with Muscular Dystrophy had died (5) earlier than that.

Seems I have defied the medical predictions — I’m still here and kicking! 8-)

I hope you visit again.  You can sign-up for email or RSS notification of all new postings, if you think you might like to read future episodes of my blog.

And, please, leave a comment (the button can be found at the top of this posting) — I welcome each one.

I believe I first became aware of the song Talking Wheelchair Blues during this past summer — probably while running a search on wheelchairs and cushions.  I remember playing a link I found at the time — I seem to recall the singer was a woman, but I haven’t found her since.  I didn’t do anything else about it at the time, except I told my wife about the song.

Recently, a friend lost her father, following a lengthy illness.  My wife has been requesting my help in finding humorous, light-hearted, songs to play and leave as messages on the friend’s cellphone.  So, as I was digging around on Rhapsody, my wife remembered the Wheelchair song and asked me if I could find it.  Not only did I find the song on Rhapsody, I searched Google and found the lyrics, which I’m posting below.

I feel a close connection to events in this song — I recall times, from my personal experiences, when I had to use service entrances or service doors (as described in the song) in order to gain access to a building.  Even today, more than 15 years after the passage of the Americans with Disabilities Act (ADA), if you are in a wheelchair you may still have to travel through the kitchen, housekeeping or delivery areas to get into/out-of a specific building. I’ve also had many parents and waiters (waitresses also) react to me like those in the song.

Talking Wheelchair Blues by Fred Small — from his album, “The Heart Of The Appaloosa”:

I went for a jog in the city air
I met a woman in a wheelchair
I said “I’m sorry to see you’re handicapped.”
She says “What makes you think a thing like that?”

And she looks at me real steady
And she says, “You want to drag?”

So she starts to roll and I start to run
And she beat the pants off my aching buns
You know going uphill I’d hit my stride
But coming down she’d sail on by!

When I finally caught up with her
She says “Not bad for somebody able-bodied.
You know, with adequate care and supervision
You could be taught simple tasks.
So how about something to eat?”

I said, “that’d suit me fine,
We’re near a favorite place of mine.”
So we mosied on over there,
But the only way in was up a flight of stairs.

“Gee, I never noticed that,” says I.
“No problem,” the maitre d’ replies;
“There’s a service elevator around the back.”

So we made it upstairs on the elevator
With the garbage, flies, and last week’s potatoes.
I said “I’d like a table for my friend and me.”
He says “I’ll try to find one out of the way.”

Then he whispers, “Uh, is she gonna be sick,
I mean, pee on the floor or throw some kind of fit?”
I said “No, I don’t think so,
I think she once had polio.

But that was twenty years ago.
You see, the fact of the matter is,
If the truth be told,
She can’t walk.”

So he points to a table, she wheels her chair.
Some people look down and others stare.
And a mother grabs her little girl,
Says “Keep away, honey, that woman’s ill.”

We felt right welcome.

Then a fella walks up and starts to babble
About the devil and the holy bible;
Says “Woman, though marked with flesh’s sin –
Pray to Jesus, you’ll walk again!”

Then the waiter says “What can I get for you?”
I said “I’ll have your best imported brew.”
And he says “What about her?”
I say “Who?” He says “Her.”

“Oh, you mean my friend here.”
He says “Yeah.” I say “What about her?”
“Well, what does she want?”
“Well, why don’t you ask her?”
Then he apologizes.
Says he “never waited on a cripple before.”

We immediately nominated him for Secretary of the Interior.

Well, she talked to the manager when we were through.
She says “There’re some things you could do
To make it easier for folks in wheelchairs.”
He says “Oh, it’s not necessary.
Handicapped never come here anyway!”

Well, I said “goodnight” to my new-found friend.
I said, “I’m beginning to understand
A little bit of how it feels
To roll through life on a set of wheels.”

She says “Don’t feel sorry, don’t feel sad,
I take the good along with the bad.
I was arrested once at a protest demo
And the police had to let me go.

See, we were protesting the fact
That public buildings weren’t wheelchair accessible.
Turned out the jail was the same way.

Anyway, I look at it this way –
In fifty years you’ll be in worse shape than I am now.
See, we’re all the same, this human race.
Some of us are called disabled. And the rest–
Well, the rest of you are just temporarily able-bodied!”

Rhapsody music service offers a trial program which does not require any sign-up.  If you’d like to hear Fred’s song, clicking the link below should give you that opportunity!

Enjoy  8-)

Talking Wheelchair Blues

It’s Christmas Eve on the east coast of the United States.  Most people, with jobs, have finished working for the day and will be off tomorrow because of the Christmas Holiday.  However, there are countless numbers of people who will be working tonight and/or tomorrow, as well as other holidays, performing tasks we usually take for granted until some calamity occurs.

I can’t begin to list all the various jobs we Americans expect to be performed during holidays, but here are a few: security & law enforcement officers and support personnel; toll-takers & snow removal crews and support personnel for bridges/highways; airline flight crews and support personnel; bus/taxi/railway/subway operations and support personnel; electricity/gasoline/natural gas/propane gas/water/sewer system operations and support personnel; emergency medical/hospital/nursing home operations and support personnel;  military personnel in the various branches, as well as the many civilians involved in the day-to-day support of the military.

(If your job isn’t listed above, please feel free to leave a note in the comment area at the top of this posting and tell us what you do.  I think we all need reminders, from time to time, of the many people working while we are celebrating!)

As we prepare to end this decade and begin the next one, it would be a good time to reflect on all the millions of people who work so hard to give our country, the United States of America, one of the highest standards of living anywhere on this planet.  8-)

We are experiencing a significant snow storm this weekend.  Our Governor has issued a “State of Emergency” for the 2 northern counties of Delaware so far.  Total snow fall around Newark is predicted to reach 18-24 inches.

Our current weather reminded me of an earlier time — During December 1986 we also had quite a lot of snow.  In those days, the majority of answering machines used a cassette tape for both the outgoing message and to store incoming messages.  I used to enjoy putting humorous outgoing messages on my machine.

I wrote the following poem and read it as my outgoing message in 1986 — I had to buy a special 30-second tape, because the poem was to long for the standard 15-second tape.  Every winter for several years I put the message on my machine — my mother didn’t like it, though, ’cause she lived in Maryland and had to pay long-distance charges listening to the message.

With Winter’s icy grip firmly ’round my throat,
And, lacking a 40 below zero survival-type coat,

I’ve gone to seek solace, ‘neath ‘lectric blanket, down comforter, and sheet;
In pajamas, long-socks, with hot-water bottle replete.

I’ll dream of fishing in a warm summer breeze,
It helps me escape this dreadful hard-freeze.

Now’s your chance.  Leave a message, and make it heart-felt.
I’ll return the favor, when the ice starts to melt!

Stay Warm  8-)

Many people have been struggling financially during the economic decline of the past several years.  Additionally, I’ve read how during the Thanksgiving and Christmas holidays it can often be a very difficult emotional time for people:  they remember a special person (or group of people) whom they used to be involved with at various gatherings and celebrations; but now the special person(s) in no longer available  (death, divorce, moved-away, etc.)   As a result,  depression and the sense of loss become very heavy.  For some, unfortunately, easing the pain and misery seems only possible by ending their life!

I’m sharing “The Wooden Bowl” as a way to encourage you to think of someone you know who might need some help or kind words — something which you can give of yourself that wont cost more than a little time, and maybe some gasoline!  Perhaps, something as simple as a phone-call to a friend or family member you haven’t spoken with for awhile can BRIGHTEN their day, and LIGHTEN their mood!

The story came to me many months ago (I have no idea how long ago) in one of those emails encouraging people to forward it!  You’ve probably had lots of those kinda things forwarded to you in the past — I know I have!  But, this one touched me a great deal.  So, I kept it, and made a few  editing changes which suited me — Below is the result.

——————————–
A frail old man went to live with his son, daughter-in-law, and four-year-old grandson;  his eyesight was blurred and his steps faltered.

The family ate together at the same table.  But, the elderly grandfather’s shaky hands and failing sight made eating difficult for him: Peas rolled off his spoon, onto the floor; When he grasped the glass, milk spilled onto the tablecloth.

The son and daughter-in-law became irritated with the mess — ‘We must do something about father,’ said the son. ‘I’ve had enough of his spilled milk, noisy eating and food on the floor!’

So, the husband and wife set a small table in the corner — There, Grandfather ate alone while the rest of the family enjoyed dinner together.  And, since Grandfather had broken a dish or two, his food was served in a wooden bowl.  Still, the only words the couple had for him were sharp admonitions when he dropped a fork or spilled food. The four-year-old watched it all in silence.

When the family glanced in Grandfather’s direction he sometimes had a tear in his eye, as he sat alone.

One evening, before the meal was served, the father noticed his son playing with some wood-scraps on the floor. He asked the child sweetly, ‘What are you making?’  Just as sweetly, the boy responded, ‘Oh, I am making a little bowl for you and Mama to eat your food in when I grow up.’  The four-year-old smiled and went back to work.

The child’s words so struck the parents that they were speechless.  Then, tears started to stream down their cheeks.  Though no word was spoken between them, they both knew what must be done. That evening, the husband took Grandfather’s hand and gently led him back to the family table. For the remainder of his days, GranPa ate every meal with the family.  And, for some reason, neither husband nor wife seemed to care any longer when a fork was dropped, milk was spilled or the tablecloth became soiled.

Things I’ve learned:

  • No matter what happens or how bad it seems today, life does go on — very soon we will likely forget the cares we had just a short time ago
  • You can tell a lot about a person by the way he/she handles four things: a rainy day, the elderly, lost luggage, and tangled Christmas Tree lights
  • Making a ‘living’ is not the same thing as making a ‘life’
  • Life sometimes gives you a second chance
  • You shouldn’t go through life with a catcher’s mitt on both hands — You need to be able to throw something back occasionally
  • If you pursue happiness it will elude you — But, if you focus on your family, your friends, the needs of others, and doing the very best you can, happiness will find you
  • Whenever I decide something with an open heart I usually make the right decision
  • Even when I have pains I don’t have to be one
  • Every day you should reach out and touch someone:  People love that human touch — holding hands; a warm hug; or just a friendly pat on the back

And, the most important thing I’ve learned (which I oft times forget) – I still have a lot to learn!

Happy Holidays to you ALL! And, to your Loved Ones also!

May the year 2010 bring you  – Health and Happiness, Peace and Tranquility, Joy and Abundance! 8-)

Please leave a comment!  (You can find the comment button at the top of this posting.)  I look forward to reading your thoughts and feelings.

Next Page »