Living and laughing with a disability - cerebral palsy; ordinary life, extraordinary circumstances.

Friday, February 24, 2012

A little pot for my pain?

Yesterday I had just left the doctor's office and I was headed to our van.  No disabled spots had been available, so I parked on the far end of the lot to give me more backup room for my big rig.

I was walking down the long breezeway with my walker, doing my wild man walk.

A woman walked up and gave me her card.  Happens all the time, what can I say.

"Do you smoke?"

"Uh...no."  I didn't tell her about the Swisher Sweets I use to smoke with Dan up on the forest roads in our college days.

She gave me a card that says: "Medical Cannabis Community OMMP Resource Center".  It also has a website: www.nationalgreenfriends.com.

She proceeded to tell me the virtues of medical marijuana, that it would really help me, but that doctors would not tell me that.

I think medical marijuana is fine for people in pain.  Bad pain can destroy your disposition.  If a little pot helps, where's the harm.

Marijuana for me?  I wondered if she thought it would help with my wild man walk?  Even if I were at home with no where to go I would be afraid to use it because when I had to walk somewhere, like the bathroom, I might be too stoned to safely get there.

Plus, the woman has not seen what one beer does to me.

Anyway, it made me laugh.




Sunday, February 19, 2012

What is God's view of disability?

Ridiculous question, I know.  God loves everyone.  His forgiveness is available to all of us.  None of us is lesser or greater in His eyes.  The intellectual side of me knows all this.

Sometimes though, in the midst of struggle, in the darkness when I feel weak, I wonder "why am I disabled?  Why do I need to deal with this?"

The stories of the healings that Jesus performed in the Gospels have always inspired me and bothered me.  I am inspired by the hope that at anytime Jesus could speak a word and heal me.  I am bothered by the thought "Why doesn't he heal me?"

WHEELIE cATHOLIC: Scripture reflection on disability

Wheelie found this treasure of a reflection  on disability in Scripture.

I am not inferior because I am disabled.  I am not lacking because I am disabled.  Whether or not I am "whole" is not dependent on my disability being miraculously stripped away.

Rather, disability is  part of my identity, part of who I am.  No different than black, white, male or female...it's a key part of who I am.

I agree with Wheelie:

"I love the ending where it notes that the paralytic and his friends were never seeking healing, but a means of access to join the crowd and hear Jesus preach."

I need from God the same thing you need from God - His love, His grace, His mercy, His salvation.

I need from God what you need from God - no more, no less.


Saturday, February 18, 2012

The greatest birthday conspiracy of all

I turned 48 the other day. Dang old - you got that right!

Jethro Tull put it so well - "Too old to Rock 'n' Roll, Too young to die".

Middle age blues, maybe, but I am not depressed.  The good Lord puts us all here for a purpose...I just want to make sure that I do everything I can to fulfill that purpose.

You get to a certain age and the end starts to come in sight.  The question "Have I done all that I'm supposed to do" starts to gnaw at you.

Jodie and Eric took this big box of writings from my college days.  My dear mother-in-law took my writings and, with the help of Eric, sister-in-law Denise, and nephew Vance, made a huge two volume set of scrapbooks of my writings.

In the mid '80s I was a feature writer for The Daily Barometer, the student newspaper for Oregon State University.  I was also a copy editor.  My favorite job was that of columnist.

I only got $7 a column.  It came out weekly and it was called "Witticisms".  The money kept me supplied with Pepsi and cookies, but the real payoff was that I had a voice.  I learned that in order to make people laugh, you need to make them  feel.  Make them laugh, make them cry, make them mad.  We all have preconceived notions about everything.  The easiest way around that is through a person's heart.

As I thumb through the scrapbooks, I am amazed.  I wrote a lot of stuff!

"Kerr legend appears to be a little more of a myth."  The namesake of OSU's library was not a crook, but as a president of the early Oregon Agricultural College, he bent rules as far as he could without breaking them.  Anyway, this was my first story that made the front page of  The Barometer.  That  was a big deal in the day.

My columns. Wow!  I wrote a lot of sappy stuff!  I wrote a lot about how being weird, going against the norm, is okay. I wrote many columns about My Buddy (myself) with a disability dealing with every day challenges.  I will need to figure out how to share some of these columns with you.

There are also many issues of "In Pursuit", a newsletter I edited for the Campus Ambassadors group I was involved in.  We had writers, and a great cartoonist who was in high school.  We worked hard and produced a pretty slick newsletter with the goal of getting people thinking about God.

The greatest thing about these scrapbooks is that it has my juices flowing again.  I was a prolific writer in my college days - some of it good, some of it bad, but some of it great.

The great birthday conspiracy has me believing I can get back there.

Jethro Tull was wrong.  I am not too old for rock 'n roll...and I am way to young to die!


Friday, February 17, 2012

Walk...Walk...Walk...Crash!

I drove to downtown Portland today to have lunch with Sam.  We were roommates at Varsity House down in Corvallis 29 years ago.  We meet up downtown for lunch twice a year, around our birthdays, to catch up with each other with what is happening with our families, our jobs, and, my favorite...politics.

I usually pick Sam up and we drive down Barbur and pick a restaurant.

Today I  was early.  I kept driving around Sam's office at the Oregonian Building.   I don't like just driving around downtown, so I finally found a place to park about a block from where I meet Sam.

I pulled in behind a car and parked, and a car pulled behind me and parked.  With our massive van, I felt boxed in.  I got my walker out and walked down to meet Sam.  We walked about 3 or 4 blocks down to McDonald's.

Going all that way on a walker is a chore.  Much of the challenge was navigating the curb some are really steep and some are more like a mini step.

After lunch, after I said goodbye to Sam at his office, I was crossing Columbia at Broadway on the East side of the intersection.

I was watching the sign: Walk...Walk...Walk...Don't Walk.  My walker hit the curb cut.  My walker tipped forward and I landed on top of the walker.  My shin hit the bar pretty hard.  I  was so embarrassed!   I was hurting a bit, but I moved as fast as I could to get up.  I did not want anyone to stop to help me.  There was a line of cars going by.  I was thinking, "Please, nobody stop."

Nobody stopped.  I struggled and I got up.

There are good curb cuts downtown and bad ones.  But why so random?

I know, there is not enough money to fix all the curb cuts downtown.  But the City of Portland needs to acknowledge that real danger exists for the disabled downtown as long as that investment is not made.

A champion's heart is not always rewarded...

...but sometimes it is:

Special needs teen sinks varsity 3-pointer | kgw.com Portland

Tuesday, February 07, 2012

Cerebral palsy - birth complications or genetic?

Jodie and I both have cerebral palsy...in case you have not figured that one yet.

Jodie was a premie, weighing less than two pounds. I had always thought that my umbilical cord wrapped around my neck, cutting off oxygen to my brain. Mom told me last week that was not true, though there was reason to think that some oxygen had been cut to my brain at birth.

Cerebral palsy has always been thought to have been caused by some complication at birth, until now. Last week it was reported that most cases of cerebral palsy may have genetic causes, just like other developmental disabilities.

It is not hard to see why people would believe the complications at birth theory.  Birthing is such a complicated miraculous process - there  is always room to say this or that could have happened to cause cerebral palsy.

According to Medscape, the rate of cerebral palsy has remained the same in the last 40 years.  You would think that with the vast advances in medicine over that time,  that the rate of cerebral palsy would have gone down under the complications-at-birth theory.

When Jodie was pregnant in 1995, we checked with her doctor to see if we had an increased chance of having a baby with cerebral palsy.  Under the prevailing thought the cerebral palsy was not genetic, the doctor assured us that the answer was "no."

Today,  the answer to that question might be different.


Wednesday, February 01, 2012

Sad day for Peek users

You probably don't know what a Peek is, and therein lies the problem. Mine stopped working two days ago. I sent an email to customer care.

Peek axes first-gen emailer service in favor of cloud - SlashGear

A Peek is a pocket-sized gadget with a full keyboard that handles email and text. I used it mostly for texting my son, Eric, and to read hourly email summaries of my tweets.

I paid monthly for my service, though they offered lifetime service for around $250. I was tempted to buy the lifetime service, though I never really expected that it would last a true lifetime.

Dear Peek user,
Since we launched Peek in September 2008, we received amazing accolades for the product and the support of many, many Peeksters like you.
Since 2010 the business has been taking off in a direction that moved us away from these devices -- putting our cloud platform and software to work bringing smart apps to simple devices made by other mobile phone makers.
We have been winding down the US service since late 2010, and at the end of 2011 this email address was connected to one of a few Peek devices still operating in the US. At the end of January, this last batch of devices was decommissioned.
I'm sorry to report that this
As our Peek cloud powers increasing millions of devices around the world, we hope you'll find yourself using our apps for services like mail, chat, picture sharing, and cloud backup. Indeed, we were just honored by the global mobile industry association with a prestigious Best Technology award nomination. You can read more about this and where we are heading at http://peek.ly/blog
All the best,
Amol
Peekster-in-Chief



I am surprised that I was not warned of Peek service ending. I have a cellphone that I can text with, but with the telephone style keyboard I have a hard time texting with it. I have not decided whether to upgrade to a smartphone. I can't really do that until December when my current contract is up.
II wish that T-mobile, the carrier that handled the Peek email service, could offer us dumped Peek users. T-mobile is also my cellphone carrier, but I know if I went into the store and tried to explain this to them they would not have a clue what I was talking about.
Now Peek invites us to use their app for cloud services? I don't think so!