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

Monday, April 14, 2014

It's not the kite...

I was not familiar with Pharrell until I saw him on tv a couple times recently. I'm not normally dialed into his style of hip hop. I'm an old fart. Classic rock, old country...70's and 80's.

Pharrell's song "Happy" is seriously addictive. As I write this, I am dialed into 24hoursofhappy.

The words of wisdom that Pharrell shared on CBS Sunday Morning struck a cord in me that needed striking.

Success..."making it"...fulfillment. If you have "made it", so my words might not resonate with you.

Me...I always have had a feeling that I need to obtain a level of success that I never quite reach. There is something great I need to do, but I don't know if I will ever do it...or even figure out what it is.

Ok, I am a "type A" wannabe trapped in a "type B" body...probably the worst of my disabilities.

Reporter Anthony Mason tries to get Pharrell to focus on his success. Now that he has "made it", will he repeat his success? He does not see it that way. Rather, Pharrell focuses on being grateful for every single person who has impacted his life to bring him to this success. He sees that the "stars have aligned" for his current success, and that does not happen for everyone, and it may never happen again for him.

Pharrell said in the interview, "It's not all you. It can't be all you. Just like you need air to fly a kite, it's not the kite. It's the air."

Thinking about my own life. Seeking success, trying to make the stars align, is like chasing a mirage. I'll never get there because it's not a destination.

Realizing the people in my life...Jodie, Eric, my family and friends, my teachers and my mentors...it's all the air.

We are all "kites" for ourselves and part of the "air" for those around us. Kites do not soar without air. Our focus should be set on being the best air we can be for those around us.
Happiness is a journey, not a destination.

It's not the kite.

Monday, April 07, 2014


I took a nasty fall in my bedroom, ramming my chest in the corner of the hope chest.  I think I bruised some ribs.  My doctor felt all around...nothing appeared broken...but I had a lot of pain for several weeks.

Jodie told the doctor I have been falling more.  Yes, I had to agree.  My doctor referred me to a specialist who knows more about figuring out such things.  He referred me to physical therapy.

My walking gait has always been on the wild side.  I had braces as a kid, until a doctor in California told my parents that my braces were not correcting anything, that they were really more of a hindrance.

When I finished college and was still living in Corvallis, I tried braces again - AFO's (ankle foot orthotic).  My doctor and therapist were both very concerned with my ankle movement, telling me that if I ever rolled my ankle that my recovery could take a long time, and my ability to walk could  be in jeopardy.  At the time I was learning how to drive, and the AFO's seemed to be getting in the way.

I went and saw the therapist last December.  She pretty much freaked out as she watched the motions of my feet and legs as I walk.  AFO's for sure.  Considering that I am getting older, and that I want to stay as mobile as I can for as long as I can, I agreed.

Life is different for me now with the AFO's.   Instead of slipping on my shoes and tying them,  I put on the plastic ankle piece, then I slide my foot into a plastic piece that goes from my toes up to the top of my calf.  There is a velcro strap that I need to thread through  a metal thing.  I takes me time.  Then I shove my braced foot into my size 11, 4E, New Balance 555's.  Fifteen to 20 minutes, depending how my involuntary motions are doing.

I do walk better now, but it is harder for me to free walk.  I use my walker more.  It seems like using a walker is portrayed negatively in our society, like giving in to your weakness.  I am starting to view my walker more like a pair of glasses, a tool that I need to function.

Standing up from a sitting position is harder because I am using different muscles.  I feel more unstable walking around the van to help Jodie up and down the lift.  I am using my walker more to help me.

Everything takes more time and energy.  Some things Jodie is helping me do, like taking recycles out to the garage.  She also lets me use her powerchair as a walker, with her driving it real slow.  She likes that she can do more for me.  I try to see it that way, but I feel bad that some of my abilities are slipping away.


Saturday, March 22, 2014

My glasses broke...Can I see your insurance card?

Jodie was washing my eyeglasses yesterday morning before work.  As she was drying them, they snapped into two pieces.  No biggy...it would have happened to me just as easy.

These were bifocals that broke.  I found some old single lens glasses that I dug out so that I can see to drive.
Today I took my broken glasses to my eye doctor's shop.  We like that the shop has Saturday hours.   I've been going to him for 15 years or so.  Jodie has gone to him since she was in high school.  Dr. Clay has done a lot for her very unique sight issues.

Jodie stayed in the van...one less time for me to run out lift.  I got my walker out.  Jodie handed me the baggy with my broken glasses.

I walked into the shop.  A lady from behind the reception desk helped me with the second door.

She said, "Is someone coming in with you?"

It surprised me and irritated me.  I thought, "Does someone need to come in with me?"...but I said, "No."

I gave her the baggy with my broken glasses and I asked "Can you fix these?"

Her answer was "No."  Not a huge surprise.  She did have a card for a place that could weld them together.

I am overdue an eye exam and new set of glasses with my insurance.  I asked for an appointment wit Dr. Clay.

Then, I got the look..."your disabled, so you must be on medicare..."

She asked, "Can I see your insurance card?"

She took it to the computer and ran my card.  She found out "Wow...he really does have insurance...and he is a customer here!"

She asked me if was an emergency.  Kind of evident I thought, but, easy going guy that I am, I said, "Not really."

So, a week from Monday I have an eye appointment with Dr. Clay.  I wonder if I should take Jodie with me in case I need to fill out paperwork?

Being disabled sucks sometimes.  No, I didn't just say that.

Honestly, I am well adjusted...;)

Monday, February 17, 2014

One thing I can do...

Twenty five years ago, a group of friends gathered with me at Plush Pippin in Beaverton.  A pie shop seemed a fitting place to celebrate my 25th birthday.

Please don't do the math.

Life really was not going my way at the time.  College was a couple years behind me.  I worked six months as an assistant editor with World Christian magazine. Due to a lack of funds, both my own and the magazine's, I had to quit and move home.

No job, no girlfriend...I had a lot of reasons to be bummed, but I wasn't.  I had faith in God and I had my friends.

That night at the pie shop I asked my friends to give my their definition of "reality".  Why?   The most honest answer is...I  don't know.  Maybe I was looking at life, where I had been, where I was, where I was going.   I have always lived within the narrative that runs in my head.  Maybe I felt the need to be pulled out of that narrative for a moment.

Troy S. had the best answer...okay, it's the only one I remember.  "Reality is when what you think you know equals what you know."

In the months that followed, I began volunteering for the Department of Human Services in Hillsboro, working on a Lotus 123 spreadsheet to track volunteer hours.   Also, I met up with Jodie, a classmate from where I spent my early elementary school days.  We attended Holladay Center in Portland, a school for the disabled.  We had both been mainstreamed in separate directions.  When I saw her leading a support group for the disabled at New Hope Community Church, it was our first reunion in 16 years.

A year after my "reality" birthday party. I was working as an office specialist with the Children's Services Division, and I was engaged to be married.

Twenty four years later...again, no math please...I look at where the lines of my life have fallen.  I can say that I have been truly blessed.

Jodie and I have been married 23 years.  We are both working for DHS Child Welfare.  Eric, our miracle child, was born 18 years ago.  That is a book that we have yet to write!

The "reality" question is still a good one.  I still get caught listening to the narrative that runs inside my head.  I have not done enough in my life, I haven't gone far enough in my career, I have not written that book yet, am I a good husband...am I a good day...all this stuff goes through my head as I reach that more mature age.

I'm convinced that some of us never quite grow up, and that I am one of those.

There has to be a new question for this stage of life.  Just what Is that question?

Hmm...let me think...

Something simple that will not burden me.  Something profound that will allow me to soar.

What is one thing that I can do today to make life better for someone else?

Yeah...I like that.

Thursday, January 16, 2014

I don't do paperwork very well...

Being disabled is a pain in the but sometimes, as I'm sure you can imagine.

Today I had an appointment to have my feet and lower legs molded for something I will be blogging about in the near future.  Cliff hanger!  ;)

I pulled into the parking lot, but the lines for the disabled parking were faded.  I could not see where to park.  I saw a disabled spot on the street by the door, so I took that spot.

I got my walker out of the van, and walked to the front door, just a few steps away.  I pulled the door open and pushed my walker inside the door.

A receptionist saw me and said "You must be Troy."  She seated me and handed me a clipboard with a bunch of papers to fill out.  I told her "I don't do paperwork well."  She laughed and said "None of us do!"

I hate asking for help.  I probably should have gone beyond "I don't do paperwork well," but the lady was already back in the other room before I could get another word.

Paper forms and pen.  My kryptonite...totally!

I can do wonderful things on the computer.  I drive a big ol' van.  I hold down a full-time job.  I use to hand write when I was in school.  I have a signature stamp at work and I have Google Docs on my smartphone.  I rarely hand write anything anymore.

Faced with forms to complete and a pen...I tried

Last name...first name...social security number...phone..group id...emergency contact...on and on.

I tried to stay within the allotted spaces, but I couldn't.  I tried my best...but it was not very good.

The receptionist came back.  Older lady, classic receptionist type.
She saw the form I was working on.

A look of horror came across her face.  I could read he mind "Oh my God, he really can't write!"

Rather than offering to help me complete the form, she asked for my drivers license so she could make a copy of it, then circled a couple spots for me to sign.

I felt stupid and embarrassed...all those things.

When I told Jodie what had happened, she was mad at herself for not coming with me.  We have a symbiotic relationship.  I drive her to her appointments...she comes with me to my first appointments to do all the paperwork.

I don't know why, but we weren't expecting paperwork at this appointment.  Everything about me is on the computer.

Sometimes it would be nice to not be disabled.


Thursday, January 02, 2014

Thank you Abbey Curran

Yes, Jodie and I watch the show "Dance Moms" with the tough as nails dance instructor Abby Lee Miller, driving little girls to tears and dance moms to cat fights.

There is another Abbey - Abbey Curran.  Rather than being a dance instructor, she is a beauty queen...Miss Iowa 2008.  She is unique in the world of pageants because she has cerebral palsy.

Rather than yelling at little girls in an attempt to draw out their best talents, Abbey Curran hosts a special kind of beauty pageant for kids with special needs.  It is called the 'Miss you can do it' pageant.

The purpose of this pageant is less about competition and more about showing young girls with various disabilities and special needs that they are beautiful, that they matter, and that they can dream dreams that can come true just like any other girl.

A movie was made of the pageant, appropriately titled "Miss You Can Do It."  Watch it yourself to be inspired by kids who are facing tough odds, their families who love and support them,  and the love and grace that Abbey and the other pageant officials show toward the kids to give them a positive experience to remember.

This is a great movie to show your kids, especially if they need to be reminded of how good they have it and the challenges other kids face.

Yes, Jodie and I had tears as we watched this movie.  A different kind of beauty that this world is normally way to blind to see.

Thank you Abbey Curran.

Monday, December 30, 2013

Bill and I

I wrote about going to Bill Porter's funeral yesterday.  I didn't want to clutter my tribute to Bill yesterday, but what I went through getting from my van into the church made me think "what would Bill do?"

I found the disabled parking spaces at St. Henry's Catholic church in Gresham.  I pulled my walker out of the van.  There were some doors near where I parked, but the looked like back doors, private entrances.  They did not look like entrances to the church.

I walked around to the front of the church.  It was a good distance for me, but if Bill could walk ten miles a day, I could handle this.  There might be a handicapped entrance at the back of the church that just was not obvious to me.

When I made it to the front of the church, I found three stairs to go up on the sidewalk leading to the church entrance.  I realized that I could walk a greater distance to avoid the stairs, but I was getting tired, and the service was about to begin.

I was just going to fold my walker and drag it up the stairs.  A bit crazy, I know, but like Bill and most other disabled people out there...you spend a lot of your life figuring out ways to do things that nobody else thinks you can do.

Just as I was about to do my crazy deed, a very kind woman at the top of the steps saw what I was about to do and she offered to help.  I thought about being bullheaded and telling the woman, "No thanks.  I can do this."

Instead, I figured the woman was there to honor Bill, a guy with disabilities.  Helping me, a guy with disabilities, was probably something she would like to do.   She carried my walker up the stairs.  I used the handrail to get myself up the stairs.  I thanked the lady as we made our way into the church.  She held the door for me.

During the service, it was mentioned how Bill did not like to ask for help.  Something we had in common.

Shelly Brady, whose family adopted Bill after his mother passed, thanked the many people for the help they gave Bill...cleaning his house, getting him to appointments, etc...

It made me smile.   No wanting to ask for help, but knowing when to accept it.

Bill and I had in common.