Sunday, October 31, 2010


Sunday, October 31, 2010, 9:04 am

 Adrienne and I decided to make a trip to Norwalk, my hometown.  We considered this  to be a "dry run" for our upcoming trip to New Orleans in November.  This was my first overnight trip since I got sick.  In fact, the last trip I took was to Norwalk, in March 2010, was right before my first hospitalization, and before I was labeled a fall risk. 

 Adrienne and I drove up to Norwalk, usually a 4 plus hour drive, on Friday afternoon.  Due the the vagaries of  Columbus traffic,  the trip took over seven hours. My hips were sore, but other than that, I was fine.  I think Adrienne, who had to do 100% of the driving, felt worse than I did.

I spent the first 18 years of my life in Norwalk and now, when I came back to it, it has become a mythological place.  Usually, I roam the the familiar landscapes, searching for something.  Driving around the streets with Adrienne, I realized that I don't know what I am looking for; is it something that I lost, or is it something that I never had, but hope to find?  

Anyway, despite the weirdness of being in Norwalk again, the visit was a success.  I survived the car trip, staying in a motel and had a great time with my family!

We visited Mom in her room at the nursing home where she has lived since Dad died in 2007.  She was in a happy mood, but not very talkative.  She looked good and had a big smile on her face.  We joked around and she laughed with us.  

Next we went to Jim and Joanne's. I was feeling pretty tired and ended up taking a nap on their couch.     I am still easily fatigued.  It was embarrassing to have this happen in front of my family.  When I woke up, I was treated to a visit  with Jennifer and Jessica, their daughters, and Jennifer's children, Clark, age 2 and Gwen, 3 months.  

Then we went to visit my sister Roni and her husband, Dick.  Due to complications from knee replacement surgery, Roni has spent the last two years in great discomfort.  She is just now beginning to move freely outside the house.  It was very exciting to see her walking pain free and without a walker.

We returned Saturday evening, tired, but elated from being with the family.  Getting to met my grand niece Gwen and seeing how far Roni has come were also causes for celebration.

1:41 pm

Monday, October 25, 2010

The Oompa Loompa's song

Sunday,, October 25, 2010. 8:34  PM

From the beginning of March, 2010 through June, I was fighting a losing battle with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). CIDP  is a chronic, progressive auto immune illness, similar to MS.  My body's immune system became hyperactive and it began attacking my nerve's protective myelin sheath.  As spring turned into summer,CIDP took my legs, my arms, my feet and my hands, leaving me paralyzed.

I didn't stand or walk at all until the end of July. Our neighbors filmed my first steps (Link here ). It was a very dramatic moment for us all.

Today, October 24th, my wife took this video of me walking through the house.

It took plenty of faith, work and support from friends, family, and the excellent physical and occupational therapists who brought me to this point.

Monday, October 25, 9:00 AM

Saturday, October 23, 2010

Listening to the Dalai Lama

Thursday, October 21, 2010, 8:45 PM

From the moment he appeared on stage today at Millet Hall, Tenzin Gyatso, his Holiness the 14th Dalai Lama, radiated a powerful air of beneficence into the sold out, ten thousand seat stadium. This man, I thought, pulling myself to my feet to join in the applause, is so full of love that I can feel it. Looking around the floor, I saw this reflected in the rapturous faces of others, young and old. A woman in the aisle next to me held her white hands over her heart and fluttered them slowly like moth's wings, the smile on her face clearly sending her love back. After giving the traditional Buddhist greeting bow, he made a face and gestured for us to sit down.

Tenzin Gyatso, his Holiness the 14th Dalai Lama
During the lengthy introductory remarks, His Holiness reached into the red bag on his couch, took out a Miami University sun visor and put it on. He told the audience this helped him see them better. Speaking to darkened auditoriums was like talking to a ghost, he explained.

He told us he was tired and would stay seated throughout the afternoon. He untied his shoes and pulled his feet under him with a “let's get comfortable” gesture that suddenly made the giant space seem cozy and intimate.

His Holiness's talk was entitled “Ethics in the Modern World,” but there would not be a prepared lesson; instead he would speak from his heart. He told us that our minds are all we have and how we use them is the only choice we can make. “This guy,” I thought, “has been to Ala-non.”

The hour passed quickly. Sometimes it was difficult to hear what he was saying, which was frustrating. Even more frustrating were the times I missed what he said because I was busy trying to anchor his earlier statements in my brain so I could keep them forever.

Instead of feeling sad about what I missed, I am grateful for what I retained.

The Dalai Lama told the audience that the news media has a great responsibwhiteility; they should have long noses like an elephant to sniff out both sides of a story. Then both sides should be presented to the public. The audience laughed at his description of how the trunk could be used to reach around and get the untold side of a story.

There are many similarities between Buddhism, Christianity and Islam: Forgiveness, contentment, love, compassion are some of the ones he told us about. All the world's religions are built on the same principle; love for the Creator and creation, but their philosophies may be very different. He stressed the importance remaining true to the tenants of your faith, whether it is Buddhism, Jainism, or whatever it may be, and also respecting other's faiths.

He spoke warmly about Christianity's dedication to education and Islam's commitment to charity. Traveling throughout some of the poorest areas of Africa, he found many schools and clinics staffed by nuns in remote areas. And traveling throughout the Islamic world, he saw the rich giving to their mosques to help the poor. These things can bring people together instead of pushing them apart.

When asked about how to react to increasingly grim and violent stories in the media, he told a story about a city where five people were murdered in one year, but many people were helped daily. Which shows the true nature of humanity?

Our true nature is one of compassion, violence is an anathema to us. We react strongly to violent stories because it is the opposite of our nature. The world is full of good people, even the ones we would see as our enemies think of themselves as good. Peace could be reached if we learned to see similarities, not differences.

My experiences this summer has taught me that this is true; people always try to do what they think is right. Being in my wheelchair in the community, I am always surprised by complete stranger's willingness help me.

There was so much to be learned from what I saw today; I hope I did a fair job reporting it. Seeing His Holiness today was a great privilege for me and the rest of the audience. He tried to show us how easy we could attain peace and contentment by believing we could and appreciating our universal similarities, not fearing differences. His belief that we could have a better world by each of us making that choice was infectious. I hope I can make tomorrow a better day than today.

10/22/2010, 9:35 AM

Saturday, October 16, 2010

Better all the time

In August, my neurologist began to adjust my medication, slowly backing off the steroids and reducing frequency of my IVIg infusions.

I certainly don't mind reducing the steroids; the psychosis, diabetes, and whatever else the medication is doing to me are awful. I knew I wouldn't miss spending an entire week each month at the hospital to get my infusions.

The neurologist told us to keep an eye on my symptoms.  If there were any regression, we were to let her know immediately and resume treatment at the previous levels.  The symptoms haven't returned and I am glad to have gone from 80 milligrams per day of the Prednisone to 50 a day and get my IVIg infusions once per week instead of 5 times (one a day for 5 days in a row) a month.

Today my physical therapist and my occupational therapist told me that I am continuing to get stronger!   Take that, CIDP!

Presently I am spending more time on my feet than in my chair.  I walk around the house with a cane or steady myself with what ever is handy.  Lately, I've taken to using the cane outside the house, leaving the chair at home.  When I am tired or feel like I can't trust my legs, I get back in it.  Fatigue is still a concern;  when I get tired, I am done.

Besides the fatigue, my hands and legs are coming along nicely.  The numbness and tingling in my hands is almost completely gone and the strength and dexterity are returning. I am still prettyretrurnedloo unsteady on my feet, especially while standing.  Today my physical therapist explained that standing involves constant movement from the muscles in the lower legs.  Most of the TABs (temporarily able bodied) out there are probably not aware of how hard their bodies work to keep them upright.

Today I spent some time sitting on a large ball, practicing my balance in my upper body.  It is much harder than it looks.  Luckily I had my ever vigilant PT to help keep me from falling.

My feet are my largest problem area right now.  I have to watch them constantly  while walking, otherwise I tend to drag my toes.  I could easily trip over my own feet!

I have to admit it is getting better.

Tuesday, October 12, 2010

Do nothing 'til you hear from me

Friday, October 8, 2010

The topic of last Wednesday's Ala-non meeting was courage, as in courage to change, the name of one of the Ala-non daily devotional books. I know quite a bit about courage, or more exactly, the lack of courage; a few years ago, I would find myself gripped by fears about the uncertainty of the future. These episodes would cripple me, occupying my mind for hours. Going to meetings, reading the literature, and working with a sponsor helped me get through this difficult period. I learned several tools that helped me then and they are helping me now to deal with my CIDP.
The first tool is courage to let things go, to trust there are many problems that I’m not supposed to solve and that this is alright. I have to recognize that others have their Higher Power, who is leading them to discovery at their own pace, not mine.
Adrienne carried an unbearable burden while I was in the hospital and bedridden at home. Knowing she was doing all this hard work to help me was terrible. But I couldn't help her. Trying to do more than I was capable was not only a failure, but dangerous. I had to trust that she would see herself through this and we would both be alright.
The next tool is the courage to make mistakes. Trying something and failing was a sign of weakness and vulnerability. Therefore, it takes courage to try new things or things that I have failed at. If I stop trying new things because I am afraid of failing, I have stopped growing. I have had plenty of failures, but through God's grace, many of those failures have already turned into victories.
Writing is a good example of this; ever since I could write, I have taken great joy in using words on paper to express and communicate. I thought I was pretty good at it until it was explained to me that I wasn't as good as I thought. I could have worked to improve my skills, but instead I didn't write a thing for many years. I thought that if I couldn't be perfect, then I would be nothing.
I started writing in the hospital to pass time and help me process what was happening. I also hoped that people close to me would read it to get information about my condition. Publishing a couple of blog posts a month isn't going to make me a great writer, but it is making me a better writer.
Lastly, the courage to say I can't do it myself-I need help. Asking for help truly is a sign of strength.
While in the Drake Center, my roommate Steve and I were talking about how it felt to one day be healthy, then the next need so much help. “It's humbling,” he told me.
Humbling is right. I survived all sorts of things I never thought I would. But I didn't have to do it alone. God surrounded me with love and protection. To all the people who brought that to me, you were emissaries of God, carrying His message and doing His work for Him.
When faced with a situation where I would have responded by using unkind words, or tried to force my solution on others, or any other of my unsuccessful strategies, I pray to my Higher Power for guidance.
I seldom get a dramatic response; 99% of the time, I don't get any discernible response at all, so I do nothing. I keep my mouth shut and wait patiently for resolution to come from a different source, and it always comes.
When people want to talk about my recovery, I have to give credit where it is due and say, “God is good all the time.”
All the time, God is good.

Tuesday, October 12, 2010