Iron Ore

Update:

I saw the neurologist Monday and things are going well. Despite the ever present weakness, fatigue and pain, no CIDP symptoms. I am going to continue reducing my prednisone until it is 5 mg a day. I am going to start tapering off my IVIg-once every two weeks, then once a month and finally, as needed.

They are popping open champagne at my insurance headquarters over that! Last time I checked, my IVIg was over $16,000 a treatment.  I have had around fifty since last March.  

In other news, I am now married to a doctor. Adrienne received her PhD on Saturday. Next week, we will travel to Vermont to visit friends and pick up Mercedes. I can think of little else than seeing her again. There are also the preparations for moving to Statesboro, which will happen early in July. Of course, the house is still unsold.

My day out

Monday, January 31, 2011 10:43:47 PM

We woke on Wednesday morning to a house with no electricity which meant no heat, to Internet, and NO COFFEE. There was a huge ice storm in South-West Ohio last night, leaving everything coated in glass. It is very pretty to look at, but getting out of the house to find heat, Internet and good coffee was pretty tricky.

An answered prayer

Friday, November 26, 2010 10:10 AM

We flew into Dayton last night and boy, are my arms tired! I couldn't resist. It was a late night for us and I had an early morning today. We are both tired and I am feeling a little under the weather (sick). It is probably from my poor dietary choices and not from a bug.

We left New Orleans on Monday and drove to Mobile, Alabama to visit a childhood friend of Adrienne and her husband. After a good night's sleep, followed by a long nap in the morning, we made it to their house early in the afternoon. For the next two days, they treated us like royalty, opening their home to us and chauffeuring us around Mobile.

I pushed myself on our site seeing visits, walking as much as possible. We visited a Civil War era fort at the mouth of Mobile Bay and I must have walked at least 90% of our time there,going around the perimeter and down stairs on my feet. It was fun to see the world from that height. It did take its toll on me and wear me out.

On the way out, an elderly lady approached our group and asked, “Well, did he behave himself?” The rest of the gang paused to talk with her and joke about my behavior. I rolled ahead, embarrassed at being talked about as if I were a hyperactive twelve-year-old.

When I calmed down, I realized that I had it wrong; she wasn't singleing me out because I was a special, she was trying to ingratiate herself with us in a friendly way. I remember a very social client who was mildly retarded and used a walker because he had cerebral palsy. One of the things he liked to do was approach a pair of people having an animated conversation, such as two women in the grocery store where he worked. Once in position, he would wait until the conversation reached a point where both women would begin laughing. He would laugh with them and say something like, “You just don't know...” at which point, the ladies would include him in the conversation, as if he had been there all along. Tricky bastard.

Adrienne's friend and her husband many rather personal questions about what happened to me, “What was the worst part? How many medications did I take daily ? My illness was monopolizing the conversation and I began to feel a little self-conscious. Was I the ambassador for disabled?

One of the things that Al-anon has taught me is that when other people exhibit annoying behaviors, it is often because I find the same things annoying in my self.

With that in mind, I flipped my perspective and realized that these 3 people were trying to do something I had difficulty doing; ask some one questions about their disability. Once I had a friend who was in a wheelchair and I let that chair get in between us.I never asked him why he was there or anything about his life outside of the narrow focus of our shared interests. I never did it because I was afraid to bring these subjects up. That was silly of me.

He may have welcomed sharing that part of his life with me. If not, he was capable of letting me know. This may have deepened and improved our relationship. It would have been helpful to talk to him about these things when I got sick and realized I was about to become disabled.

I sent him an email last summer, but never heard back. I hope I'll hear from again; I miss him and the things we talked about. We also might have done the other thing friends do; support each other through difficult times.

We left Mobile Thursday afternoon drove to Louis Armstrong International Airport in New Orleans for our flight home. I was once again groped by TSA; was no easier the second time. However, this time, the Air-Tran employees were very courteous, speaking only to me about myself and asking before grabbing my chair.

I left the South renewed and encouraged by the friendly people we had met. I don't think it was because I was a handicapped, but because they were genuinely good people.

I especially appreciated the hotel. The room accommodated myself and my chair nicely and the bed was comfortable. We were late leaving the motel, largely due to my exhaustion. An employee came to our room to check on us. She also took a moment to hold Adrienne's hand and prayed for our safe travel home.  She showed herself to be braver than me.

Friday, November 26, 2010 12:34 PM

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

Wednesday, September 29, 2010

It has been a while since I posted anything, so I am just going to pray, then ramble. “Let the words of my mouth, and the meditation of my heart, be acceptable in your sight, O LORD, my strength, and my redeemer.” Psalm 19:14

I am back in same day surgery this week. The beds aren't as comfortable, but the nurses are awesome. These are the same nurses that held hands and prayed with Adrienne and me last spring (The Best Show I Ever Saw) and helped get me into the hospital at UC last spring. Their fierce (and fearless) witness has been a comfort and inspiration to me.

I started writing to help myself process my illness (and also to inform others).I never expected that it would become so spiritual, but I couldn't imagine how hard it would be to go through this with out my Higher Power.

I don't know what my future holds, but I am not expecting a miraculous cure. The CIDP will probably be an increasing part of my life; there is no miraculous cure in my future. There have been miracles though and more to follow! Instead of taking away my burdens, He will see me through them.  

My status has been upgraded from amateur to professional

July 17, 2010

This is from a post I wrote shortly after the 4th of July:

“…while waiting for the fireworks to start, I saw someone in a wheelchair come down the sidewalk and cross the street. I was awestruck by how graceful and independent he was. He came down with a group of friends who went off to the right while he went off to the left into a parking lot. Moments later he emerged from there and took off after his friends, across the street and down the hill. He moved as easily as I can say these words. So far my experience with using my chair outside has been anything but easy or graceful. I struggle to keep the wheelchair pointed in the direction I want to go and forget about going up any incline-it is too hard.”

This week I got my new, custom built chair. It’s awesome! The chair is designed to fit me perfectly. It is like a part of my body and is engineered to fully utilize the power in my upper torso. Going up and down Jacqueline Drive is like riding a bike, I coast, accelerate and brake smoothly.

I’m intoxicated by my newfound of mobility. I left the house Saturday morning and traveled on my own the half mile to our local McDonald’s restaurant for breakfast. Then I lingered over coffee and read the paper. On the way home I stopped at a drug store and bought a candy bar (a no-no, but I was intoxicated.).

After that, I ran into Alex, walking home from his mornings activities. He was amazed to hear where I had been. For the first time in a long time I felt like an adult, making my own decisions and traveling independently.

Before I got my new chair, traveling on the local sidewalks was extremely difficult if not impossible. This meant in order to exercise, someone would have to drive me to the local big box store where the floors were flat enough for me to roll across. Now I know I can just go out my front door and travel up and down the street.

Getting outdoor exercise is extremely important. If I don’t tire myself out during the day, I’m extremely irritable in the afternoon and evening. There the combination of pent up energy and frustration make a bad mix for my mood.

Exercise and mood are important to my attitude. At my best, I am a jerk. The side effects of Prednisone and Cellcept exacerbate that condition. I often have to explain that I am having “crazy thoughts” and should be left alone. There is a condition known as “Steroid Psychosis” and sometimes I feel so out of my head, I worry that I am developing it.

As I’ve recovered, I’ve noticed that I have started to become alienated from the world around me. It’s like an undeclared state of apartheid between the Bi-peds, those whose arms hands feet and legs work perfectly, and the disabled, who inhabit the lowest tier of society because they lack four, symmetrical working limbs.

The other day someone put something in my lap and I found myself yelling, “I am not a piece of furniture!” I was prepared to go on about how they shouldn’t assume I was their personal storage cart that they could load up with useful items and move from place to place at will, but I could tell by the look on the person’s face that I had already gone too far.

I’m completely horrified whenever someone grabs my chair and begins to pull and push me without asking my permission. It wouldn't be acceptable if I were standing up, but because I have wheels...

Lucky for me, the volunteers at the hospital have a good sense of humor.

Pants will no longer be worn in the next phase of my life

I am officially announcing that as of Monday, April 12, I have stopped wearing pants. This is not due to a newly adapted, bohemian life style nor am I not fleeing my bourgeois existence for a new life of decadence and hedonism.

For the next phase of my life, pants are going to be a hindrance. Also, certain notions about privacy and bodily functions are being cast aside (I won.t be sharing them here). At this point in my life, I can no longer put them on or take them off without assistance and effort.

When I couldn't walk without a cane, I thought, "I can live with this."

When I couldn't get up without a walker, I thought, "I can live with this."

When I became wheelchair bound, I thought, "I can live with this."

When I couldn't sit up on my own, I thought "I don't want to live like this anymore.:

I am back in the hospital. This time it is University Hospital, at the University of Cincinnati. They are still flummoxed by what might be the problem, but I feel better for being here, pantless in my big chair.

Little things mean a lot

It is truth telling time. I love all your support-the encouraging words, the prayers, the meals, coming over to put new ink in my printer, everything. This is hard. My body has turned against me, mutiny on the cellular level.

Late nights are particularly hard lately. I woke up last night to find my legs tangled in the blankets, hanging off the edge of the bed. I thought I was going to fall. If it hadn't been for the blankets, I would have fallen. The most horrible part was my inability to pull myself back into bed. I had to wake up Adrienne for help.

Sleep is becoming harder due to my increased discomfort. Rolling over is a real challenge, requiring me to wake up, repositioning my legs with my hands then work my upper body to a new position. Standing up is also getting harder. It has been days since I did it on my own. Adrienne has been helping me transition from chair to bed and that has taken a toll on my shoulder. This morning, trying to get from the chair back into bed, I screamed "It's too hard!" and started sobbing. Adrienne leaned over me and smoothed my face with her hands until I stopped.

These are just some of the things that occupy the forefront of my mind. Sometimes, I catch myself thinking about the future. Will I ever walk again? Will my sickness progress? Where is the money going to come from to pay for this? Am I ever going to drive my VW bug again? Or is it something left over from my old life?

But thanks to a woman named Dana from a local medical supply company, I now have a wheel chair that I can get into and out of from the side, meaning I no longer have to stand up when transitioning. She also brought a special board that I can sit on and slide from one thing to another. This is a huge relief for me. I was able to go outside in thewarm sun and visit with the neighbors, watch the kids play, bum a smoke...

The Best show I ever saw

July 4, 2006. We had left our jobs and home in Vermont, sold everything we could and drove to Oxford, Ohio to start the next phase of our life. We bought a cute little house on Jacqueline Drive, a short distance from the campus of Miami University. This was so Adrienne could be close to her classes and office as she began working on her PhD in Gerontology. One of the biggest reasons I love Adrienne is her ability to make a plan and see it through. Getting a PhD was a goal she had set for herself over a quarter of a century ago and at last, she was ready to start.

She also wanted me to come with her. Since I can't make a plan beyond what I am going to eat next, I just said, "Sure."

That fall, at the Tall Stacks Festival on Cincinnati's river front, we went to see The Blind Boys of Alabama. The Blind Boys are the real deal-they began singing gospel music together before Word War II and have performed all over the world. HBO used their version of Tom Wait's song "Down in the Hole" as the theme song to the show "The Wire" for the first 2 seasons. I am proud to say that I am a fan. I did not expect that going to see them in concert would be a life changing event.

The show amazingly high energy. With their harsh as nails voices, they sang many of my favorite songs. The Blind Boys have worked with some of my favorite artists and totally embrace contemporary, secular artists. They didn't sing any secular songs though.These guys, some of them in the 90's, rocked with fire and fury that had to be seen to be believed. At one point, Jimmy Carter, founding member, singing gospel since 1939, actually left the stage and ran into the audience (of course, lead by his guides). He praised God for bringing him to Cincinnati to sing about the Lord, and then he told the audience, "Once God opens a door for you, nothing in the universe can stop you from going through it!" and he was there as proof for us to see how amazing God is.

At the hospital, getting ready form my 7th IVIg treatment, I was surrounded by a group of nurses who were praying for me. They came up before my treatment started and asked if I minded them praying with me. As we were praying, I remembered Jimmy Carter, standing out there on the lawn, praising God.

Candy, one of the nurses who prayed with me, reminded me that life if a journey with twists and turns and this was just a bump on my journey. It wouldn't last forever.

Our pastor was just here and his parting words to us were to remember the words "Right Now." As in, "right now is a good moment." or "I can't do this right now."

Every time you have called me or sent me some scripture to read or told me you are praying for me, you have given me one of these moments, "Right now, I am not alone."

Perspective

When I stop living in the moment, I lose perspective. Things that are very far away seem close and tiny things appear to be huge. Then it is easy to get over whelmed and start feeling hopeless and depressed, etc.

I sent an email to my friend Duane about the indignities of being in the hospital, expecting him to commiserate with me. He was in the hospital last weekend dealing with his own health issues. Here is part of what he wrote back:

“The funny thing about being in the hospital is that it is so easy to think that whatever is happening to you is the worst thing ever until you hear the guy next to you working on his will with his wife because the doctors aren't sure if he will survive the brain surgery to remove the tumor that has returned.”

His reply reminded me that I was letting little things get in my way instead of placing them in their proper perspective. By focusing on the little things, I was neglecting what really important.

One of the first things I learned in Ala-non is to be gentle with myself. Making mistakes is inevitable. Berating myself for making them is not. Living is about discovery. In order to discover things, I need to be actively involved in life. And that means that sometimes I will start down a a wrong path before discovering the right one.

I had forgotten that my prognosis is good-all the doctors have told me to expect a complete recovery. What I was experiencing was necessary to achieve that goal.

Courage to Change reminds me to take it “one task, one step, one day at a time.” By focusing on getting through the moments instead of wishing they weren't happening, I get closer to where I am going. To get through those difficult moments, I have my Higher Power and the tools of He has given me.


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