Second Anniversary

This is me, two years ago.  Last year I was jubilant.  Not so much this year.  I have noticed that I am continuing to get stronger (yay!) physically.  Mentally, I am struggling. I wrote some poetry last week and posted it on another blog. When I went back to reread it, I realized that I am a really angry man.  I keep thinking about those days and weeks in hospitals.  In other news, it has been a long time since my last IVIG.  That means I am going to start getting off of the Cellcept and if that goes well, Prednisone.  

And after another prescription SNAFU, I have decided to get a new doctor.  I am waiting to hear back from some one from church recommended.

I can dish it out, but can I take it if I dish it out to myself?

Thursday, February 17, 2011 

I am preparing to recognize a milestone-my symptoms first appeared early in March, 2010. Whether I am going to celebrate or curse remains to be seen.
It depends on my perspective on the events of the last twelve months. A year ago I was healthy, employed, and looking forward to vacationing with my wife; two months later I was paralyzed and totally dependent on other people for everything.

Tuesday morning

Curse of the Crimson Alter

Tuesday, November 2, 2010 8:36 AM

A blessing, free time, what to do? What to do? Today is my first “day off” in over a week; I don’t have to go anywhere or do anything. And I am pretty much alone; Adrienne will be in school until five and Alex? He’ll be around, but will also be doing his own thing.  How to best spend it?

Right now I am just finishing breakfast and my delicious cup of coffee on the couch. The pets are running around, carrying on their own style of social interaction. I’ve come to realize that the majority of my most recent social interactions has been with the pets. That is because I have spent the last two days in bed, preparing for and recovering from a colonoscopy. 

After their short period of scampering around the house, all four of the pets have retreated to their neutral corners and are now sound asleep. The brown dog is on the black chair and the black dog is on the light brown sofa, both of them snoring contentedly. The felines, I imagine, have taken their places on our bed, starting their day long nap.  I've noticed that our cats really don't do much else.

I remember looking watching the kittens at the humane society once. The floor of the room was abuzz with energy as they ran around, wrestling, climbing, and playing with  toys. Then one fell asleep and  other, and a third. Eventually, like a torporific ripple across a pond, the roomful of kittens slipped into slumber.

Sleep is obviously very important to the felines. I’ve heard somewhere that cats spend 2/3 day asleep and I believe it. I’ve also discovered that sleep is very important to me.

I had a colonoscopy Monday morning then spent the rest of the day napping. For those that haven’t had a colonoscopy, I can say that the procedure is not that bad. I say it’s not that bad because they knock you out for it. One moment I was watching the milky white anesthetic flowing down my IV and into my arm, then the next it was Adrienne's smiling face, welcoming me back. The doctor could’ve attached electrodes to my body spent the previous hour laughing as I jerked and contorted for all I knew.

The most uncomfortable part of the colonoscopy was the “bowel prep.” The previous day was spent fasting and trying to drink four liters of this vile tasting, nausea inducing “colon cleanser.” Even now, two days later, thinking about it  creates a gag. I was only able to get three liters down before I decided that that would have to be enough.

Now what is 9:00 and I need to think about how I want to spend my free day. First here’s a list of things I would like to accomplish around the house this morning:

• Clean up after breakfast
• Load and run dish washer
• Put away my clean laundry
• Dust mop the bedroom floor
• Teeth, shave and shower
• Order medication refills
• Set up prescription by mail
• Enroll in a diabetes education class
• Give Frannie her medicine and Eloise her dog treat
• Put Netflix discs in mailbox
• Take my morning nap?

And here’s some of the things I’d like to do for pleasure today:

• Get out of the house!
• Maybe go to Kofenya or some other uptown place
• Catch up on my e-mail correspondence and blog reading
• Talk to another human about anything other than my recovery, CIDP, and today’s elections. Or the Bengals.

Here are some of the things I really want to talk about:

I am a lifelong fan of horror movies and this past October I immersed myself in them. I watched old horror films, from the 1932 White Zombie to a slew of recent remakes of classic horror films such as the Texas Chainsaw Massacre, Nightmare on Elm Street, Dawn of the Dead, and Halloween, and some new original films like Jennifer's Body, Trick 'r Treat and House of the Devil.

I have to say that compared to the originals, these remakes were pretty tepid. The new Texas Chainsaw Massacre is nowhere  nearly as frightening or bull-goose loony as the first one. One thing missing was the totally over the top family dinner scene, where a shrieking Marilyn Burns is tied to an armchair made from real human arm’s.

Fangs of the Living Dead

I was also pleased to watch several Euro-horror films from the mid 1970s. Many of these films are pretty obscure and maybe for good reason. They all thrived on bizarre plot twists, poor acting, and incomprehensible dialogue. On the other hand they were all gorgeously filmed, featured great costumes and sets, and made excellent use of the beautiful female stars.

The Blood Drinkers

Lastly, I spent a lot of time watching a group of films by Filipino auteur Eddie Romero. These films were made in the late sixties and early seventies and most featured the word blood in the title. The best of these films is called The Bloods Drinkers and can be watched for free at Hulu.com. Beautifully shot in a mixture of color, black and white and monochrome tinted scenes, and populated with some of the most interesting villains I’ve ever seen, it reminded me of the stylish films of Jean Rollin.

My companion for most of these films has been Olivia, our black cat. She curls up in the crook of my arm and watches as my computer screen with me. I’m pretty sure she’s not actually watching the movies, but rather than moving colors on the screen. Otherwise I would give for one of my ear buds so she could listen.

This is Michael Williams and I’ve got to get back to work.

12:45 PM

This is what I have accomplished thus far:

• Clean up after breakfast
• Load and run the dish washer
• Put away my clean laundry
• Dust mop bedroom floor
• Brush, shave and shower
• Give Frannie her medicine and Eloise her dog treat

And I must add a new task, edit this post and clean up the voice recognition mistakes from this morning.

3:44 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

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

Two steps forward and one step backward

Thursday, August 12, 2010

CIDP recovery isn't always in a straight line.

Forward, sometimes it happens just this fast:

I woke up a few nights ago because my right foot was moving. Up until that moment, I hadn't seen any recovery below my knees. Suddenly I can wiggle my toes again and push my foot up and down, like using a gas pedal.

I think it’s interesting that I found this out while I was asleep. Somehow my subconscious sent a letter to the conscious through the dream world. I was getting my feet back.

Along with the return of movement came sensation. For the first time since the onset of symptoms in March, I am in pain. My feet, ankles and calves buzz and tingle throughout the day and night. Every so often I get a jolt like an EMG shock. That hurts.

The other step forward has been the return of my hands. When I went back to the Drake Center for my follow-up visit, my grip strength was measured at less than one pound. The average TAB person's grip is around 80 pounds. Less than a week later my grip strength was nearly 10 pounds!

Zippers, button, and reclosable plastic bags were once again objects I could manipulate. I could also push the keys on my laptop's keyboard again, put things in my pockets, hold a wash cloth and soap, etc.

Backward, sometimes it takes a while:

My occupational therapist suggested that typing more would be an excellent way to improve my fine motor skills.

Although my hands have improved dramatically since June, typing is still a chore. In addition to the muscle loss, my hands and arms shake violently from the medications. Most of my July posts have been almost entirely picture or video content.

I thought I would be able to type full-time, but the constant stream of typos makes it hard for me to concentrate. And my hands get tired quickly. I found myself missing the voice recognition software that came with Windows Vista. It had been a great help to me.

I’m going geek out here for a few moments. The biggest problem with the voice recognition software is it requires the Windows Vista partition on my laptop. There’s no need go over the reasons why Vista was an unsuccessful operating system; most people have their own list anyway. Before I got sick I was learning to use an alternative to Windows, but had to stop for one important reason.

Whenever possible, I used the Ubuntu Linux partition on my laptop. Linux is an alternate operating system that is quite powerful, yet also light weight on the computer’s resources. What this means is that anything I want to do on Windows, I can do in Linux faster, more efficiently, and for free.

And it is also fun. There are some challenges, but I love problem solving and figuring out how to make things work. All the software is developed and given away by users, not for profit companies. So the programs can be a little quirky and help is a little more challenging to find. But since there is a community that works on the software, fixes and work arounds come fairly quickly.

But there is no voice recognition software for Ubuntu. I know a couple of projects being developed, but I didn’t find anything that I was smart enough to use successfully. Whenever I wanted to write, I had to go back to slow, buggy, forever updating itself Vista.

But I am able to compromise; I wrote most of this in Windows using the voice recognition software, then edited it by hand in Ubuntu, using the excellent (and free!) OpenOffice.org Writer program.

Pause

Wednesday, August 4, 2010

I feel like a new person. I'm not sure who that is but his life is very full and active. My house is also full and active with my granddaughter running around, Alex and Adrienne working on their projects, and this week my mother in law, Lola is visiting.

I love sharing my house with my granddaughter. She is a constant source of joy to me, and noise. For the last day she has been sharing things with grandpa. If Nana gives her a cookie, she brings it to me and offers me a bite. Of course reciprocation is the downside to this; if I have something she wants she just takes it off my plate. Indulgence is the first role for grandfathers, so I am happy to let her have her pick.

My physical recovery is still progressing rapidly. I am certain that I will be able to stand on my own soon, walking independently can't be far behind. I hope.

CIDP is a very serious illness. I have the attitude that I am lucky, my symptoms have retreated and my body is well on the way to mending. A quick look at some CIDP discussion forums on the Internet last night reminded me of how unpredictable this sickness is. Severe recurrences are not unheard of, sometimes the illness develops a tolerance for its treatment drugs. More than once I've read someone who went to sleep fine and woke up paralyzed, unable to talk.

The next phase of my recovery is to figure out the minimum amount of medication I need.

And I'm continuing to redefine myself now that I left my Able Bodied Person status behind. With the help of friends, I'm continuing to expand my world by spending time outside the house without my family present. Last week I reached a milestone when I returned to the coffee shop where I had spent many happy hours, drinking strong coffee and playing on my computer.

Forever

Monday, May 24, 2010

Yesterday, Sunday, was the first time I have felt normal since I returned from the hospital. I went to church, visited with friends, ate restaurant food, and just had a really good time. I didn't realize how oppressed I was feeling by my stay in the hospital. Feeling normal is the exception for now.

I've been home from Drake Hospital for over a week. It is been over a month since my last plasmapheresis treatment. Despite my ongoing physical therapy and occupational therapy, I'm still getting weaker. My arms and hands are growing less reliable everyday. Picking up or holding objects like my toothbrush or my cell phone is becoming increasingly difficult. My arms' range of motion is smaller every day.

I am becoming convinced that I have Chronic Inflammatory Demyelinating Polyneuropathy. Chronic Inflammatory DemyelinatingPolyneuropathy, or CIDP, is related to Guillain-Barre Syndrome. Both illnesses present in very similar ways; they are auto immune illnesses that attack the nerves, starting at the lower extremities and working up. CIDP requires additional treatment. Often steroids are prescribed, along with ongoing IVIG treatments (IVIG treatments are also very expensive. The ones I had a Jewish Hospital were over $10,000 apiece). Steroids are powerful, anti inflammatory medications that have very serious side effects.

It is now Wednesday. It's been taking me awhile to write this entry. I decided to start writing as a way of helping me deal with the changes that are happening in my life. However, life at home is pretty busy and loud. It is hard to find a quiet space work where I can set up my computer to dictate to during the day. Plus I am receiving occupational and physical therapy at home now. Add to that the 1 to 2 hours a day I spend doing exercises plus the 2 hours it takes to get out of bed and eat breakfast, that leaves not a lot of time to write.

I put my blog online and shared it with other people because I thought it would be a good way to keep other people informed. I quickly realized that to people who commented were keeping my spirits high. Your words of encouragement mean so much to me.

The most amazing thing that has happened since I got sick is the support Adrienne and I have received from other people. It really has been a blessing. I was trying to illustrate that by describing something that happened to me in church on Sunday, but I'm not sure I was able to get the point across. So I decided to address you, my dear readers, directly and tell you that no words could express our gratitude. Special gratitude for those who didn't just call or send a card, but came and worked to get the house ready, brought over a meal, dropped by to do errands, and donating items that we need. Is truly been an unexpected blessing. Every gesture, small or large, was its own miracle. Your efforts have been the voice of God reassuring me that I'm not alone.

Yesterday in church we sang Michael W Smith's Forever. The chorus assures us, "Forever God is faithful, forever God is strong, forever God is with us." I felt tears well up in my eyes. I didn't know if the words were assuring me or mocking me. I was feeling very scared because I knew I was not getting better. I could feel myself shrinking into this body size to prison, with no idea how long my sentence will be. Fears about my future overpowered me. Despair about my present shape pushed me further down.

How much lower, I wondered, do I have to go before this turns around? All I want is my life back. I miss being strong. I miss being independent. I miss being able to stand up.

During the Passing of The Peace, the congregation walks around the sanctuary and greets each other with a hand shake, wishing the peace of Christ on each other. I would always make sure to greet the people who couldn't walk. Today people came to me to remind me that I am part of the body of Christ and worthy of His love. They shook my hands and touched my shoulder, and said that they were praying for me.

God has not abandoned me. He has brought me to a place where I can see Him more clearly than ever. That was in the faces of those who shook my hands, touched my shoulder and told me that they were praying for me. This was God being faithful and strong with me.

I don't know what my future holds. I may never walk again or spend the rest of my life taking powerful drugs that will affect the way I look and feel and behave. Or, through lots of hard work, therapy, and patience, I will be restored. Only time will tell. The important thing and hard thing for me to remember is that I am OK, and I will continue to be OK.

Dark thoughts

Monday, May 3, 2010

Dark thoughts

I woke up Sunday morning in a deep depression. During the night I had come to the realization that my infirmity is going to last much longer than I thought. Recovery from Guillain Barre Syndrome is measured in months, maybe years.

Most troubling is how treacherous my body has become. The frustration of not being able to do simple things is great. So is the fear of falling. Sitting on the edge of the bed, and bending forward to touch my toes can be very exciting. I’m afraid my body will betray me further and surrender to the pull of gravity, causing me to crash to the floor.

Have you ever heard the joke about the man trapped on the roof of his house during a flood? He prays to God for salvation. Along comes a boat, then another a boat and a helicopter. Each time the man turns down their offers of help, saying that God will save him. When the man drowns and goes to Heaven he challenges God, saying “Why didn’t you help me when I prayed? “ And God replies “Help? I sent a boat, I sent a helicopter…”

Late in the evening on Saturday, I realized that I still had my shorts and my mantyhose hose on (very tight stockings I have to wear to prevent blood clots). I decided to take them off myself because I wanted to prove how independent I could be. After nearly 45 minutes all I’d succeeded in doing was getting myself tangled in my clothes. In my frustration, I muttered, “Please, Jesus!” No sooner had the words left my lips when my aide came in, asking if I needed any help.

A therapist explained to me that depression is part of the process of coming to terms with accepting the diagnosis of a severe illness or injury. There are four stages to go through. The final stage, instead of being called acceptance is redefinition or redefining. This is the stage where the patient redefines them self in terms of who they are now, not who they were.

And so I’m beginning to see that my illness is more severe than I thought. That is neither good nor bad thing. But it is something that I have to accept. However, I am still hoping for complete recovery. But as God showed me on Saturday night, He is still with me and is answering my prayers.

Writing this blog is been very helpful for me. Your feedback and responses have been even more helpful. What is also been very helpful is being in contact with other people with GBS. Curt has been a great source of support and information since I got sick. Please take a minute and check out his latest blog entry. It certainly filled me with hope today.

May is Guillain Barre Syndrome Awareness Month

New developments

Wednesday, April 21, 2010.

Things seem to be moving forward. I had my fourth plasmapheresis treatment today and I will have my fifth one tomorrow. Friday they will take out my catheter and I will be ready to move to the next phase of my recovery; going to inpatient rehabilitation at the Drake Center.

Alex arrived last night. Adrienne and I are glad to see him, we’re touched by his willingness to come back to Ohio and help out during the next few weeks. His willingness to come back is a great blessing to me.

The last two days have been very exciting for me. Working with the physical therapy and occupational therapy departments at the hospital, I have attempted to do things that I haven’t been able to do for weeks like putting on a pair of shorts or sitting on the toilet. I have been able to get in and out of bed.

A month ago, I was doing all of those things on my own. As scary as it is that think about how fast I declined, it is even scarier to think about how hard it will be to climb back up again. As long as I kept my mind occupied, it was easy to lie in bed. But now comes a part of my recovery where I’m going to actually have to physically work to make gains. The road ahead appears to be very steep, very rocky and fraught with potholes.

I got a glimpse of how challenging this is going to be today. Transferring to the commode from my chair, I became scared. I felt nauseated and I could feel my heart beat faster. It hurt to sit up and I forgot to use the rails to support myself. While moving back to my wheelchair, the board I was using for the transition shifted and I was afraid I was going to fall. The occupational therapist was right there and she had me tethered.

In my copy of Courage to Change I’ve written some definitions of the word fear:

Face Everything and Recover,
Fake Evidence Appearing Real,
and the newest one, Future Events Are Not Real.

I write this blog to help me process these things. It is helpful to be reminded that I am not alone, there is a power greater than me that will see me through today.

It is now Friday morning. The last few days have been crazy.I am very grateful to the staff here at University Hospital. I feel they have got me started on the right path. I don’t know when I will be able to write again. Please wish me well and continue to hold Adrienne and me in your prayers/thoughts.

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."

Good things about being home #2

I went to my first Ala-non meeting in 2 weeks last Saturday. It was good to be with a group of people talking about spiritual recovery. However, getting to the meeting was a little scary.

The room was on the second floor; these were the first stairs I had climbed in weeks. When I made it to the top, the door was locked. I sat down on the step and called down for someone to come open the door. When the door was open, I found out I couldn't stand up! In a moment I experienced many emotions, fear, frustration, embarrassment. Some brought me a chair I could use to pull myself up. Everything was alright, there was a nice little group and the meeting was good.

Later that night I fell while letting out the dogs. It was the damnedest thing; I was going out to the back yard, stepping down from the garage to the patio and my leg turned into a rubber band. I wasn't hurt, but I couldn't get up. I was outside and alone. Adrienne was in the house asleep and there were no lights on at the neighbors. Fortunately there was a chair to help me get back on my feet.

Sunday I was sore, Especially my shoulders from pulling myself up. This reminded my that there is something new in my life right now-risk of falling. Once again, I experienced what I felt while on the floor of the Ala-non meeting: Anger, fear, embarrassment, plus plenty of self pity.

I brooded over my circumstances for most of the day, hoping to see myself through to the other side. But the harder I tried to change things, the more hopeless I felt. Then I remembered that feelings are only feelings and I very little power over them, they just are like stars in the sky or gravity. I feel ___________ and I will feel that way until I stop. What I can change is how much power I give them over me. When brooding over them didn't help, looking someplace seemed the only thing left.

So I decided to make a gratitude list.

1. My wife, Adrienne-she has been with me since this started, coming to the hospital everyday while I was there, helping me through the difficult times I had there. She has also changed her schedule around so she can be with me during this recovery time. That includes putting off a very important trip she needs to make for her dissertation. Also, she is consistently cheerful and patient with me. Her compassion and reassurance are two huge gifts that she is giving to me every day, all day long. She also helps me keep my perspective. I could never repay her for all this care. I am blessed to have her. Plus she looks really cute today.
2. Family, friends and neighbors that are always available to cheer me up and encourage me. Especially our next door neighbors, who have unselfishly helped out when ever we've asked for help. Thank you Mike and Emily. Also Alex, my son, who was a big help at home while I was in the hospital. And I can't forget Natasha and Mercedes, my daughter and grand daughter
   
3. Friends from the program who have been checking in on me, giving me rides when I need them to meetings, bringing food so Adrienne doesn't have to worry about shopping or cooking. They also have been helping to keep me grounded and living in the moment. I am prone to falling into despair and self pity and with out them, I would be spending a lot more time in that black hole.
4. A reliable Internet connection so I can keep in contact with people far away, including other people with Guillain Barre Syndrome who also share their stories. I also want to add Facebook, Skype, and the Google. They have all been useful in different ways.
5. The doctors and nurses at Jewish Hospital, McCullough-Hyde Hospital, and Indian Creek Family Medicine. Thanks for curing me and aiding my physical recovery. Special thanks to Dr. Phlum for getting me diagnosed and into treatment.
6. I am grateful to you for reading my blog. Contrary to what I may write here, I am not all yippy skippy, hurray. Writing this blog helps to keep me grounded and hearing from readers encourages me to keep writing. It is good therapy.

My goals for today:
Shower and shave
Get PT organized
Make a schedule
Call the folks at work

Good news I forgot about until the middle of the night

Last Saturday, in the hospital, the neurologist tested the reflexes in my legs and called them "dead." Yesterday in Oxford, when Dr. Hoke tested them, they both twitched! I was so preoccupied by obsessing on how long the recovery will take, I completely forgot that the process has already begun.

This was one of the things that came to me early this morning while I was trying to get back to sleep. Another thing that came to me was how much I am enjoying doing this. It is hard work; nothing flows. But I like what I have done so far. I also like the fact that it is not perfect, but I can press the "Publish Post" button anyway.

I figure about 95% of the time, I am letting perfectionism, procrastination, or paralysis hold me back. I have been learning that I don't have to be spot on perfect, or even 100% right in everything I do. After all, I am a work in progress, so why shouldn't my every day life reflect progress (a fourth P!). Making mistakes is a part of life, so I should embrace my errors. This way, I can reduce the chances of making the same mistake twice. My friend Jutta told me that she learned to say say "Thank you for teaching me" to her mistakes.

A friend in school once told me that if I was having trouble saying something, it might be because it isn't clear in my mind what I want to say. A lot of what I do is write things down, then go back and try to make it coherent. This is where I get a chance to really learn the lessons that I've read about or gotten from talking with others.

A last piece of good news-I made it to my first meeting in 2 weeks today.

Good things about being home #1

The pets were glad to see me. Olivia, the maddest cat in southwest Ohio, has not let me leave her sight since I got home from Jewish Hospital on Tuesday night. Eloise, the monster dog, ran around the yard in circles, stopping to poke her head in my lap every few circuits. Then there is Frannie, our cocker spaniel; if God created anything cuter than cocker spaniels, he kept it for himself. She is almost unbearably cute, even when she snores. Many nights I've lulled myself back to sleep listening to her snuffle and wheeze in her sleep. After four nights without my her unique brand of white noise, tt was a great comfort to be able to listen to her again. Of course Thor, the Fat Bastard in feline form, just gave me his half lidded, “Oh, were you gone?” look and went about his business.

I had been in the hospital in Cincinnati for 5 days being tested and treated for Guillain-Barre Syndrome. While in the hospital, I wrote long notes about being there and what was happing to me. I posted them on facebook page and Emailed them to people who aren't part of the social network scene as a way to let friends and family know what was happening. In response, I got plenty of support and encouragement back. This helped take a lot of the fear out of the experience for me.

I have been thinking about creating my own blog instead of emailing/noting people when I write something, but I was worried that no one would read it. Adrienne, a huge support, pointed out that blogging would be good for me. As usual, she put her finger on it. All this writing was to help me process things. I had never thought that writing things down benefits me the most (although plenty of friends have pointed this out).

Since last summer, I have been praying for God to make me a better man, a better husband, father, son, Christian, etc. I don't think that my recent illness was an answer to my prayer, but I do believe that it has been a chance to learn to use some of the tools I have available.

Some of those tools have been reading my daily literature, a trusted sponsor, the fellowship and community and learning to speak for myself to others, even if it is things I don't want to be made known. And another tool has been journaling.

I never thought that journaing stuff was for me, because, you know, who wants to read my meanderings? But thanks to my wonderful wife, I realized that the most important member of the audience is me. Of course I am also the harshest critic, so I am going to stop now because this will never be perfect and I've written enough for today.