Decisions Decisions

I ran into Ella's favorite groomer yesterday.  She greeted me with a smile and told me she had a dream about me recently.  I said that women always tell me that (leaving out that it is usually in nightmares).

She had something very serious on her mind that she wanted to share about a big decision she had made.  With the support of her fiance, she was quitting her job.  She had faith that this was the right thing to do, but it was scary because she did not know what the next step would be.  "It might be the worst decision I ever made," she said.

The Moon is Beautiful

4:30 in the morning.  It is nice and cool outside, I can see the quarter moon from my back porch over Georgia Highway 67.

A year after Natasha died, I decided I didn't want to be crazy any longer.  Coincidentally, it was also at 4:30 am that I had this epiphany.

I started going back to Alanon meetings.  At last night's meeting the topic was acceptance.  Halfway through the meeting, I shared that, so far, we had been talking about acceptance in terms of alcohol and the alcoholics in our lives, straight from the first step.  But I was thinking about the Serenity prayer.  In the first third of it, we say God grant me the serenity to accept the things we cannot change.

Acceptance is a gift. And it is a gift that we constantly have to ask God for.  I quit asking after Natasha's death.  It was too painful to revisit that everyday, sometimes many times in one day.  I felt I would be better off just struggling through.  It was not that I thought I could do it better on my own, I just didn't think I could do it at all.

That was kind of like turning up the radio, rolling down the windows, flooring the gas pedal and taking my hands off the steering wheel.  As much fun as it is to do that, it never ends well.

Angel Band

It has been a week since my daughter, Natasha, died.  Adrienne, Alex and I arrived home in Georgia on Wednesday afternoon.  After only a few weeks, this is our home now and Vermont is the alien country.  I tremulously wandered around our condo, reacquainting myself to the familiar territory; I was the changed one.

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.

Knowledge to carry it out blues

Tuesday, December 28, 2010 10:47 AM

This is the last day of 2010 and I do not intend to reflect on the year past searching for clues and encouragement to face the year ahead. 2010 was a pretty turbulent year for me and I am looking forward to seeing it disappear my rear view mirror.

Not that it was all bad; to be truthful, the good far outweighs the bad. There was plenty of change for me and change is almost always a painful experience. Anyone who has quit smoking or some other deeply ingrained behavior knows this. At least with smoking or eating, there is some sort of physical record. I can see myself cadging a cigarette from my neighbor or eating peanut butter out of the jar at midnight to know that I have not given up smoking or grazing.

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

“Yes,” “Not now,” and “I have something better”

Monday, November 15, 2010 12:14 PM

Adrienne left for Statesboro, Georgia today for an interview at The University of Southern Georgia. As expected, this is a big deal. The position seems like a good fit for her and being invited to meet faculty is a good sign. Also an anxiety inducing one.

Naturally, there has been plenty of tension in our house because we don't know what to expect; will they offer her a place or does she have to go back to the beginning?

We started the process of preparing to leave Oxford over a year ago-Adrienne had to finish her dissertation and graduate, find a job, we had to sell the house and find new housing, etc...

Then along came the economic downturn, which made selling a house and finding a job more difficult, and my debilitating illness. Being paralyzed or so fantastically weak means that I haven't been able to be much of a partner for a lot of this. Thank Heaven for Alex, he has proven that his shoulders are wide enough.

There is a lot going on this week-Adrienne's interview, Alex and me home alone for the first time, the our trip to New Orleans (my first major trip as a non-TAB), and Alex staying behind to look after the pets. I don't know about my other house mates, but my stomach is tied up in knots.

When I question the future, I am reminded something Adrienne taught me; when we ask God for something, He has three responses, “Yes,” “Not now,” and “I have something better.”

This morning we both prayed for knowledge of His will and the strength to carry it out. That greatly simplifies and focuses things.

Monday, November 15, 2010 01:07 PM

Good days, bad days

Tuesday, November 9, 2010 1:26 PM

Today, I am so exhausted I can barely sit up and type.  I couldn't catch my breath in  physical therapy and cut the session short.  I also stumbled three times this morning, but no falls.

Good Days, Bad Days is the name of a book I got about dealing with chronic illness, but haven't read much of it.  What I did learn was that recovery in an uneven process, some times things will be great, sometimes not so great.

Today, I decided while waiting for my physical therapist to get my chair, is a bad day.  After over 5  of good days, I am due.  After all, how can we evaluate the good without some bad to hold up next to it?

I thought, I've had my seven years of plenty, and  now is it time for the seven years of lean?   But then I remembered that I had my lean years first, those months I spent getting weaker and weaker until I became paralyzed.

And how did I get through those dark times?  One day at a time, not worrying about the future, just concentrating on the now and leaving the details to God.

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

Physical therapy starts/"A cat is a lion in a jungle of small bushes."

Physical therapy starts

Today was my first physical therapy session. Last week was just an evaluation, this week I was on the machines. We spent most of the hour working on my legs and then we finished off with some balance exercises. My legs feel like they’ve been flayed and rubbed with kosher salt, but in a good way.

Once I got home I had time for lunch before a friend came by to help me set up my new shared office space with Adrienne. Yesterday another friend had come by and did all the electrical things I could not do, such as setting up my stereo and speakers in the office. He also made a computer table that fits on the arms of my chair. Today we brought my clothes in and organized my stuff. The room’s not done, but it’s good to finally have a place for my stuff.

The following is something I’ve been working on for a week and decided to post as is:

"A cat is a lion in a jungle of small bushes." *

I told my new physical therapist that sometimes I forget that I am sick. When Olivia, the better mouser of my two cats, chased one under the couch, I wanted to stand up and lift the couch so she could get at it. It was a slap in the face when to be reminded I couldn't do it. Being reminded of my disability made me feel sick to my stomach.

After I told my therapist about what a jolt it was when I came back to reality, she offered the typical panaceas that I hear whenever I suggest that my life isn't perfect. She began to tell me how important my high expectations were, that therapists appreciate having clients that work so hard to have their normal lives, etc. I stopped her and said, “You don’t need to put a positive spin on everything I say. Sometimes things just stink.”

The fact that my life does not consist of sunshine, rainbows and unicorns is not necessarily a bad thing. One of the things that Ala-non teaches is acceptance first, happiness comes later. Someone once told me that bad thoughts (or feelings) are important; how else could we evaluate the good ones?

I am proud and grateful of the gains I have made. I've had the privilege of witnessing miracles. I know that I'm a fortunate man; many people with CIDP have much harder struggles’: physically, emotionally, financially, the list could go on.

Telling my therapist it’s a bummer to be reminded that I can’t walk wasn’t my way of being discouraged, it was my way of being brave. Bravery is another component of happiness. When I lack that bravery, as I often do, my Higher Power draws me close and reminds me that I am not alone. As long as I trust Him, I will be all right.

* Source: on the web, this is attributed to an Indian proverb, but I am not sure there are lions in India and I'm too tired to double check.

End of Summer, 2010

The Miami students are back to classes and hopefully we have seen the last of this summer’s “fry an egg on the sidewalk” heat. I’ve come very far since March; I watched spring turn to summer paralyzed in a hospital bed and now I am walking around the house with a walker!

My most vivid memories of the summer are of Mercedes standing by my side, clapping her hands and chanting “Go! Grandpa go!” while I shifted my weight from the chair on and off a transfer board. Now I make my transfers by standing up and moving my feet, then sitting. I couldn’t pick her up when she arrived, but before she left, we could play airplane.

I also remember that God has also surrounded me with a loving support group and family who carried us through these hard months.

The doctors and therapists who have aiding my recovery have all been to notch.

A large chunk of my family, some of whom I haven’t seen in years, made the trip to Oxford to visit us. My brother Bob and his wife Mary Carol came to visit last week, their two oldest sons were here the week before. My Sister Neli and her husband Nate also visited. And of course my Brother Jim, who was able to stay with me for nearly a week this summer, was a tremendous blessing. Plus there have been nieces and nephews, and friends from so long ago who have dropped by, called or written.

Then there are my new friends. People like Niki and Jeannie J. who gave their time to help Adrienne and me, the friends who helped get the house ready and all the people who are carrying us in prayer.

Friends like Steve and Duane, who gave us such amazing gifts to us that we will treasure for years. I have no idea how to respond to such generosity. My brother was moved to tears when he heard about the generosity.

Last week while doing my circuit around the park a stranger who appeared to know me quite intimately stopped me to talk. He appeared to know me pretty intimately, but I couldn't place him. It was my doctor, I discovered the next week.

It turns out that I haven't really lost all the weight I thought I did. When I was at the hospital on Wednesday, my weight was 239 pounds, at 25 pound increase from two weeks ago.

I have felt pretty distracted and withdrawn for the last week. Most difficult has been day-to-day maintenance tasks such as scheduling my rides to the hospital or ordering medications. Talking on the phone or trying to make plans about the future has been exhausting. I haven’t been to an Ala-non meeting in over two weeks because I just don’t want to talk to people now. That is also why I’ve been staying off of Facebook, e-mail, or writing my blog.

I spent a lot of time in my room, watching old horror and science fiction movies on YouTube and Hulu. I just can’t get enough of movies with titles like Astro Zombies or Battle between the Planets. Many of these movies were staples of my Friday nights and Saturday afternoons in front of the television. I hope someday to write more about these movies in an informed and eloquent style like this blog, devoted entirely to films of the 1960s. The author also writes a blog for Turner Classic Movies, which I’m sure is wonderful but I haven't been able to follow it since I got sick.

I believe it is the new medications I’ve been taking to help with my steroid rage. My memory of taking anti depressants is that they made me feel disassociated. I will admit that they’re helping, but the problem has not gone away. This week I started taking a third anti depressants/mood disorder drug. Hopefully that will help before I lash out at someone who will punch me in the nose, wheelchair or not.

Other than my reticence about contact, things have gone very well. I am continuing to improve at a miraculous rate. God has been very good to me by speeding my recovery. Today I got up from a chair in the living room and walked out to the mailbox and back. Take that, CIDP!

God loves me as I am, imperfect and incomplete. I know he has a plan for me, Adrienne, and Natasha and Mercedes. It is hard not to worry about them because they are so far away.

Old Lessons

Sunday, August 15, 2010

Today during his sermon, Pastor Logan asked us to think of someone who would had been a spiritual influence. I immediately thought of Paul, a neighbor from Norwalk with a son the same age as me. He would drive us to school in the mornings. More than once, when I came over, he would be sitting at the breakfast table, reading his Bible with this breakfast dishes scattered around him.

Paul was the first person I had ever seen, besides our church pastors, who sought to continue his relationship with God beyond church on Sunday morning. Paul and I never talked about our faith, but by doing his daily devotion, he had a profound effect on me.

Logan asked us to name some of these people. During the congregational prayer, those names were read back and we thanked God for their witness. We asked God to “ grant us Your mercy to live by the same strength.”

I am grateful to God for my health, my wealth, and the support of friends, family, and fellowship. I pray for knowledge of His will and the strength to carry it out.

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.

Adrienne

Wednesday May 5, 2010

I made a mistake when I wrote about the fourth stage of dealing with trauma. People who've experienced traumatic events such as a bout of illness or an accident go through four distinct periods or stages. The fourth phase is often referred to as realization or coping. I called it redefining.

Those who know me have heard this before; one of the things that I love most about my wife Adrienne is her ability to make a plan and see it through. When she was a young woman she decided to have her family first and then, when the kids were older, go back to school and get a Ph.D. When the kids were nearly done with high school, she started her master's program. She earned her degree while continuing to work full time for the state of Vermont. It nearly killed her.

She decided that she would not be able to work if she was going to get her doctorate. Another one Adrienne's talents is her ability to find money. She found a good associate ship at Miami University, in Oxford Ohio. Coincidentally this is my alma mater (Go 'Skins!).

She didn't want to go alone. She wanted me there. Typically, she had a plan; sell our home in Vermont, move to Ohio, buy a house that we would sell when she got her degree and we moved to the college or university where she would start teaching. I am not a long distance relationship type person, and didn't totally love my job at that time; it made perfect sense to me.

We moved to Ohio in 2006 when she started at Miami University. Four years later she has finished her classes and is writing her dissertation. Instead of trying to sell our house, she is working on getting the house ready for my return. Instead of working full time on her dissertation, she now has to work on the huge amount of paperwork that goes with having somebody become disabled in midlife. Instead of looking for a teaching position at another university, she's trying to figure out how we will survive financially for the next three months. I am not earning any money right now and her income is about to become a greatly reduced. In August, she may be able to take a one year visiting professor position at Miami, provided she is a professor at that time.

But no matter what's on her plate, she tells me that her greatest priority is going to see me and spending time with me in the hospital. We have been married for 14 years and this is the longest we have been apart. Like all married couples we're seeing good times and we've seen Roth rocky times. No matter what, we've always been able to hold hands, look of each other and laughed about our situation. Our partnership has been a true blessing.

My illness and recovery is one of the greatest challenges we've had to face. But for once we can't face it as partners. I need to lean on her and trust her to do the things that I can't do. I need to make the most from my rehabilitation and it occupies me from the time I wake up until I go to sleep at night. It's difficult to see how hard she has to work because of me. I know that it must be taking a toll on her mentally and physically but she tries to keep it from me.

It hurts to see someone you love in so much pain. The fact that I am the source of much of that suffering makes it even worse. The truth is there's little I can do to help her or to relieve her difficulties. Right now, all I can do is work on getting better, learning how to live with my weakened arms and legs. I'm totally consumed by relearning the things that I used to do without even thinking; bathing, getting dressed and moving from my bed to a chair, opening my own milk cartons. I have to rely on her and trust her that she will find the tools that she needs to do the jobs in front of her. It is hard. It is not fair.

Fortunately Adrienne has her own Higher Power who can do what I can't.

I found this passage underlined in my copy of Courage to Change, "By admitting I am powerless, I make room for the possibility that a power greater than myself can do all those things that are beyond my reach. In other words I begin to learn about what is, and is not, my responsibility. As this becomes clear, I am better able to do my part, for myself and for others, and better able to ask God to do the rest."

When we pray for people who are going through hard times, we also pray for their families, asking God to surround them with angels and give them the strength to carry through the difficult times.

What fresh and hell is this?

Wednesday, April 28

Today is my third day of therapy and my arms (and my legs and my butt) are tired. Last night was the first night I slept without a sleeping pill since I went to University Hospital on April 12.

So I am very tired. I’m also excited about the new things I’ve done. Yesterday, with the help of a machine, I was able to stand up. Not only did I stand up but I also did some exercises while standing. And this morning, I took an honest to God shower in a shower chair as part of my occupational therapy. It took me nearly 2 ½ hours to shower, get dressed, and do the rest of my morning routine. It very challenging, especially getting dressed in my chair.

I find it very hard to balance in a chair. Leaning too far frightens me. I also discovered that I don’t trust my arm strength any longer. This means that if I start to fall I might not be able to stop myself.

But I really loved taking a shower this morning. Brushing my teeth and shaving in the bathroom produced a feeling of euphoria in me. There’s a big difference in the way my face appears in the mirror when I’m sitting up and when in bed. My face is leaner, not so chubby like when I’m on my back.

In yesterday’s occupational therapy I lifted weights and threw a ball. These tasks were to increase my arm strength. And they quickly wore me out.

It is frustrating because there’s so little that I can do myself. In my heart I still feel like I should be able to walk or put my socks on. What I really want to do most is stand up and pull my pants and underwear up around my hips where they belong. I would also like to sleep on my side, touch my toes, throw something, use a toilet or sit down some where and not have to worry about how I am going to get back up.

All that stuff is beyond my reach. Doing things like adjusting my clothes or even getting dressed is difficult in bed where I’m flat on my back. Add the element of gravity by sitting me in a chair and they are almost impossible.

My greatest nemesis appears to be the bedside commode. I will not be walking when I leave the Drake Center. That means our house is going to require some modifications to make the house wheelchair accessible. Then we have to answer the question of how I’m going to clean myself and use the toilet from my wheelchair. One of the goals in front of me is to learn how to transfer from a wheelchair to a shower chair or a commode. Then I’m going to have to be able to pull my pants down. This will involve leaning. Leaning requires strength to support myself with my arms and that scares me.

In the Today’s Reminder from today’s Courage to Change, the author points out that fear is often a signal that there something we need to learn. All of this fear that I’ve been feeling today is because I have so much to learn.

The night before my first day of rehab

Sunday April 25 2010

I’m writing this from my new room at the Drake Center. The Drake Center is a very well known hospital that specializes in physical rehabilitation. My rehabilitation will start tomorrow, and from what I understand it should be challenging. I’m looking forward to it.

Wait a minute; am I really looking forward to it? Usually I run from challenges.

Since I moved here on Friday the staff has been encouraging me to think of myself as more independent. That means I spend a lot more time thinking about moving before I start moving. I have to pick a goal, and then visualize the steps I need to go through to achieve it.

What used to be a simple job, like taking off my shorts, can take several minutes as I check my environment for obstacles, and then use my hands to position my legs. Next I undo my shorts and rock my hips back and forth while pushing the waistband, little by little, over my hips. It is challenging to negotiate the shorts over my knees and to my feet. Getting the shorts off my feet is also tricky since it again involves using my hands to reposition my legs.

Once I have the shorts off, what do I do with them? I can't put them in the laundry hamper because it's across the room. For that I will need help. Should I ask for help now? Or should I wait until later? Since the idea is to be more independent, I choose the only thing I can do by myself right now. I fold them neatly and try to toss them onto a nearby chair. Lastly, I have to figure out how to get my knees back down. I am damp with sweat and my mind is frazzled.

By the time I finished taking my bath this morning, I stank of the sweat again. I'm also proud that I was able to do as much as I did.

I was able to go to an Al-anon on meeting today (the first in a long time). I talked about my fears and was reminded that this is a process that's going to take a while. I will be working with many people who are professionals at taking people in my condition and teaching them how to live strong and independent lives.

Another thing that bothers me is my whole question about believing in God. Do I really have the faith that I think I have? Or am I alone? I worry that my faith in God has more to do with my hope that He will tell me to pick up my pallet and walk and not be the long-term relationship and that I thought it was. It is easy to look back on something and say “Faith carried me through that.” But to look ahead and say “Faith will carry me through this” is scary.

A friend came to visit me this weekend and I confessed my doubts to her. She was quick to point out that this whole experience will radically change my relationship with God. I told her that she is a good friend. Especially now, when I am so needy.

Is being needy part of God’s plan for me to break me from this illusion of self reliance I have been cultivating all my life? People have told me that I’m a perfectionist. Often, if I can’t do something perfectly; I will not try. But now I don’t have that option. I have to go out and be imperfect and I am afraid I cannot do it by myself.

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.

Acceptance and Hope

The doctors haven’t seen much improvement in my strength level. On the other hand I don't seem to be getting weaker anymore. If I don't start showing improvement, the doctors will put me on immune suppressing steroids or chemotherapy.

I had my third plasmapheresis treatment today. My neurologist told me that sometimes Guillain-Barre Syndrome returns after the initial treatment. He believes this may be the case, although as always he is guarded.

This could be really good news because of all the possible diagnoses that I could have, Guillain Barre Syndrome is the most recoverable.Have it once, get physical therapy, continue life as before. He also was quick to point out that if it return later, such as the next year or ten years, it is not Guillain Barre.

The next step would be to go to a rehabilitation hospital, like nearby Drake Center. That might happen by this Friday. At Drake they would teach me to take care of myself. I understand that there is a doctor there who specializes in neuromuscular rehabilitation and he seems well respected by the neurologists here. While the thought of being permanently disabled is scary, when I think about what my physical therapy could be like, I get weak in the knees and feel a little nauseous. The physical therapist I have been working with here used the term "gruesome" to describe it.

However, weather is beautiful today and I was able to get into the wheelchair and go outside for an hour. The sun was glorious. Adrienne and I felt freed enough to talk about the future. It’s hard to think about the future because the present is so uncertain. What do I have? Am I getting better? Is the plasmapheresis working? There’s so little that we know for sure.

I know that I am supposed to live my life one day at a time. But what do I do when I have to think about the future? This weekend I had a very interesting discussion about acceptance and hope with mys sponsor. Acceptance is about the now. Sometimes it is called "being in the moment." The moment is not always pleasant, such as when there is an unpleasant but irrefutable truth to be faced.

Hope is for the future. It is the opposite of acceptance because instead of grappling with something I can't avoid, I can close my eyes and pray about what I want.

When I experience hope, I am giving myself permission to look at things I can’t control and ask for the best outcome. I usually fret about the future and waste plenty of energy on worry. The trap for me is to remember that just because I don’t know what the future holds, it doesn’t mean that has to be bad. I need to leave room in my heart for hope that tomorrow will be better than today. I also need to remember that today may not be the day I had hoped for but it is the only day I’ve been given and it too will pass.

Monday, April 18, 2010.

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