Excessively Moderate

This is Natasha when she was probably 6.
 I have waited  months to get this picture out of storage.

"Moderation in all things, including moderation."
            Petronius

He Leadeth Me

Sunday, January 8th, we had the pleasure of taking Natasha's daughter, my granddaughter, Mercedes to our new church in Statesboro.  She was very well-behaved and joined in the service to the best of her ability.  She stood when we stood and during the hymns, held hymnal open in front of her, just like the rest of us.  Wow, what a cute kid.  

Anniversaries

This was me, a year ago.

God is good.

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.

Dogs

Wednesday, May 4, 2011 11:34:59 AM

Eloise and Mercedes

Adrienne, Eloise and I went to visit my family last weekend. That is my brother and his wife, my sister and her husband and my mother.

Mom has been in a nursing home since Dad died in 2007. Her Alzheimer's has progressed along its usual lines. I would view my mother in terms of what she was loosing; every time I saw her, there would be less of her there.

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.

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.

“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

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.  

Literal baby steps

I worry that I don't have enough computers

Saturday, September 18 ^th, 2010

I survived last week's computer loss quite well. In fact, I ended up buying a new computer. It's a used Dell netbook that I bought from our neighbors. It came loaded with Windows XP, but I also installed Ubuntu’s Net Book Remix. Typing on the small keyboard is very difficult, but I love its portability. The 10 inch screen is fairly bright and clear, making watching video pleasurable. Which is great because I spend plenty of time watching movies in bed.

The main reason I’ve been watching so much video at night is I’ve decided to stop taking the Ambien to get to sleep. Sometimes I am up until 2 or 3, sometimes I am asleep by 9. I’m not sure why I quit taking the Ambien. Maybe I’m trying to feel like my old self again; the self who didn’t take sleeping pills. Or I’d just like watching movies in the middle of the night (One evening I watched a Barbra Streisand movie and The Exorcist.  There were several similarities.). Which is something my old self did anyway.

I’m feeling a lot calmer now too. The people around me are probably relieved to see that. In my effort to rejoin the ranks of the temporarily able-bodied (the TAB), I’m spending a lot less time in the wheelchair; I would rather sit in regular furniture.

I’m experimenting with locomotion in the vertical position, also known as walking. On our last date night, we left the wheelchair at home and I used my walker. It was tiring and I was in a lot of pain later, but it felt so good!

One of my biggest challenges is relearning how to move my feet. I can lift up my leg at the knee and move my hip forward then put my leg down, but I have to concentrate on placing my foot. Otherwise it just tends to flop and drag my toes along the ground. Not very sexy.

The other big challenge is keeping my balance while I walk. I can’t stay upright and unsupported for more than a few seconds. Adrienne said that at first she thought I looked like a toddler, then she realized it was more like Frankenstein's monster. For the first time, living in a small house has an advantage. As I careen about the house on my journey, being able to reach out to a nearby wall and steady myself is a great comfort.

These journeys represent my attempts to rejoin the TAB. It’s easy to get discouraged at how short the trips are and how quickly I get tired; just walking from the office to my bedroom was cause for a brief nap. But then I remember how long a journey it has actually been, and I feel a sense of pride in myself and gratitude to the Lord.

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.

My First Steps

7/29/2010

Praise the Lord for what he has done for me. Click the link to see the video

It’s all good

Wednesday, June 16, 2010

There is really good news, like praise God for the miracle of modern science good news. The treatments are working. After the second or third day of IVIG treatment, and a week on steroids, Alex noticed that my strength was returning. I could pick up my tray table and move it off me. While transferring from the chair to the bed, legs moved. I am getting stronger every day. I just spent 20 minutes cleaning up the scraps of my lunch and putting the dishes into the dishwasher.

Here's a list of some of the things that have improved:

• Confidence with my transfers; I was never certain when my arms would give out and my body would pitch forward into space. Having confidence that I can support my upper body without having to worry about my elbows buckling makes getting from place to place a lot less scary. My legs have improved also.
  
• Feeding myself; I needed help getting the food into my mouth. Even with a special device over my fork, I couldn't hold it even with both hands.
  
• Wrist strength; I no longer hit myself in the face with my fist. I'm also better at picking things up and putting them back down.
  
• Getting dressed; I can change shirts by myself.
  
• Typing; I still rely heavily on voice recognition software for my phone and computer, but I've regained in the ability to push the keys.
  

Immediately after finishing my last IVIG treatment for the month of June, the hospital's free wheelchair accessible transportation took me to see my local physician. It was a very informative appointment. He was very helpful, taking great pains to answer our questions. For once Adrienne didn't have to position herself between the physician and the door to prevent him from leaving, a problem we often have with neurologists.

He upped my metformin, my oral diabetes medication. I am also doing daily blood tests

Starting tomorrow I'm going to begin taking Wellbutrin for depression and to quit smoking. The reason I decided to quit smoking now, or least once the Wellbutrin starts to take effect, if the IVIG does not work, my best hope will be to get into a clinical stem cell trial. Which I'm sure if I'm smoking I would automatically be disqualified from. Note to myself, is this an example of irony? I don't think so. I think it might hubris, with the consequences of my decision to smoke being greater and much quicker than I had expected them to be.

As soon as it arrives from a mail order pharmacy, I will begin taking Cellcept, an immunosuppressant. Yesterday I asked my physician if I should get my tattoo before I started taking this medication and he pointed out that my immune system has already been compromised by the steroids. No more tattoos for me.

My physician informed me that because I'm taking steroids, a surgeon would be reluctant to operate on me, any wounds will take longer to heal, and there is an increased risk of infection. I've already begun to fantasize about what fatal microbes I might be inheriting from every handshake or cough.

I still push against my own perceived fears; today the three of us took a trip to the mall and I was instantly overwhelmed. I was aware of how small the world my world had become. I felt like I was a very tiny person living in a world of magical giants. I was awestruck by the amazing things that they could do..

I used to enjoy roaming through the stores in a mall. It was a good stress relief for me. Going into a store on my own the first time was intimidating, a feeling that was exacerbated when I knocked over a pile of boxes. The hats I wanted to look at were out of my reach, but I was quickly surrounded by every available clerk in the shop. They helped me find the ones that fit me, but were reluctant to help me move my chair over to the mirror (the carpet was very thick). This became a pattern; the salespeople either pretended I wasn't there, or they mobbed me. Being ignored made me feel frustrated, but all the extra attention made me feel nervous and anxious.

The mall was a great opportunity for me to practice interacting with other people. I didn't realize how hard it had become for me to talk to a complete stranger, unless they're a medical professional. There was a giddy moment when I rolled away from my companions to check out the watch counter at a department store. Watches, I explained to the lady behind the counter, were like crystal meth to me and I was fixing to score. I had no intention of buying, but it was thrilling to put beautiful things on my arm and admire them. She practically threw a variety of beautiful watches at me.

I had forgotten how much I enjoyed looking good. I used to take pride in my personal appearance. Wearing a fashionable shirt and a clean pair of slacks gave me a sense of self satisfaction that I had grown used to and accepted as I've gotten older. I would admire my accoutrements and view them as signs of success and maturity. I gave all that up when I went back to the hospital in April. Since then, my wardrobe has consisted of shorts and T shirts.

While in the mall I faced another significant challenge; using a public restroom. Presently I am unable to do buttons and zippers. Therefore going to the bathroom requires a companion. Fortunately for me, Alex volunteered to help. He also gave me a quick Spanish lesson. He also noticed that there were special cutouts under the sinks to make them a wheelchair accessible. This was another first for me; I was able to wash my hands at a sink.

Some goals for the future:

• Buttons and zippers
  
• Sit up in bed
  
• Use my feet to move my wheelchair
  
• Turn my bedside lamp on and off
  
• …
  

My step daughter Natasha asked me to describe what my world is like. My world is very small. And what is big in my world, is tiny in hers. Despite the obstacles, I am grateful for the process I am going through because I hope to rejoin her in that big world of magic and wonder. The process of getting there will be a journey filled with miracles for me and I will praise God for each one.

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.