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.

New directions

Sunday, May 16, 2010

I went to church today. There were many firsts involved: The first time in public in a wheelchair, first car trip, first time I went to someone instead of them coming to me.

Whenever we move to a new city, we always go church shopping. We found a great church in Oxford's Faith Lutheran. The atmosphere is warm and welcoming, the music is lots of fun and the Sermons are always thought provoking. Logan, the church's pastor, is a wonderful man. He came to visit me several times at home and in the hospital since I got sick. It felt good to celebrate this next phase of my recovery at his church.

I got home Thursday afternoon and felt like an alien in my own home. It wasn't the changes in the house; new, wide doors and lower cabinets to help with accessibility. It was the change in me. I am not the person I was when I left the house 32 days ago.

People have been asking, "How does it feel to be home? " Usually I tell them that it's good to be home, I am glad to be here. Those things are true. What is also true is that being home is a frustrating: My wheelchair is a little too large for our narrow hallway. Getting in and out of the bedroom and bathroom is tricky. It is also difficult to learn how to use the new equipment I brought home with me. I'm still shocked by how weak I am. And I am totally dependent on Adrienne and Alex to help me with everything.

On Friday night I had a meltdown. After two days of helping me do my transitions from wheelchair to bed or commode, Adrienne was in a lot of pain. Her back was sore from all the extra work. She needed to go to bed and rest. At around 7:30, I started to panic. I felt like I was trapped in the bed. The harder I struggled to control my feelings, the more intense they became. When Adrienne asked me was wrong, I burst into tears.

I didn't want to be weak. I didn't want to depend on her to get me out of bed. I didn't want to hurt her. I begged God to show me what I needed to do to change my life. Was it my pride that put me in this wheelchair? Had I failed some test? Was I guilty of not working hard enough? I cried harder and harder, searching for something that I could undo that would bring me out of this bed and on to my feet again. Just like I used to be.

Realizing that I needed more help than she could provide, Adrienne suggested calling Pastor Logan and asking him to come over. Knowing that I could not think my way out of this cave I had gotten lost in, I agreed. It was as if I looked up and saw a tiny point of light; this was a well not a cave. There was help and help was lowering a ladder to rescue me.

Logan heard my fears. He was compassionate and supportive. He reminded me that Jesus was everywhere. That means that Jesus is with me.

So, how do I like being home? There's no place I would rather be. I still have my friends and family and my faith to take me through today. And today was a good day: I went to church, I rode in a car, I ate three meals a table, I sat my wheelchair for 6 hours, talked with family, visited with friends, and depended on Alex and Adrienne to help me with what I couldn't do myself.

I'm also glad to see my pets again. Eloise, Frannie, and Olivia were overjoyed to have me back in the house again. Even Thor showed some excitement.

Going Home

Tuesday, May 11, 2010

Preparations are in full swing for me to return home. I am excited and nervous. Mostly I am nervous.

I woke up this morning feeling extremely anxious. Going home is a big deal. I am afraid that there are too many unknowns. I want to say that I am comforted and reassured and being held, but to put on any kind of brave face would be a lie. My intellectual knows that I am protected and I will be healed, but my emotional is in panic mode.

Since yesterday I've been telling everyone who will listen that I don't feel ready to go home for. Being able to say these words help. Then I think about all the support and encouragement I have received in the last few weeks. The first one that comes to mind is this, "God won't bring you to it unless He's going to bring you through it."

Next, I remembered to pray for God's grace; the grace to do His will and accept whatever comes before me. I received a book in the mail last weekend called "Why? Trusting God when you don't understand." This verse is before the first chapter; "Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5

As I was reading that verse, a woman came into my room and told me it was one of her favorites. She reminded me that God was caring for me. Being reminded of God's power and his love for me was very powerful.

Then I went swimming. Going swimming involved using a hoist chair to get me into the water and flotation device to keep my head above water. Once I got used to being in the water I found out that my legs worked! When my therapist took me out into the pool and I could see my legs pumping and kicking underwater I began to cry tears of joy.

In preparation for my discharge, Adrienne has been coming to the Drake Center to learn how to care for me when I return. I think it is a relief for her to actually be able to put hands on me and help me through the challenging tasks in my day. It's hard for me to ask her to do these things to me. It's as if they are too intimate. She treats me with gentleness and sensitivity and courage. While I appreciate her gentleness and sensitivity, her courage inspires me.

Having her here with me, she sleeping in a cot next to my bed while I write, and her learning how to help me makes me very happy. It gives me an even stronger sense of hope for the time to come. I'm excited about going home. It will be challenging, but I think it will be challenging in a good way. The first time in over a month, I will be in my own home, surrounded by my own things.

Plus, for the first time in over a month, in I will have a reliable Internet connection.

 

Speechless

Saturday, May 8, 2010

Just a quick note before I sleep. It's been a pretty exhausting day. But I want to share a couple of things. First of all, how do I express gratitude to a group of people, many of whom I barely know, who devoted their day to helping us out? Adrienne called on friends and family to come to our house today to clean, to paint, to repair, and to fix up our yard. She said that probably 15 people spent the day working on our house and yard today.

The other thing I want to share is personal. Last Saturday I had occupational therapy group. We did a series of exercises to improve arm strength. I was the only one in the group that couldn't use the weights for the exercises. The exercises were too hard. I couldn't even do 10 of some. In today's occupational therapy group, I did the same exercises with two and 3 pound weights and my hands! In PT I sat upright for half an hour and played catch. This time, I don't know how to express my relief at seeing my improvement.

So what can I take away from today? The first is reinforcement that God is speaking to us through other people. His love surrounds Adrienne and me and He is caring for us.

Secondly, He is touching me, making my body stronger. He is helping me with my fears and saving me from much of the physical pain that many people with Guillain Barre experience.

What a day!

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.

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

Two 20th century men

Saturday, May 1, 2010

I really like Cab Calloway, the depression era jazz singer known for his rich baritone voice and call and response style songs. The music was very energetic; the songs were often upbeat, and full of wordplay and scat style singing. He would bellow out in his fine, rich voice “Hi Dee Hi Dee Hi Dee Ho!” then the band (and presumably a live audience) would respond “Hi Dee Hi Dee Hi Dee Ho!”

Before we were married, Adrienne and I visited New Orleans. One day during our visit we went to a jazz history museum. On one poster, in the right corner, I saw Cab Calloway’s autograph. I paused for a moment to consider what I was looking at. This poster with its faded letters and graphics had actually been held in the hands of the dynamic singer. Not only had he touched this poster but he had put his name on it as proof that he had been there. It was like there was a bit of him before me.

Last night my nephew David and his wife Robyn came to visit me on their way to David’s nephew’s First Communion. We spent a great hour talking with each other. As David and Robyn were getting ready to leave he reached into his pocket and pulled out a green velvet bag. Because of my faith in Christ, he told me, he wanted to share something with me.

He told me about Padre Pio, an Italian priest who died in 1968. He was canonized by Pope John Paul the second in 2002. This saint was known for experiencing stigmata, literally showing the wounds of Christ on his own body. He wore gloves to cover the wounds on his hands. Inside the velvet bag was a rosary that they had acquired while vacationing in Italy. This rosary had sat in the palm of one of those gloves and been blessed. Twice before David had given his rosary to people who needed healing in their lives and they had returned it to him after they had been cured. He hoped that I would keep it and it would help me.

For the rest of the night as I held the green bag with the rosary on my weakened muscles, I thought about what a great privilege it was to have a gift like this given to me wholly unasked for and unexpected.

While holding the rosary in my hand I was reminded of the Cab Calloway poster and how I felt standing in front of his autograph. I can believe that the healing power of Christ has come to me through this rosary.

Last week I was worried that my faith was insufficient. I have come to believe two things. The first is that it is easier to believe then to not believe. The second is that belief might not be felt in words but in experience. Just because I say I believe in something doesn’t mean I can explain what that belief is.

On a side note, I am very grateful to my friend Steve for bringing his whole family to visit with me today. Not only did they bring their love and support, they also brought the gift of laughter I can’t remember the last time I laughed that hard.