Wednesday, August 4, 2010
I feel like a new person. I'm not sure who that is but his life is very full and active. My house is also full and active with my granddaughter running around, Alex and Adrienne working on their projects, and this week my mother in law, Lola is visiting.
I love sharing my house with my granddaughter. She is a constant source of joy to me, and noise. For the last day she has been sharing things with grandpa. If Nana gives her a cookie, she brings it to me and offers me a bite. Of course reciprocation is the downside to this; if I have something she wants she just takes it off my plate. Indulgence is the first role for grandfathers, so I am happy to let her have her pick.
My physical recovery is still progressing rapidly. I am certain that I will be able to stand on my own soon, walking independently can't be far behind. I hope.
CIDP is a very serious illness. I have the attitude that I am lucky, my symptoms have retreated and my body is well on the way to mending. A quick look at some CIDP discussion forums on the Internet last night reminded me of how unpredictable this sickness is. Severe recurrences are not unheard of, sometimes the illness develops a tolerance for its treatment drugs. More than once I've read someone who went to sleep fine and woke up paralyzed, unable to talk.
The next phase of my recovery is to figure out the minimum amount of medication I need.
And I'm continuing to redefine myself now that I left my Able Bodied Person status behind. With the help of friends, I'm continuing to expand my world by spending time outside the house without my family present. Last week I reached a milestone when I returned to the coffee shop where I had spent many happy hours, drinking strong coffee and playing on my computer.
Wednesday, June 30, 2010
I had my follow-up appointment at Drake Center today. The high that I been feeling the last couple of days due to my increased strength and energy and independence, was dashed by the actual numbers. When the doctor checked my strength, I showed little or no improvement since I left the center. Most distressing was my hands, which formally had been able to pull at 8 pounds of pressure, now could barely register.
I fumed for hours, surrounded by a dark cloud of cranky precipitation I rained on everything I could. At one point in the day, Adrienne said to me, "Please bring back the nice Michael, the kind Michael. I don't like this one."
The doctor asked if I declined after I left Drake. I reminded him that I was declining while there. He just didn't believe me. That was somewhat satisfying.
The truth is I'm adapting well to my new life. I have become more active, more involved in caring for myself than ever. I clean my own dishes, give the dog her medicine, and go in and out of the bathroom. I still struggle with buttons and zippers though. That is going to take some time and maybe some creativity. Adrienne thinks she might be able to build something that will help.
Gone are the days when I couldn't brush my teeth or feed myself because I didn't have the strength. My legs, shoulders and abdomen are recovering. My further extremities will recover when the nerves are repaired. That is going to take some time.
I'm going to be in a wheelchair for a while, and I am OK with that. I have seen that I'm capable of recovery, and that is the best news. I will continue to widen my circle of activities and work towards independence.
My granddaughter Mercedes has come to visit us for the summer. She's a delightful child, two years old, blond hair and blue eyes. She is very active and she loves to laugh. Of course being a two year old, she is still a two year old.
She is very curious about my accoutrements: the wheelchair, the mantihose, and transfer boards. She helps out with my transfers, getting the board from its storage place and bringing it to me, taking the legs from my chair and putting them in the trunk of the car when we're going someplace, and best of all yelling Go Grandpa go!" when I slide across the board.
I am so blessed.
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.
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.
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.
