Why am I writing this blog?

Euclid (Cleveland), Ohio, United States
Here I share the amazing spiritual journey I began on July 19, 2007. I received the diagnosis of a golf-ball-sized tumor on top of the left parietal lobe (motor functions) of my brain. I had severe symptoms all up and down the right side of my body and had received an MRI scan of my brain. In August 2007, I learned that my diagnosis was a Glioblastoma Multiforme (GBM). This is a common form of fast-growing brain cancer with a challenging prognosis. That's the external story about that moment in time. In the spiritual world I found (actually more like it found me) what I came to call the Fact-Based Spirit-Guided Path, and I began an amazing journey. After October of 2008, I lost the use of my right arm, and in early 2009, my cognitive abilities were struggling, and treatment options ended. My wife, Susanne, then began doing most of the blog postings, with my review and input whenever possible. I continued to apply the Fact-Based Spirit-Guided Path as the adventure continued. My soul then flew to the Kingdom of God on July 1, 2009. Thanks for your interest in my journey. Craig

Susanne's Perspective

During this entire journey, my wife, Susanne, had an entirely different kind of experience. Initially she added comments to some of my posts describing her experience of the moments I discussed and offerred perspectives on our relationship. In the latter stage of this journey, she is writing the blog, as I am no longer able to do so. I am truly delighted that she is doing so. Susanne and I work together as marriage educators/relationship coaches and she has written many books on preparing for and strengthening marriages so you can count on her comments to be insightful and poignant.

Wednesday, August 15, 2007

The Physical Side of Rehab

On Wednesday someone from every department visited me—medical, psychology, speech therapy, occupational therapy, and physical therapy. Each had forms, questions, and things they wanted me to do while they observed. By the afternoon I was ready go downstairs for the scheduled rehab sessions. Each morning and afternoon I was provided with 1-1/2 hours of therapy divided between Occupational Therapy (OT), where the person is taken to the maximum level of independence within the level of functionality they had achieved, and Physical Therapy (PT), where work is done to attempt to improve the functionality.

Since I was using a walker, OT meant learning how to use a walker safely. For instance, I had to get around a kitchen doing various tasks while using one. In PT, I was getting off the walker onto some parallel bars to work on balance, improving the use of my right leg, and other activities. This proceeded through Thursday. In parallel with this, Susanne was in discussion with the Social Worker about the future. Indication from the insurance company was that they would cover me staying for about a week and then reassess my progress. The staff felt they could get me functional with a walker by that time.

Susanne produced a document for the staff with extensive photographs of our house and attended one of the OT and a PT therapy sessions. I was very clear that she was getting disturbed about the prospects of me in a walker in our house, which has many sets of stairs and uneven surfaces. I resolved to do everything I could to get off the walker. By this point I was beginning to get well grounded in the implications of the Fact-Based Spirit-Guided Path and it was clear that, if you need facts, then ask the right questions and keep asking until you get what you need. I showed a therapist the pictures and asked for her thoughts on how someone using a walker might function. I could get see her eyes bugging out of her head. She made suggestions about removing throw rugs, etc. I then said, “As far as I’m concerned it’s out of the question for that to be my state when I’m discharged. I request that we shift our focus such that, if I’m not fully ambulatory at discharge, that I require only a cane.”

The other insight I had was that, on occasion, I had to politely guide my own treatment. She said to me, “OK. Please get up on your walker and I’m going to carefully observe what happens when you walk.” I did so and within a minute or so she said, “What you appear to have is a condition called Drop Foot. What that means is your Anterior Tibialis muscle (Front Shin Muscle) is not working.” Hallelujah….a FACT. She then used a length of gauze to create a makeshift support for my lower right leg and asked me to walk. World of difference. She explained that she was simulating a working Front Shin Muscle to prove her hypothesis. We proceeded, without the walker, to see how I well I could do out in the hall. A little shaky but wonderful. She was right there guiding me as was appropriate. We then successfully tried the stairs! When Susanne arrived for lunch I excitedly shared the progress. She agreed that it sounded wonderful, but I could tell it did not remove the WALKER image from her mind. I returned to OT in the afternoon and requested to work with the same person. We went to a table and she pulled out the stuff she’d brought from home…Velcro, webbed strips, etc.…the therapist’s office version of creating something with spit and bailing wire [this is an obscure expression that may not mean much to some folks] and went to work with scissors. She attached some pieces around the bottom shoelaces, taped a band around my shin and connected the two with the webbed strips. It was very clear what she was doing. Once she had it in place we had a wonderful time walking around with a cane. The PT person I then worked with had me using the parallel bars and asked me to move my left and right feet in a certain order as I walked sideways…I immediately recognized the steps of the dance Hava Nagila…complete with the dips and bounces. I was elated and couldn’t wait to share my triumph with Susanne.

I attended a very nice chair Tai Chi class the next morning (Sunday) and had one PT session in the afternoon with strengthening exercises. On Monday, the physical therapist found an ASO (Ankle-Shin Orthosis) brace to insert it in my shoe to replace the makeshift brace from the weekend. I was fully ambulatory with it and a cane. The department heads all met Monday to review my progress, so right after the meeting 5 ladies in white jackets came walking into my room to speak with my wife and me. Each reported in on their disciplines and identified what was remaining before I was safe to be discharged. The conclusion was that I could be discharged Tuesday or Wednesday to home. We chose Tuesday. That afternoon, I then worked on the necessary skills and chair for showering.

I then I fell into a wicked trap. I somehow made up that I had progressed as far as I could, and I began in my mind to develop a whole new persona, to go along with the transformed inner me, that had a certain flare around the cane. I figured I’d have a good time picking out just the right customized cane. As Susanne came into my room later on she overheard me waxing eloquent with a business colleague about the quest for just the right cane for the new me. As I hung up, our friend Elinore arrived to provide another Jin Shin Jitysu accupressure treatment, which she and Susanne did together. While she was working on me, Susanne asked about the cane comments and asked what medical person had told me that my condition would be permanent and told me I had made up a story. I closed my eyes and told her I didn’t want to talk about it. Inside I went “You fool. You just extrapolated an incredible fantasy based on NO FACTS.” When Elinore left, we headed out to the gardens for our evening sojourn. On the way I said, “I really want to thank for spotting and popping the trap I fell into. Of course I’ll do all I can to get that muscle back and get rid of the brace and cane. Thank you so much.” All I had the next morning was an early PT session where I was issued my own cane and provided with an elastic band and exercises to do.

Once the discharge paperwork was in order, I made my joyous exit, Susanne drove me down the street to register for Out Patient Rehab, we stopped at the drugstore to fill prescriptions, and we went home. I can’t tell how wonderful it felt, after 2-1/2 weeks in 2 different sterile hospitals, to walk into our sensory-rich and inviting home.

1 comment:

Anonymous said...

The rest of the story…

The rehab hospital was a relief for me after the days at the first hospital. Craig was on a regular schedule. We prayed over the phone in the morning, he ate breakfast and did his therapy, and then I joined him for lunch. I met with hospital staff and then went home, returning again after dinner. We had far more privacy, allowing us to close his door and snuggle in his bed or have private conversations. Visitors and calls came in, but at a lighter pace than before the surgery. Although some of our discussions were difficult, it helped that we were out of the intense medical environment of the other place and often out in the hospital’s Healing Garden. And yet, Craig’s medical needs were fully supported.

I admit it was difficult watching Craig walk with a walker, at both hospitals. While I was definitely glad he was walking after the surgery, it seemed like it aged him forward about 30 years. I had a contractor come over to the house and go through it with me to assess safety hazards and workability with a walker. We gave up in despair that Craig coming home with a walker could happen with all our stairs and uneven surfaces. I began to wonder about having to move in a hurry to a new home… Seeing Craig’s ability to walk with a cane was such a relief.

As the steroids began to be decreased, it became somewhat easier to confront Craig when he was “delusional” and handle issues in a more rational way. When the drug levels were at their highest, he couldn’t listen to my input if it was different from his. However, blessedly he was usually “high” as opposed to “depressed”, another common side effect.

My feelings about Craig’s discharge were very mixed. I was unsure whether he had done enough therapy. I was happy that the staff felt he was ready to be home. I thought he would benefit from being at home. He was giving me a hard time about sleeping in the guestroom away from stairs instead of upstairs in our bedroom. He had been in an environment where a team of people responded to his every need at the push of a button, and now it was just me. I knew I wouldn’t trust leaving him home alone initially, and I wasn’t sure how long that period might be. I was uncertain whether I would recognize in time any serious health issues that occurred. I was being reminded of difficult hospital discharges from my previous marriage.

And…we were on to a new phase in Craig’s recovery…