June 3, 2019
Have you ever watched an emerging toddler begin to take their first steps? It is often halted and usually involves a good deal of falling. When our children began to walk, what I remember most was their arms outstretched and looking straight ahead. As we cheered them on, I don’t recall analyzing their foot placement or making any judgment about how awkward they looked. We knew that we were on the cusp of a new stage parenting. Tears and cheers were inevitable. Bouncing and bruising would be a part of this new territory. Most kids don’t give up; they instead rise to their feet and take another step forward. It isn’t long before they are running all over the place.
Learning to re-walk is not as simple. Where a toddler’s gaze is straight forward, my tendency has been to look at my feet. Somehow, I felt that by watching where my foot landed, I would be less likely to fall. I’ve been concentrating on the individual step instead of my overall forward motion. What has been unusual is that it is my right foot that comes up short. The stroke affected my left side. I have little strength in my left ankle. It is reasonable to assume that my left would be hindered and not my right. Why the short step? It all boils down to fear.
I have been afraid of falling. At this point, I should have perfected it by now. It has been at least six weeks since I last fell. In order to walk correctly, I have to take a full step and trust my weight to the affected side. There is a reasonable amount of faith that it takes to shift your weight from one side to the other. It’s not something most people ever think about, but when your strength has been replaced by weakness, you see everything in a different light.
My maternal grandmother was besieged by minor strokes. Her balance was affected, and she fell numerous times. Her response was to sit in a wheelchair and never walk again. The capability was there, but she chose not to take that risk. I understand that fear, but I have been unwilling to give into it (at least most of the time.) Re-learning how to walk raises the risk of falling. That fear exacerbates my strength. I feel I might be further along in my recovery if fear was not a factor.
Last week I got mad. I came to the conclusion that I was leaning too much on the wheelchair and not enough on my own strength. I realize this might sound like heresy. I know where my strength comes from, and I’m not advocating trusting myself over trusting God. I needed to step out in faith, take my eyes off my feet, and change my focus. I wanted to push myself and free Judy from having to load the wheelchair in and out of the car. I began to slowly wean myself off of my reliance on the chair.
Last night we put the wheelchair in one of our guestrooms. This morning I walked into my home office without my wheeled friend. I loaded my computer into my backpack, throwing it over my shoulders, kissed my wife, and walked out to my car. Today would be the first time in nine months that I would drive on my own. Judy and I took a test run yesterday, but today would be the real thing. I felt like a schoolboy walking away from home for the first time. We took a picture, and I begin the short drive to the church. I felt independent for the first time in nearly a year. The trip was without incident and it took me longer to walk from my car to my office then it did for me to drive from home. The California sunshine finally beat back the June gloom this afternoon, and I drove home with the top down and blaring the soundtrack from Hamilton.
Another lesson learned. Take my eyes off myself and focus on what’s in front of me. Don’t just look at my steps but how they work together to reach my destination. I am sure I will face setbacks as the days of the calendar move on, but I am asking the Lord to help me see beyond the individual steps and run the race set before me.
June 2, 2019
Today was a day of Post-stroke firsts. We left the wheelchair at home and walked into church. We also did a “trial run” of me driving to and from the office. I packed my backpack with my computer, put it over my shoulders, and walked to my car. My only regret is that it was too cold and cloudy to take the top down. Tomorrow I get to do this unsupervised. I feel like a big kid now!
May 25, 2019
Today marks the beginning of the fourth quarter (yes, I used a sporting analogy!) It has now been nine months since my stroke. I find myself both encouraged and frustrated at my progress. I spent some time today looking back at my blog (www.faithanddoubt.life) and recalled certain aspects of my recovery. I now can move my toes with little effort. My hand has been slow to acclimate to its new condition, but I can now move my fingers both inward and outward, albeit very slowly. I remember the night that I was able to make my toes move. We were watching an episode of God Friended Me, and I just started moving my right toe in hopes that it would encourage my brain. Since that night, it is become much easier to move my toes. My fingers and hand are a different story. I have been able to move my thumb for months, but the strength in my fingers and grip overall are not anywhere near where I want them to be. It has improved by nearly 50% since beginning occupational therapy. I even carried a couple of pieces of paper from the main office to my own a few days ago.
It is encouraging to know I am improving. Honestly, I never thought it would take so long. For those of you who have been following my journey, you will remember when I was discharged from the hospital, I was able to raise my hands and to walk but soon reverted to not having any ability to do so. I was wheelchair-bound for at least four months. Now as long as I don’t have to carry anything, I try to walk. I know that I make people around me nervous. I heard my assistant tell my wife the other day that she keeps an eye out for me whenever I walk Through the lobby. I so look forward to the day where no one worries, or I don’t have to cognitively think about every single step.
Most of us put no thought into getting out of bed, getting dressed, using the restroom or walking in our own homes. I have to think about every step, and honestly, it’s getting old. I have always been very independent; I find myself getting frustrated when people try to help me. I believe my attitude is sinful. I need to learn, and I am learning that God’s grace is being shown to me by the care of those who are my friends and even strangers.
I am forever indebted to my wife, who puts up with my moodiness and my demands. I am grateful for our church and the care that has been extended throughout this process. I am thankful for friends that have expressed love by their presence and attention. I have always cried at the end of the movie, It’s a Wonderful Life as George Bailey comes to an understanding that his life is essential and his friends invaluable. I found myself doing the same thing as I contemplated writing this entry.
I pray that I will not forget these lessons.
May 16, 2019
Hard to believe that it has been nearly nine months since my stroke. I have gone through devastation, optimism, frustration, and somewhere lived in between it all.
In some ways, I had acquiesced to the fact that I might never gain full functionality again. Judy suggested recently that I/we were not doing enough when it came to exercising my left hand. I remember glancing out the window blankly and having the feeling “why bother?” I was frustrated with myself for getting to that point. Everyone keeps telling me that I am progressing nicely, but I find myself continually frustrated that I am not anywhere near where expected to be this far into my recovery.
I was so frustrated that it drove me to action. We started acupuncture a few weeks back. I am using the electrical stimulation unit that we had put away. I had Botox (a Neurotoxin) injected into the muscles that are causing my left hand to clinch and therefore not allowing me to exercise my hand, and I have continued therapeutic massage even though at times it hurts like hell.
One of those things seems to be working. Yesterday I was able to give the thumbs up sign with my affected hand. Today I was able to move my index finger and my ring finger. These are small victories and a far cry from complete recovery, but it’s better than last week.
Tonight at dinner, a good friend (who happens to be a therapist,) asked me, “how are you really doing?” Since I am very familiar with that inquiry and have been known to ask it in a way that cannot be answered without being totally honest, I replied I have good days and bad days. In retrospect, there have been many more good days than bad ones in the past month. I am encouraged by that reality.
I am praying that I will have some semblance of wholeness buy my anniversary (both wedding and stroke) on August 25. If I don’t get there, I will be frustrated, but I am alive. Today I am clinging to the promise that Paul, a follower of Jesus. wrote two millennia ago: And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. ~Romans 8:28
March 26, 2019
Since this began a bit over seven months ago, I have tried to portray an honest look into my life and dealing with the aftermath of a traumatic brain injury. Many of you asked how best pray so; I want to give you a clear picture of what I am dealing with daily.
I expected my recovery to be uneventful. The doctors and therapists told me that if I worked hard, I should expect to lead a normal life. With the exception of a neuropsychologist, no one talked about what I may experience in the days, months, and years ahead. With that statement, he was only talking about my emotions and how they might affect my judgment. When I checked out of rehab at the end of September, I was optimistic.
In the months that have followed a number of severe side effects began to emerge. Although much better now, my left shoulder became dislocated. The muscles that kept that joints intact no longer supported the weight of my arm. Sleeping was difficult, and any movement was extremely uncomfortable. After some prodding (and a bit of complaining,) the physical and occupational therapists began to focus some attention on strengthening that area of my upper body.
Back in early November, something began to change in terms of pain. The stroke itself (at least in my case) was not painful, but in very rare instances it can lead to Central Pain Syndrome:
Central Pain Syndrome (CPS) is a neurological condition caused by damage to or dysfunction of the central nervous system (CNS), which includes the brain, brainstem, and spinal cord. This syndrome can be caused by a stroke… The character of the pain associated with this syndrome differs widely among individuals partly because of the variety of potential causes. Central Pain Syndrome may affect a large portion of the body or may be more restricted to specific areas, such as hands or feet. The extent of pain is usually related to the cause of CNS injury or damage. Pain is typically constant, may be moderate to severe in intensity, and is often made worse by touch, movement, emotions, and temperature changes, usually cold temperatures. Individuals experience one or more types of pain sensations, the most prominent being burning. Mingled with the burning may be sensations of “pins and needles;” pressing, lacerating, or aching pain; and brief, intolerable bursts of sharp pain similar to the pain caused by a dental probe on an exposed nerve. Individuals may have numbness in the areas affected by the pain. The burning and loss of touch sensations are usually most severe on the distant parts of the body, such as the feet or hands. Central Pain Syndrome often begins shortly after the causative injury or damage but may be delayed by months or even years, especially if it is related to post-stroke pain.
Yes, it is as unpleasant as it sounds. Depending on the time of day the simplest of touch feels like being cut. At times, it feels like an electrical current running through my person. My body is unable to regulate between being hot or cold. The intensity is worse when I am tired or overstimulated. When I get home, I can be grumpy and want to hibernate. Quiet is my friend.
I have been battling depression now for seven months. At times; it can be crippling. I saw a neurologist in February who advised me that CPS could be permanent. That was hard to hear. The medication prescribed to help with it had a side effect of swelling on my affected side. Within a short period of time I gained 10 pounds and no longer could quickly put on my shoes. That particular medication has been replaced with another that does not have the undesired side effect, but it also has not stemmed this phantom pain.
Another major shift has been learning to deal with overstimulation. Those of you who know me well understand that I am an extrovert. Years ago when I took the Myers-Briggs personality assessment, the result showed I am an extreme extrovert and an extreme feeler. Being around people has always been something that energizes me, but at the moment it is doing the complete opposite. The past few days have been filled with conversation and social gatherings. I love being with people, but find myself dealing with exhaustion which amplifies CPS. It is a bit of a vicious circle. Next week I will be at a gathering of 5000 pastors that I have attended for the last nine years. It’s loud, fun, and inspiring. I’m not so sure how long I will last.
I am sorry this post is a bit of a downer, but I wanted everyone to know what precisely I am dealing with and ask you to please pray that this will go away. I am thankful that I have friends who care about us and pray for us. I do believe God gives us the st
March 17, 2019
From my office at the church to the main office is only about 12 feet. A couple of weeks ago I decided to cross what I dubbed as “the expanse” from the one to the other. It is much easier to roll in the wheelchair or to walk with a cane, but I decided to make that crossing on my own. The office staff cheered me on, and I felt accomplished. The more substantial challenge would still face me, the Atlantic.
The gulf between my office and the men’s restroom is vast. On Wednesday of last week, I decided to set my sails and cross that ocean. I pretty much began second-guessing myself about 20 steps into my journey. What if I fell? The “what ifs” began to swell in my head. Our volunteer receptionist pressed into the book she reading and did not look up. I’m quite convinced that she was praying and chose not to watch my awkward advance. It took nearly 10 minutes to make it to the restroom and opening the door was a challenge in and of itself. After taking care of business, I leaned against the wall and took a couple of deep breaths. Should I call my assistant and ask for help? My pride simply said no. And I once again set out to conquer the open sea. About halfway across I hate debated stopping for brake and with a high table in the lobby but decided I merely needed to walk. My friend, Pam, noticed as I approached my office and began cheering me on. When I finally sat down, I was exhausted but hopeful.
Many of you who are reading will want to applaud the accomplishment, but what I discovered and continue to learn is that fear can be paralyzing. The crazy thing is when I take steps it is not the weakness in my left leg, but rather the fear of falling that causes my strong leg to come up short. My right step is stunted because my brain is telling me I need to compensate for the limitations of my left.
I want to take back the many times I used the verse that states “Perfect love casts out fear.” I trust God implicitly. I know Jesus loves me. Am I still fearful with you each step? Certainly. When you stand 6 feet tall, it is a long way to ground. It would be safer and more comfortable to rely on assistance. None of us remember learning to walk, and that is a good thing. Babies fall, pick themselves up, and continue. They do not even consider the fact that each step is a dangerous journey. Somehow I need to remember that lesson. I need to take my eyes off my feet and look straight ahead toward the ultimate goal, that I’ll be able to pop back on the bike or chase students on the field at camp.
I chose the metaphor of the Atlantic which is a smaller ocean than the one closest to us, the Pacific. I have not yet decided what that looks like, but I will continue to train so when I face it I will successfully be able to cross.