I am quite aware that many of the things I share can relate to other causes such as aging. Again, allow me to say that one of the problems for me is distinguishing between the problems created by my condition and the problems created by aging. I never understand what is caused by age and what is caused by the problem.
An illustration: In the early period of my diagnosis, my neurologist learned my history. She said to me, “Were it not for your problem, you could live to be 150.” That was given as, and I understood it as, a personal encouragement. It was a statement of appreciation for my past lifestyle. She wanted me to understand clearly that what was happening was not “my fault”—she wanted me to understand that if I had done differently, the problem still would have happened.
The deterioration has occurred at a rate much slower than expected. I have reason to believe I was expected to be confined to a wheelchair much earlier than now. After diagnosis, the decline was fast, dramatic, and obvious. After the modest improvement, the decline was slow, steady, and truly unremarkable.
If I add those two together (the doctor’s remark and the slow decline), emotionally I easily could expect an improvement that totally eradicated my symptoms. Intellectually, I knew that could not happen, but emotionally there were moments I told myself that recovery must happen. The upside is the kind of thinking that motivated (and motivates) me to try. The downside is the type of thinking that committed (and commits) me to a continual process of adjustment. No matter how hard I try, physical deterioration occurs and adjustments must be made. Personal protests and desires actually produce little change!
Fear and My Past
I have been in some unusual situations.
Let me cite two. When we did
mission work in
On one such trip, while we were walking back to the “drop off” point, one of my knees stopped working. While progress was slow and painful, it never occurred to me to be afraid, though there were several miles of jungle walking left before me. To me, it was an inconvenience, not a terrifying situation. As far as I was concerned, I would return—without question!
In the early 1990’s, Joyce and I (by invitation) went to
When we returned to
The only choice we had the next day was to return to the border and wait all day. That was a surreal experience! It seemed as if we were on a movie set—machine gun towers, the middle of nowhere, the 50 yard clear-cut strip, no houses, the electrified fence, the border gates, etc. With confidence in our translator and his wife (Christians), it never occurred to us to be afraid—we could be patient enough to do what must be done.
Those two examples are cited for one reason: Unusual circumstances did not provoke fear responses. Instead, unusual circumstances became a challenge that turned into patience and perseverance.
The New Fear
There were a few things that I found unimaginable. I never wanted to experience the unimaginable. I only wished to prevent the unimaginable, and I was certain that would be simple to do. For example, being unable to communicate naturally was unimaginable. In the unimaginable category would be dependence, the need to totally rely on others, the inability to decide what is best for me, the inability to do the things I enjoy, being confined to a wheelchair, being confined to a house, etc. I am sure most of the unimaginable could be reduced to the loss of any sense of independence.
What I thought would be easily preventable is rapidly becoming my reality. Communication is becoming more difficult—even a keyboard is becoming more of a challenge as my coordination gets progressively worse. Any distraction can frustrate an effort—driving requires total concentration as I look only at the road. Weakness plagues any effort—I am not sure I could lift and mount or lower and dismount an electric wheelchair now. Though I enjoy helping others, already I must be helped. Already I have given up most outside things. I must concentrate on everything I do. I am benefitted if I “think ahead.”
The new kind of fear generally projects in vivid terms the consequences of failing to act vigilantly. Slowly but surely my intellectual voice is drowning out my emotional voice. Things are not and will not get better. The objective is changing. “Do not let yourself slip into the self-pity of depression. Be patient enough to see your options as the inevitable occurs.”
Times of Reflection
I share the following with hesitation. I genuinely hope I am not misunderstood.
An unquestionable facing of mortality totally changes meaning when a person (1) knows he is physically diminishing, (2) understands his mistakes as never before, (3) realizes his options are extremely limited, and (4) knows in absolute terms life cannot be lived again. What is IS, and shall remain as it is.
Joyce and I lived and worked in
I came to the West-Ark congregation in
In coming, I canceled over 20 speaking appointments.
In the last decade at
Now—at times—I cannot help but wonder what such experiences would have contributed to who I am and the people I may have touched. That is not to express discontent with my life or the blessings and benefits I know and have known. It is given only to illustrate the new fear—the “second guessing” of what you did and the choices you made. For me, “second guessing” is a new experience that had not previously been a part of my life.
The New Fear Is an Ever-Present Reality
The situation seeks to train me to live in fear. The pressure to live in fear is relentless. It seeks to do that by orienting me to be a consequence-focused person constantly in everything. It would be convenient to live a consequence-focused life every day. An inner voice constantly warns, “You better not do that!” Rarely is this inner voice silent—it has a “do not” opinion on everything!
Maybe your response is “Big deal! So just listen to the voice! It just does not want you to be injured.” To me, there is a significant problem with that type of thinking. The problem: That thinking results in a person retreating from life. Existence becomes a continual enduring, a continual “self focus,” and never an experiencing. It becomes a matter of being content to say, “I am alive,” and never to say, “My life is about . . .”
It would be easy to say, “I better not walk—I might fall. I better not drive—others get nervous. I better not eat—I might get choked. I better not travel—there might not be a convenient restroom. I better not be around people—I might catch something.” Or, “I better not try—who can predict the outcome? Do not do that—you never know what might happen! Do nothing—everybody will understand!”
If I surrender to those perspectives, my life is over, my
usefulness is over, and I will become increasingly self-centered.
To me, physically existing without a purpose would be depressing.
While I am quite aware that what I can and cannot do has to be constantly
redefined, serving no purpose is not an option for me.
Doing what I can do always will be important.
My constant challenge will be to distinguish between the doable and the foolish. That is not a one-time decision to be made for all my future. It will have to be remade each time my physical situation changes.
I must not live in the past.
What I could do in the past and how much I enjoyed doing it
are not relevant to what is doable
now. If I live in the past, I spend
too much time regretting what I no longer can do, and too little time doing what
is possible. The key is learning
what I can do, and enjoying what I can do.
A central understanding: This decision is a choice.
I can choose to spend my time feeling sorry about what I cannot do, or I
can spend my time discovering what I can do and doing it.
Another narrow line! The line between the courage to do the doable and effort expended in the foolish is a narrow line. Right now, my choice is to not let my existence be ruled and determined by fear. May I have the wisdom not to act foolishly!
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