As I begin this section (Part 2) and this chapter, it has been about a year since I have written in this book about my journey with spinal cerebellum atrophy # 8. I suspect, for a number of reasons to be disclosed, that this will be a major year of transition. It is now nearly four months until I retire, and I am sure that will be one of the major transitions.
Allow me to begin this section by observing what I call the “phases” I have thus far experienced. These are stages I have identified in my transition.
Phase I: Shock
When I finally accepted the reality of my diagnosis, I went through a brief period of wondering, “How did this happen to me? What did I do incorrectly? How could I have prevented this from happening?” While I definitely experienced a period of shock, for me this was a brief period. It ended when I accepted the “trueness” of the diagnosis. I realized the “how” mattered only to me—it only was a curiosity factor, not a solution. In my case, how the problem started is not significant; what the problem means to my life is quite significant. I have little to no idea of how visible this period was, but I think it likely was more personal than obvious to others.
Phase II: Grief
My health problem required many immediate adjustments. There were a number of things I had to face immediately if I was to begin making my adjustments. The only responsible way to accept the adjustments was to begin by eliminating temptations. (a) Entering denial or (b) encouraging procrastination would not be helpful. If I entered denial or procrastinated, it would be too easy to say to myself, “I do not really have that problem!” or “I will deal with that circumstance later when situations demand it by becoming bad!” If I adopted either approach, in many circumstances, a “slow decline” would become impossible—the situation would exist before a “slow decline” could be invoked.
The object is to make the “bad conditions” arrive as slowly as possible. To do nothing or to do things that aggravated the condition only would hasten the “bad conditions.” In no way would denial or procrastination be helpful! Denial and procrastination might make me temporarily feel better through a hurtful pretense, but these forces quickly would end in disaster and depression.
This phase was highly visible. Routines had to be changed. Some efforts had to cease. Equipment (such as outdoor gear) needed to be disposed of as quickly as possible. As this was done, it forced others close to me (in some instances buddies in an activity) to accept the reality of my situation. At times, they shared the grief of the situation. Sometimes their comments made the ordeal more difficult, and sometimes their comments were powerfully encouraging. Always they intended to be helpful.
Perhaps I should add that a person’s adjustments do not occur in a vacuum. A person’s difficult adjustments touch the lives of all who care about the person. As the troubled person adjusts to his/her situation, those involved in his/her life are also accepting or denying, or processing, or determining the meaning of the troubled person’s new reality.
The new reality affects the lives of those who care about the person, not just the person.
It is easy for the new reality to make the person extremely selfish. It is easy to think only of “me,” “what I must face,” and “what I must sacrifice.” It is convenient to say (at least to self) regarding the concern of others, “You cannot possibly imagine what I am going through!”
Whether the situation is fair or not is not the issue (it seldom is). The person with the problem must realize that more people are involved than just the person with the problem. The irony is this: The more the person helps others adjust to his/her problem, the more the person adjusts to his/her problem. Just one example: it is much easier to help someone with a good attitude than someone who is selfish.
Have a good attitude! Always recognize that your attitude is your choice! Daily, begin your thinking by (a) seeing your blessings and (b) thinking about others, not by feeling sorry for yourself. There will be more than enough time to think about you! Circumstances always will make you think about you. You need a context for your thoughts. It is invaluable to say, “That may be true, but I also need to consider this.”
Phase III: Frustration
While the grief phase often requires adjustments that are obvious to others, the frustration phase commonly involves changes noticeable only to the person who experiences the primary problem. If the person is successful in avoiding selfishness and constant complaining, he/she commonly endures personal frustration silently. Likely, only a spouse or someone very close to the person will witness the frustration. This is my current phase.
Again, this is better illustrated than explained. For me, those things include things such as parting your hair, grasping a towel, picking up things from a smooth surface, putting the key in the vehicle ignition, screwing a screw, tying a tie, various procedures when dressing, buttoning buttons, holding more than one thing in one of your hands, setting down anything tall and cylindrical, using a fork, sitting down, getting up, pouring into a glass, etc. The frustration comes because “the thing” was something done without thought, concentration, or attentiveness in the past—you just did it! It can still be done, but it has to be a deliberate, thought out, intentional act that often requires more time than was required in the past.
I sometimes describe what is happening by saying, “It is like enduring the aging process when the process is stuck in fast forward.” Joyce often seeks to encourage me by noting that people she knows “experience that” or “can’t do that.” That is true! However, I do not think in those terms. (1) I used to do that without thinking about doing it. (2) Now I think, am deliberate, take my time, and still have significant difficulty. To me, the struggle is not improved by a comparison to others. It is a simple task I did five years ago without thought, and it now requires a lot of thought.
Additional Considerations in Phase III
In this phase, I become increasingly visual. By that, I mean it helps to see it in order to do it. I never set something down unless I watch myself do it. If I do not watch, sometimes I think I set it down when I did not. Turning over a glass or cup makes me feel incredibly stupid!
Other illustrations: I look in a mirror (when possible) to button buttons. I find the ignition with my eyes and watch myself insert the key. I watch myself pick something up—and still occasionally fail to grasp it. Rarely can I tie a tie correctly on the first try even though I watch. Keeping a screwdriver in a screw slot is almost impossible. It is extremely difficult to hold two things at once in the same hand. Usually as I fail to accomplish something, my frustration grows.
I am learning not to attempt something I cannot do, but I am not there yet. Also, I am trying to learn to quit when it becomes obvious to me that I cannot do something, but I am not there yet. I am stubborn—that is sometimes helpful, sometimes not. The area separating stopping an effort and being content to be helpless is a small area. It takes wisdom to distinguish between the two.
In this phase certain fears are exaggerated. For example, my fear of heights grows and grows. In times past, I lived in an old house with a steep roof. On numerous occasions, I sat on the crown of the roof while I worked on the chimney. I did not enjoy it, but I did it. I painted the exterior which required me to extend myself as far as I could on a ladder. I did not enjoy the experience, but I could do it. Now, twelve inches off the ground is a huge distance which makes me feel quite insecure.
I would not dare go into our attic—nor would Joyce let me try.
A few years ago we visited the southern rim of the
Nothing has changed but me!
In years past, I thought nothing of taking a manageable risk. I was quite task oriented. Often I enjoyed a reasonable challenge. There was a sense of validation in meeting a demanding need.
Then meeting such needs entered a period of considerable thought and planning. I do not mean I would not attempt something that involved risk. I mean I would understand the task (know the need), think about how I would meet the need, and plan in detail what I would do and how I would do it. Only by going through this process would I accept the risk and the challenge.
Now no risk challenges me. Risk is to be avoided! The sense of personal validation is gone. Need does not provide motivation. Were I to try to do something risky, three things would occur quickly.
First, I would be overwhelmed with a realization of physical weakness. A voice within would look unfavorably upon my attempt, and shout, “You know you are not strong enough to do that!”
Second, a skills evaluation would begin automatically. That same voice would ask, “If you happen to be strong enough to do it, do you possess the skill and coordination to do it?”
Then, third, the voice which now has my full attention would ask, “Have you considered what might happen to you? Have you visualized the physical consequences?”
With these three internal reactions, I become so focused on failure and pain that I forget the external need. I look with such attention on me that I completely lose any focus on need. What used to be “doable” is transformed into “impossible.” Yet, in many ways, it is the same physical me.
Why does this physically happen? Is it merely negative visualization? Is it just the loss of confidence? Is it real changes that occurred to make the formerly “possible” the present “impossible?”
I do not know what happened! However, I know two things. (a) To me, the change is real, and (b) I have not yet been exposed to a motivation that would override that reality. Frustrating? Yes! Real to me? Yes!
Everyone has limitations. Know and respect your real limitations. As much as possible, understand the causes of your limitations. Understand that respecting genuine limitations should be your friend, not your enemy. You have nothing to prove. You are no less a valuable person for refusing to try to do what you cannot do. All you have to gain from seeking to do the impossible for you is hurt to yourself. Such hurt complicates life instead of simplifying life.
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