The dictionary defines "independence" as: Freedom from external control or constraint.
The loss of independence is very difficult to accept. A couple of years ago I realized that I could no longer just hop in the car and go somewhere. Every trip became a logistical consideration. How far will I have to walk? Are there steps or curbs that need to be navigated? Are the rest rooms handicap accessible? What is the weather forecast? Are the walkways paved, rock, grass, or dirt? The list of questions continues to grow as my experiences increase.
For over thirty years, I just took my body for granted. I just assumed that when I needed to walk, run, lift, climb, or whatever, the appropriate muscles would just respond accordingly. It did not take any thought; the muscles just knew what to do. There was always synergy between my central nervous system, motor neurons, and muscles. As the disease progressed, however, I found that I needed to tell, or perhaps even will, certain muscles to function correctly. Unfortunately, even that does not always work. Today, Newton's Law of Gravity plays a major role in my ability to accomplish simple tasks. "What goes up, must come down." Or, whoever stands up for too long, will fall down.
Several of the muscle groups are no longer strong enough to perform the necessary tasks. I find myself having to compensate, or perhaps even cheat, in order to perform basic movements like standing up from a chair. Additionally, because some of the signals no longer reach the appropriate muscles at the correct time, certain muscles will fire at the incorrect time. This causes muscle spasms (or twitching) that are often noticeable to others. Even stranger is when a motor neuron sends a signal to a muscle to perform a task that is already completed. One example that has happened several times is when I hold a glass of water. Occasionally, the wrist will just turn over as if I am performing the drinking motion function. This happened at a business dinner while I walked around visiting with people (see Embarrassing Moments). I could be just talking to someone when the wrist turns inward and dumps the contents of the glass on the floor and my shoes. It is embarrassing and difficult to explain.
Observing the gradual loss of the use of my hands and legs is almost unbearable at times. I often try to do too much and occasionally end up hurting myself. Yet, I cling to that hope that through some divine intervention, I will be able to do something today that I could not do yesterday. Call it stubbornness or denial; it exists because I still have hope. I repeatedly need to prove to myself that I can no longer do something as simple as walking. Loved ones cannot seem to understand why I still want (and need) to try even though I have failed several times before.