I’ve devoted a lot of thought to this little seven letter word in a lot of different contexts over the years, and it’s never been far from my attention, especially over the last several years as MS really got its claws into me. Despite this intimate familiarity…or perhaps because of it…this isn’t an easy subject to write about, for me at least. It constantly threatens to leap out of whatever tidy little box I try to put it in and just run all over the place like spilled BBs. It’s taken me longer than usual just to collect my thoughts and begin writing about the subject, a bad sign and an indicator that this piece is likely to do some of its own running all over the place as it grows…uncontrollably, as it were. I’ve resigned myself to that reality, but I feel kind of bad for anyone trying to read this.
Sorry about that. It’s out of my hands.
The concept of ‘control’ has had mixed positive and negative connotations for me most of my life. When you’re an infant, you learn the most basic tasks of controlling your body, your limbs for manipulating objects in your environment, walking, moving safely around, and so on. ‘Control’ in this context is nothing but good.
It gets a little more complicated later on. When you’re a kid, it’s mostly about learning about how to get control of the things in your life, hardly surprising since kids are pretty powerless creatures. Things tend to happen to them rather than them being able to make things happen; parents impose demands on them, schedule the events in their lives, and make all sorts of things happen in their lives while also making other things not happen to them. Generally this is a good thing…those with experience, knowledge and maturity (the parents, of course) should be able to override many of the wishes of a child who hasn’t yet accumulated enough information about how the world works. Later on, as you mature, you learn to take on the responsibility yourself of making…and not making…these same things happen to you.
Sometimes the lessons don’t take, or they’re skewed in some really odd directions, especially if you happen to grow up in a dysfunctional family. I had a lot to say in my earlier “I’m So Bored” post about the hazards of these skewed lessons, especially in current times, where you can now find several generations that never quite got it when it comes to life lessons. If you’ve read that post, you know I’m pretty concerned that these people are rapidly becoming the rule rather than the exception, and hopefully we as a nation can figure out how to reverse this trend. I very much believe we’re in for some bad times ahead if this problem isn’t addressed.
When people reach adulthood without ever understanding the fundamentals, you can find more examples than can be counted of the consequences. You get control freaks, manipulative personalities, people who lack self control, and so on. On the other side of the coin, someone who is successful at life is said to be “in control,” which in that context is a very positive thing.
Notice a common factor? I think it’s pretty simple when you look at it: People who are successful at living…not necessarily in a financial sense, but successful at doing what they want and gaining satisfaction from life…have learned to control themselves, whereas people who have problems in life have never grasped this idea and spend much of their time trying to control others.
This concept has guided me well in my own life. Rather than picking a livelihood that attempts to control others I chose a career that focused on my being able to control myself. Being an aviator is very much in line with this idea. As a pilot, you are the one controlling the complex dynamic system that is the airplane. The more focused and attentive to every single detail you are, the better you are at the job. Outside of the cockpit, those same qualities can be a liability and you can quickly get a reputation as a micromanager, an obsessive/compulsive, or yes…a control freak. In the airplane, these are positive attributes! As a command pilot, it was my job to be aware of every fiddling detail, from the direction of the wind to the subtle cues an airplane will give you if you’re really paying attention; sounds, little vibrations, and the feeling of the machine in your hands.
For years I congratulated myself for doing the right thing with my life, at least as far as knowing the secret to avoiding so many of life’s pitfalls that vex so many people: everyone is a control freak to one degree or another. This is a natural human response to that helplessness and lack of control everyone feels from its beginning in childhood, I truly believe. The trick is knowing when and where to let that control freak inside every one of us out to do his or her thing, that controlling the things in your life rather than trying to control the people in your life is the key to satisfaction.
As true as I found that for external aspects of my life, so too for the internal. I discovered early on that I’m the sort who can be described as ‘inner-directed’ rather than ‘other-directed.’ I find that with really important issues, I’m a lot better off listening to what I think and believe rather than what others might happen to most of the time. I mean really listening to the “still, small voice” deep inside me. I prefer independence, not just in my external life but my internal as well. Independence means exactly what its definition says, that my actions are “not subject to another’s authority or jurisdiction; autonomous; free.” I relished freedom, it has long been nearly as important to me as the air I breathe, and I needed the autonomy of my life that was an integral part of who I was.
Then the skunk at the picnic, multiple sclerosis, made its appearance.
MS steals the simplest and oldest of a person’s abilities. Those first movements an infant can do from the moment of birth are taken away from any limbs affected by it to one degree or another. Since these abilities are so basic, so primal, their weakening or loss gives me the shrieking horrors from time to time. That loss of physical control is more awful than even the dread a small child might feel upon seeing the closet door open and watching the very real bogeyman living inside it come shambling out, dripping fangs and all, worse…oh, so much worse…than imagination could paint it. Worse yet is the horror of realizing that your body’s internal and involuntary processes and responses are now controlled by some evil Other that’s moved in and taken up residence, taken control, making your own body do annoying, painful or even downright mortifying things.
One of the other definitions of independence is “freedom from the control, influence, support, aid, or the like, of others,” and MS takes that from you as well. I’m dependent on so many things now: a power wheelchair to be my legs, and paved surfaces for it to move about on. The woman who spends a couple of hours every week to do the light housekeeping and laundry that I can no longer do. Prepared meals delivered weekly, not haute cuisine by a stretch, but good to have when I don’t have it in me to make so much as a peanut butter sandwich with one functioning hand, the other hand capriciously going useless instead of mostly useless. Four words: relief bottles, bedside commode. Enough said.
Oh, yeah, let’s not forget the doctor’s office visits to renew my prescriptions for blood pressure meds to stave off possible strokes, dietary meds to keep my spastic insides working, and the pain meds to keep the constant neuropathic pain I have to a manageable level so I can function…the regular, mandatory appointments I’ve mentioned so many times here that threaten to injure or even kill me from an uncontrolled fall to the concrete or asphalt surfaces I’m dependent upon when I’m transferring from my power chair to my Element or back. The necessary outings to see a physician that are the main reason this blog exists, my shout out to the world that I need a little help here with a problem that for the fist time in my life I can’t solve through my own initiative.
I don’t fear death. But I’d be lying if I said I don’t fear pain.
You don’t get used to pain, you know, even when you have it to deal with every second, minute, and hour of every day. The meter doesn’t reset to zero just because it’s with me all the time…each moment I’m in pain is as harrowing as any other, from the moment I wake up until the moment I fall asleep.
I fear the pain of a shattered skull from a fall while performing the last activity in my life that I’m not protected from by the aids otherwise surrounding me.
I fear that my mom will have a stroke or heart attack from the exertion of pushing me around in the manual wheelchair that’s kept in my Element for those few compulsory outings I have to do, just as I fear that her own pain from the fractures in her foot that never healed properly will become excruciating for her, or worse, cause her to fall. At 73, that could have as final consequences as a fall of my own would.
I fear having to watch what active years I have left passing away a day at a time, like the blood of a suicide’s slit wrist trickling down the drain, drop by drop, when there are still so many things I’d be capable of doing If I could escape the prison that my body’s lack of mobility is keeping me in.
I fear losing my mind if I don’t regain some freedom in my life, the same freedom that is so essential to who I was, and who I am.
Despite all these fears, I don’t worry that Providence, or God, or whatever force greater than I am that governs the cosmos will fail me and deliver me to them as long as I keep up my end and don’t surrender to them. I may be a prisoner of my body, but the essence of who I am is free and always will be. That knowledge keeps me going, and sustains me in this time.
To celebrate that freedom, I’d like to share a modern interpretation of an old German folk song I listen to sometimes. The title roughly translated means “my thoughts are free” and it helps remind me of that freedom when despair threatens to overwhelm me. I hope you like it.
While you listen, please remember something: I don’t have one bit of control over the ability to bring that liberation of my physical self any closer. Not a scrap.
But you do.