I don’t know that I’ve ever literally walked a fence, but it is a descriptive phrase which I like to use. It so beautifully describes the balancing act; the teeter-totter effect of parsing out energy, in a life lived with chronic pain. It denotes danger from a journey we have to make under difficult circumstances. That’s how I feel, so many days, when choices of activities have to be made; armed only with the skeletal form of who we used to be and the vital parts we have left. We find ourselves choosing, very carefully what we can, want and are able to do. There is no more running around like crazy fulfilling everyone’s expectations. There is no more being all things to all men, women and children who have their expectations of us. We know those of us with chronic painful problems that we can no longer “have it all.” I’m not certain anyone truly does have it all. I suspect it’s an urban myth we often experience when observing the lives of others. They may look like they have everything but the chances are pretty fair that they don’t.
I guess it is all part of the image we experience via television, movies and folklore about what life should be. What happens when life isn’t what it is supposed to be, whatever the heck that is? We start out on a journey and think we know where we’re going when, in fact, life has other plans for us. When I became a nurse 35 years ago, I didn’t really plan on being my own best patient. It just sort of happened as the tiny time bombs on my strands of DNA exploded and the alarms went off in my pre-programmed existence.
This is not a simple thing to figure out; what you can do, how much of it you can do and when to stop doing whatever it is you are doing. Most of us just go until we “hit the wall.” Like a disoriented person in a dark room, or a child playing “blind man’s bluff” we often roam around until we crash. We become human bumper cars. It hurts. It’s ugly but it’s all we have. If we didn’t venture out there and make some choices to get on with our lives as we intersect with our families and friends we would lead these enormously boring lives. There are no flashing caution signs except for pain. There are no alarms that go off and no clanging bells at the local police station. We just have to try.
The typical scenario for us is to be confronted with an activity we want to participate in, such as dinner with our family, a day of play with our children or grandchildren or a visit from friends from in or out of town. We want to do these things. They’re fun. They give us joy and they’re part of life. We crave and need this connection with others. At other times we need to be productive. We have enough sense and experience to know we have a limited amount of energy; we have pain or will have pain. It only takes a year or two for us to get over the “have to dos.” You know the things that are expected of you and you do them because you’re too chicken to say “no?” Those don’t even count after awhile and you save your energy and that little portion of the day you feel up to doing anything to the items high on your list. You do them, you enjoy doing them and you finish. Then the pain and often, enormous fatigue sets in. For me it’s usually that night or the next morning. Stiffness, pain and deep “who cut my strings” fatigue inhabit your body to the point it is difficult to sleep, walk into the bathroom or even make the effort of feeding yourself. For me it is often a discomfort so intense it effects safe function and also makes me nauseous in its intensity.
You lie in bed, unable to sleep until you reach for a pain pill or a muscle relaxant and you quiz yourself about your choices. “Was it worth it? Should I have done it?” Usually, the answers come quickly. “Yes, it was worth it but you knew it would cost you.” Every activity comes with a price tag. Then you pay the price. Writing a check would be so easy. Scrubbing a charge card would be so simple. The price we pay costs us in the coinage of pain and suffering. The bill usually arrives the day after the activity. We don’t get or give all that much sympathy or empathy. We don’t expect it. We do get some understanding if we’re lucky.
What we really don’t like is the individual who lectures us with the “I told you so.” What do these types of individuals expect us to do? Should we lie on the bed all day? Should we find a cocoon and climb in? Here’s a heads up. If you’re one of those individuals, please understand that we have to live life. If we don’t then we are already dead. We want to be all that we can be, just like those U.S. Army recruiting posters. Just because there are no rules and we don’t always know the parameters and occasionally hit a wall; well, that’s just how we have to do it. Wise up. Please, for the sake of all of us who have to live this way; look outside the box. Try to understand how difficult it is and give us some kudos for trudging on by putting one sore foot in front of the other, day after painful day. Each of us is just trying to find our way to as good a life as possible.
Please let me share a poem I wrote many years ago and shared with you but seems so appropriate today, I would like to share again.
YOU AND I
I know you are hurting,
I understand, I do.
You see, we walk together,
Because I’ hurting, too.
I don’t have all the answers
Most days I have so few.
I do have blinding fear,
But is the sky still blue?
Some days I want to escape;
Could I be someone else, don a disguise?
Let me out. I don’t like it in here.
At the dawn will the sun still rise?
By the way how did we get in this fix?
Was it genes, bad luck, were we stressed?
I don’t know either, but tell me
Does the sun still set in the west?
We can’t always help it you know,
Feeling the way we do.
The good emotions and bad,
Aren’t they all a part of you?
The greatest gift, I think,
Is self-honesty and truth;
Otherwise we’ll harvest
Self-delusion and bitter fruit.
To know why is the question we ask.
Eventually this has to stop
For we find more strength for the fight,
When we finally say, why not?
Was I promised some sort of exemption?
Does my life mean more than another?
Don’t flower strewn paths quickly fade?
We’re each a mother, sister or brother.
We’re connected in so many ways
Walking this path called life;
Why do we think we’re alone?
When we could be united by strife?
Is it possible our pain
Could form a bond of the heart?
Then neither of us will be alone
Isolated, abandoned, apart?
Sue Falkner Wood