How are you?
This question is tossed about frequently in our culture. Most of the time when people ask this question, they don’t really want to know the truth. If you want to know. If you really want to know how I am then read on.
I am rare. Some unknown switch in my body was turned on a few years ago. Who knows… maybe I was born with this switch on. Whatever this switch is and whatever it does exactly remains a mystery to science.
Your body is an ever growing, living organism. Some experts estimate that within seven years every cell in your body is replaced with a new one. In the process known as cytokinesis the cells of your body with no conscious command from the brain replicate everything from the DNA and other parts of the nucleus to produce another living cell. In all of us, this incredible process of life eventually goes wrong. A molecule is damaged by a free radical or some such tragedy and soon the cells produced no longer functions as they should.
Eventually the damage builds and the mind senses that something in this body is terribly wrong. This sense is not unlike the pain you felt when you twisted your ankle or when another kid slugged you in the arm. Yes, it is similar to that but at the same time quite different. You cannot put your finger on it or even find the words to describe it.
When describing the Kingdom of God, something for which words are severely lacking, Jesus used simile as a tool for understanding when he said “The Kingdom of Heaven is like…” and I shall follow his example as I attempt to describe for you what this experience is like… after all you did want to know how I am right?
An Old Car
When I started the car it usually started on the first try but then when I put the car in gear as the engine strained it often quit. Then no matter what I tried it wouldn’t start for another 20-30 minutes. Many times you would find my car stuck at an intersection, a parking lot, on the side of the road as I tried over and over to start it; finally it would rumble to life.
I learned that, unlike other cars, you had to “know” just how to drive this one. You couldn’t just depress the gas pedal, you had to feel the engine sputtering and give it just enough gas at just the right moment. Eventually, one day the engine sputtered to a stop never to start again.
Adiposis Dolorosa is a Latin term which means “Condition of sorrowful fat.” In our day fat has become a bad word but it is essential to the function of your body. It’s most important function is to serve as a means to store energy; a biological battery if you will.
Whoever gave Dercums Disease it’s name must have thought that perhaps the fat was the problem. The patients were typically middle age females many of whom were quite obese. It became quite obvious to anyone who was near these patients that they were suffering hence sorrowful fat.
Curiously in my body the fat which was once smooth became filled with strange lumps. Some of these lumps are small and in a clump feel like gravel under the skin. Other lumps are larger perhaps the size of a grape. Some feel squishy like a soft old grape while others are quite firm like a marble under the skin. In just a few months hundreds of these curious lumps grew around my ribs and torso.
Are they painful?
Sometimes, but not always. The pain of each one is not significant but together they cry out in a cacophony of pain that is hard to ignore. Even so, such pain is bearable but decidedly debilitating. It isn’t like the severe sharp pain of the badly sprained ankle, or the cut on the tip of a finger; pain like that can take your breath away and make you tremble in shock; but at the same time it can take your breath away or spontaneously bring tears to your eyes. This is where words fail me. You have never experienced anything like living in a body that is going horribly wrong moment by moment, there simply isn’t a word to describe it, there is however a word to describe the opposite.
Homeostasis — also spelled homoeostasis or homœostasis (from Greek: ὅμοιος, “hómoios”, “similar”, and στάσις, stásis, “standing still”) — is the property of a system in which variables are regulated so that internal conditions remain stable and relatively constant. Examples of homeostasis include the regulation of temperature and the balance between acidity and alkalinity (pH). It is a process which maintains the stability of the human body’s internal environment in response to changes in external conditions.
I wonder if you can feel Homeostasis? Is it what normal feels like? If the body was going horribly wrong, could you feel the lack of balance in the system? I believe that perhaps you can and that this indescribable feeling is something like pain but altogether different from it at the same time.
To the mind it comes as the realization that like my ’71 El Camino the command to go is sometimes simply not followed. The response is not one of the engine leaping to life but rather a sputtering that you learn to live with.
Everyone has felt this at one time or another but you knew that it was temporary. A flu perhaps that left you low. A few days in bed, some chicken soup perhaps and the bodies efforts are rewarded when the immune system expels the virus and the illness has run it’s course.
But what of an illness that is not the result of a foreign invader? What if the body itself had mis-transcribed some important instruction and is now failing in some important but not vital way? The heart is still beating. The lungs are still breathing but every day the system grows weaker.
The Unwelcome Guest
One day, like my El Camino the engine will stop never to start again. And how shall I feel about this? Culturally we are taught to shun death; never to speak of the unwelcome guest who will one day visit us all.
If you want to see strong emotion, just mention the idea that you might prefer death to your present condition of living. You will be soundly condemned and your sanity questioned. You will be accused of wicked thinking and perhaps even of plotting your own end in that most taboo of all acts… suicide.
The Grim Reaper will have his harvest one day. Our instinct to cling to life bids us to flee from him yet we know that in the end we all have an appointment we just don’t know when. Is it insanity to welcome that moment? To long for it the way that we long for a broken bone to be healed? Someone who thinks such things will be admonished to seek counseling; told to look on the bright side of things etc. told that they are loved, needed and wanted. Such things are probably true and useful advice but each of us will reach a place where we are simply tired and long for sleep. We long to simply end the pain.
What will it feel like when it comes? Will you realize that this is the final moment or will you simply cease to be? And then what? Will you awake to find a new you? Like a butterfly emerging from a cocoon only to realize that your previous existence as a caterpillar was so limiting?
The Bible tells us that to be absent from the body is to be present with the Lord. Like Paul, I long to depart and be with Christ which is far better. Like him I am chained in a manner of speaking. Because of those chains, Paul wrote some of his most important thoughts and we can still read them today. Because of my “chains” I pick up this parchment and pen and write to you, most excellent Theophilus. One day my words will not be able to cross over to you. My life will have become yet another testament, a statement to those who live on. You will conclude what you will about me.
My life is a complicated, intricate web of thoughts and actions inconsistent. A fight against that most insidious enemy of all, the me that fails to be the me that I wanted to be. How could it be any other way? That is your story as well and as soon as we choose to stop lying about that the better we will become.
When you lie in bed at night longing for sleep you will understand that no matter how hard you try to stay awake sooner or later you will close your eyes. In those moments just before sleep your body longs for it… your eyes feel so heavy and your head hurts.
What if someone told you that you mustn’t sleep? What if they said there were so many reasons to stay awake? What if they told you that you would likely have to wait years before sleeping and that to long for it was somehow wrong? They tell you these things for themselves, not for you. As for me, I’m tired. Yes, I know that in the typical scheme of things I should be able to stay awake much longer but my body isn’t typical anymore and I want to sleep.
Is this sad? Tragic? Yes, of course it is. If I had cancer of one kind or another your response would be so different. Even under the law in our state I would have the option to have a doctor hasten my death. This distinction comes only from the fact that doctors are confident that cancer will end a life and they have no such confidence about Adiposis Dolorosa. In fact, they cannot even say, one way or another, anything meaningful about life expectancy with this disease.
A few months ago when my story was more optimistic everyone wanted to cheer and hear it. We love the tale of the underdog rising up from the sick bed yet we never consider that this is the opposite of the typical story which ends so differently. Perhaps you would prefer to believe a fairy tale. Fine but believing it does not change the inevitable end that we all face.
And so my friend I lie in bed waiting for sleep. I don’t know when it shall come but when it does, it will be a welcome guest.