This dramatic essay was written by Sharon soon after her diagnosis of macular degeneration. It is representative of the initial stage of grief which many people enter upon hearing that they are losing their vision, and it is published here with her permission so that others may realize that they are not alone.
The important thing to remember is that, with the right kind of information and support, even depression this serious can be alleviated, allowing the person to deal with their condition on a much more positive level. If you identify with the thoughts in this essay and you need help coping with the emotional effects of vision loss, please also read Depression and Macular Degeneration by Dr. Lylas Mogk, and then seriously consider joining MDList, our Internet community’s email discussion group. Over 400 people are there, every one of whom understands and wants to help. Included among them is Sharon, who now says, “I searched the web and found these wonderful people who provide support and information, and they took away my fears.”
You can learn more about MDList here, and we hope you will join us.
I lie in bed, listening. I hear nothing except the rapid pounding of my heart. I am too afraid to close my eyes and too afraid to get out of bed. It is not only the night and the quiet it brings that disturbs me, it is also the day. The day brings with it my ongoing struggle with my enemy. The day exposes me to the realities of living in a world that is foreign to me. No longer do I live in the old world, the carefree and happy world of yesterday. I live in a new world that is distorted and ugly. I don’t know how to function in this hostile environment. My days are full of fear.
How can I explain my fear in terms that others will understand? The fear I want to describe is not the simple adrenaline burst that comes with a perceived threat. That type of fear is powerful, but momentary. It is a required, natural fear, which puts our senses on alert and protects us. The fear of which I speak is not the normal fear that comes and stays for the brief period when confronting a problem or a change. That fear is manageable. We know that time and resolve will overcome the trepidation and return us to stability.
The fear I want to describe is a fear to be dreaded. It is powerful and omnipresent. This fear puts our senses in the panic mode and leaves them there. This fear takes us from the safe place we have come to know to a place that terrorizes us. This fear is so intense that it takes over and permeates every fiber of our being. This fear grips us with such power we feel the very breath of us being squeezed out. Eventually our body goes limp with the overwhelming impact of this burden it bears. Gone is the ability to think or feel anything but the weight of this fear. We move from our safe place to a place of emptiness, nothingness.
How comforting it would be to believe in a spirit that would rescue me from my peril. I call upon my inner spirit for strength. However, I am so overwhelmed by the enormity of this terror that I don’t even know where to look for my spirit. I ask, “How can I find my spirit when I don’t even know where I am?”
I am lost, somewhere, in a deep, dark hole. How did I get here? I can’t think of one reason why I should be here. I am cold and lonely. Fear has put me here, and I cannot imagine that I will never find my way out.
In order to fight this fear I need to fight the enemy that is the cause of the horror. How do I oppose this enemy that attacked me with such force when I was least expecting? How could I have ever been naive enough to think that I was exempt from encountering such a formidable foe?
I should have been better prepared. But how can I prepare for something that I do not expect? I wish I knew the answers.
I am so angry. Why has this enemy chosen to thwart its vengeance upon me? How can I get someone to understand what this evil is inflicting upon me?
Don’t tell me that you understand what I am going through. There is no way you can identify with my fear when you have never had this experience. No one can tell me they understand unless they are fighting this exact same battle. You are not.
If only I could rid myself of some concerns. Some fears are mere anxiety. Fear of the unknown would be relatively easy to exclude if I had the necessary knowledge. I need a means to equip myself, a way to gain control of my destiny. I need specific details in order to build my suit of armor. I need to know how to fight this enemy. Information would assist me to escape from this black hole. Those who should know my enemy say they have no advice for me. They offer no known way to confront this adversary. This news compounds the unrelenting threat and escalates my fear. I am afraid that I will never get the information I must have.
I need to be comforted. Like a small, lost, child separated from her Mother. I am scared. I want so desperately to hear “those words.” I hear words but none of them are the words I am yearning to hear.
Don’t tell me you are sorry. These are not the words I want to hear from you. You are the one person who should have all the answers to my questions. How dare you say you are sorry! Isn’t it your responsibility to fix this, to drive out this enemy? How dare you, of all people, say you are sorry. I need your help. I want to scream out to the world, and at the same time I want to hide from all of you.
I want to feel “that special touch,” but none of your touches are the touch I am craving. Don’t hug me! You have no right to hug me just because it makes you feel better. I am the one who is dealing with this fear, not you.
Don’t ask me to provide you with love and understanding. I am the one who is in need of love. I need to be loved but I can’t feel any love right now. I barely have the strength to get through this day. I can not help you now, please go away.
I am so very lonely. Please stay with me awhile. Would you please put your arms around me and hold me? Yes, I know I am being selfish and this brings me pain and worry and adds to my fears.
I look at your faces, and all I see are sympathy and concern. I don’t want you to worry. It is my responsibility to protect you from the evi forces in this world. When I see you I must put on a smile and tell you everything is being taken care of. I must distance you from my pain. I am alone.
Please, won’t you listen for awhile? I am trying to tell you about how I am feeling. You are polite, it seems to me, but you are not listening. I can sense you want to change the subject. I need to tell you more about this appalling fear. I desperately need to share this burden. It is too heavy for me to carry all by myself.
I try to explain. I will stop trying to explain, as I can see your discomfort. You clearly have no answers for me.
I think, “Please go away. I am too sad for company.” I say, “Would you care for more tea?”
Perhaps, if I could find a way to face this fear, it would disappear like a mirage. I wish this was a mirage.
I don’t know how to get out of this black hole, and yet, most of the people I meet don’t even know that I speak to them from here. They see me in front of them. They see me laugh and work and play. This, truly, is the mirage because I am actually not there. I am here in this abysmal black pit of hell. Fear put me here and fear won’t let me out.
No one can help me. Perhaps I have the strength to help myself. I try to rationalize my fear in order to make it more manageable. “Get control.” How can I gain control? This is not a belief that can be rationalized. This is reality. I have this enemy, and this fear, and I have lost dominion of my being.
“Remember how special you are.” How can I feel special when I am but the shell from which the special being has escaped? The self-assured, independent, in charge, special person I once knew is no longer here.<
“Stop being a victim.” I would if I could. The reality is that I am a victim, a prisoner of my enemy. I am tethered by this fear, wrapped in darkness and too scared to scream.
Fear is called the “fight or flight” syndrome. If I found the strength, I would run forever, but this enemy would follow, and hence the fear. I would stand and fight but I have no equipment. To fight the enemy you need to know all about the enemy, and determine a tactic to confront the enemy. I am here, living in this fear, because I have no plan.
“Take responsibility for yourself.” I do. The enemy is simply too monstrous for one to handle all by myself.
I am told “You need to accept the enemy as part of your new world. This is what you need to do to get rid of the fear.” Stop! Don’t tell me to accept this enemy. That word accept means to embrace, to welcome. What a foolish thing to say. Are you actually suggesting that I must learn to accept, rather than fight, this enemy?
I cannot breathe. I feel dizzy. My whole remaining being rallies, and from somewhere deep within, I hear a cry. I cannot live in that world, that abstract world my enemy sent me to. That is the deep, dank, hole I want to leave. My fear is now a terror.
In anger I protest, “Don’t tell me to learn to live with this enemy. This only serves to make the fear more intense.” How can I live with just the shell of myself? How can I live without my spirit? What you meant to say was not “live,” but “exist.” I do not know how to exist, and I do not wish to learn. What a horrible prospect. I contemplate, and then feel, the effect this terror is wielding on my body.
I am asked, “What is the enemy that causes your fear?” It is not the cause I fear as much as the fear itself. No one understands the enormity of it.
What does my tomorrow bring? I dare not think too long on this, because the real fear, that overwhelming terrifying fear, comes in and pushes me ever further into the black abyss.
These are too many thoughts. Too much pain. I am tired. I need to sleep but fear is here, with me, in my bed.