Pain. Everybody has it, and apparently we have it more as we grow older. Or maybe old farts just complain about it more. I'm not sure, but I have some things to say about pain--things that I wish my family and my friends knew. It's not that I haven't tried to tell them, but they don't listen, and I believe that the only time they will listen is when they are suffering pain themselves. Frankly, I hope that never happens to anyone I love. So here is my list:
1. It may seem to you that I do stupid things. You think to yourself, "Walking causes her pain, so why doesn't she stop it?" You see, walking is something that you've never had to think about. You've taken it for granted. I've always had to think about walking and I don't take it for granted. Sometimes I want to walk because I like the way it makes my muscles feel. I love to feel my heart pounding, and I love to feel the blood coursing in the veins in my legs. I don't remember a lot about my Dad, but I do remember that when I woke up in the morning stiff and sore, he would say, "Just start walking. You'll limber up." I think of Dad when I walk now, and I wonder if he's proud. I love to walk in the evening breeze and pray while I walk. I love to look at the color of the sky and stop to smell the neighbor's roses. I love the way my dog proudly walks next to me, checking in with me every few seconds to see if I am okay. And so I walk even though I know that tomorrow it's going to hurt. You may think it's not worth it, but I do and I am the one who has to pay the price.
2. Don't threaten me. I'm already terrified enough without your threats. You may think that the thought of me in a wheelchair will motivate me to try harder, or to overcome the pain, but actually those fears and thoughtless words just increase my pain. When I already feel as if I'm walking on knives and you tell me to just give up and use a wheelchair, doing just that sounds pretty good. The only thing that really keeps me from doing that is my own desire to "walk until I'm 80". But back when I set that goal I was only four years old and I only had minimal pain. It may be that I'll have to rethink my goal. So when you threaten me with a care home or with the possibility of a chair, I immediately ask myself whether that wouldn't be a better choice than to try to continue walking. Those kind of remarks only increase my desire to give up. Look for other ways to motivate me.
3. Noise has always bothered me. Sudden loud noises produce sudden painful spasms, and continuous ongoing noise produces tense muscles and anxiety followed by spasms. Try to keep my environment peaceful and as calm as possible. This includes driving. For some reason riding in a car causes spasms. I hate fast stops and fast turns, and I hate "jerky" driving. When I grimace at you, I'm not angry. I'm having a spasm. I'm not interested in being a back seat driver. I'm trying to find peace and calm. I'm not judging your driving, I'm trying to avoid spasms.
4. Martyrdom. I begin and end the day the same way every day. I sit up on the edge of the bed and ask myself if I'm ready to stand up. The answer is usually no. Then I pray for strength to stand and bear the pain. I have to choose very carefully all of my activities for each day, knowing that each task will cause pain. It would be very easy to just give up, to stop doing chores, to stop cooking meals, to stop cleaning up after myself. But I keep it up. I make myself get dressed, clean up dishes, go grocery shopping, and do housework because I know that once I give up any activity, I've likely given it up for good. Remember I used to walk without a walker or any support? Then I got the walker, and now I've become dependent on it. I try to use what strength I have left so that I won't completely lose the ability. I'm not trying to be a martyr though it looks that way to you. I'm trying to survive and somehow beat CP. The end of every day brings intense exhaustion mixed with varying degrees of pain. I can't wait to lie down and go to sleep, but then pain prevents sleep. So I pray for strength for the night and the ability to endure the pain.
5. I hate the fact that you see me in pain. I hate it so much that I wish I could be invisible to all of you or go far away and live by myself. But if I did that, I would grow lonely for you all because I love you. One of the most difficult things for me to do is to explain myself to you. Please don't ask me to explain my pain to you. Don't ask me to assign my pain a number on the damn pain chart. Know this. If I'm complaining about it, I'm in pain. If I don't talk about it, well that's as good as it ever gets. I'm probably tired of communicating so I've chosen not to say anything. Here is one of the reasons I love my service dog. He often sees me in pain. He never asks why or where it hurts. He never judges. He never sighs. He doesn't roll his eyes. He doesn't make me speak at all. He just curls up next to me and spends the day lying next to me. Am I telling all of you to act more like a dog? Yes. I am. At least in that one respect.
6. I know you are disappointed and sometimes angry about my disease and my pain. I am too. I know that sometimes you are angry with God about my pain. I am too. You wish that God would have healed me. I do too. You may not believe in God at all. That is between you and Him. But discussing these matters of faith with you when I am in pain increases my pain. So wait until I have a good day and then we can discuss matters of faith and conscience. I have come to a place of peace with God. I choose to believe in him and love him. I assume that if I'm never healed, that God loves me anyway, and I must have had some wrong ideas about who God is and what he does. I know that to you it seems that I never have a good day, so if that's the case and you need to talk, please find a priest or pastor to listen to your doubts and questions. It's not that I don't love you or don't want to discuss these things with you, but it just means that pain has taken up all the space in my heart and in my head, and I cannot talk reasonably over that kind of pain. When I'm in pain you won't get any honest answers from me, just desperation. If you complain to me when I am in pain that God doesn't answer prayer, know that in my desperation I'll be likely to agree with you. Don't expect strength when I am in pain. All my energy will go towards healing.
7. I was born with this disease and I have experienced pain from as far back as I can remember. Although you may think that your depression, hip replacement, knee replacement, osteoarthritis, heart disease, diabetes or other age related condition is similar to mine, it is not. The medicines and doctors that may have worked for you don't work for me so don't waste my time and energy by trying to sell me doctors, hospitals, surgeons, supplements, diets, magic pills, drugs, illegal drugs, or alcohol. I have tried everything. There is no cure. You cannot relate to my pain and I can't relate to yours. It's okay. We can still be friends. I am not downgrading your pain. I don't mind talking about it with you if that helps you. We have things in common, but we don't have pain in common. If what worked for you could also work for me, I would have tried it by now. I do appreciate your love, but please stop comparing your disease or pain to mine for the purpose of trying to make me feel better. Let's just be friends. Stop trying to heal me. You can't. Only God can.
8. I have always been very determined. One of the things I was determined to do was to live a normal life like a person without CP would live. In large part, this happened. I have lived a wonderful, happy, somewhat normal life. A few years ago I still could do a lot of things. I could do some yard work, mop and vacuum the floors, cook meals, clean the bathrooms, and when all the chores were done I still had energy to go out for dinner or coffee or go see a friend. But now just one chore at home will make me sore for the whole day. So if I shovel dog poop, don't expect me to finish that, come in, get beautiful and go out on the town. What I really want to do is take a bunch of medicine and bliss out until I fall asleep. I would love to go out with you because I still love you, but I'm too sore and tired. This doesn't mean I hate you and that I don't want to go out with you. It means I am too full of pain to enjoy you or anything else. Please don't expect me to do a chore just because I always did it before.
9. If you feel the need to discuss my behavior, condition, or mental state with other family members or our mutual friends, see to it that I can't hear you. The judgments that you make about me often hurt my feelings and make me feel misunderstood and unloved. Then I feel the need to explain to you what's really going on. (See #5). Remember, I'm trying to survive here and in the middle of my survival, I'm trying to overcome. Please try to speak words of encouragement in my hearing. As Mom used to say, "Before you judge me, walk a mile in my shoes."
10. I know you can't fix me. I know I can't fix me. Sometimes all I need is reassurance that you are there. I need you to know that I'm disappointed that the pain has robbed us of so much life. I don't like it this way either. Please try with me to live the fullest, most loving life possible. Help me beat the pain. Help me beat the disease. Let's use the good days to do things together, and when the days are bad please just stick with me. Remind me that the good days will return again.
11. I spent quite a few years of my life doing a lot of running around looking for healing. I traveled to church after church, tent meeting to tent meeting, revival to revival. I'm done running now. I'm content knowing that God is here with me wherever I am. I don't need to chase him down. He knows where I'm at and what I need. So please don't call me to tell me about the latest, greatest healer. If I need him or her, God will tell him to come to me. I know you love me. You want to see me healed. I want to be healed, but I'm tired of the running, tired of the motion.
Eleven things on my list. That is a very awkward number, but this has been a very awkward subject so I guess I will leave it at a nice awkward eleven.
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