Posted by Margi (161.184.81.207) on January 31, 2001 at 10:03:19:
In Reply to: margi posted by shelly on January 30, 2001 at 23:50:29:
Shelly - I wrote this awhile back and, at the risk of repeating myself, these are my thoughts on being a supporter and I think it answers your questions. I cannot imagine what you go through as a mother of such a wee one going through this hell. It's tough enough to watch an adult go through it. Please feel free to email me anytime if you need a shoulder.
Here's what I wrote:
As supporters, we cannot feel your pain. We feel a different kind of pain and that is one of total and complete helplessness, watching you be tortured relentlessly.
We see how ludicrous and utterly unfair this disease is first hand. We come to recognize the signs that you are about to have an attack, sometimes even before you do. We try everything in our power to prevent the Beast from finding you, yet once again. We try to make you as comfortable as you will allow us to. We try to protect you by explaining to "lay-people" yet knowing they will never understand. We try to shield you from their misunderstandings and hope you don't hear them say, "Oh yes, I used to get migraines but I don't anymore" or "Well, can't he just take a pill or something? Why do you have to leave so soon?" Some of us just accept those thoughts. Some of us try to educate.
We cry for your pain and wish we could attack and kill the Beast for you.
During the remission periods, for those of us that are "lucky" enough to have episodic visits from the Beast, we rejoice with you that you are pain free, yet we are ever watchful for the signs that another season is approaching. We ask you maddening questions ("are you headachy?") even when you say you feel fine, because we can see that droopy eye or unexplainable mood swings. We try to change your diets, your lifestyles - ANTYHING we can think of in hopes it will discourage that next visit. We try to do this behind the scenes because we know you don't want to be reminded that another cycle could hit at any time. We know you want to bury the memory of the pain, as we do. But we know that for now, it is not something that can be buried for ever. It can be put away but it is still there. A time bomb ticking in the closet....
We hate to see that smile leave your face. We hate to see you roll your eyes and point to your head as you leave a room full of company, knowing you are going to battle. Alone. We hate to hear you moaning, trying to be quiet because you think you are hurting us. YOU are not. The Beast is. But you are not.
We hate to leave you alone for fear that you will be attacked in our absence. We feel guilty if we are not there. You feel guilty to have us witness your dance. CH guilt is contagious.
We have made it our mandate to find you relief. Sometimes we try to make you laugh just to be a distraction. Hell, we sometimes make complete idiots of ourselves, just to see your smile reach your eyes. We just try, that's all.
WWW/psilo
Margi