“Only in the darkness can you see the stars.”
(Martin Luther King Jr.)
That sums it up . . . I am tired. After several weeks of short nights dealing with our son’s seizures . . . I am tired. After several days of having to leave work early to deal or son’s seizures . . . I am tired. After sitting in the hospital emergency for several hours dealing with doctors about our son’s seizures . . . I am tired. I am tired of the sleepless nights . . . the frightening screams . . . the seizure wracking paralyze . . . the sympathy of medical people who have no answers . . . have no cures. I am tired of this nightmare that never seems to end after more than nineteen years. Yeah, think that sums it up . . . I am tired. It never changes.
A friend of mine calls it SSDD . . . Same Sh**Different Day. At least that is what she posted on her Facebook page this evening when she shared the news about her daughter’s appointment at a regional hospital with specialists to deal with a chronic condition. The news was not good . . . basically the daughter was told that there was nothing that could be done at this time . . . told that she had already been seen by the best and if they couldn’t help, why in the world did she think that they (the new medical team) could . . . basically she was told to grin and bear it . . . nothing was going to change. It really was not the news that she or her family or friends wanted to hear. Kind of took the hope right out of that last balloon that they had found. It sucked . . . and, from the post on Facebook, I think they are all tired.
Chronic illnesses and conditions are tiresome. Tiresome for the person having to endure them . . . tiresome for the people who love and take care of them. It is not good for people to get tired. When people get tired they easily get frustrated . . . they easily anger . . . they easily give up hope. Giving up hope is the worse. When hope is gone . . . what else is there?
I feel for my friend, her daughter, and all those who have been circling their lives with prayer and hope . . . and, now they are tired. They prayed . . . but did not receive the healing, cure, or even a reduction in pain. They sought expert opinion . . . and the medical experts had no answers or solutions. They felt patronized as they left the hospital and wished “good luck” . . . and like they were saying, “Don’t let the door hit you in the butt when you leave.” Chronic illness is a tiresome roller coaster and now they feel as if they derailed. Knowing this friend, there was resignation in her post . . . there was tiredness . . . a loss of hope.
Yes, I feel for my friend. I know what she feels because I too have been tired and hopeless . . . just like now. I have watched my number three child, my number two son, deal with this crippling disability for nearly nineteen years. I have witnessed how the Epilepsy has robbed him of a normal life. I have seen how it has made him a social outcast and ignored or even spurned by a lot of the world around him . . . seen as valueless. I have sat beside him as he cried and mourned that his life was not like all the other people who were his age . . . cried and mourned that he cannot see a life like his siblings in the future . . . a wife, children. I have seen him get up for new treatments, and I have seen him blown out of the water when they produced nothing but wasted time. Up the roller coaster, down the roller coaster . . . off the tracks . . . get up and do it again. It is tiresome.
I have often wondered about whether or not there is some hidden limit on how many times a person can go up and down this emotional roller coaster before enough is enough. Is it a couple of times? Is it a thousand times? A million? Well, I imagine that our son, my wife, family, and I have hit those peaks a couple of times . . . and, what do others tell us . . . hang in there . . . it will get better . . . we are praying for you. Nice platitudes, but it does nothing to ease the tiredness . . . nothing to restore the hope.
Anyone who deals with a chronic illness or disabilities knows the routine well . . . anyone who loves and cares for a person with a chronic illness or disability knows the routines well . . . up and down, all around, and do it all over again . . . over and over. They know all the pat answers . . . all the nice words of comfort . . . all the routines of those around them who cannot help. They have been angry at God . . . angry at the doctors . . . angry at each other . . . and, just plain angry. God doesn’t seem to care or help . . . doctors “practice” medicine and really are only guessing at what might help . . . the world seems small and the people in it are irritating even though we love them . . . and, in the tiredness there is anger. When the anger ends . . . hope is lost.
I have spent a life time on this roller coaster. I have witnessed the lives of my two brothers who have disabilities . . . over fifty-some years now. I have witnessed it in the life of my son as he battles Epilepsy. I have seen it in the lives of the people I have served as a minister for over thirty-some years. I have seen it in the lives of friends. I have railed against God . . . and, I have railed with God. I have cried with loved ones . . . and I have yelled at loved ones. I have been angry at the world . . . and, angry with the world. I have been tired . . . and, I have given up hope.
My mother lived a hard life. She understood that life is not easy . . . that life is difficult. She struggled with me through some difficult times in my life. I will always remember her words to me in those times of struggle . . . “This too shall pass.”
“This too shall pass.”
She was right. When it was darkest . . . the stars came out. Here in Montana I only have to step out on the back porch and look to the heavens to see millions upon millions of stars piercing the darkness. Surprisingly, I find hope there in the darkness as the stars sparkle in the sky. There is hope . . . there is always hope. Tonight, before I go to bed, I will step out onto the porch, look to the heavens, and survey the vastness of God’s glorious touch to witness the stars. I will breathe deeply of the cool nighttime air . . . close my eyes . . . and whisper, “Okay, God . . . one more time.” Then tomorrow I will get up and do it all over again. Yeah, my friend calls it SSDD . . . maybe it is the thin thread of hope . . . the spark to start the fire going one more time. I don’t know . . .
To my friend . . . to all those who carry this weight . . . I know your pain, your tiredness, your hopelessness. I also know, that you have seen the stars and that there is always hope. It may not seem like it right at this moment . . . but this too will pass. No, not the chronic illness or disability, but this feeling of hopelessness. Those stars that pierce the darkness are symbolic of the gifts of God’s presence that pierce the darkness of this roller coaster journey. They are all around . . . they may not know what to say or do . . . but they care and surround all of us with their love and prayers. They pierce the darkness of our world. There is hope . . . always hope. I know that you, my friend, will get up and do it all over again. Why? Because we care . . . because we love . . . and, because we do have hope. God hasn’t abandon us, so why should we abandon God?
Yeah, I am tired . . . but “this too shall pass.”
Hope . . . what a strange and terrifying trip!