For 7 years I've been facing this monster disease that seeks to destroy me. I move through the summer months able to easily hide the pain, knowing that when cooler weather comes, all will see my fragility. Each fall and winter, those who met me in the summer look at me in amazement as I shrivel....shrunken and held captive in the prison that is my own body. Time and time again, I hear the question asked, "How do you do it?"
I'm never really sure what I'm being asked. How do I manage to get out of bed each morning when the pain is so severe that I can barely take breathe into my lungs? How do I handle 3 kids, one with special needs, when I often need help dressing myself? How do I let total strangers into my home to bathe me? How do I tolerate only eating the same food day after day cause everything else makes me sick? How do I make it on only a couple hours sleep each night? How do I handle the stares of others when I'm out and about in my electric wheelchair? How do I deal with losing all my hobbies and activities that once filled my life? How do I accept that I have these illnesses and that there is really no treatment that helps and nothing anywhere near a cure?
The lists of questions that a person could potentially mean goes on and on. Yet, the answer to all of these is one and the same.
I do it the same way the woman who lost her breast to cancer takes her first trip to the beach afterward. I do it the same way a mother takes her autistic child grocery shopping knowing that he'll most likely meltdown from the sensory stimulation. I do it the same way the man goes to work each day to support his family despite his back being bent from years of hard physical labor. I do it the same way the child with ragged out hand me downs goes to school on picture day. I do it the same way the adult child sits by their dying parents bedside. I do it the same way a parent sits in the waiting room of the hospital when their child is undergoing surgery. I do it the same way a pre-teen with scars along their torso changes clothes for gym class. I do it the same way a cancer patient goes in to get their chemo treatment.
I think that Helen Keller said it best when she said, "Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved".
Ultimately though, I know, deep down inside where all knowing is absolute, that God has carried me through the past 7 years, just as He did many times before that. I have bad days like everyone else. I have days where I want to stay in bed and bury my head and cry myself into oblivion. I have days where I curse the doctors, specialists, pharmaceuticals companies, and researchers for not finding a treatment that works. I have days where I cry out to God and ask Him "Why? Why? Why?" But, each day I go to bed knowing that I am fortunate enough to have a tomorrow and that God is right there with me each step of the way.
For those of you struggling with the pain, remember that you are not alone. We are united as one through our pain and our struggles. We understand each other as no one else does.
For those of you who love someone struggling with the pain, take a moment to follow the link on this page to "The Spoon Theory". Take the time to support your loved one even though you don't understand. Don't expect us to be able to explain something that we don't understand or even know from day to day. Most importantly, thank you for loving us despite our conditions.
I'm never really sure what I'm being asked. How do I manage to get out of bed each morning when the pain is so severe that I can barely take breathe into my lungs? How do I handle 3 kids, one with special needs, when I often need help dressing myself? How do I let total strangers into my home to bathe me? How do I tolerate only eating the same food day after day cause everything else makes me sick? How do I make it on only a couple hours sleep each night? How do I handle the stares of others when I'm out and about in my electric wheelchair? How do I deal with losing all my hobbies and activities that once filled my life? How do I accept that I have these illnesses and that there is really no treatment that helps and nothing anywhere near a cure?
The lists of questions that a person could potentially mean goes on and on. Yet, the answer to all of these is one and the same.
I do it the same way the woman who lost her breast to cancer takes her first trip to the beach afterward. I do it the same way a mother takes her autistic child grocery shopping knowing that he'll most likely meltdown from the sensory stimulation. I do it the same way the man goes to work each day to support his family despite his back being bent from years of hard physical labor. I do it the same way the child with ragged out hand me downs goes to school on picture day. I do it the same way the adult child sits by their dying parents bedside. I do it the same way a parent sits in the waiting room of the hospital when their child is undergoing surgery. I do it the same way a pre-teen with scars along their torso changes clothes for gym class. I do it the same way a cancer patient goes in to get their chemo treatment.
I think that Helen Keller said it best when she said, "Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved".
Ultimately though, I know, deep down inside where all knowing is absolute, that God has carried me through the past 7 years, just as He did many times before that. I have bad days like everyone else. I have days where I want to stay in bed and bury my head and cry myself into oblivion. I have days where I curse the doctors, specialists, pharmaceuticals companies, and researchers for not finding a treatment that works. I have days where I cry out to God and ask Him "Why? Why? Why?" But, each day I go to bed knowing that I am fortunate enough to have a tomorrow and that God is right there with me each step of the way.
For those of you struggling with the pain, remember that you are not alone. We are united as one through our pain and our struggles. We understand each other as no one else does.
For those of you who love someone struggling with the pain, take a moment to follow the link on this page to "The Spoon Theory". Take the time to support your loved one even though you don't understand. Don't expect us to be able to explain something that we don't understand or even know from day to day. Most importantly, thank you for loving us despite our conditions.
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