Spending the afternoon in the ER is not how I thought I would spend this fine autumn day, but alas, it is how fate has chosen for me to spend my time. There is nothing more banal than a waiting room. I find it funny that the place we receive the best and worst news of our lives is spent in quiet sterility. We wait for children to be born often on the same property that we wait to lose our most dear. I waited for hours for my dear love to be saved from himself, crying in the awkward silence of a behavioral hospital. Today I wait to be seen because sometimes a routine illness goes on a tad to long and your trusted pcp won't see you for it anymore. I am not worried. I may have coughed up blood this morning, but it is far from the worst I have ever felt, emotionally or physically.
Living with chronic illness and disability has forever skewed my perception of normal. When you risk fainting every time you stand, it takes a lot to admit something is seriously wrong. Even today I am sure I am fine, but my fucking pcp expects me to shell out what is sure to be a massive medical bill for something that should have been minor.
It freaks out the people around me constantly, but my gauge for normal is about as off kilter as my balance, and I can't really fix that. I'd have to have a healthier body, and that is something I cannot fix, as much as I would like to.
Waiting rooms are weird. They're boring, sterile, and when I am the only one there, still waiting for an unholy time in this empty room, they are terrifyingly liminal. The aging pale walls and ugly vinyl furniture are disquieting in their brutal minimalism. The ambience of hushed voices and saccarine daytime television are a poor companion to the reality of this space. I am no longer in solitude, but the sound of mourning wails and end of life conversations are not a comfort. They do not pair well with the sunshine smiles of the price is right. A car has been won, a loved one lost. It is an eventful day underneath the divine fluorescent lights. The credits are rolling, my eyes are crossing. Smiling news anchors provide no solace.
I am not afraid, but the constant companion of my thoughts is far from a comfort. All of my friends are at work. I am too worried about triggering a panic attack in my love to reach out to him, though I constantly yearn to hear the smile in his voice. So I get to sit and think. In the hospital that he was born and family has died, I get to think.
I am reminded that my life is not permanent. My long list of my health problems, and the ominous catalogue of disorders potentially inherited by my loving mother follow me everywhere. I know I am unlikely to outlive him. This thought does not bother me. I do not particularly want to live in a world without him in it. It mourns me that our life together has an end date for better for worse. For as long as we both shall live is a promise of eventual grief, and no matter the agony, every second I spend by his side is worth it.
It is funny to me that I am trapped on two sides of a coin. To my loved ones I am the cute friend My wardrobe reflects that of a kindergarten teacher, and my presence intimidates exactly no one. When I tell people about my kink, how much I adore being under the hypersensitive attention of my husband, I am more likely to receive coos of adorable and sweet than any type of surprise.
I may be all cottages and tea cozies, but inside my head, I hold storming thoughts that cannot help but revolve around the morbid reality of my health. I have always been disabled. From mild cerebral palsy, to POTS, to Autism. I do not regret any of this or wish it away. It is a part of my story and has made me endlessly tenacious.
On my right hand I wear a ring with a silver rose. It is a reminder of all that I have overcome in life. It's presence pays homage to my endless potential that does not stop fighting in the face of societal barriers. My mother has always called me her winter rose. I have always bloomed in adversity, and though at times I may have lagged in my development, I grew up in my own time. You do not expect a blood red bloom in the torrent of a blizzard, and though doctors, teachers, and a long line of bosses have said I would not amount to anything, I persisted in my own time.
I can be two things at once. I can be proud of my strength and terrified of my future. I can find identity in my struggles and be haunted by the screams of pain from my mother that perhaps may be a vision of my own decline. I have the benefits of early intervention that she lacked, but with chronic illness, life holds no promises. At the core of all of this, I am frightend. I am strong, but it is not easy to be surrounded by my thoughts. I can only distract myself with mundane scrolling for so long. When thoughts ring in my ears like a 21 gun salute, there is very little I can do to block it all out completely.
I hope a doctor comes to see me soon. I will be fine. I will be strong, but my mask of comedy is cracking. I cannot laugh with a bleeding throat.
Living with chronic illness and disability has forever skewed my perception of normal. When you risk fainting every time you stand, it takes a lot to admit something is seriously wrong. Even today I am sure I am fine, but my fucking pcp expects me to shell out what is sure to be a massive medical bill for something that should have been minor.
It freaks out the people around me constantly, but my gauge for normal is about as off kilter as my balance, and I can't really fix that. I'd have to have a healthier body, and that is something I cannot fix, as much as I would like to.
Waiting rooms are weird. They're boring, sterile, and when I am the only one there, still waiting for an unholy time in this empty room, they are terrifyingly liminal. The aging pale walls and ugly vinyl furniture are disquieting in their brutal minimalism. The ambience of hushed voices and saccarine daytime television are a poor companion to the reality of this space. I am no longer in solitude, but the sound of mourning wails and end of life conversations are not a comfort. They do not pair well with the sunshine smiles of the price is right. A car has been won, a loved one lost. It is an eventful day underneath the divine fluorescent lights. The credits are rolling, my eyes are crossing. Smiling news anchors provide no solace.
I am not afraid, but the constant companion of my thoughts is far from a comfort. All of my friends are at work. I am too worried about triggering a panic attack in my love to reach out to him, though I constantly yearn to hear the smile in his voice. So I get to sit and think. In the hospital that he was born and family has died, I get to think.
I am reminded that my life is not permanent. My long list of my health problems, and the ominous catalogue of disorders potentially inherited by my loving mother follow me everywhere. I know I am unlikely to outlive him. This thought does not bother me. I do not particularly want to live in a world without him in it. It mourns me that our life together has an end date for better for worse. For as long as we both shall live is a promise of eventual grief, and no matter the agony, every second I spend by his side is worth it.
It is funny to me that I am trapped on two sides of a coin. To my loved ones I am the cute friend My wardrobe reflects that of a kindergarten teacher, and my presence intimidates exactly no one. When I tell people about my kink, how much I adore being under the hypersensitive attention of my husband, I am more likely to receive coos of adorable and sweet than any type of surprise.
I may be all cottages and tea cozies, but inside my head, I hold storming thoughts that cannot help but revolve around the morbid reality of my health. I have always been disabled. From mild cerebral palsy, to POTS, to Autism. I do not regret any of this or wish it away. It is a part of my story and has made me endlessly tenacious.
On my right hand I wear a ring with a silver rose. It is a reminder of all that I have overcome in life. It's presence pays homage to my endless potential that does not stop fighting in the face of societal barriers. My mother has always called me her winter rose. I have always bloomed in adversity, and though at times I may have lagged in my development, I grew up in my own time. You do not expect a blood red bloom in the torrent of a blizzard, and though doctors, teachers, and a long line of bosses have said I would not amount to anything, I persisted in my own time.
I can be two things at once. I can be proud of my strength and terrified of my future. I can find identity in my struggles and be haunted by the screams of pain from my mother that perhaps may be a vision of my own decline. I have the benefits of early intervention that she lacked, but with chronic illness, life holds no promises. At the core of all of this, I am frightend. I am strong, but it is not easy to be surrounded by my thoughts. I can only distract myself with mundane scrolling for so long. When thoughts ring in my ears like a 21 gun salute, there is very little I can do to block it all out completely.
I hope a doctor comes to see me soon. I will be fine. I will be strong, but my mask of comedy is cracking. I cannot laugh with a bleeding throat.
