I have ALS. And it sucks. But, I'm handling it. I am not ALS. The misery is not every second of every day. I find joy in the simple and the real. I applaud and envy those people who have family who gather round them to care for and love them to the grave. I don't have that. My family ignores me, and worse, reaches out with hateful, uncaring messages, worse yet, they blame me. That way, they can go about their lives guilt-free.
My family have all retreated into their various dysfunctions. My biological sister,into her "blame the victim" hostility stance. Whipping up her life long resentments until she's hard of heart and spoiling for a fight at the drop of a hat. Hair trigger, comes to mind. Even wrangling her best friend to throw barbs when she cannot. I've felt it absolutely necessary to ban her from. my life for self preservation. She has violent tendencies. Just listen to how quickly she wants to "kick my ass" or anyone else who doesn't agree with her. Like she is forever mired in the fog of junior high.
My mother, into her online gambling addiction and hiding behind fibromyalgia. I know she's getting older but really? She seems to manage to see my other sisters. I can understand somewhat but what about simple communication? It breaks my heart when I've seen her post to my brother ona message that originated with me. My stepfather is wrapped up into caretaking mom and my half sister and working. My half sister is battling multiple myeloma, going to school,and carrying on a relationship with children. She, at least tries. My half brother can only manage a "Hey sis, I love you" once per quarter. He doesn't live anywhere near here. But, he tries. And, I actually believe that he prays for me.
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And then there is my husband, the love of my life, who tried to be a good husband until ALS. He started off committed to my care and our relationship but quickly fell into crazy-making behavior. He took charge of my meager medications and my cornucopia of supplements then harassed me for setting alarms so I wouldn't miss a dosage. Telling me so many times, lovingly, when people let me down, that he would take me to water aerobics, only to complain the whole trip. Telling me he would be there for me, only to leave me to cry alone in a bedroom, on the hallway floor, or wherever he'd leave me to cry my eyes out.
Unbeknownst to me, I was afflicted with a complication of ALS, either frontotemporal disease (FTD), or PseudoBulbar Affect (PBA). Both, treatable with medication, If you know what it is and how it presents. In me, it presented as hyper-emotionalism, poor impulse control, and eventually, heightened sexualism. (Not so great when your world's crashing around you as your spouse packs up to leave and you're quickly succumbing to quadriplegia.) Anyway, I had a lot to hurt over and my mate was ill-prepared to handle the depth of grief, anger, sense of betrayal, even my optimism. Even now, modestly medicated, monitored, and under the care of a psychologist, he cannot deal with any hint of negative emotion.
.
My family have all retreated into their various dysfunctions. My biological sister,into her "blame the victim" hostility stance. Whipping up her life long resentments until she's hard of heart and spoiling for a fight at the drop of a hat. Hair trigger, comes to mind. Even wrangling her best friend to throw barbs when she cannot. I've felt it absolutely necessary to ban her from. my life for self preservation. She has violent tendencies. Just listen to how quickly she wants to "kick my ass" or anyone else who doesn't agree with her. Like she is forever mired in the fog of junior high.
My mother, into her online gambling addiction and hiding behind fibromyalgia. I know she's getting older but really? She seems to manage to see my other sisters. I can understand somewhat but what about simple communication? It breaks my heart when I've seen her post to my brother ona message that originated with me. My stepfather is wrapped up into caretaking mom and my half sister and working. My half sister is battling multiple myeloma, going to school,and carrying on a relationship with children. She, at least tries. My half brother can only manage a "Hey sis, I love you" once per quarter. He doesn't live anywhere near here. But, he tries. And, I actually believe that he prays for me.
.
And then there is my husband, the love of my life, who tried to be a good husband until ALS. He started off committed to my care and our relationship but quickly fell into crazy-making behavior. He took charge of my meager medications and my cornucopia of supplements then harassed me for setting alarms so I wouldn't miss a dosage. Telling me so many times, lovingly, when people let me down, that he would take me to water aerobics, only to complain the whole trip. Telling me he would be there for me, only to leave me to cry alone in a bedroom, on the hallway floor, or wherever he'd leave me to cry my eyes out.
Unbeknownst to me, I was afflicted with a complication of ALS, either frontotemporal disease (FTD), or PseudoBulbar Affect (PBA). Both, treatable with medication, If you know what it is and how it presents. In me, it presented as hyper-emotionalism, poor impulse control, and eventually, heightened sexualism. (Not so great when your world's crashing around you as your spouse packs up to leave and you're quickly succumbing to quadriplegia.) Anyway, I had a lot to hurt over and my mate was ill-prepared to handle the depth of grief, anger, sense of betrayal, even my optimism. Even now, modestly medicated, monitored, and under the care of a psychologist, he cannot deal with any hint of negative emotion.
.
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