Had I not gotten ALS, I would not have met and experienced so many interesting people nor experienced the depths of people I already knew.
Through the ALS Association Evergreen Chapter, I met an extraordinary couple with expansive hearts who turned their personal ALS journey into a lasting mission benefiting persons with ALS (PALS) in our region.
Because of them, I personally benefited: by having a platform in which to connect one-to-one with other PALS, demystifying the disease and its processes; by being able to borrow necessary durable medical equipment as it became necessary with a fast-progressing paralyzing illness; by becoming empowered to do what I can to fight for a cure; by being offered educational resources and opportunities to learn about aspects of the disease I, otherwise wouldn't have been aware of.
This amazing couple continue to allow PALS, their families, and caregivers meet right in their living room. Carl's first-hand insight and zany sense of humor cannot help but offer levity to countermand the deadly seriousness of a difficult and fatal disease. His lovely wife, Merilyn, provides loving compassion, a wealth of caregiver knowledge, and seemingly unconditional acceptance. Carl's mother provides yummy snacks and the example of loving familial support. Carl's sister-in-law provides capable hands-on leadership of the chapter, traveling to our nation's capitol to lobby support group for favorable change and financial support for PALS and their families.
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Through the support groups sponsored by ALSA, I met many people who made an impact on me. I couldn't name them all, but allow me to single out a few. Not only was I dealing with my ALS diagnosis and the chemical imbalance of frontotemporal disease or PseudoBulbar Affect, (unbeknowst to me), I was in deep psychological pain over being fired from my last paying job when I was compelled to file a worker's compensation claim. (At the time, I had no inkling that my malfunctioning right hand and arm was ALS; I thought I had an overuse, repetitive injury).
I connected with Leo right off, he gave me peer acceptance being an accountant and salved my heart-searing wound with his bear-hug, loving attitude. His wife and caregiver, Karen, is a beauty inside and out. She took my husband and I into her heart and home. One day we ran into her at our local Fred Meyer grocery, she invited us home for a simple dinner on the patio, wheelchair and all. That acceptance and love meant the world to both my husband and myself. Over the top, Karen bestowed a wonderful gift on me, one of her gorgeous handmade quilts made from fabrics from Japan. I use it every single day and drink in the beauty, thinking of her and Leo.
Stephanie and Matt are my heros. Stephanie lost her mother to fast-progressing ALS and she got handed down a slower progressing version of familial ALS. Stephanie is the real deal; she broke me out of the hospital the first time my husband tried to stick me in a nursing home against my will. Matthew, a Microsoft geek, has a huge heart and actually installed my bidet system to my toilet when my husband refused. They are tireless supporters, set on finding a cure. They travel to Washington D.C. lobbying for support and Stephanie undergoes testing literally donating her body to find that elusive cure.
Marc West and his wife, Patra were at our first support group meeting. Marc's symptoms matched my own, I thought we'd progress together and be buddies in our journey. Unfortunately, I never got the chance to have a heart to heart, Marc progressed so fast that he couldn't get out to our meetings. Nonetheless, Marc and Patra captured my heart and continue to amaze me. Raising money and awareness in spite of being on a ventilator, continuing to work at Group Health, and be a loving father to his 8-year old daughter!
Ann Eichmeyer, what can I say?! The compassion, patience, and love of a saint and the beauty of a model. I say these things about her because I've experienced her tenderness in the face of my raging emotions (pre-medication). She never failed to greet me like a cherished loved one, smiles and hugs. She ran a bedside commode out to me the day I requested it rather than wait for a delivery truck. She made the support group meeting at Bailey Boushay House a priority, bringing us a bit of sunshine and happiness to the mundanity of hospice. Always compassionate and loving. I won't forget her.
There are many more deserving mention but my strength wanes, watch for another installment of ALS Gifts: People. Thank you for reading.
Through the ALS Association Evergreen Chapter, I met an extraordinary couple with expansive hearts who turned their personal ALS journey into a lasting mission benefiting persons with ALS (PALS) in our region.
Because of them, I personally benefited: by having a platform in which to connect one-to-one with other PALS, demystifying the disease and its processes; by being able to borrow necessary durable medical equipment as it became necessary with a fast-progressing paralyzing illness; by becoming empowered to do what I can to fight for a cure; by being offered educational resources and opportunities to learn about aspects of the disease I, otherwise wouldn't have been aware of.
This amazing couple continue to allow PALS, their families, and caregivers meet right in their living room. Carl's first-hand insight and zany sense of humor cannot help but offer levity to countermand the deadly seriousness of a difficult and fatal disease. His lovely wife, Merilyn, provides loving compassion, a wealth of caregiver knowledge, and seemingly unconditional acceptance. Carl's mother provides yummy snacks and the example of loving familial support. Carl's sister-in-law provides capable hands-on leadership of the chapter, traveling to our nation's capitol to lobby support group for favorable change and financial support for PALS and their families.
.
Through the support groups sponsored by ALSA, I met many people who made an impact on me. I couldn't name them all, but allow me to single out a few. Not only was I dealing with my ALS diagnosis and the chemical imbalance of frontotemporal disease or PseudoBulbar Affect, (unbeknowst to me), I was in deep psychological pain over being fired from my last paying job when I was compelled to file a worker's compensation claim. (At the time, I had no inkling that my malfunctioning right hand and arm was ALS; I thought I had an overuse, repetitive injury).
I connected with Leo right off, he gave me peer acceptance being an accountant and salved my heart-searing wound with his bear-hug, loving attitude. His wife and caregiver, Karen, is a beauty inside and out. She took my husband and I into her heart and home. One day we ran into her at our local Fred Meyer grocery, she invited us home for a simple dinner on the patio, wheelchair and all. That acceptance and love meant the world to both my husband and myself. Over the top, Karen bestowed a wonderful gift on me, one of her gorgeous handmade quilts made from fabrics from Japan. I use it every single day and drink in the beauty, thinking of her and Leo.
Stephanie and Matt are my heros. Stephanie lost her mother to fast-progressing ALS and she got handed down a slower progressing version of familial ALS. Stephanie is the real deal; she broke me out of the hospital the first time my husband tried to stick me in a nursing home against my will. Matthew, a Microsoft geek, has a huge heart and actually installed my bidet system to my toilet when my husband refused. They are tireless supporters, set on finding a cure. They travel to Washington D.C. lobbying for support and Stephanie undergoes testing literally donating her body to find that elusive cure.
Marc West and his wife, Patra were at our first support group meeting. Marc's symptoms matched my own, I thought we'd progress together and be buddies in our journey. Unfortunately, I never got the chance to have a heart to heart, Marc progressed so fast that he couldn't get out to our meetings. Nonetheless, Marc and Patra captured my heart and continue to amaze me. Raising money and awareness in spite of being on a ventilator, continuing to work at Group Health, and be a loving father to his 8-year old daughter!
Ann Eichmeyer, what can I say?! The compassion, patience, and love of a saint and the beauty of a model. I say these things about her because I've experienced her tenderness in the face of my raging emotions (pre-medication). She never failed to greet me like a cherished loved one, smiles and hugs. She ran a bedside commode out to me the day I requested it rather than wait for a delivery truck. She made the support group meeting at Bailey Boushay House a priority, bringing us a bit of sunshine and happiness to the mundanity of hospice. Always compassionate and loving. I won't forget her.
There are many more deserving mention but my strength wanes, watch for another installment of ALS Gifts: People. Thank you for reading.
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