What drew me to her was her to-the-waist gleaming light brown hair. I spotted Carmella one evening at a Unitarian Fellowship party on the deck and my feet took me to her almost before I was aware of my own steps. "Your'e hair is so beautiful," I said and she turned her face to me and we knew we had met a co-spirit. Soon we were talking about everything that mattered, including our mutual obsession with the game of Scrabble. Carmella, I soon discovered, was to me, the depth of the earth and the height of the sky. She taught me how to understand the phases of the moon, so that bright light in the sky became my friend. She told me about the galaxies and knew the names of stars. The night we met, we looked up together. The sky was so clear that swirls of stars looked as if the gentle brush strike of an artist had been swept across the nigh sky. I soon discovered as I came to know this glorious woman, that looking up in any situation was Carmella's way of being in the world - not that she stopped being human and getting pissed off at people; in fact she was the one who occasionally swore up a blue-streak right there in the grounds of the Unitarian Fellowship. She shamelessly used the word "fuck," and it slipped off her tongue as if it was a perfectly decent thing to say in certain circumstances, and since then I have been, without so much a flinch, able to use it myself when I found no other effective way to express frustration. Being an English woman, I knew such a thing was deeply frowned upon, and it took 60 years to make it feel safe for me to use the word, because it came from Carmella's mouth and she was one the best human beings on earth. How liberating the sparse use of of "fuck" feels to me now! We became enthusiastic Every-Sunday-Scrabble-Players - turned our cell 'phones off and played for hours on end. Occasionally we would halt the game if a word cropped up on the Scrabble board that evoked a "Cheater - that's not a word!" We had to reluctantly use the Scrabble dictionary but we both expanded our vocabularies with words one of us had questioned, but which generally proved to be real words, to the challenger's dismay. Philosophical discussions and sprinklings o of delicious gossip often interrupted the games, as did the joy of strawberries, grapes and chocolate and an overindulgence of gummy bears! These were some of the richest times our lives and, unlike other life-memories of moments that may been under-appreciated at the time and valued only in retrospect, Carmella and I recognized those moments as we lived them as true treasures. When she left to drive home because she had work the next day, it was often midnight or later, after 5-6 hours of Scrabble, I would walk with her to her car and we'd always stop and look up at the night sky and ponder silently for a few minutes about the smallness of ourselves standing under the vastness above us. If the moon was full or waxing or waning, Carmella would tell me how she communicated her thoughts and wishes to it, as if it was a benevolent old friend, and I learnt from her how to look up, not only at sky but at the wholeness of life - the wholeness of humanity and nature. Our friendship was, for both of us (she was fifty and I, sixty, when we met) kind, loving, loyal, forgiving and completely honest. We sniped at each other when our egos intruded, but not often, and we knew that our friendship was unbreakable. Carmella had one daughter and a two-year old grandson. She saw them often and took care of her little grandson with joy and fun. Because she was so creative and her imagination was wild and untethered, those who knew her often gained a kind of permission to feel they could use their own wings and fly free. Carmella's partner of many years was a jovial Italian and a great cook making meals, to which I had an open invitation, of tasty sauced, spicy meats and perfectly cooked vegetables. Always welcome to come and "Mangiare, Mangiare," I spent many delightful hours with these overwhelmingly generous and huge-hearted people. At meals we would laugh and laugh - so much raucous laughter - though I don't remember exactly what we were laughing about: perhaps it was the joy of each other's company that lifted our spirits so high that almost everything was funny! The fundamental life values Carmella and I shared were so aligned that our clashes were just those of personality rather than character. She was a compulsive perfectionist, whereas I flew by the seat of my pants. I had no problem leaving dishes in the sink for a few hours, she had to get them washed and stored immediately: I washed my car when the dirt was obvious: she washed hers weekly. We respected our differences without having to change ourselves, though we both adapted if there was potential for an all-out war! Four years after we met, the symptoms began. Carmella told me she had little twitches in her hands, but because there was some tension between her and her only daughter, she attributed it to stress. But twitches started to affect her arms, then they become more widespread. Her mother had passed from dementia the year before and Carmella had told me she herself would never want to die from that disease, having watched the gradual diminishing of her beloved mother's mental capacities. Doctors told Carmella that there was no sign of dementia and that the twitching was probably caused by stress, but Carmella told me she knew it was more than that. So much in tune with nature, her own feelings and her own body: she knew it was serious. So she and I planned a trip to Las Vegas for four days because I was lucky enough to have some complimentary rooms in The Mirage. As "living in the moment" women, she and I had the greatest vacation possible in crazy Las Vegas! We ate delectable meals, gorged at the buffets until we could barely move and expected to be ejected for eating too much! We saw a number of shows including silly reviews, Cirque du Soleil's "The Beatles" and "Jersey Boys." We gambled a little and laughed a lot. (The night sky in Las Vegas was there somewhere, but invisible among the flashing neon that is Vegas!) Neither Carmella nor I mentioned her symptoms and it was a perfect trip. A magical trip that happened because it was meant to. A month after our trip, Carmella's and Joe had to move to Reno, because of work responsibilities. She was so sad to leave her grandson, and before long she could no longer hold him or even go to see him because of her because of her increasing weakness. I know it broke her heart, though she didn't complain. Her whole body weakened and she diagnosed herself - accurately, but it took many frustrating months and doctors to agree on the definitive diagnosis that Carmella had been sure of weeks before by knowing her own body and implicitly trusting her own intuition. She had Lou Gehrig's disease (A.L.S.) Carmella knew how that disease would progress and what the dreadful prognosis involved. She wasn't in denial and didn't try to negotiate with God, or resist the truth. I was in denial at first. My rational mind, as a nurse, knew illness could be misdiagnosed, and hoped against hope that this was the case. A woman so young, so good, so loved-how could that be? But my intuition sensed only dread. The disease progressed quickly and there was no further doubt. Now I saw even more of the wondrous, courageous woman Carmella was. Her voice and words never suggested a tone of "Why me?" or "Not fair," that kind of reaction just wasn't in nature. I had moved from California to N. Carolina, but we spoke daily on the 'phone, until her exhaustion made daily calls too distressing. We were able to speak 3-4 times a week, though only for a moment or two. When I asked "What can I do for you?" she said simply "Please just don't be sad." She knew that would be very difficult for me, but because I promised and I loved her so profoundly, I chose not to be sad for her sake and mine. The sadness would come later. She continued to sound like her warm self, but I could tell it was an effort. Joe told me she slept most of the day, couldn't eat because she had no appetite and was beginning to choke on even very soft foods, so was quickly getting weaker. Her emotional strength was remarkable, though her body was suffering with no chance of recovery. New symptoms in her throat showed that not only did she have Lou Gehrig's disease, she also had throat cancer. Normally a dreaded diagnosis for anyone, but to Carmella it was a silver lining because the doctors believed the cancer would take her first, so she would be spared the devastating final denigration of her body to A.L.S. I was as relieved and grateful for that as she was. She still spoke to me and laughed and showed interest in my life, but she could no longer hide her weariness. It was late September and I booked a flight to Reno from N.Carolina. There was no need for me to pretend not to alarm her with my sudden visit; she knew exactly what was happening to her. When I arrived Joe picked me up at Reno airport and told me that Carmella had been hospitalized that day, and also that she had been admitted to St. Mary's hospital in Reno several times before with her electrolytes so low that she had been barely conscious. I went straight to the hospital and we wept together. She was propped up in bed in her own room with nasal oxygen and an I.V replenishing her diminished electrolytes. She was very tired so we talked a while and I sat with her when she slept. She looked shockingly thin and her lovely waist length hair had been cut short, because she could no longer use her arms and hands to wash it, so Joe had been doing it for her. She was still beautiful and serene but overcome with exhaustion. I was so grateful to see the nurses and doctors at the hospital give her outstanding and compassionate care, and Carmella never failed to thank them. Two days after I had arrived in Reno, she was sent home, her electrolytes balanced once again by I.V fluids, but watching her health decline so rapidly was so heart-rending I could barely breathe. Now in a wheelchair and unable to walk without help, her once strong, sturdy legs that had loved to hike in the mountains now could not hold her up. They looked like those of an emaciated six-year old. She could barely move but she told Joe that she wanted to go to a casino and have a buffet while I was there. I knew it would be a struggle for her, but she insisted. I knew why and she knew that I understood why, but it was unspoken because we knew each other so well. This act of kindness, remembering our wonderful time together in Las Vegas, was so typical of Carmella's beautiful spirit. At the all-you-can-eat buffet all she could manage was mashed potatoes thinned with milk, but she choked on them and could only swallow a a tiny spoonful. Joe took a photo of Carmella and me. We were smiling. Sadly and very reluctantly, I had to leave two days later and I knew would see her again: I also knew I wouldn't. She died in her sleep at home six days later in early October. On the night before that first Halloween I stood outside my home and looked at the night sky as I did every night and asked, "Carmella, I miss you so much. Are you up there with the moon and stars?" "No need to look up" she whispered. "I am down here next to you-next to everyone and everything. We can still look at the stars togethers
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With my amyotrophic lateral sclerosis (ALS), the first thing that happened almost 2 years ago now, was speaking as if I were drunk. I wasn't. I initially did improve speech (articulating clearly but slow) but now I can no longer speak in an acceptable way. Then, a year later eating became problematic, I was biting my tongue and lips, and chewing became weak and less controlled. Soon after that some fingers started to fail me and things would drop out of my hands. Somewhere at that time bulbar ALS was diagnosed. The Rilutek (riluzole) did ver...
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This is a true story, with a name change. I could not edit on your website. There were some editing changes I wanted to make.
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