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Should I Stay or Should I Go Now

So, it turns out that, to be or not to be really IS the question! Not being a philosophical girl - - I would say I've been guided more so by passion rather than philosophy. For better or worse I am fiercely passionate about who I love and who I don't. What I love, what I don't. I never made much time to ponder the eclectic or existential. Probably my loss, but that's how I roll. I even had trouble nailing down how to write affirmations! It was the bane of my existence when I first moved to LA -- knowing I'd never be a true Californian if I couldn't get my affirmations positive, for Pete's sake! But I stray. I am now really struggling with my existence or just existing to be honest. I have lost the use of my hands now, so no phone calls, no texting, writing, not to mention the options to scratch an itch, swipe a hair on my face. Pet my dogs! My horse! Suffice it to say, I am pretty f'ing depressed. I mean who am I any more? Are we our thoughts? And if I can't express them? Am I alive? I promise you I am not trying to be dramatic (although I acknowledge, I have been known to travel down that road!) Also, as if this isn't enough, I'm feeling shame that I have ALS. Not so much that it's my fault, but like, what right do I have to take up space? To take up people's time and energy? Not only has ALS destroyed my life and future, but it's taken away so much from Bill's too. The other morning, Bill woke up and whispered to me, "I miss you." Broke my heart.


This is a time in my life where it wouldn't hurt to look back at paths not taken, stones left unturned. Do I have Big Regrets? I don't think too many. I wish I'd been a little nicer to some people, wish I was less neurotic about my looks. I regret not finishing my book, Cher And Cher Alike or You're Shitting On Your Chakras and other Stories of Being a Cher Impersonator. I wish I'd seen Scotland, Rome and I had produced and starred in The Real Housewives of Barn D. My tagline would have been, "does this saddle make my butt look big?"

And now for some better news. I'm sorry I've been such a downer. I have been writing this with a Tobii computer using my eyes! This was donated to us by an ALS foundation, until we can hopefully get one through insurance. I have to thank Hilary Carlip and Bill Doyle for putting in so many hours to get this hooked up to a phone so I can text once again, and to my email accounts. If I told you how ridiculously long this is taking, you would accuse me of exaggeration! Bill is even having to enter my contacts manually. This much I know to be true -- Bill needs to sleep more and curse at inanimate objects less! Now regarding that, he hasn't gone crazy, our house has. The living room looks like a civil war infirmary!! Medical equipment as far as the eye can see! Between that and both of our large dogs insisting that the best place to lie down is immediately behind him, Bill is fighting a losing battle. Trust me, if I COULD talk, I would be swearing like a sailor! As always I have to thank my Team Smokey, a group of angels, including Frank and Cece, Bobbi, Pat and Paul, Nori, Amanda and Debbie, Seth and Charlie, for loving on my horse, thank Benji for being such an awesome baseball player, Alex for being such a great nurse, Ruth! Thank Richard for being patient as we try to finish our script. Gailyn, my generous partner, Sonia, Joan, Judith! David, Corey and Jason, my brothers Curtis and Joe. Lika, Deb, Jaime, Liz and Eddie, Eve, Denise, Lars and all my friends, my family, who continue to visit and care. I am sorry I missed your name. I probably shouldn't have started this in the first place. As Bill said, naming names never got anyone, anywhere good.


My eyes hurt from all this typing, Shit! Now I finally understand those Oscar winners who plead not to be played off! Oops, too late. The music has already started. Lissa Negrin

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