ALS has not just changed my life. It has rocked the world of those who love me, especially my primary caregivers, my sister Laura and my husband, Evan. My friend Glynis Murray knows all about life with ALS as she cares for her husband. Read her blog "Life After ALS: A Caregiver's Journey" to get a new perspective on the battle against this awful disease. Caregivers are warriors, too!
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Look at these peonies my husband brought home for me! They were a bit heavy for me to hold, but my sister helped out and we got this shot. It's amazing what his little surprises do.They remind me I am not just a sick person; I'm still a wife and a woman.
ALS doesn't just a destroy your body; it can also destroy your sense of self-worth. As I need more and more care, it is hard to believe I am not a burden. My sense of value is under constant siege.
Fortunately, I have found that kind words often come when I least expect them and most need them. My heart swelled when an angel from my past posted this on Facebook: My sweet, brave friend whom I have known since she was a little girl is fighting for her life after being diagnosed with ALS at 28 years old. I babysat for Rachel, and she has a true gift. She is one of the most talented and eloquent writers, and this was evident even before her diagnosis. Now she uses her gift to spread awareness about her diagnosis, her daily fight and what we can all do to find a cure. Follow her story. Her words are eloquent, real and amazing. If you are feeling generous, donate to the ALSA on her behalf. If you can't donate monetarily, donate with prayers for this sweet, amazing and beautiful girl. It is a privilege to call her a friend and to have known her since she was 5. Love you, Rachel. Friends, never hesitate to tell a sick friend what you admire about him/her. Let your friend know that despite needing more, he/she is still a bright spot in your life. Healing words strengthen our hearts and our will to fight in a way no medicine can. For every dose, we are more grateful than words can express. ![]() Since my diagnosis, I have come up with elaborate methods for convincing myself I am OK with losing the chance to be a mother. I have a list of why kids would destroy my marriage and sense of self. I avoid places where children flock and families are happy (Salt & Straw Ice Cream Shop down the street is off limits on sunny weekends). I even tell myself this story: Evan and I get our wish; we have a baby! However, from the very start, we know something is wrong. The baby looks at us with a wicked gleam in his eyes. Before we know it, he is escaping his crib and biting our fingers and toes in the night. At school, he puts slugs in the other kids' jello and sets fire to his library books just to deprive his classmates of the joy of reading. Next thing we know, he is a juvenile delinquent. He kidnaps us, loads us up in a stolen car, and keeps us captive in an abandoned hacienda in Argentina. It's not so far-fetched. Think about it. Every maniac and psychopath you've ever heard of had a mom and dad. It's totally possible Evan and I have narrowly avoided creating the next Voldemort. I like to think that. Every now and then, though, I'm caught off guard and have no time to conjure images of evil Baby Doboga. Like when Laura and I were watching "New Girl" and a commercial for a fertility clinic came on. A picture of an ultrasound drifted across the screen and I made this sound. I didn't know humans could make a sound like that. It was instant and animal. I can't even tell you what I was thinking. I'm not even sure I was thinking yet. My reaction was pure instinct. Then pain and fury rushed in, and I ground my teeth and shut my eyes to hold it back. I don't want to feel that again. Laura understood right away. She grabbed the remote and switched to "Broad City," a show featuring the funniest and least maternal women I've ever seen. "It's fine now," she said. "What are you thinking we should do when mom visits next week?" That's how we erase it, or at least bury it. We have to. A person can only feel so much at one time. We have to pick and choose which hurts to feel. However, I still think of that awful sound. Whatever savage pain made it lives on in the shadows of my heart and the twist of my intestines, deeper and stronger than my bones. I got some great advice from a nurse as I struggle to accept all the new braces I need. She said, "Whether or not you accept help doesn't change the fact that you need it." I think this advice applies to so many other aspects of my life. As I try to maintain my independence, I know her words will be helpful to me.
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Hello!
My name is Rachel. When I was diagnosed with ALS at age 28, I lost my teaching career, my plans to travel, and the chance to start a family with my husband. I lost my future. I almost lost hope, but being surrounded by so many people unwilling to let me go, I stepped back from the edge of despair. Now I am determine not to let a day go by without smiling, laughing, and fighting for my life. ArchivesCategories
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