Entering the labyrinth of vintage furniture store Lounge Lizard, where the test begins. Do not be distracted by baubles, for the path is fraught with many dangers and temptations. You see, the ultimate test of wheelchair agility is successfully navigating a vintage store without breaking anything... Even when adding a tiny dent might drive the … Continue reading The Wheelchair and the Labyrinth
Warning: Excessive Marvel references ahead. This is not the story I wanted to write today. I planned on sharing something emotional and joyful. It was going to be a bigger piece, and I looked forward to a long stretch of appointment-free hours to get it done. However, ALS doesn't care about plans. Like Loki in … Continue reading Welcome to the Helicarrier
Lately, I've been worrying a lot about my identity. So much is changing at what feels like breakneck speed. My body in particular is alien to me. I swing between thinking I am an ALS research guinea pig, a robot incorporating new mechanisms to extend the life of what is clearly a junker, or, most … Continue reading Far From FDR
"You do not need to leave your room. Remain sitting at your table and listen. Do not even listen, simply wait, be quiet still and solitary. The world will freely offer itself to you to be unmasked, it has no choice, it will roll in ecstasy at your feet" - Franz Kafka. Those of you … Continue reading Don’t Talk-A-Thon: Part 3
Hello all! I'm already impressed, touched, and overwhelmed by your stories of how your hour of silence went today. I would LOVE to share your stories of silence; it would be amazingly powerful to have them all in one place. Please consider sharing your experience below. If you are not able to spend an hour … Continue reading Don’t Talk-A-Thon: Part 2
Today is the Don't Talk-A-Thon, a fundraising event in which participants vow an hour of silence in support of those who are forever silenced by ALS. In honor of this special event, I am sharing a very personal and painful story about the first time that ALS stole my voice. Remember, for me and countless … Continue reading Don’t Talk-A-Thon: Part 1
Seeing my mom reminds me I am changing, though slowly relative to most other people with ALS. When she visits, there is always a lot for her to learn: the new way to help me dress, which silverware I can handle, what medicine I take at night. The list goes on. My sister and husband … Continue reading A Seat at the Table
It's scary to show people just how sick I am. I let visits go way too long to avoid cutting people off or kicking them out, then end up exhausted with worse speech than ever the entire next day. I feel so guilty cancelling plans; after I do it enough times, I am sure I've … Continue reading Love and Dirty Dishes
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 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 … Continue reading Another Point of View
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 … Continue reading Deeper Than Bone
How I Live Now: Life With ALS 