Skip to main content

Clarification For the Love of It

While some people really Like and appreciate my blog, I learned that some members of my family are looking at as hurtful. I would like reassure my family that I love them and treasure them. I would also like them to know that my blog contains thoughts, feelings and perceptions at one point in time. This blog contains bizarre dreams brought on by stress and medication, mild though it is. I write to "exorcize my demons" so to speak.  I write to connect with fellow PALS (people with ALS), caregivers of PALS, fellow people in recovery, and the curious.

Can you imagine losing the power of speech and not be able to bounce ideas off of your best girlfriend; not be able to profess your love to your lover; not be able to confess a sin with your own lips; not be able to scream out your pain; not be able to call your sponsor; not to be able to sit with you and discuss an issue rationally?

My blog is a composite of who I am, who I used to be, and who I don't want to be. This blog is my best friend and my priest.

Comments

Popular posts from this blog

Kate

I think about my friend, Kate Struby, who died from this horrible disease in 2013. She lived here at Bailey Boushay House before I did. I reached out to Kate online through FaceBook because I loved her photograph with her head thrown back in laughter. I also loved her posts. I guess I just loved her spirit. I got to finally meet her one month before she died. I happened to be at the University of Washington Medical Center for my quarterly appointment when I saw her FaceBook post. She was awake and in the medical ICU. She was a mere few floors down. I would not be stopped. Relativeor no, I would meet my FaceBook friend. Thank God I did. I rolled into the room to find a beautiful, ethere.al woman flanked by two friends. Although it was an impromtu visit, she said she knew me immediately.I was in awe of her with her fiery spirit despite the ravages of our shared disease. She, unable to lift even a finger, lifted my spirit.

Immersion Therapy

Please excuse my selfish absence from posting to my blog. I wish I could say that I've been out diligently finding a cure for ALS, or tirelessly working to fund research, or hunger-striking to bring public attention to beacon the cruelty of not having access to care facilities geared specifically to the specialized needs of the ALS patient. Alas, I have been binge-watching Scandel, The 100, and binge-listening to audiobooks. I'm currently enamored of mystery and thrillers by Chelsea Cain and Lisa Unger. I cannot do a Helluva lot these days but I can still waste time. ALS ought to have some perks. I can immerse myself in completely in entirely new situations, raise my excitement level and learn something new to me.

Tuesday

Tuesday is shaping up to be my best day of the week. Every day holds the requisite eating, changing, television, and napping. But Tuesday, I got a glorious, hot bath in a handicap-accessible bathtub with my Angela and Lisa, reorganized my shower caddy with my Lisa, read "The White Album" by Joan Didion with my Lindsey, "supervised" doughnut-making and sampled same with my Sandra among others, and listened to Ryan Feng play classical piano. A new book fell into my lap today. Of course, I mean that figuratively. "Play It As It Lays" by Joan Didion was just laying on top of the informal Bailey Boushay House library cart, so I borrowed it. .Guess what we'll be reading? I feel very blessed!