Skip to main content

Patience

I was asked to write a segment on "patience" of all things.This is for a staff training video. I cannot help but feel a little convicted as I am not always the best example of patience. I have thrown howling shitfits, cursed caregivers, and presented as a pain in the butt. Who would even care what I have to say on the subject?!

Then, again, who wouldn't? I've had ALS for about 3 1/2 years. In that time, I've had to overcome the reality of transforming from an active, independent woman to one who must depend upon others for every single need, no matter how personal. I've suffered and transcended physical impairment, paralysis, emotionalability, betrayal, abandonment, humiliation, discrimination, and governmental inadequacy. And, I've not always suffered graciously nor quietly. Be that as it may, the following is my contribution:

Patience.

Ironic that I should speak to patience, when I seem to have so little.

Patience is so important when dealing with neurological declines because many times we are simply unable to effectively communicate our needs for you to understand.

When you exhibit loving patience, you are able to foster a spirit of trust, especially, in the face of distress. Even if you seem to fail to diffuse a spell of temperament, (shall we say), you are setting the stage to be the trusted focal the next time a seemingly insurmountable obstacle appears.

I know this to be true for me. As a resident with ALS, I have nearly daily, imperceptible declines in muscles, which results in increasing paralysis, which affects breathing. What was effective one day, simply isn't on another. I'm  not being tempremental. I'm just trying to find my equalibrium in a rapidly-changing reality. I appreciate all the love and care you bestow upon me, even if I'm unable to say so.

Patience goes both ways. I know that I strive to be more patient with those who are most patient with Me.

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!