This week I meditated on hope. There are multitudes of quotes on the topic.
Lord save us all from…a hope tree that has lost the faculty of putting out blossoms. – Mark Twain
The human body experiences a powerful gravitational pull in the direction of hope. That is why the patient’s hopes are the physician’s secret weapon. They are the hidden ingredients in any prescription. – Norman Cousin
The sickening pang of hope deferred – Walter Scott
Hope is an echo, hope ties itself yonder, yonder – Carl Sandburg
I believe the last quote is the most appropriate for ALS patients today more than ever. It used to be a totally hopeless disease. But now there is so much research going on, and new drugs in the pipeline, that ALS patients have hope. But every day people are dying from this disease and an effective cure is still years away.
After researching stem cell treatment and talking with both my Reno neurologist and the head of the UCSF ALS Clinic, we decided that the procedure was both too expensive and too risky. I am happy that Freddy got such positive results. But the chances of me seeing similar results is very slim and to me not worth the associated risks.
I definitely felt the sickening pang of hope deferred but some nice things happened this week too. Andy and I attended a book discussion and signing at a local Reno bookstore, Sundance. The author was Laila Lalami and her new book is The Moor’s Account. Her book won the American Book Award, was a Kirkus Reviews Best Book of the year, is nominee for the Man Booker Prize, and is a Pulitzer Prize finalist.
The book is about the imagined memoirs of the first black explorer of America. He travels to Florida as the slave of a Spanish conquistador. The book is historical fiction and the book discussion was very interesting. Laila explained that the historical facts she based her novel on were from the notes kept by the treasurer of the trip. That is when she said, “That’s what made me realize that we may not know when we are living in historic times.” So people that are writing about current events are very important at all times. That means journalists, President Trump. She discussed how colonization affected her. She is from Morocco. Her parents were both readers and she grew up in a house full of books. She was sent to French schools because of the French colonization of Morocco. When asked why she doesn’t write in Arabic she explained that there are so many dialects that not everyone would understand. She said she is most familiar with Egyptian Arabic. It was interesting to hear her say that she loves to write in the desert to get out of busy Los Angeles where she is a professor of Creative Writing at the University of California at Riverside. She studied linguistics aside from her major in college because she was interested in it. She is obviously a gifted linguist herself and that helped her write about a man who is also a gifted linguist. The man wearing the hat, standing behind her in the picture is from Morocco too and he and his gal had just returned from Morocco earlier in the week, so they had interesting questions. I am half way through the book and so far it is wonderfully written and a very compelling story.
We also went to another UNR basketball game and this time they won and are at the top of their conference.
My friend Erika drove up from the Sacramento area to attend aqua fitness with me and have lunch with Stan and me. I love it when we can get together. I wish we lived closer together.
Shelli is also a good friend of mine. Her son goes to the school where I worked. She came in to help me in the office once a week when I couldn’t talk. It was a great workout and Erika, Stan and I had a nice lunch at Josefs.
I also heard from two college roommates: Sue and Kelly, pictured below with me.
I received some photos from my 2nd cousin Sarah in Washington state that took me down memory lane.
Sarah and her siblings lost their brother Peter to ALS also.
I found our daffodils starting to come up in our front yard which means spring is coming, although technically a month and a half away.
Hope is one of the principal springs that keep mankind in motion – Thomas Fuller
Hope and patience are two sovereign remedies for all, the surest reposals, the softest cushions to lean on in adversity. – Robert Burton
The important thing is not that we can live on hope alone, but that life is not worth living without it. – Harvey Milk
Hope… is not a feeling; it is something you do. – Katherine Peterson
I wish all ALS patients and caregivers hope that is not an echo, tying itself yonder, yonder.