I earlier posted Vivian Connell’s letter in which she described her reaction when she learned she has ALS (Lou Gehrig’s Disease).
Vivian here tells us of her continuing journey and reminds us of her boldness of spirit, her determination to squeeze out of life all she can without self-pity but with courage.
I really liked her opening epigram:
“I wish it need not have happened in my time,” said Frodo.
“So do I,” said Gandalf, “and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”
― J.R.R. Tolkien, The Fellowship of the Ring
Vivian reminds us that each of us must decide how we will spend “the time that is given us.” None of us knows whether that time will be marked in days, weeks, months, or years.
The choice is ours.
Vivian will soon launch her Kickstarter campaign to raise money to take students to the U.S. Holocaust Museum. When she does, you will hear about it.
In the meanwhile, Vivian, know that our thoughts and prayers are with you.
Miracles happen.
Diane Ravitch's blog 
Indeed, our thoughts and prayers are with you. In my work volunteering for Hospice I sat with a man with ALS. for a period of time. It IS, as with all diseases, difficult. A favorite book is “Tuesdays with Maurie”. [Hope that without looking his name is spelled correctly.] People like this inspire all of us. Most of us at some time in our life face things which we would prefer NEVER to have to face and each of us face those things in our own way. The rest of us cannot say we understand. There is no way to understand. We are all different. Even when faced with similar problems we must react and face difficulties in our own way, find our own “answers”. It is difficult to see others suffer and we can only say, we care. As educators we see all kinds of problems with our students and now with our colleagues also. God bless.
“Even when faced with similar problems we must react and face difficulties in our own way, find our own “answers”.”
You mean we can’t “common core standardize” responses?
I read the first post about Vivian on Monday morning. Within two hours my dear mother-in-law was diagnosed with ALS. It is going to be a difficult journey but we plan to fill it with as much joy, laughter and love. Thanks for your uplifing post, Vivian.
My heart is with you, Vivian. I am on family leave right now because I had a meltdown over the Alternative Standards Notebooks. I had a meltdown because my Assistant Principal did not follow ADA Protocol and provide me with advanced notice of the meeting, nor allow me to have someone with me for support. I am an adult with Asperger syndrome. I am now banned from my school even to the point of not being able to send in some worksheets for the substitute. But I am fighting for ADA rights and accommodations. I will get through this whole. And so will you. You are blessed.
I can only imagine how horrible that meeting must have been for you. While you are fighting for your rights under ADA remember that those of us who are considered “neurotypical” do not always behave professionally when confronted in such a manner. I always have the right responses to confrontational questions or remarks about twenty minutes after I am out of the situation. Being put on the spot is something that few people handle gracefully. Good luck.
wath lerning poblikum
For example, more than 10 million Americans can’t find work and roughly 7 million are employed part-time but need a full-time job. The labor force participation rate has dropped to levels not seen since the Carter administration – a sign millions of workers are so discouraged with their job prospects that they’ve left the workforce entirely. We have a health care law that is discouraging and destroying full time work. More than one out of every 10 African-Americans can’t find a job and nearly 47 million individuals are living in poverty. In the economy, stock prices on Wall Street reach record highs while the wages of working families on Main Street remain flat.
We are told time and again a strong recovery is just around the corner if the president is allowed to spend more, tax more, and borrow more. Yet after $17.6 trillion in total spending and $6.8 trillion in new debt, we are stuck in the slowest economic recovery in our nation’s history. Despite the obvious fact that the presid
xxxxxxxxxxxxxxxxxxxxxx Vivian I have only a tiny corner of experience w/ALS– my brother had a gf of 8 yrs who withdrew from their engagement (after he gave her a ring), because her dad & uncle had ALS, & she chose not to have children given the statistics.
But I also have the experience of being caregiver to my eldest child, ultimately a victim of lifelong Reiter’s Syndrome & other autoimmune diseases which ‘piled on’. Although he was younger than you when the diseases flared, & died when only in his early 20’s, he dedicated his disease-ridden years to his talent & passion (music), & accomplished a great deal. I was privileged to be his primary caregiver.
He could never have matured to the point he did, had it not been for our stellar public school, whose guidance counselors & SpEd people were behind him 100%, enabling him to make it to college, where he expanded his musical network in 2.5 yrs (before med leave), making it possible to continue musical projects until his death.
I am very grateful to you for your advocacy to public schooling in the throes of illness. God bless you.