When Jim suggested this site almost three years ago I could only pray for the outcomes which Bernie now enjoys. Your positive thoughts and prayers have gotten us through tumult and suffering on many occasions. And I have learned the truth of something I read years ago which suggested we contemplate where we put our energies and attention, either on those things that change or on those things that do not change. Your constant attentions to us have been changeless. Your support has been absolutely constant. I am totally convinced that your good intentions toward Bernie were heard by a God who decided like many of us that Bernie Margolis still had good to do in the world. Thank you from our infinite hearts for being with us and for us during this long journey.
And many, many thanks to Jim Luke and Sue Sweeney for developing this website and managing it despite very hectic careers. Both of you are amazing!!!
With great love and respect,
Posted in Amanda Says | 8 Comments »
I have been so caught up in the elation of being back at work that I have neglected to broadcast the good news to everyone. After a start at part-time work in June I moved to full time status in September. My colleagues and staff have given me a wonderful welcome back and I am having a great time doing the things a State Librarian should be doing. The range of work is as far reaching as ever, from helping folks deal with the horror of Superstorm Sandy, to testifying before the State Legislature, to giving speeches and even to thinking (and dreaming) about the future of libraries. C-Span is doing a story on our Talking Book and Braille Library and we have been in the news as the Preliminary Emancipation Proclamation, the only surviving Emancipation Proclamation in Abraham Lincoln’s own hand, has toured the state and been viewed by over 30,000 people. This amazing piece of history joined the State Library collection in 1865. Needless to say, I am back in my element and enjoying every moment.
On the health front I am doing better as my stamina and blood values are much improved. And we are learning that aspects of the chronic graft versus host disease just come with the territory. We are grateful for the continued great care at Dana Farber Cancer Institute.
Amanda has made great progress in recovering from foot surgery. I have told her many times that she is guaranteed a place in heaven. But, of course, I remind her that she has a long time to go and she must still put up with me before she is welcomed there! We went to The Sagamore, a beautiful resort hotel on the shores of New York’s Lake George, for our Thanksgiving dinner. As the sun set over the lake we shared our Thanksgiving appreciation for a great family, remarkably loving and caring friends and colleagues, and our now almost forty years together. As I look both back to the past and forward to the future I count my many blessings. I am so lucky, so blessed, and so fortunate to have great friends, and to be able to share a rich life filled with great people who have inspired me, given me courage, extended usually excellent advice, and always great wisdom.
Please have a wonderful holiday season filled with every good wish for you and those you love.
With all my love and thanks,
PS. This will be the last message on “berniemargolis.com”. We will keep the site up for a while but it will not be active. Our most precious thanks to Jim and Sue for watching over this as a means of keeping in touch and sharing our progress.
Posted in Bernie Says | 27 Comments »
Much time has passed since an update and the best description of my condition is that “I am making progress”. This favorite term is one I used with great regularity at the Boston Public Library when William O. Taylor, the late distinguished publisher of the Boston Globe newspaper, was my board chairman. Bill and I spoke almost every work day for ten years, often more than once a day. We talked about everything and always concluded that we were making progress, the library was improving, and we were dealing with the negatives as well as possible. Bill’s passing was a great loss to the entire city of Boston. Bill, we are making progress!
I am being weaned off some medications. The PKK line, called a “pick” line, has been removed after seventeen months in different forms. Some eating restrictions have been removed and we are beginning to talk about a return to part-time work, maybe in June. Some problems still cast their shadows but I am making progress.
Our household will soon experience some role reversals. I will become a caregiver when Amanda has much delayed but much-needed foot surgery. She will need to wear a protective boot and will be on crutches for much longer than she would like. I will stand at the ready with high-powered pain relievers. We have every confidence in Dr. Eric Bluman at Brigham and Women’s Hospital who will do the surgery. Please send your prayers Amanda’s way.
We have not minded the non-winter this year and spring here is always welcome. We had a visit from a rough-legged hawk (about 22″ tall) in early February. He snatched (and ate) one of our plump grey squirrels and spent several days leaving us intrigued and riveted. A few days later the local newspaper published a photograph of what we believe to be “our” hawk that was taken just a few miles from our house. Harvey the Hawk has continued to enter our conversations since then. It is amazing how the beauties and cycles of nature seem more enhanced to me. As the seasons change and the cycle of new life begins I remain grateful for you, our friends, as my own life continues, refreshed. Our gratitude to my medical team is too great to express.
With wishes that the holidays of spring, Easter and Passover, bring renewal, love, life, and all the best to each of you.
Posted in Bernie Says | 30 Comments »
With this message comes our profound wish that your holiday season of giving thanks as well as giving be filled with the best of everything: good fortune, family and friends, favorable travel and weather, good health, and in every way the best for you and those you love.
We continue to cope with the many demands of our circumstances. Bernie developed another case of graft versus host disease, this time in his mouth, a while back. The condition has been quite painful and has necessitated another layer of medical evaluation and treatment. Eating has become a challenge for Bernie but both of us were able to eat a hearty Thanksgiving dinner.
As our warrior march continues we think of you daily and thank you daily. Be safe. Be kind to each other. And God bless us, everyone.
Amanda and Bernie
Posted in Amanda Says, Bernie Says | 18 Comments »
Bernie’s positive progress has been slow in coming and we pray for its continuation. He even got his infant immunizations this summer! We apologize for our tardy update but this has been another exhausting time of great preoccupation. But the thicker ice feels very good and Bernie gets stronger every day. Thank you, thank you, for your prayers which may indeed be coming true.
Thank you for your prayers and blessings.
Posted in Amanda Says | 12 Comments »
I think someone once said that “it” is all about perspective. What seems good is sometimes bad. What is bad may, in fact, be great. The past months since our last update seem to be filled with these perspective issues. There have been some great signs of progress and also some setbacks. Our silence has generally been the result of little change or progress or a pre-occupation with dealing with various new challenges.
The really good news now is that my bone marrow seems to have begun to produce platelets and some red cells. Numbers are slowly going up. Amanda says I look better and my humor is coming back!
We take absolutely nothing for granted but perhaps the thin ice of our existence is getting thicker. We continue to be buoyed by your good wishes. It is a time, it seems, of great change in the world – in my little world and in the largest sense of the world. We thank you for your contributions to making the world a better place. We all need it.
Posted in Bernie Says | 17 Comments »
Last week Bernie had his second stem cell transplant at the Dana-Farber Cancer Institute. Both his brother, Michael, and Bernie weathered it smoothly. Over half a million stem cells were harvested from Michael and transferred to Bernie and we are now in an agonizing period of waiting to see what will happen. Please join us in praying for Bernie’s and Michael’s health and recovery and for all of the transplanted cells to multiply in Bernie’s marrow and live in harmony and joy.
We continue to be humbled by your presence and support as our warrior path wanders and heaves and offer our own prayers of gratitude for each of you.
With great respect and love,
Posted in Amanda Says | 36 Comments »