August 15, 2011

Sad to report that there has been a noticeable decline in Neil’s condition.
More trouble breathing at night, trouble waking up in the am, sleeping more, some mental confusion. The ALS and the CHF are symptoms are kicking up. He struggles to be conversant and upbeat. He is a strong; a pragmatic realist, with a large and generous heart.
He asks me to laugh and smile more, saying it feeds him…… a tall order for me.

My mind travels back over the past year. June 28 , 2010 we moved into
our new condo in Buffalo. Our house was filled for 4 months with wonderful, delicious company. Visits  from NJ kids, visits from Sarasota, Cleveland, Hawaii, Pittsburg and Vancouver, TX, NYC . … a reunion with 14 family members a year ago this month, when we met our new little grand neice. And of course, visits from all of our Buffalo friends whose love and support know no bounds. Our home was filled with 4 month’s worth of laughter, dinner parties, outings and fun, time spent with grandchildren before making the decision to leave for Sarasota October 26. Last summer seems like another  lifetime.

The first 4 months, our time in Sarasota mirrored our 4 summer months in Buffalo.
Buffalo friends and family, kids/grandkids visited Sarasota. Our time filled with giving tours, going to the beach, the bay front, the noon time operas, lunch with friends, lovely Shabbat dinners at the Yudin/Charnes home, catered dinners here and an especially memorable catered Valentines dinner, filled with love, friendship and gales of laughter;  some of the decorations are still around  because we both smile at the memory of that evening.
 We both have a vivid memory of being at  K.H., our beloved shul, (how many people can say they belong to a shul with an African drummer and a guitarist at every Firday ntie service?) when a spontaneous dance occurred. Someone grabbed Neil’s wheelchair and placed  him at the head of the dance line. When Neil returned to his seat afterwards  telling me how much fun he had because he had not danced in years, he also reported that he felt like the Torah because everyone he “danced” by touched him or patted him or kissed him. Tears streamed down my face watching him.
The love and kindness we have received from all of you have remained with us as we as we travel this road.

As the downslide continues Neil refuses to let it define him. He defied it and times and suffered the consequences, but it did not stop him until it did.

Since July 11 he has not had the strength to get out of bed. I watch him become weaker each day. He has lost a great deal of weight. Food has little appeal. His voice is soft, weak and unsteady. Our  evenings are still precious to us. We watch movies, read together and talk. Our health care worker is here all day; evenings are our only alone time.
Neil, ever the planner, has suggested a February reunion here with 2 dear girlfriends, one of whom who lives in Portland.We have rediscovered each other after not been in touch with for over 38 years. The February date is on her calendar. Neil suggested it, even though he may not be here to enjoy it.

Neil has also re connected with some of his old friends and family. He called them to say hello and goodbye; some have continued  to stay in touch.

Neil loves genealogy and before his back surgery he was contacted by Boris, who shares his mother's family name and lives in London, Ontario. Neil's cousin, Sy lives in WA and has kindly submitted his DNA for testing as has Boris. In a few days we should know if we have discoverd a new branch of the family.

My mind travels to “after”….. a place I do not want to go, but must.
I do not want to sit shiva for more than one night. We are doing that now, together.
I will want to be with family; Neil will be with me in every cell and fiber of
my being. I will carry him with me in my heart where ever I go.

We will all face death one day, hopefully not for a long, long time.
I hope that when that time comes, it is with as much grace and dignity, strength and creativity as we can summon and with as much ease as the heavens will allow.

Neil and I agree that this is no way to live. His body is no longer serving him well. His spirit needs to be released so that it can soar and rejoin all of the ancestors he cherishes. May they welcome him with open arms and take care of him for me until I re join him.
Cheryl