Jewish Community and Opening a Synagogue by Patricia Barr

We are truly interdependent. To commune with God through and with nature and not through and with our fellows is really to connect with but a part.  And so I come back to Yiskor, and what it is for me, and who I am. I know Zeligi asked me to speak because I told him a story, and so I will tell it now. 

One year ago I walked into this place with my children to somehow observe Yom Kipper together. We entered with a key provided by someone who still had a key, and found mold and dirt and filth. Downstairs the ceiling had fallen in and walls were covered with mildew. Outside the front steps were in disrepair and the paint was fading. Windows were broken, the heat was off, and a family of chipmunks had made the Rabbi's study their home. It was "shandu", a shame, and I think a public humiliation for the Jews of this community. I later learned that on Rosh Hashanah, Lilo Glick and Ruth Levin had tried to get in and could not. A few weeks later was the observance of Kristalnacht, and because it was the fiftieth anniversary there was a good deal of media attention. 

Kristalcacht is the night my father-in-law, along with many others, far too many others, was taken from his home and began his journey to Buchenwald. My husband and children are here because he was not there long. He was able to immigrate to this country in 1940. Many of us sitting here are refugees of that time, or like my husband and I, are the children of refugees. It seemed to me then, almost a year ago, that to be Jews as individuals, but without our synagogue, and to be Jews who would let our synagogue simply die of disuse and disrepair was to take the first giant step toward doing for Hitler what he was unable to finally do. And so with Lilo Glick, also a refugee, a meeting to rebuild was arranged. All of us sitting in this room did what we needed to do as individuals and as a community to save this place. 

Now the place is restored. Far from a humiliation, it was one of six public buildings highlighted on this weekends public building tour. We have a place in which to remember as a community. I hope we will remember with a purpose. That our remembrance, will enlighten our present reality. 

Some might take from my remarks that we proclaim Judaism only because at moments in history we were persecuted for it. I am not a Jew because of anti-Semitism. I think the telling of the story about some of my motivation for being part of the rebuilding of this community suggests only that because of my close connections to the recent institutionalized anti-Semitism of Nazi Germany and the third reich, I was reminded of something I have known,  I can't be a Jew without remembering my Jewish communities past and without using that memory to constantly create my Jewish communities present. 

-Patricia Barr 

Patricia Barr (1950-2003)

Rolf Sternberg (1945-2012)

She is always right by our side

November 24th, 2005

I know the thought of being 60 makes your stomach turn, and you don't want to acknowledge that the day even exists, but as you know too well, not everyone gets to live to be 60. So, in honor of those who are not able to reach our age, whatever age that may be, we must celebrate. They would want nothing else.

With that said, for your Birthday I have printed two series of photographs for you.

The first is a set of three photographs from your wedding. I recently found the negatives in your chest. The photos were taken by Peter Crabtree. I printed two of mom. One that shows her smile and lighthearted approach to life and the other shows her constant beauty and intelligence. The third picture is of the two of you, because after all, you are the fabulous man that she married.

We all know that you miss mom dearly and will never forget her. Although we can't bring her back, I hope these photos give you a bit of comfort. The printing process was extremely rewarding. I even found myself having little chats with her. For example, when I was printing the picture of the two of you, she told me how unfortunate it was that you had lost so much hair. GOTCHA!!! No really though, she will talk to you. Just think hard enough, and she is always right by our side.

The second series of photos are from my time in the Middle East. I wanted to go to Israel because mom devoted a fair amount of her life to the Middle East and I wanted to try to further understand why it was so important to her. My time there was precious, thought provoking, tense and stressful all at the same time. I took more photos than I ever have in my life. I chose seven photos for you and printed them. They are titled Striking Land and Passionate People. I tried to convey the connection people make to the land of Israel and Palestine. After speaking to people, observing for 4 months and thinking on my own, I understand  many of the troubles, conflicts and sacrifices that will have to come in order for peace to be a reality.

Happy Birthday Daddy! I LOVE YOU!

Love, Shira

Are you up there together?

A friend recently asked me if I think about my parents being together again.

When my father first passed, it gave me peace to know my mother was waiting for him but I honestly hadn't thought about it in a while so I replied, "not really."

But, then I thought about it for another 30 seconds, and replied, I was sure my dad was still working his heart out with my mother yelling at him, stating, " Rolf, you died. You can't work anymore! The girls are going to be OK. You have to let go and try to relax."

Calling Hospice

Dad was resting in his chair. I went in looking for speakers and found him passed out. “Daddy, daddy.” I said shaking him. Black death like smelling discharge started flowing out of his mouth. I thought he was dead.  I screamed at the top of my lungs. My little sister Tava came in and I ordered her to go get help. She ran out of our apartment screaming louder than I have ever heard anyone scream. 

Dad woke up about 30 seconds after the black tar incident. He managed to walk from his chair to the couch in the den but from there couldn’t move and started screaming in pain. Although he never admitted to dying, the pain was so bad he was screaming and asking that we make it all end. 

I called his Dr. to request morphine. We were fortunate and had a Dr. that would make house calls 24/7. She came with emergency morphine and convinced Dad to start hospice. Not a conversation we were able to have with our father who wouldn't admit to dying. 

I followed up and we would meet our hospice nurse and psychologist the next day. 

Hospice works differently in every state. In Florida they don’t provide 24 hour home care but rather make weekly visits and teach caregivers (in this case, Tava, my two aunts and I) how to administer drugs. 

They came in and prescribed morphine, medical marijuana and some other anti-anxiety medications. 

The meds were way too much to track in one's head. I made a large chart of the different drugs, how often they needed to be or could be administered and which drugs helped with pain, anxiety and diet. There it was, instructions on how to help our dad pass without pain displayed on the living room wall. 

I hadn’t been sleeping well, but I stopped sleeping during the night that day. For the next week, I would spend the evenings on the couch outside my father's bedroom jumping up at any sign of movement. I wasn’t ready for my dad to go and I wasn't going to let him die in pain under my watch. 

The  Robert Munsch book; Love You Forever, that my parents used to read to my sister and I suddenly took new meaning. 

The life cycle had gone full circle and my little sister and I were helping our beloved father die with as little pain as possible, something, that in this day and age is a fortunate thing to be able to do. 

After a week we bought a baby monitor and dad promised to call for help if he was in pain.

“Softly she sings to him:

"I'll love you forever

I'll like you for always
As long as I'm living

My baby you'll be." - Love you Forever: Robert Munsch

What exactly is BRCA1 & BRCA2? My Story

I am a 30-year-old female Ashkenazi Jew. My mother was positive for BRCA2. She was diagnosed with breast cancer when I was 4 and died when I was 20.

What does it mean to be BRCA1 or BRCA2 positive? With full disclosure that I am not a doctor, just an educated advocate, I will do my best to explain this gene mutation in lay terms.

When most people are born they have two genes that fight breast and ovarian cancer cells. I like to think of these genes as walls that protect us against cancer.  The genes/walls are broken down throughout a lifetime. If both your genes/walls are broken down you get cancer (breast or ovarian or both). There are many reasons why these walls are broken down in a lifetime. Many we don't know. But we do know that not exercising, being overweight, not eating properly and drinking excessively break the genes/ walls down. Also, larger, denser breasts tend to break down those genes/walls faster.

If you are BRCA1 or BRCA2 positive you are born with one faulty gene often described as a “gene mutation’. So this means you have one wall of protection instead of two. The BRCA1 mutation has a higher risk for ovarian cancer and BRCA2 mutation has a higher risk for breast cancer. But both mutations increase your risk of breast and ovarian cancer.

This is also why the older you are, the more likely you are to develop breast/ovarian  cancer, and why breast/ovarian cancer is more common in older women. Simply put, the longer you live, the more time your genes/walls that protect you from cancer have had to be broken down.

The gene mutations are found mostly in Ashkenazi Jews and African Americans. A very, very small percentage of people carry these mutations and an even smaller number of people who carry these mutations develop cancer. If you carry the gene you have a 50% chance of passing it on to your children.

Because of my mother's history, I have always been considered "high risk". I started seeing a genetic counselor with my mother at age 16. I made a promise to her that I would stay on top of the science and inform my little sister of her choices.

When I turned 25 doctors recommended  I start getting mammograms and MRI’s every year, going in for one or the other test every 6 months. After one of each, an MRI and a mammogram, I refused to continue being tested. I did my research and stayed up to date with the National Breast Cancer Coalition's information. It was unclear what those tests were going to do for me at such a young age with size 34 D, very dense breasts. And NBCC (The National Breast Cancer Coalition, an organization my mother helped found in the early 90’s) was starting to find studies and reports that suggested mammograms were often more harmful than helpful.

At age 30, I was motherless and my father was dying from throat cancer, likely the same cancer his mother died of when he was 3, and likely the result of a gene mutation that simply hasn’t been discovered yet.

Battling the emotions that I had bad genes, very bad genes, I decided it was time to get tested for the BRCA1 & BRCA2 gene. The results came back October 16^th, 2012, one day after I turned 30.  I was positive.

It was recommended to continue screening every six months and I now had the option to undergo a pretty serious surgery and remove my breasts completely.

But there are other things you can do. My doctor urged me to exercise 40 minutes, three times a week, stating that the number one way to reduce your risk of cancer is to exercise. Cardiovascular activity suffocates active cancer cells.  She also told me never to gain weight, and I should never gain more than 10 pounds after high school (if I wasn’t overweight in high school). She looked at all 5’4 inches and 130 pounds of me and said “you look like you are in pretty good shape but you really can’t ever gain weight”.

I had also read that large and dense breasts were more likely to develop breast cancer. My doctor told me about a vitamin D study where they inject vitamin D directly into the breast as a preventative measure because they have reason to believe vitamin D makes breasts less dense, thus reducing a woman’s risk of the disease.

Lastly, she told me she wasn’t too concerned that I hadn’t gotten my mammograms, because now the recommended date for “high risk” women to start getting screened is age 30 or five years before the age their mother was when diagnosed. My mother was 36 when diagnosed.

Since preparing myself for the test and meeting with my breast doctor, I have lost 15 pounds. I am back to my high school size 0, and what had grown to be large DD breasts are now a charming small C cup size. I try to eat a healthy diet, I exercise 5 to 6 times a week and I have run one marathon, one 18 mile race and two half marathons.

I will do my mammogram this year as part of the vitamin D trial. If the trial is proven successful I will continue to take vitamin D. However, I will continue to refuse mammograms, likely only doing them every 2 years with an annual MRI. 

You see, there is no study on “high risk” women who exercise every day to tell me what my risk percentage is. The fact is, I don’t know and the doctors don’t know. But until I have children my breasts are staying put. They may just stay put forever because, who knows, by then maybe we will have an end to this disease.

The National Breast Cancer Coalition has not only empowered me to make my own decisions, they are fighting for an end to this disease. I urge you to know the facts, be empowered and join the deadline campaign.

Disclaimer

Before I start this blog I feel the need to write a disclaimer. As sad and tragic as this love story is, it is also magical and blessed. I have been blessed with a view of the world that is usually 'a glass half full' and with parents and grandparents that worked tirelessly so that I wouldn't have to worry about money the same way they did, after escaping WWII. And lastly, I was blessed with a job and co-workers that are incredibly understanding and accommodating.  And now with the means to follow my dreams and start my own company. To have one of these things is a blessing, but to have all of these things is truly a miracle. I have been wanting to write this blog for quite some time but it was just too sad. Our family therapist did everything but beg me to start because the longer I wait the more I will forget.

For all my friends, family and loved ones that provide me with the light to keep going. This is for you....