I was very aware that I was Jewish from the time I was a toddler. I questioned religion once my brain tumor was diagnosed but, I was always very proud to be Jewish. That is, up until a few years ago and now I'm questioning my religion and I'm questioning how genuine other groups are.
I went to Hebrew School from the time I was 4 or 5 yrs. old until I had my Bat Mitzvah. I loved learning about the Kibbutz's in Israel and learning Hebrew, and found it fascinating to learn about Anne Frank, WWII, and concentration camps.
My family always donated money to all kinds of charities, from childhood cancer nonprofits to Jewish nonprofits and everything in between. I learned that Jewish people, like myself, donate on average more than many other religions. Perhaps that isn't true, but that's what I learned.
My mom also taught me to volunteer my time. After my brain tumor diagnosis and treatment, I was a candy striper, volunteered at a homeless shelter, served food at a soup kitchen, and more. I volunteered after I lost my balance, after I was deaf in my left ear, etc. I still did good things after my tragedy.
I learned to donate my time and money and never questioned anything I was taught. I especially never questioned if Jewish groups donated, until I started It's Just Benign. I'm not questioning Jewish individuals, only groups. Many Jewish people have helped IJB, but groups don't appear to care. I'm not writing about certain Jewish people or family & friends, only groups of Jews and some other groups.
I initialled reached out to groups I knew to help either with donations or to at least let me discuss my mission regarding IJB with their congregation. Unfortunately, every Jewish group I've reached out to has not responded to my emails or my in-person visits.
I first reached out to the Temple where I had my Bat Mitzvah. Their support would have meant so much to me because no one reached out to me during my hospital stays, during my surgery or the summer of radiation treatment. Although the Rabbi is different today than in 1986, I just assumed they would want to help in some way. I reached out to them in person initially and then through emails. I never received any response.
I then reached out to a Jewish groups that helped with childhood ilness. I explained that I was that sick child, but now I turned my illness into something positive. They couldn't help IJB in any way, either.
So I moved on to the Temple my dad has gone to for years. They know me there. One person donated their time to help IJB become trademarked and that means a lot to me but, the Rabbi stopped emailing me once I asked if I could speak after Temple. He had responded to my initial emails and he thought public speaking was a fantastic idea until I asked if I could speak there. He never responded to me again.
My last hope was the local JCC, the Jewish Community Center. They know me there. I called my contact there a few months ago. She suggested emailing her, which I did. I never received a reply. So I emailed her after a month and still haven't heard from her.
The only Jewish group that donated to IJB was a secular Jewish group, a group that isn't based on G-D. They focus on being proud Jews, G-D isn't mentioned.
This learning experience has been very upsetting, especially when I received so little support as a child. I hoped things would be different by using my adult voice. I was 11 yrs. old when my tumor was diagnosed and no one reached out to me then. My middle school, Hebrew School, and dance classes never reached out to me. It's a very painful memory knowing that hundreds of people have known me for years and can't bother to check on me. Didn't they care that I had brain surgery? that I could no longer walk? that my eye was weak and I needed to wear a patch on my good eye? and that I'd never be able to do my passion again, my gymnastics, my cartwheels and backbends that I lived for? It appeared like no one cared about me or my mom then. And it still feels like few people care now.
I was very involved in a nonprofit that helps the blind. I was the first female and the youngest to join this group. These men saw me grow up, from a 23 yr. old who lived with chronic pain to a 36 year old woman who founded a nonprofit. I was active for 13 years; that's a lot of time. They loved me when I was the treasurer, secretary, and social chair, but couldn't support me once I started my brain tumor journey. I had shared with them about my experience: from the 12 year old who remembers her hair all over her pillow as I lost it from the radiation treatment to the college grad who lived with chronic pain. There is one member who understands the support IJB provides and I thank him on a routine basis.
For some reason no group has connected with the service that It's Just Benign provides. It's very sad to me for many reasons, especially on a personal level. That void in my heart that formed decades ago hasn't been filled yet by the connections we've made here. Professionally, it is also sad, too but, it is not nearly as disappointing as it is personally. I'm starting to accept that there might not be a future for IJB. I'm no longer asking my family and friends to donate to IJB because they've helped enough. It is time for groups to help. There are people and groups out there who like helping. I just can't find them. I hope that you, meaning whoever is reading this, can reach out to groups you know. My fishing expedition is over. I've tried and continuously get disappointed. It just makes me disgusted.
Please let me know if you can reach out to someone or some groups. I can help you with what to say, if you want help. Maybe you'll have better luck than I did.
I hope some day I can read this article and laugh.
Hi Beth. It does sound frustrating. I don''t have any answers really. The only situation where I came across anything similar to the one you described above was my time as a volunteer in Chicago. A group of volunteers and I planned for a community event in one of the Chicago neighborhoods. We thought we had a good approach in trying to garner support for the event from the neighborhood leaders and groups. Similar to you, we got stonewalled by pretty much everyone. Though I was an outsider to the area (being from CA and all), my group had several members who grew up in the neighborhood and knew many of the individuals and groups we were reaching out too.
Some helped, some wanted to help, but had their hands tied, and others we just never got a response from. The experience left me somewhat jaded. We almost pulled it off. We had garnered a lot of community support, but just not enough from the important players to be able to get anything done unfortunately. I think sometimes, the decision whether to help or not help someone can be very political. After the fact, like a year later, we found out as such.
In the case of IJB, though I know you want to do more and provide more, maybe if required, an IJB forum can be set up. I know there are several free forum board websites out there. Just a thought.
Hi John. Thanks for your thoughts an advice. You can only imagine how jaded, and sad, I am. You only did one event. It was bad enough my family wasn't really there, nor my school or hebrew school or dance classes of the time but, decades later every group I've connected to won't help. It's about compassion.
Starting IJB has given me a lot of confidence that I never had, physically, ability to become financially successful, and emotionally. It's different for childhood survivors, like myself, than someone who was educated with job, married w/ children when diagnosed. I'm being mentored by a Foundation in Manhattan and I'm sure they can help a lot. So I'm not giving up.However, this is as far as I go to help this field, especially when survivors aren't standing next to me. It's been 4 years, hundreds of local survivors ( NJ, NY, PA, CT), and I'm still the individual representing IJB. There are a few members who live in another state and they helped IJB in big ways. There's 1 survivor who volunteers and I'm very grateful. Within a week the How You Can Help tab should be updated. I really hope it changes and I don't feel as isolated about this topic. I want survivors coming to an educational seminar, like IJB just had, or representing IJB at a table during a walk. Fingers crossed!
Beth, I am sorry that you experienced this. In the little time I have known that I have a pituitary gland tumor I have found that when you mention that the tumor is benign, people confuse it with "it's not that serious because it isn't malignant".
In fact, some people ask me how my mother is doing (she is recovering from a severe case of vertigo), but sometimes never ask me how I am doing. Now, don't get me wrong, my moms vertigo was very serious. But she will recover in time and I don't know where my journey is going!
Maybe there is something in the name "It's Just Benign" that is putting people off, as you don't seem to be the type that would turn anyone off.
And as far as groups go, I have found that 99% of the people aren't supportive, whether it is a church/synagogue or even a so-called support group, unless it is something they (or a relative) have gone through themselves. And noticing the date of your post, a lot of groups aren't getting the financial support they wish because of the economy. JMO, of course.
Hi Michelle. Thanks so much for your compassion It's been very difficult having only 1 person to rely on for 40 years. And it's been even more difficult for my mom.
Anyway, thanks so much for your advice. Just knowing it isn't only happening to me is comforting. However, raising for the blind was much easier.
I can absolutely connect with your experience with people asking about your mom and not you. It's very upsetting.
Reach out to me if you have an ideas. Thanks!