It's not what you are eating, it's what's eating you…

Posts tagged ‘#zachsobiech’

“If only I had a little bit more time”…./It’s NOT enough….


zachsobiech

http://www.childrenscancer.org/zach

Again, I’m on my final day of my 2nd campaign on social media to raise money and awareness for The Zach Sobiech Osteosarcoma Fund, with mixed feelings of relief, anger and gratitude.

I had to really think about whether or not I wanted to be associated with this at all, let alone to the degree that I’ve associated myself with. I’m better suited for the activism I do regarding medical, mental health, anti-bullying, body diversity, homelessness, etc.

It’s not that I had much to lose, I live kind of a small life. I did think though for someone with my barriers, even though I’ve now said ad nauseum in EIGHT different blogs, of why raising money for children’s cancers and Zach Sobiech means so much to me.

Here comes the anger part. I knew when I decided last month to do this again, as a token for a multitude of reasons, to raise money for The Zach Sobiech Osteosarcoma Fund, that people, may not want to hear about it anymore. While my social media buds were great both 6 months ago when I did this, and again, the last half of November of 2014, society at this time of year, really isn’t receptive, at least from ME, hearing about why it’s still important to raise money for research for Osteosarcoma. In honor of Zach Sobiech and ALL children who have fought Osteosarcoma and “really didn’t lose”.

Whether or not they lost their lives from it.

But it still didn’t get the attention that I thought it would. My 2nd campaign. And for that I’m super disappointed.

I had to think real hard of attaching myself so strongly to this. I’m this strange, wordy, Jewish, smoking, disabled activist who lives about 40 miles away from the Sobiech family.  There are other people doing this, locally. Not many people, though. There will be another concert next week at Mall of America, though. Why me, then?

Because his fund isn’t getting the attention, I believe it should. So why not me? I just wish others would join me in trying to raise money and awareness.

All these kids and families who have to battle children’s cancers want is another day. Another birthday. Another holiday season, with life and hope.

To achieve that, takes money and research for causes and for treatment and a possible a cure for all.

So I’m doing one last STRONG push to raise money and awareness for The Zach Sobiech Osteosarcoma Fund. Do something in gratitude that your kids don’t have cancer. Do something in honor for those who you know have had a child who battled cancer. Just do something, ok?

Because ignoring the fact that children have to battle and die from cancer, doesn’t make it any less of a threat. And to support the kids and families who have to battle this, needs more than empathy. It requires a lit bit of money and time from all of us, to help fund the research necessary, to have any chance in curing cancer in all kids. So if you don’t want to donate money to The Zach Sobiech Osteosarcoma Fund, do it with another children’s cancer initiative.

I can live with my almost 45 year old self ,that I tried, but failed at raising the money and awareness for The Zach Sobiech Osteosarcoma Fund. I can’t not do anything though, from now on, as an activist (and a mother of 2 healthy children) that I will going forward, in the future to do this when I can. Again, as I said, from my very first Zach Sobiech blog, he and kids like him at Fairview, changed my life.

That’s why it’s NOT enough to do the activism, I’m better suited for. It’s NEVER going to be ok,  that kids have to battle Osteosarcoma whether they live or die. Please donate or share the many Zach Sobiech links that I’ve shared.

Thank You!!!!  Happy Holidays…………..

As an activist and complex disabled person, when worlds collide….

     www.childrenscancer.org/zach 
Image
    So I’m on day #5 of trying to raise money and awareness for childhood cancers in honor of Zach Sobiech. It’s not going very well. I got disgusted enough to on Sunday remove all pictures of people on my social media accounts, with the statement that they would be restored when ten percent of my Facebook buds either shared my Zach Sobiech links or donated and privately let me know. I’m not attractive but people are on Facebook because of well, faces….

  I really naively thought that with all the activism that I do, and the stigma that is attached, this would be the easiest. Nope… People I guess on social media are only going to get behind a cause they can relate to. In my case because most of my social media peers are concerned about weight issues, I guess childhood obesity is going to trump childhood cancer, in getting attention. Even though cancer kills more kids, than “Obesity” ever will (you’ll have to read past blogs to get more of my in depth opinion).  And these kids who either battle for their lives against cancer, whether they live or die they have a horrible painful process to go through that NO child should ever have to go through. I’m not discounting how devastating childhood obesity can be, I know that better than anyone, from an emotional point. I’m just saying that you can’t compare and people can raise awareness and attention for more than thing that they should feel passionate about. I’m also grateful to both my size acceptance and weight loss surgery peeps who shared links and donated money. 

  I got mad enough on Sunday that I could not  successfully raise awareness regarding childhood cancer, that when in my news feed it showed that Laura Sobiech would be signing books at Mall of America, I decided to go. I figured I’d be able to thank her and let her know how positively Zach and her family changed my life. 

  In trying to be an activist for childhood cancer, I loathe having to say certain things. Such as the fact that going to Mall of America on a weekend day is not my idea of a good time. I do the mental health and medical activism that I do because of my cognitive damage and what led up to my life being this way (another blog coming shortly about that) and it being so small. Even though I’ve gone in great detail about it, in past blogs. However because I can’t drive any longer, I have severe chronic pain, major anxiety, Mall of America on a Sunday, is REALLY not a good idea for a place for me to be or even attempt to get there (via public transit). But I really believe in what I’m doing and it was really important to me to thank her, especially given the fact I felt I failed so epically at raising awareness. 

  So I hightail it to Mall of America, in spite of looking and feeling terrible . I see how busy it is and slightly freak out, internally but decide this is too important to me, so I decide to stick it out. I go to the rotunda, buy my book and get in line to wait. While listening to Clouds a million times, as I have the last 11 months because I find comfort in the song. It’s like my musical “blankie”. 

  Finally, it’s my turn. I’m so nervous and I tell her that. I told her that I’m more nervous, excited and in awe of meeting her then when I was when I shared a flight with Princess Diana in 1996 and she laughed. (True Story… I went to London for a business trip for both Carlson Marketing Group (my employer at the time) and British Airways (our client)  and went via Chicago O’Hare in June of 1996 the same time, that Princess Di was in Chicago for Breast Cancer awareness. I got paid to go to London where I only worked 4 hours, in business class. It was the first time in my son’s 3 1/2 years I’d ever been away from him more than a day and I actually drove myself to the airport and back in my own car(and no, I can’t make this shit up if you’ve been reading my blog from the beginning 😉 ) )

   I also told her that I’d been an University of Minnesota Medical Center patient. And that I had remembered how sad the eyes were of the parents of the castrophically ill kids were as well as how brave the kids were when I was on that hospital campus from 2006 to 2010. That as a disabled mother who wasn’t raising my kids anymore that I’d be so inspired and in awe of Zach and his family that I finally launched my blog that talked about topics that cause stigmatization and in return helped a lot of people, who shared their most painful secrets realizing they didn’t have to live with shame and stigmatization. She was extremely gracious and kind and thanked me for coming out (I obviously am not going to complain to a woman who lost her child to cancer about how hard things are for me). 

   So after we were done, I went outside to have a cigarette. And while you’ll have to buy and read “Fly A Little Higher”, to get the reference I was one of those yucky smokers hooked up to an IV at Fairview University Medical Center. And I get how offensive the whole topic, smoking can be, and try to be sensitive to that. Even though there was quite of few of the parents of these sick kids (judge me if you like, please don’t judge a parent who’s child is fighting for their life) who did smoke. 

   I happen to run into a man who used to be at the group home I lived for a year during the 15 1/2 months I was in the system while outside having that cigarette. He would visit his friends at that group home on a daily basis. He asked me what group home I currently live in. I told him I lived on my own in a small apartment. He said he’d been happy to be at the group home he’s been in for a long time. He asked me what I did for work. I told him that I was a medical, mental health and weight issues blogger. That didn’t register to him. Neither did the fact when he asked me why I was at Mall of America and I tried to explain Zach Sobiech, his video, social media, etc. Anything I said, did not make any sense to him. He has no idea of anything about the computers or the internet. Or the fact not everyone is a lifer when it comes to the system.  

   I, at first, felt sorry for him. Then I realized he’s the best case scenario of someone who lives their life with severe and persistent mental health issues. He’s never known anything but the life he has being in the system. He’s not violent and he’s happy. He’s doing a lot better than I am, where I can’t help not be stuck on everything I used to be able to do. Especially as far as my children are concerned, which I’m more impaired cognitively than I am with mh issues. People with BPD2 can work and raise their kids. I just happen to have some complex medical, mh and cognitive disabilities that as a whole, impede my ability to give my children what I used to and what they deserve. May is Mental Health awareness month, just as a heads up. 

   I haven’t committed to raising awareness and hopefully some money for childhood cancers for more then 2 1/2 weeks because of my cognitive disabilities. There’s lots of things I’ve hoped I’d remember and I don’t anymore. I have to be grateful for what I can remember but that’s getting worse. I am committed to remaining as an armchair activist for medical, mental health and weight/size issues as long as I can articulate thought that is helpful and not harmful to others.

   I am grateful for things this Mother’s Day week. And in life in general. I’m grateful that I can have and have healthy children. I’m grateful that I still can live by myself. I’m grateful that I can get myself places and do things. I’m grateful for the fact I can make my own choices. I’ve had that taken away from me, as I’ve said before, in my blog. It’s not something I’ll ever take for granted, again. 

  What I struggle though with, is that kids have to battle childhood cancer whether they live or die from it. I struggle  that I could find the words and the means to thank Laura Sobiech, Zach Sobiech’s mom. It’s much harder for me to show in action and find the words, which will never be enough, to thank my own Mother, for everything she’s ever done for me and for my children. And to make things right for the people I love the most. There just will never be the right words for that.   

  

In honor of Zach Sobiech …….

http://www.childrenscancer.org/zach 

   5/3/2014 should have been Zach Sobiech’s 19th birthday. He should have been finishing up his 1st year in college. Instead it’s 11 1/2 months since he passed away after years of valiantly battling for 4 years  with osteosarcoma, 2 1/2 weeks after his 18th birthday. 

   I, truthfully did not know about Zach Sobiech or  his family until the day he died on 5/20/2013. That’s when I read about his viral hit song “Clouds” and his family in People magazine. That same day I checked out his song “Clouds”. I checked out he celebrity video for “Clouds”, as well as his video about his last days on Soul Pancake. The links will be posted at the bottom of this blog. 

  I, truthfully wanted to do something right away, as I was nothing short in awe of this young man and his family. As days and months past, though, as I found myself wanting to do something and he was instrumental in my launching my blog and help fortifying me with strength to do the activism and advocacy that I do on the internet, because even though I am of limited means, I felt I could do something despite my complex disabilities to make the world maybe a slightly better place.And try harder to become a better person. I have never in my whole entire life been more positively influenced by anyone person and people  that I have never met, like I’ve been influenced and inspired by Zach Sobiech and his family and friends. 

  Zach Sobiech and I have something oddly in common. Other than living in Minnesota. We both spent time at Fairview University Medical Center in Minneapolis,MN. I’m not comparing my circumstances to his, though. I chose to have a gastric bypass in my early 30’s. While I didn’t choose my complications or the the need for my gastric bypass to be reversed to save my life, he didn’t choose to have an aggressive form of cancer that would tragically end his precious life at such a young age. He did choose to make the best of his circumstances and try to raise awareness for childhood cancer so that children with cancer would have more birthdays in an amazing way. I used to talk when I was in the hospital a lot, especially in 2010, to parents who’s kids were very sick on the 5th floor there, which was Pediatrics. As I had a lot of trouble staying in bed and would walk around the campus. Those parents had the saddest eyes. I used to see the same parents there, month after month.Some of them for years. I’d listen to them. I met their amazing kids and I’m sure the amazing nurses and doctors, there, before Amplatz opened up, helped them in the battle. It would haunt me. It still does. And I am so grateful to have had healthy children. 

  I had though, to get over the issues I had with some of the mistreatment I received at Fairview University Medical Center, to be able to do this, even though his foundation is not just Fairview specific. I’m not saying that there isn’t some amazing medical professionals at Fairview University Medical Center. Because there is. However my own circumstances did get me labeled and they made it much harder on me, than they had to, at times. Which I did end up filing a grievance against the hospital last fall. All I wanted was an apology for some specific incidences. Didn’t get that but to be able to do this, as well as I have friends who gotten treated well at Fairview University Medical Center, as well as friends employed withing Fairview, I had to get over that. I probably will in the future address this, in my normal activism. But not now. 

   For the next 2 1/2 weeks that I’ll be trying to raise awareness of childhood cancer in honor of Zach Sobiech, from what should’ve been his 19th birthday until the 1st anniversary of his death. And hopefully money. I don’t know why any of us can’t at least be an advocate of raising awareness and  donating money for research so there can be a cure for one day, even if it’s just one dollar. Or sharing awareness if you don’t have any money. While most of the time I spend raising awareness about body diversity, weight loss surgery, bullying and mental health issues, we could all at least for one day, all be advocates in trying to help raise money and awareness for childhood cancer in hopes of a cure. 

  I’m not saying my social media contacts who are normally either raising awareness about adult and childhood obesity or my social media peers who are angry about all the attention that obesity gets and shouldn’t, have to stop doing that. But it does anger me that there is so much dialogue, awareness and money raised now for obesity, it’s like we are a country that can’t stop talking about anything else. No one child or adult should have to fight or die from cancer. But thousands and thousands of children are dying from cancer, every year. If we gave childhood cancer 1/2 the attention (and it deserves MORE) that we gave weight issues, some of them actually could  probably have been cured by now. 

    Hopefully we can all come together to raise awareness in honor of such wonderful young man and his family. 

         Rest In Peace, Zachary David Sobiech…….

No copyright infringements intended on the links below……

Celebrity “Clouds” video/My Last Days Zach Sobiech 
https://www.youtube.com/watch?v=7zxXAtmmLLc

My Last Days: Meet Zach Sobiech 
https://www.youtube.com/watch?v=9NjKgV65fpo

“Clouds” by Zach Sobiech 
https://www.youtube.com/watch?v=sDC97j6lfyc

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