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

Posts tagged ‘#flyhigher’

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


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