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

Archive for May, 2014

Reflections of a “temporary” Children’s Cancers Activist…

Image

  I’m on the 17th and (final) day of my social media campaign to raise awareness regarding children’s cancer, specifically Osteosarcoma which tragically took the life of Zach Sobiech, exactly one year ago today, on 5-20-2013. That’s when I first heard him about him, his family and his song “Clouds” and Soul Pancake videos because it was on People.com.. I started this campaign for awareness and donations to the Zach Sobiech Osteosarcoma Fund on 5-3-2014 which SHOULD HAVE been Zach’s 19th birthday. 

   I wasn’t exaggerating that hearing about him, his family and the song ACTUALLY did change my life. While as I said in my original Zach Sobiech blog on May 3rd, that it did change my life. I already had the life experience of being someone who was on campus from 2006-2010 at Fairview University Medical Center where he was (originally, as Amplatz didn’t open until 2011) , and while I suspected that when I saw the Soul Pancake videos, also exactly a year ago, I didn’t know that for sure, until I read Laura Sobiech’s book “Fly A Little Higher”.   

   So what did I actually learn from this experience in this last year and in the last 17 days???


    1. Don’t put off saying or doing anything that needs to be done today as you aren’t guaranteed in infinite time to get  what you want accomplished…… While my life experiences and circumstances have reinforced that, especially because of my memory loss issues, Zach Sobiech drove home how important what we be and what we do in the moment. And not to take that for granted. And be grateful for the experience.  

    2. Do what you believe in and not be afraid to fight a good fight.  I did that with finally launching this blog last summer. I also did that with filing a grievance against Fairview University Medical Center last Fall, in preparation of my being able to struggle a little less with this task. While I remain focused at this time in raising money for the Zach Sobiech Osteosarcoma Fund, the irony is NOT lost on me, that while I believe that there are many amazing medical professionals affiliated with the Fairview system, as I also have friends employed there in clinical and administrative positions, as well as friends who were extremely satisfied with their experiences there as patients,  they did make it harder for me to get medical treatment then it should have been and that had consequences on my own children. All I was looking was for an apology. That will be though a topic for a future blog. 

    3. Some people are never going to get behind a cause unless it hits home. Or it’s the same few people who you can count on support for anything else, as it applies to social media.  I naively thought that with how horrifying children’s cancers are, that it would be easy for EVERYONE to retweet a link or share a link on Facebook, to raise awareness or make a donation in hopes of a cure or less invasive life extending treatments for children battling cancer. People say about me or think because I’m not raising my children anymore, or that I have so much free time, is why I am doing this. I can’t say I’d be doing this on this level  if I was still was working or raising my kids. I’d be doing something though after spending so much time on campus at Fairview University Medical Center and listening to parents of catastrophically ill kids and meeting those children. After hearing about Zach Sobiech? Most definitely.  I’d be doing something in gratitude that my own children have only been to FUMC once, and that was in Fall of 2010 to visit me after my gastric bypass was reversed and that they have the privilege AND luck of being in great health. 

   4. Because we get sometimes get thrown on paths we never imagine…. I learned most of all that I could take a really bad set of circumstances and use them for greater good for others and myself. Directly as a result of Zach Sobiech, his family, friends and the song “Clouds”.  It won’t change my past but I can change my present and my future, even it means I can only change how I choose to PERCEIVE it.  And I have positively effected other people when sharing my truths on this blog. I also was forced to step out of my comfort zone repeatedly, in positive ways, fortified in strength and some comfort that the song “Clouds” has provided me.

   Initially with my campaign not going well to raise money for children’s cancer and my paltry donation to his fund, led me to go to Laura Sobiech’s book signing, a task I wouldn’t done, had it gone well from the start. And I personally got to thank her and explain a little of the profound effect that Zach, her family and his friends had on my life.  I’m learning even with my complex disabilities, I’m stronger and more capable of things, then I give myself credit for. And I wouldn’t have been this way now, if there wasn’t people like Zach Sobiech, his family and friends and if there wasn’t Soul Pancake which I didn’t know about until exactly a year ago. 

    As I’ve said, my disabilities limit my ability to follow through with commitment to things. My commitment to this, I’ve seen through to the best of my ability. While part of me is relieved that I don’t have to be enmeshed in this for too much longer, I will on occasion go in “children’s cancer” activist mode. I realize that is a privilege and due to luck. As hard as it was to ask people to spread awareness or money, I’ve seen up close and personal of how hard is for these families to have to battle children’s cancers. I’ve lived life 2 1/2 times longer than Zach Sobiech was given the opportunity to and he did way more in his 18 years, than I could ever dream to  accomplish.

    But at least I’m doing something.  I think of all those kids who no longer have voices, because their lives were extinguished way too early and we will never know what they were capable of and that they had to fight so hard and die such a horrible painful death, so young. Parents who no longer have children and those who no longer have siblings. Children who do make the best if they have battled cancer and survived but they had to fight such a hard and ugly fight but saw beauty in it anyway. I can’t imagine what it’s like to experience it and because I’m grateful that my children are healthy, I will try to continue to do a minute part in hopes to help spread awareness and find a cure, but remaining true to what I’m better suited for in what I normally do activism for. 

    In my last day of trying to raise awareness of children’s cancers , I’m doing one final strong push for the Zach Sobiech Osteosarcoma Fund. Share one of the links I’ll provide. Donate what you’d spend on a cup a coffee. Download or purchase A Firm Handshake’s “Fix Me Up”. I don’t care if I’m associated with this or not. I just hope whoever reads this, if you aren’t doing something. That to honor Zach Sobiech and other children who’ve battled cancer that you do something. Today or any day. Thank you. 

http://www.childrenscancer.org/zach 

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

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

https://www.youtube.com/watch?v=5iTImZGOtc4 My Last Days: Zach Sobiech, One Year Later 

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

https://www.youtube.com/watch?v=KvSYZHmhIAM Fix Me Up by Zach Sobiech, Sammy Brown/ A Firm Handshake….. It’s what Sammy is singing at Mall of America on 5/4/2014 at Laura Sobiech’s book signing of “Fly A Little Higher” ,that I took when I went to and took picture, featured above. 



When HATE is a TRANSFER ADDICTION….

   I get privately asked a lot of why I still remain in the weight loss surgery community when I am reversed. Part of it because I like people and weight loss surgery is one component of their lives. The other is because well I had weight loss surgery, I lived my life and truthfully, nearly died for almost 9 years before my gastric bypass was undone in 2010, with a rny as a tool.  

   I still also after over 3 1/2 years of being status post open gastric bypass reversal can relate to a lot of people in the weight loss surgery community. 

   I am not a “weight loss surgery specific blogger”. For many reasons. Not just because I’m reversed and didn’t keep off most of my excess weight. However I do still remain a part of the weight loss surgery community online and on Facebook. 

  There always has and always will be drama and hate in any online community. The weight loss surgery community is no different. My opinion is that a lot of us are online whether we are weight loss surgery peers or women and men, who’ve been of weight, looking for distraction, of not wanting to think about eating or food. This is not a weight loss surgery specific issue, either. 

   We aren’t all going to like each other. Some people aren’t meant to be friends at all. Or the relationships only are seasonal. But whether it’s weight loss surgery specific, there will always be drama and there always will be haters. 

    So I guess the question that I’m going to ask and am going to answer is what do you with people where it’s obvious that “hate” became their transfer addiction in the weight loss surgery community? 

    You can be a part of it and not engage in drama or hateful actions. Or you can choose to walk away (because I’ve been a part of a group mentality at one time, and while I never did anything, I also let someone for a short period of time do my thinking for me, and ended up saying things I wasn’t proud of, to a certain group of people and had to apologize). You definitely don’t have to own it,forever. Either by engaging at all, or if you have by removing yourself from the person causing the drama and hate.  

     Absolutely NO ONE has any right to tell you how to think, feel or act in the weight loss surgery community, online. Whether you loved your weight loss surgery journey or you regret everyday that you had weight loss surgery. You are entitled to feel what you feel. And no one has the right to make you feel bad about what your opinions are or who you are, if they aren’t causing harm to another.  

     If you don’t like the “hating and drama” that end up does happening in the weight loss surgery community, your best bet is to just not engage. Even when some people will go out of their way to hurt any one of us, because there ARE people who will go way out of their way to hurt you and those you care about. Because what happens sadly, when hate becomes THEIR transfer addiction and you let it affect the way you live your life, shame and sadness becomes yours. And you don’t deserve that, OK? And given the magnitude of the hate and drama that I’m seeing, towards some of my fellow wls peers that I adore, I think legal action is going to be necessary. Do know others care and provide non judgmental support to the wls community if you find yourself a target by any hater. Especially one in particular who goes WAY OUT OF HER way, to cause harm to quite a few in the wls community. 

       This is my opinion… Now I’d like to know some of yours…..

Link

The Most Important Walk of My Life

The Most Important Walk of My Life

My 1st attempt at photo blogging. After writing so many blogs, I still realized that I was stuck in my past when I was in the system… So I walked to my old neighborhood and exorcised some of my sadness from that time on 5-12-2014. While it still will be hard as far as how my life changed in the last 6 years as it applies to my kids and not being able to do a lot of things, I’m trying harder to concentrate on what I can do…..

WE ARE NOT ENTITLED to know EVERYTHING about celebrities…..

  I just read about Jay Z and Solange Knowles fight. How I missed up until now, that I don’t know. Probably, because I was spending most of yesterday, either writing my last blog and working on what should’ve been my next until I saw the assault trend on Facebook and read how much Jay Z was being mocked.

   This is my opinion on it. And if I missed any one of my social media friends who might have posted it, in jest, I guess we are going to have to take the stance “to agree to disagree, respectfully”.

    I guess I’m missing where this is funny. AT ALL. If it would’ve been in reverse, the internet would be crucifying Jay Z. While I’ve only blogged once about celebrities (that would be of Kanye West, the Kardashians and Kris Jenner) last Fall, making jokes and memes about this situation is in such poor taste, in what I feel is not my so humble opinion.  

   I admit I check out People.com and while I don’t love the eleventeen twentytrazillion stories about weight loss, I am a not so closet celebrity junkie. Not the point of gawking or finding what should be someone’s private business, public. That’s why I purposely stay away from TMZ.com. It makes me feel like a dirty voyeur and they should feel that way. But there’s too much money and attention  at stake.  

   Well in this era that almost everything is newsworthy for about 2 seconds, people should be forgetting this shortly. Spare yourself from arguing with me, that celebrities deserve this kind of scrutiny, THEY DO NOT. 

   As someone who’s poor, disabled, has no power and has managed to find herself mocked on an internet site for profit, I find this repulsive (I blogged about that a couple of weeks ago)  and I guess a great way to get hits on my blog and the site that’s hosting the mockery of a serious blog of mine, is insert the word “trainwreck”. As out of all the blogs I’ve ever written that was my most read blog. 

   I guess my life history past and present doesn’t like mocking people in vulnerable situations. I don’t care who they are. Whether they are a celebrity “A-list” power couple, a celebrity that needs mental health or chemical dependency treatment or a non famous person who ends up on a show like “Hoarders” or “Intervention”, when people who are the midst of a crisis really DO NOT have the ability to give informed consent.

   As I stated in a more recent blog, a couple of days ago, I did share a flight with Princess Diana where I saw the intense scrutiny she was under, up close and personal in 1996. I can’t imagine what it’s like for celebrities, in the era of social media.  

   This fellow Brooklynite hopes Jay Z can sue TMZ’s ass off…… 

What NOT to say to those of us who are “differently abled”…………..

    May is Mental Health Awareness Month…. I decided to throw in a blog of what I loathe hearing on a regular ( I mean CONSTANTLY, as I  can’t personally be hypersensitive or let things constantly set me off being said in passing, I’d never be able to survive being on social media or in our current society) basis or things I have to hear on a regular basis that is a major pet peeve,  as someone who has a combination of medically, mentally and cognitively disabilities or to people who have loved ones with similar disabilities as mine.

   Because I’m a little more aware of my barriers, I also know that while this will be helpful to a lot of people,we all vary in our perception of things.  Meaning what is helpful to one could be harmful to another, so make sure you are sensitive to the actual circumstances, abilities and skill sets (or lack of them) of the person you are trying to communicate with. Because I’m considered “higher functioning” than most with similar diagnoses, is at very best a mixed blessing. Sometimes ignorance as it applies to myself and my life circumstances, would be actual bliss….. 


#1. ” I AM SO busy,busy, BUSY!!!”…. It happens to be that most of my social media peers, as well as my “in real life” peers and people are actually BUSY. They are highly educated, have jobs, families, are going to school for career purposes, etc. It’s a fact of life we communicate with people to tell them we are up to and feel a connection and in fact a lot of us are busy. In my case though, I’m not “busy” with the same things that my peers and/or friends online and offline are. It doesn’t bother me to hear everything my friends are up to and or what they are busy with. 

   It does however quite OFFEND me, if you use “busy”, as an excuse to avoid communicating with me or seeing me. Because I’m aware that I have less responsibilities due to my current life circumstances, I usually keep things open ended and let others make the first move when it comes to making plans or initiating contact. If you make plans with me constantly and then break them because you are “SO BUSY!!!”, I’m just going to stop paying attention to you. I have a good sense of right and wrong. I am not going to engage in psychological warfare or get revenge. You are just going to not be relevant in my teeny tiny world, any longer. ESPECIALLY,  if you knew me in my “other’  life as a “busy” single mom of 2, who worked full time for many years and managed a household and/or you’ve actually met my children when they lived with me and saw how happy we were at one time and I still managed to make time for you and YOUR issues. Or did nothing when my life and my children’s life was falling apart. I managed to forgive some of you. You could extend me the same courtesy.

    I wouldn’t complain to someone who can’t have children or who’ve buried them, of how painful my circumstances are. I wouldn’t complain to someone who’s in a wheelchair or needs a mobility scooter of how painful walking, is. When people CONSTANTLY use busy and their life circumstances that I can’t do anymore, in a kind of “fling it in my face” way, such as the fact that their car insurance is so high, their kids clothing budget is “CRAZY” (not a good choice of a word to me, btw) and all they seem to do is “live in their freaking car, driving to_______”…..  Those are problems I NO LONGER have and I miss them. I don’t compare life circumstances or think mine are any more relevant, I know better. Some people will not. Again this is about being sensitive to the person who you are trying to relate to. 

#2 I AM NOT CONTAGIOUS….. You aren’t going to lose your abilities, all of a sudden develop Bipolar 2 Disorder, gain an enormous amount of weight, develop aphasia  or constantly be in severe chronic pain, or any of my other health issues, if you communicate with me or spend time with me. Given the fact that my “disabilities” are circumstantial not congenital (well other then I probably was born with some of the seeds of my mental health issues, they just didn’t blow up until my late thirties, which is rare) and I was born to be prone to being eating disordered ( I started as a toddler using food as a coping mechanism) it’s not contagious.

    While my current diagnoses have greatly effected my life, I am more than my diagnoses. I have the ability to say that as a medical and mental health activist. But I’m also not a clinically trained professional. Some people with different skill sets do not have that ability and because of their barriers, as long as they aren’t hurtful emotionally or physically, you cannot use that against them. For self preservation if someone who has mental health issues in your life is abusive or is greatly negatively effecting your quality of life and/or peace of mind and  is not aware of it, get appropriate professional help for yourself or them, IMMEDIATELY. 

#3 MY LIFE IS NOT EASY…. Most of people’s lives are NOT easy. Whether they have life altering circumstances like I did, that made me lose many abilities, that I used to have, but I don’t have any longer. Or they have their own personal life circumstances that they would NEVER tell you. I don’t begrudge the good things that my friends/peers have from hard work or even if they are lucky. Because I realize that not everyone is as open as I am about things. And I wasn’t always this way and I wasn’t raised to be this way. 

    Hearing constantly that “must be rough to have so much free time”. I didn’t gain my free time either by hard work and retiring early. I did NOT just wake up one day and thought, this “parenting thing”  and “working thing” is just way too time and energy consuming and throw my children out and decide not to work any longer. I try to make the best out of my current life circumstances because NOTHING has ever come easy to me and I realize that could apply to people who have disabilities and who do NOT. Most of anything I did accomplish and I could’ve been proud of, happened before Facebook but I’m only 44. 

    The best expression I’ve heard to help articulate mental health issues but could be used for more than that. “People ask me why I always take the hardest path, they assume I see more than one path to take”. Again, I know  most of my disabilities and barriers. But not everyone does. Whether they have diagnoses attached or not. Sadly, this could be said about anyone and anything, hindsight isn’t foresight. Some people can’t see the hurtful things they do or say because of their own barriers. I have major remorse for things I did or didn’t do or said and wish I wouldn’t have said but I can’t take back. Everyone does, to different degrees, though. 

#4 MY BLOG IS MY WORK AND…..  Even though it’s poorly written compared to most bloggers and professional writers and I don’t get paid for it, doesn’t make it any less important to me. And I’ve been told by a lot of people it’s helped others. I used to get in my car, drop my kids off of to daycare and go to a place of employment. It’s not a hobby just because I have so much free time (reread #1 & #3) . If you wouldn’t (and you shouldn’t) tell a friend who’s an artist  that you could drop a can of paint and produce a finer work of art, please don’t minimize what I can do or what is important to me, given my current life circumstances or anyone’s. 

    This is both disability and non disability related. Be sensitive and respectful of people’s limitations and barriers. But keep an open non judgmental mind.  Some will get what, when, who and why things are of importance to you. Some people won’t because they can’t. Some won’t because they don’t care. Choose carefully in what and who you invest time, money and energy in. At the same time, we all are full of surprises. I’ve had medical professionals describe me as someone who could be taught (but only temporarily retain) how to fly a 747 and perform a thoracic surgery, simutaneously. There are other times that if I can get out of bed (which I always do because even sleeping causes me enormous pain)  and within the first 8 hours have a sip of water, it’s a good day. And it’s about as productive as I’m capable of. 

#5 NOT EVERYONE WITH MENTAL HEALTH DIAGNOSES IS VIOLENT 
     I will write another blog about personal and public safety. However I get in my private email on occasion that people actually fear me or make assumptions of what I’m capable of. What I’m capable of and what I actually do or not do is a different story. If anyone pisses me off, I am pretty good at articulating that I think someone is a piece of crap and I’ll tell them that, if provoked. That’s it. I’m not going to wish them well however it’s not my right or desire to inflict any kind of harm on anyone. Especially in my case with being a hoarder at times and having a serious suicide attempt, I very unintentionally hurt my children, by neglect. I can make my peace with the time I did in the mental health system, ONLY , because of that. And this why I do the advocacy and activism I do. 

    I however have been accused of wanting to do things I’d never think about or do. I pretty much have owned in this blog, the more serious aspects of my own mental health issues. I’m NOT hiding anything else. What I’ve admitted is HUGE and HUMILIATING.  I’ve  received anonymous hate e-mail for example, accusing me of being a stalker. I can’t even fucking figure out how to edit my blog. I can’t believe that anyone would think that I’d have the capacity to figure out how to utilize web address identifying technology or even if I could that I’d actually use it. What am I going to do, stalk anyone via public transportation??? That’s their own issues talking. I’ve gotten over being offended. 

   While people who are violent have a form of serious mental illness, not everyone with serious mental health issues is capable of violent crime or irrational acts that pose a physical safety risk. Some pose no risk either physically or psychologically to others, they just have dysfunctional thought processes that impede them from fully being able to live their lives. Some people have awareness that they have their diagnoses, some do not. 

    So this is some of my biggest pet peeves of what people say or think about me. I wouldn’t mind hearing of what some of the biases you face whether you have diagnoses and/or disabilities or not.

                  Because when it comes down to it, we all are “differently abled”………..

Ugly Hurts………

  https://www.youtube.com/watch?v=LXXQLa-5n5w

Official Beyonce/”Pretty Hurts”…. No copyright infringement intended

Image

I just heard for the first time, a couple of days ago,  Beyonce’s song “Pretty Hurts” and it blew me away both the song and video being hauntingly stunning and raw…. 


“Pretty hurts, we shine the light on whatever’s worse, perfection is a disease of a nation… Vogue says thinner is better…… You’re trying to fix something that you can’t fix what you can’t see, it’s the soul that needs a surgery”…….

   I wasn’t going to at first give either Beyonce or her video for it any credence before I saw her video and heard the song for the first time. For someone who’s been horribly bullied for being fat and ugly from the time I was in pre-school to the time I had my gastric bypass which was 3 days after my 32nd birthday (I’m almost 44 1/2 now). The desire though to look and be perfect which was a big deal when we were young has never been a bigger deal now in our society for both young girls and women.

I am not saying that people who are considered beautiful don’t hurt inside. Whether they are thin or not. It’s just easier to be beautiful and thin on the outside, in our society. Doesn’t mean it’s any easier for people who are thin and beautiful on the outside, internally. Or that thin people don’t get bullied. I still recognize this even though it’s not a problem I’ve ever had (well I did put up with some thin bashing at my thinnest).  You might get a pass for being fat if you have what’s considered a beautiful face. You’re kind of FUCKED, in the era of Facebook and Instagram if you are neither thin or beautiful.

I titled this blog “Ugly Hurts” for more than one reason. I’m an ugly looking person with an even uglier life story. I thought pathetically that being fat was the worst thing to happen to me, for the longest time. Which I’ve gone into deeper detail in other blogs of mine on here. Then also  as stated in my first blog on here, at the age of 38 1/2 in 2008, I had my first psychiatric hospitalization due to suicidal ideation. I had gained a lot of my weight back that I’d lost from my gastric bypass when initially I had my nervous breakdown the year before due to medications I had been put on. Because I did try to commit suicide 10 days after my first hospitalization, after I gave up custody of my children, where they lived in a filthy cluttered house the last 2 years they were with me due to hoarding,  I nearly got committed to a long term mental health hospital during my 2nd psychiatric hospitalization. Even though I didn’t get committed, I still ended up in the mental health system for almost 16 months.

And I still had medical hospitalizations due to gastric bypass complications while in the mental health system.  I’ve been living on my own since January of 2010. Because I continued to have gastric bypass complications that continued to get worse, more hospitalizations and I nearly died a couple of times, my gastric bypass was reversed in 9/2010 and because I got more sick then “Obesity” could ever make me or  posing a medical threat to me, my bariatric surgeon did NOT revise me to another bariatric surgery.

However my medical and cognitive disabilities are still getting worse. My mental health issues have to be controlled by awareness, as clinical professionals have deemed it’s not in my best interest to be on psych meds, any longer or have ECT and living independently with medical and cognitive disabilities  is almost a full time job in itself. The damage though that has been done for wanting to be beautiful  while never expecting it,  is very visible in me on the outside even though most of my disabilities are internal. Being eating disordered most of my life. My gastric bypass complications that while I’ve managed to still get fat again, the long term severe nutritional deficiencies, aged me and made me even uglier on the outside. The thousands and thousands of times I’ve thrown up due to bulimia the 10 years before my gastric bypass,  pregnancy related hyperemesis and gastric bypass complications, fried my hair, skin and have all but  destroyed my teeth. Not only is it humiliating to have to worry about what comes out of my mouth as far as words, it’s humiliating of what my teeth look like due to decades of erosion from vomit .

I carry a lot of shame for a lot of things. Despite of everything that I’ve gone through that carry shame, that are considered just to be superficial.  I actually wrote a blog a couple of months ago that talked about the mini internal nervous breakdown I had when I saw Sports Illustrated’s 30th Anniversary Swimsuit Issue. I figured that would be relatable to a lot of women, who’d I hoped would spare themselves, reading the magazine. Because of what the lyrics of “Pretty Hurts” says. In the magazine, not only does it shows all the supermodels looking gorgeous, regardless of age. But it just sets a dangerous precedent for women, kind of like what Beyonce does. Women not only have to be beautiful,be thin, successful, we also have to be really smart, have an amazing sense of humor and be wealthy, regardless of  our age.

 What I had wanted to say that is so damaging to most women, unless they are featured in the magazine. And it’s probably damaging to them, too, in the era of Photoshop. As most of those models are exceptionally beautiful without Photoshop, but without Photoshop, they don’t even look like that. So we’ve managed to set such stringent standards of beauty that even most supermodels aren’t capable of.

I never published that blog though. Because while I could relate as a single mother or as a woman who had a “normal” life with a lot of responsibilities at one time, who worked full time, had her kids full time, drove a car and managed a household, it was never enough. I still wasn’t pretty enough. And then once I became thin enough, I got sick (from my gastric bypass complications not my weight either thin or fat). Not only did that change the playing field for me, it totally took me off of it,after many years of being physically sick. I had all I could do survive still being so physically sick, psychologically disintergrating and so heavily medicated and then being in the mental health system.

So I never published that blog.  I didn’t think coming from me, at this point in my life, I’d have ANY credibility. Not to mention that after everything that I’ve been through, that if all I agonized was about my weight and my looks, after everything I’ve lost in ability, that would make me a superficial imbecile. Not to mention I’m an “armchair activist” when it comes to serious matters such as medical and mental health activism, anti-bullying, body diversity.

However, I’m still human. And female. And I’m on social media. And while there was a time that I could do better as trying to my hardest to conform to what society and the media says I have to be a worthwhile woman and mother, I can’t now. Both in what I am supposed to be doing and truthfully what gets to me, is sometimes what I look like and how much I weigh.I’m the antithesis though in both what I do and what I look like when it comes to perfection. I’ve gotten to the point that every time that I try, it takes so much effort, that I rarely even try anymore. I’m kind of suspended between multiple worlds as I’ve said before. My old life as a single mother with 2 children that I love more than anything who was fat at one time then thin. Who had a bright future at one time. The isolating and ugly life that was my life temporarily in the mental health system. That people who’ve been in the mental health system can’t relate to me and people who haven’t been in it, or have the complex disabilities that I now have,can’t relate to me either, that makes my life so small. But I get it more than I don’t. I don’t live with any delusion or any denial. So as tough as being a perfectionist is, which I tried and failed at, so long ago, so is being a realist, now.

I do make an effort to advocate and be an activist. I don’t want my daughter who’s a tween to measure her self worth by what she looks like and what she weighs. I don’t want her to get bullied or be one. Because it’s Mother’s Day today, I want my Mom and my sisters to know I never meant to fail them either. They are beautiful inside and out. Smart and productive people.They are amazing mothers, daughters, sisters, friends and aunts.  My failures and shame are not theirs or a reflection of them or a choice that I would’ve consciously made. And that I’d give anything to change. What I can do in abilities, of being able to make them proud of me. And yes, of what I look like.

And  I’d be lying if I didn’t fess up to the fact that I have the ugliest of hurts. On the inside and out. Both justified and the superficial. For my social media peers or anyone who feels shame on what they look like, how much they weigh or they don’t feel they will measure up, this is what I want to leave with you, with.

You are much more then the sum of your parts on the exterior, the size of your clothes and how much you weigh on a scale. There is beauty in almost everything and all of you. And there is people who see it, even if you don’t. So change the criteria you use to measure your self worth, OK? What you all have accomplished can’t be measured in a photograph or by a scale. For how many of us still do that, maybe we as women can help each other, not do that to ourselves anymore.And ask for help if you are struggling if not drowning, emotionally.  And maybe others, society and the media can stop being hateful to those who they feel fail miserably just because they can’t ever measure up in unrealistic and impossible standards of beauty that are imposed upon us.

At the same time, it’s ok to feel good about yourself, if you’ve made changes in your exterior whether it be weight or how you look. It just isn’t something that should just be your proudest moment or most defining thing about you. You are so much more. And you’ve all accomplished so much. As women. Some of you as mothers. Professional and personal accomplishments. And if this helped, either in articulation of my sadness about my failures, especially this Mother’s Day, then maybe I’ve accomplished something that I can be proud of. And this Mother’s Day I will be celebrating quietly and by myself, the fact that I’m grateful for the amazing women in my life. My amazing beautiful, smart and wickedly funny Mother who I’m so lucky is alive and my sisters who’ve done so much for my children, their children and for a lot of others.

But most of all, I will be celebrating that I was blessed enough to have 2 wonderful, beautiful, smart and healthy kids. And while I do most of my celebrating and honoring by myself and from afar, that if I can’t help them, I can do my part to try to make this an easier and better world for them to be in. Especially my young daughter.

Note: Picture I used for this blog, is not one I’m actually very proud of. Because I get used by some people in the weight loss surgery community as an example of bariatric surgery failure, as well as others, I did at one time put a picture up of my “before and afters, because I was fed up about it, at the same time I’m both very angry at myself and a society that continues to only measure my worth in what I look like and weigh The picture to the very left, was taken 3 months before my gastric bypass in 12/2001. The 2nd picture to the left  was taken Summer of 2005, at my very fittest. The picture 2nd to the right, was taken in October of 2009 when I had gained almost 100 lbs back, after being on so many psych meds even though I still couldn’t absorb major nutrients and had horrible ulcers which contributed to the bald spots in that picture,. Sadly, most people only see how fat I am. They don’t realize how physically sick I still was, before my gastric bypass was reversed. The picture on the very right was taken 8/2012, almost 2 years post gastric bypass reversal.

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.   

  

Tag Cloud