Saturday, May 25, 2013

Beyond the HoneyBadger: Finding Honor Courage and Commitment

Life experiences alter personal views of "the big picture".  I feel we are constantly preaching to our kids- keep an eye on the big picture. How does what you are doing affect those around you and your future? Kids are not hard wired to do this. It must be taught, learned, impressed, steamrolled or transferred however possible. It's rather ironic considering the lingering thoughts of impermanence that go through your mind when you have a hereditary cancer syndrome.

One year ago, I sat through the girls' May Day celebration recently armed with the knowledge that I had 3 tumors in my breast. I still had the bandage protecting my arm where a sarcoma tumor had been removed with insufficient margins. My husband was across the ocean. All I could think about was those 3 girls and their performances and how much it meant for me to be there and that I had absolutely NO idea how I would be doing next year.

I can now say that at times, dealing with 4 tumors is infinitely less stressful than dealing with some of the wack jobs of parents that litter our community. It saddens me so greatly that these certain few dregs are allowed to ruin a sense of community due to litigious threats. If only I could surgically remove these cancers of the community- I would truly have earned my place as an effective social contributor. I often think the term bullying has been way over emphasized. Bullying is and always has been a real problem- and I appreciate the steps at awareness- but sometimes the only solution is to just stand up to bullies. I've found that you will always run in to bullies. People can be wonderful and supportive and generous- as we learned again last year. Families at school, we had never met- brought us dinners when they heard of my cancer.  The PTA president checked on me daily. I learned that word travels pretty fast in a small community. We didn't tell a lot of people, but we needed the girls to have the extra support from their teachers and I didn't want them to think I was slacking at home.  People can also be selfish and dishonest and conniving. Other people in these circles try and explain to you that this person"means well".  No. Who do they mean well for-their child? Is it doing your child a service if you create a tornado of stress and disarray around them merely so they will not feel bad or left out of a position that they did not earn?

There is one parent in particular that brought such an air of negativity to the entire end of this school year. She is the type of person whose narcissistic insecurity is cloaked in sickly sweet honey. So that if on certain occasions I cannot completely ignore her presence in my world and if it becomes absolutely necessary to refer to her at all- as in this post- she will be the Honeybadger. She would delight in the name and the fact that she is being recognized. She loves recognition. She is the type that goes around telling you how wonderful she and her children are and that she can recognize you are a good parent because she is such a good parent and she can tell that because your children are good children and she has good children and she is a good parent so you must be a good parent. Over and Over. She is the type of parent that publicly announces her 12 year old's time of the month as an excuse for poor behavior.  Yet when her child gets in-school suspension for threatening another child and bullying- she calls you to tell you it is a misunderstanding and you should know that because you are a good parent and she is a good parent and oh her daughter told your daughter about the incident and if anyone asks your daughter about said incident she needs to say she doesn't know anything so her child doesn't get a bonafide suspension. That seems like an exemplary case of good parenting to me.

I am airing my grievances so I can be done with this. I spent the better part of the year avoiding her craziness and she continued to bring it into my world. She negatively affected not only me and my children- but the ENTIRE school community. The ENTIRE May Day program was put on hold so she could air her grievances- mainly that she thought her daughter deserved to be on the court. Part of me says- Jen Mallory are you seriously in the grand scheme of life and cancer and death- gonna air grievances over idiotic drama? The answer is yes- 1) because in the persuit of normal- this is a normal problem people face daily and 2) this person is a cancer and my resounding view is that cancer must go. Since there is no cure for stupid and this type of person will not change- I have to clean my energy and this is part of that process.  So here are my list of grievances against said parent:

1) The aforementioned asking my child to lie for her child.
2) Littering my inbox with overdramatic emails about the girls DC Fundraisers/Trip and not knowing what their roommate "was capable of".
3) Having her child steal the list of May Day Selectees and their ranking.
4)Using said list to disrupt the entire production and littering the email of the Complex superintendent with her drivel about corruption.
5)Acting like an overall asshole
6) Bullying my daughter
7) Encouraging/Allowing her daughter to bully my daughter
8) Having to spend any time at all dealing with her nonsense- in the form of meetings with administration, meetings with teachers, meetings with other parents. 

Girls can be mean. I will not list the grievances against her child. She is a child and I hope through the careful guidance of school staff and other outside influences- said child can ultimately learn the err of her mother's ways. Unfortunately experience and common sense tell me she will grow up to act like the entitled princess she is treated as. All I know is that I stood from a distance and watched her follow my daughter into the bathroom and run across the field to tattle as Kiera came out shocked and in tears over her comments on Kiera's hula . This was only one of several incidents I witnessed. I heard of several more from Kiera and other girls- I don't let them gossip but I am beginning to see they were relating truth. It was a learning experience for all of us. It afforded me many, many, many opportunities to use Honeybadger and her badgering offspring as examples of how not to behave and how 2 people's negative behavior can detrimentally affect an entire community. I used it as a teaching opportunity for my kids and some of the school's International Baccalaureate core values- Honeybadger did not show respect for the program, the staff or the students when she falsely claimed corruption in the May Day selection process. The staff showed there was integrity in the selection process, cooperated and communicated the process. The process was in fact flawed and steps were already being taken to remedy the confusion so that future years would be easier. It takes courage to stand up and fight when you think you have been wronged- yet Honeybadger went about the process with a complete lack of tolerance, principle and overwrought with dishonesty. Remember- "Honeybadger don't give a shit- honeybadger takes what he wants"

I debated whether or not speaking to Honeybadger would make any difference. She is the parent who tells any school staff member that corrects her child that they are to talk to her directly if her child misbehaves. Unfortunately when staff does this- 8 excuses are at the ready, mostly it's always that time of the month- and the behavior does not change. When the child is not awarded recognition at the school assembly for exhibiting the values of the program- the child is allowed to stay home , but of course I am assuming that was because it was that time of month.  When I pick my child up in school and she is in tears because said Honeybadger told her that she should not be doing hula for the talent show - well then it is time for me to step in and have a discussion with this person. Log another 40 minutes of my life wasted on this drivel.  And I was so perpetually sad and angry that I allowed myself to feel stress when this person is not worth it. As we are in the car on the way home- I haven't even calmed down enough to talk to my kids and Kiera reaches over and takes my hand and says "Thank You. "  I say- for what- after all I didn't buy them ice cream or drinks or snacks- that's usually the only time I get thanks. " For standing up for me." Through all the stress- it was right there before me all the time. Honeybadger is a bully and my daughter wasn't being over emotional- she was being bullied. My mama bear instinct was to protect my child and it was right. Sometimes we can not protect our children from the experience, but we can teach them how to better protect their emotions and reactions to people that are undeserving of our time and energy. This woman tried to shake my daughter's confidence. She succeeded briefly. There was a time I wanted to pull her from the May Day court so I didn't have to feel the stress- but I knew how much it meant to her. I later had parents tell me they were so glad I didn't pull her that Kiera embodied the spirit of May Day and we all knew who would have campaigned for her spot.

I think in the process, we all learned. I made new friends who knew of the situation and showed me and my kids support. Friends that show the values I encourage my children to emulate. As we showed up to the 6th Grade Promotion ceremony- Kiera noticed that Honeybadger had half a dozen balloons- several blow up toys and bags of leis. Tradition in Hawaii is to literally smother the "graduate" in leis. I respect the tradition, but the clausterphobic allergy sufferer in me lies awake dreading accomplishing anything in this culture. I spent the night before making 2 yarn and kukui nut leis in Kiera's favorite color. Flowers die, but these leis would be tokens of how proud her dad and I are of her hard work and growth this year as a young lady. As we sat through the ceremony, the special awards were being given. A marine has been tasked with giving the big award- THE award for one girl and one boy who have exemplified the school's values and exceptional academic performance. Their names will go on a plaque in the office for eternity. Kiera spent hours and hours working on school work this year. She really tried. It was not easy for her- academics are a struggle- but she worked hard. Her grades weren't always exceptional- but compared to previous years- she really came into her own. So when the Captain calls her name- I am floored and so unbelievably happy for the little mighty mite I can hardly contain myself. I know there are several other kids who have worked as hard as her- so for someone other than me or her dad to acknowledge her was enormous! It was further acknowldgement that in life- there will always be people who try to knock you down. When you keep your calm and carry on, it will all work out and others notice. And then maybe a marine will make everyone stand at attention and give you award. Yeah that's kinda cool. 2 people can do a lot of damage in a community. So imagine how much good 2 can do. I am the very proud mama of one of those 2.

In the world of scoreless games and everyone wins trophies- they have become devalued. Normally I emphasize personal strength and that awards do not give you merit- you earn merit and the merit is a personal scorecard. I've caught Kiera reading her award once or twice- so I finally sat down and read it and realized that a simple piece of paper with a few carefully chosen words can once again can be valued- not for it's existence- but for what it stands for and what we stand for.

Commanding Officer, Headquarters Battalion, Marine Corps Base Hawaii takes pleasure in commending Kiera Mallory for  exceptional academic performance and student leadership during the 2012-2013 school year. Throughout the academic year, Kiera Mallory demonstrated a superior level of leadership, maturity, and academic contribution beyond that of her fellow students. Her outstanding work ethic and embodiment of our Marine Corps' core values has culminated in her selection as the 2013 Iroquois Point Elementary School's Marine Corps Honor, Courage, and Commitment Award recipient. Kiera Mallory's display of hard work and dedication to academics reflected great credit upon her and were in keeping with the highest traditions of Iroquois Point Elementary School's International Baccalaureate Attitudes and the United States Marine Corps' Core values of Honor, Courage, and Commitment.  Given this 21st Day of May.

Saturday, May 18, 2013

Good Grief

Grief is a really funny thing. It is malleable, fleeting, steadfast and lingering. It can blindside you. It can creep into your body and soul. Even the institutional professionals cannot agree on the precise qualifications of grief. Grief is a normal emotion. Any creature that can feel love as intensely as we humans do, should be able to feel the exact opposite to an equal or even greater degree.

In this day and age- there is a pill for everything. Are you too happy? A little happy is ok, a lot of happy is ok, but too much happy- we call that manic and it's not ok and there's a pill for that. Are you sad? A little sad is Ok, alot of sad is ok but if it lingers too long we call that depression and there's lots of pills for that.

In college- I took several psychology courses- one of my favorites was Abnormal Psychology. As a Science major- I knew full well how the scientific/medical community tended to look down their noses at the Psychological professions. How can we call anything science that is so nebulously unquantifiable, vast and ever changing as the human mind?  Yet any good, experienced scientist will testify- the best scientific advances usually happen from a chance error. In our course- we studied the DSM-4- the Bible of mental disorders,  quite thoroughly.  It was entertaining to try and diagnose all my quirky friends and relatives. Sometimes it was frightening. It offered me some clarity on a lot of issues. Although I had a couple years under my belt in college- I was still battling the grief of losing my dad the week before my high school graduation. It was a mere 3 years before that I lost my brother to the same disease. There were times when the grief was suffocating.

I find it strangely ironic that the release of the DSM-5 comes at a time of year when the grief feels fresh. Today is the 19th anniversary of my father's death. Next week will be the anniversary of my brother's death. If I stop to think about it, it takes my breath away. If I lingered too long- I might suffocate. There were several changes in the DSM-5 that guides how mental health professionals quantify grief and the precise point grief becomes something more akin to depression. The debate is hearty. Many definitions of grief include depression and all definitions of depression include grief. Anyone who has experienced loss can tell you the ebb and flow is neither regular nor set to any calendar. There is no egg timer that lets you know when your grieving period has expired. Culturally- certain practices are put in place that mold this period. As someone who's experienced grief on many levels- I have a profound appreciation for the faiths and cultures that have practices in place that lovingly guide the bereaved through the process.  Multitudes of scientific and psychological studies have quantified stages, phases and even types of grievers- all with the caveat- you may fit into one or many of these stages or phases at any given time- you may regress or spend only brief periods in any given phase. I can see how the science minded heads are reeling.

From the point of experience- I can tell you grief never, ever goes away completely. I could not tell you how I manage to function despite it. I know there have been periods in my life that I have also been depressed. Sometimes these periods overlap- sometimes they were mutually exclusive. There is most definitely a process and when talking to others whose experiences are similar- the kinship is silent validation that your grief is both acceptable and real. You know it's real- but after a certain time it usually feels as if those around you need for you to move on. I think half of the process is just learning how to relate to others in their own process of relating to your grief. There were times shortly after deaths of loved ones where I felt genuinely happy. Almost immediately upon realization of happiness- the guilt sets in- as one is clearly a bad mourner to be feeling such happiness. My relatives- being of good Irish decent quickly mend any antagonistic interpretation by the good old Irish Wake. Numbed by libations- all emotions are acceptable and appreciated- greatly accelerating the fluctuating and cyclical nature of healing. Sometimes we don't speak of the loved one often- not because they are not close to our hearts- but because those memories are the glue holding the cracked pieces of our hearts in place. We all deal differently. So much discord results from people judging others feeling based on their personal scale of truism. Not everyone needs to have a shrine to their loved on in their living room to remember them, they carry their memories everywhere. Some need that constant reminder as a way of acclimating the loss. Just as you don't feel every fiber of cotton in your tshirt hitting your skin- sometimes that shrine provides the numbness to acclimate the profound grief. It's about finding the process that works for you. You will not recognize it- there is no time limit on finding it- and if you need help in doing so- you should seek it.

 Sometimes I feel the energy of my dad or my brother. I know there are folks who can rationalize it as some sort of synaptic glitch. Perhaps that is all consciousness is after all is one big synaptic glitch- after  all so many of the best scientific leaps happen after some inborn error. Sometimes it is out of the blue- with no stress to provoke it. There are times where I feel the grief and it is intensified by the lack of signs. My dad always swore if he could come back and give us signs, he would.  My aunt keeps track of the signs. We sometimes question the intensity and validity of certain signs- but she is always the first person we call for sign approval. There is a part of us that wants to believe, needs to believe that there is more- that we all have a connection that is not severed by death. Many times this is what pulls us from the depths of despair. There are those who can never manage to climb out. You can put a label on it- categorize it in a book- but that only quantifies it outside of the person's experience- for each person's experience is physically real to them. Not everything can be fixed. Not all grief goes away.  Sometimes a gigantic tree pops us in the middle of your yard- you can chop it down or landscape around it.  It really isn't your neighbor's business unless you are asking him to help chop it down or allow it to branch over his yard. Grief affects everyone.

This time of year, the grief hangs over me like a familiar musty blanket. The anticipation of grief this time of year is more debilitating than the grief. Sometimes I dream about dad or Bob. I like to think it's their way of saying hi. I know they are just dreams. Sometimes I hear a song that immediately transports me to a grieving state.  Moreso lately I see them in my children. Lily's bubbly personality and size are a pintsize version of my dad. Lil Phillip has hands like Bob's and has the quiet, intense personality his uncle had. The year my brother died was my parent's 20th wedding anniversary. Dad made arrangements to take mom to Hawaii. Mom's grief had consumed her in a way no one but a mother who had lost a child could ever possibly begin to understand- dad was trying to help. Well they could not leave me to my own devices- an extra ticket was bought for me- talk about 3rd wheel. Fortunately I was just slightly older than lil Phillip is now- I didn't want to be around grown ups- so I made myself scarce. I remember them having Mai Tais near the beach in Waikiki while I walked along the beach seeing if I could make it to Diamondhead. We stayed at a hotel called the Waikiki Joy hotel. I remember it being a short walk from the beach and laying on the beach while dad got in a few business calls. That was dad- always finding creative ways to manage finances and his family. Years later when we moved here- I looked up the Waikiki Joy hotel. I knew it still existed- but it's not the kinda place you hear about. Heck after 15 years- it could have been the kind of establishment that rented rooms by the hour for all I knew.  I never did find it driving around.

Last week was a tough week with May Day drama and practices, combined with normal activity and then on top of it throw in talent show try outs. All 3 girls wanted to try out. Lily and Bella chose songs and spent evenings and shower time belting out tunes in various keys. I started stressing about the potential public reception of their unique talents and what it would mean for their egos. I tried to hold fast to my dad's advice to me when I was young- do it now while you can- you won't have the courage to when you get older- I hoped it would be the same for them. I made peace with it.

  Kiera and I woke up really early to glue back every short strand of hair and get ready for May Day- we hopped in the car and I was finally calm. Everything was going to be fine- and if it wasn't- it would be one helluva funny story later. We are halfway there when an ad comes on the radio. I never have to hear ads- I have trained the kids to find a song when they come on. Yet Kiera sat pensively next to  me. The announcer is inviting folks down to the Waikiki Joy hotel for Karaoke tonight. Like that, the musty blanket of saddness decended. I asked Kiera if she had ever heard of that hotel. She said no and looked at me with concern. I didn't want her to go into May Day thinking I was sad about her- so I explained what was going through my mind and ultimately told her I thought it was dad's way of patting me on the back and going with the fake it til you make it attitude. In 8 years- I've never heard anything of the Waikiki Joy here. Later I asked Phil if he'd ever heard of it and 2 moms at May Day- no one heard of it. SO whether it was a crazy coincidence or a sign- it was the emotional release I needed to face these anniversaries head on. It's not always easy- sometimes grief is hugely inconvenient. Sometimes it is a reminder of all we've lost but also how far we've come. It becomes a part of us and is a part of what we become- so to it I do owe a certain amount of gratitude. And to that part of it I say, Good Grief.

Thursday, May 16, 2013

TATAs on Notice? I'm so Ovary it.

The world is abuzz with Angelina Jolie's choice to have prophylactic surgery. To be honest my first thought was-Big Deal- in Hollywood- that kind of surgery is done over the weekend. Boobs are a dime a dozen- so are surgeries. I appreciate Angelina's "humanitarian" efforts to raise awareness of a very real issue. She opened herself up to a lot of scrutiny and judgement- but she has always been in the public eye- that is not new. Folks have been judging her since she was a child on various aspects of her physical form and decision making prowess. No one can know for sure why she went public- perhaps it was to raise awareness, perhaps it was to stave off speculative plastic surgery rumors and perhaps she just needed the support from her community. To be blatantly honest with myself- I am a bit envious. It's has been almost a year exactly to when I had my first mastectomy. Not everyone knows about it. I'm a publicly private kinda person. I am still a little unbalanced and I am not referring to my mental state. Over the past year- I have thought about removing the other breast, many many many times. Had I taken more time initially to ponder it- looking back- I might have gone for the 2 for 1 deal. I always said at the first sign of trouble- they were gone. But life chugs along with four kids- 2 of whom have serious medical conditions that require full time monitoring. I don't have a chef or a nanny or the other "support" to make these decisions easier. I am not downplaying any of the emotional stress that accompanies a major decision like this- I'm just saying the real world applications are a different ball game.

BRCA is serious. It is a huge increased risk of breast and ovarian cancers. That mutation has monumentally shaped the breast cancer game on so many levels. Ovarian cancer is a silent killer and so difficult to detect. Yet both of these organs can be removed. BRCA is very well understood- as is breast cancer- yet the treatments are still toxic and aggressive. It is one of MANY genetic mutations that predisposes women AND men to breast cancer. Cowden Syndrome, Peutz-Jeghers, Familial diffuse type gastric cancer and Li Fraumeni Syndrome to name a few.  Certain Li Fraumeni Syndrome mutations(because although BRCA has 2- as of a 2003 published paper- Li Fraumeni Syndrome has over 250 known germline mutations.) A friend of mine says LFS is like BRCA on crack. I say it is the mother of all hereditary cancer syndromes.

Mostly it's just hard. It's hard not knowing which body part is going to go bad. For starters- the "Main" LFS cancers are brain, breast, sarcoma and adrenal. I know for sure if you remove a certain one of those prophylactically- you will have an explanation for most of what goes on in politics. The spectrum of cancers a LFS mutant can achieve is not limited or excluded to these- these are the ones that are well documented in certain families. These are the types of tumors that make docs wonder if a person has a family cancer syndrome. The mutation makes our cells unable to suppress tumors and in some instances- that broken mutation actually makes cancer cells angrier.  One study boldly states that women with a certain LFS mutation have 100% chance of developing cancer by age 85(men have a 73% chance risk). The overall risk of women with LFS developing cancer by age  40 is 50% and both these percentages are so high because of the breast cancer incidence. Those of us with LFS know more young ladies in the 20-25 range who have battled the disease than we'd like. Ask them how they feel about prophylactic surgery. I feel fortunate that I was in my 30's, married to an amazing man who loves me as much as a uniboober as he did before(- probably more )and that I had the opportunity to have and breast feed my children.  I know women who faced breast cancer in their early 20's- the physical and emotional scars are debilitating. The long term effects are painful. In a society where so much hinges on physical beauty - can you imagine embarking on the dating scene with a roadmap of scars for a chest and a genetic condition that all but guarantees you will be further damaged by 40 and really flipping grateful to be alive after 60? Most young women worry about pregnancy and disease- young LFS women are no different- they worry that the life saving treatment they need will render them unable to ever get pregnant and the diseases they worry about have poor prognoses and are not easily treated with antibiotics.

It makes me furious that so many of these families like mine have faced multitudes of cancers FOR GENERATIONS. Mothers have lost children and husbands within months. Husbands have lost parents, siblings and children. I am deeply saddened in the lack of progress in battling this disease because it means the challenges will continue. Entire families demolished by cancer, And yet somehow we persist. Natural Selection is not survival in the fittest meaning the healthiest- it is the survival of those most capable of adapting. LFS mutants are the most capable folks you will ever meet. I think the same can be said for any family who faces hereditary syndromes. We face them head on and do what it takes to survive. Armed with the knowledge that life is not permanent and neither is health- we accept living with vigor. Rainbows are brighter, calm is appreciated, even storms are valued for what they bring. So I appreciate Angelina's choice and hope that this public declaration and awareness makes a very tough decision easier for someone out there. I call on others to be supportive of others decisions- they are most likely hard-won. You do not have to agree with the person or their decision- but know there is ALWAYS more than you see on the surface. Some decisions are life and death and necessary in the moment- some decisions have a greater element of choice and repercussions. All of it is a very careful balancing act of risk and quality of life that can only be determined by the person who faces it. When you have lived life watching those you love die- removal of an expendable body part or two- is not the hardest decision you ever have to face and most do it without a world of support or criticism. When faced with a syndrome that so many cancers have few or no treatment options- being able to proactively fend off the disease seems like a benefit. I do not mean to negate the momentousness of this process- but like Angelina's financial status and ability to procure the best healthcare- everything is relative. Some women would remove parts in an instant in an effort to be there for their children but have to face Institutional Review Boards and Insurance companies who ultimately hold the physical and financial possibilities of this control in their hands. Not only do you have to make the tough decision- you then publicly have to go round and round as to whether or not the medical community supports your decision.

I am over celebrities getting special badges of bravery and mountains of support for facing these diseases. Everyone should be so lucky to have this support.  For every Angelina- there are hundreds of women out there who have gone through this. None of them did it for the publicity.  I applaud those who use their celebrity and wealth to further research, quality of life and treatment for these diseases. I hope this is where she is headed with her publicity.  Many of us fight day in and day out for these causes as well as raise our own children, cook our own meals, do our laundry and drive ourselves to and from treatment. Many can not pursue dreams or careers because of the disease and the need to care for multiple family members fighting cancer or another debilitating syndrome.   That or we have really awesome neighbors who have yet to get sick of us and move to a different continent. As for my remaining tata- I think about it in the wee hours of the morning- the only minutes I get that are not dedicated to other necessary deeds. I think about the long laundry list of scans I should be undertaking to "proactively" screen for the myriad of cancers that could be growing in my body and I feel the weight of a hereditary cancer syndrome. I start to feel really down and sad. Then I realize- non of us would be where we are without the battles we face. There is a grand design- and we aren't meant to know it- part of the journey is figuring it out. Part of the journey is meeting these wonderful mutants along the way who are so delightfully snarky and different that it makes me proud to be one. It's knowing an amazing group of women who make me want to be better and do more and embrace and seize the positive when we can't control the negative. It's finding where you fit and understanding in a world of controversy. Ultimately it's about taking it a day at a time and knowing where you are and what you need to survive- and that connects us back to the rest of the world who are facing the same issue.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)