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Wednesday, May 6, 2015

Fight The Wolf

Written by guest author Valerie Greene with Goodshop.com

May is a month to celebrate life and howl in the face of lupus. The disease affects millions and now is the time to rally together to take a stand against the wolf. Lupus awareness and research nonprofits are making incredible strides to find a cure, but they, like everyone else, need all the support they can get- it get’s slippery! Apparently, research shows that Americans know little or nothing about lupus. We need to change that! There are many ways you can support lupus awareness during May, but here are some really fun ways to make an impact.

Move, dance, and beat the street! The Lupus Foundation of America hosts walks all over the country. Find a walk near you by searching your local lupus chapter and join the movement! If you can’t attend a walk, support someone who is or join the Alliance for Lupus Research’s virtual walk.

POP! Put on purple on May 15th and do what we all do best- take a selfie.  This great tumblr sponsored by The Lupus Foundation of America is a fun way to tell people why you’re looking great in purple to support lupus awareness. And don’t limit yourself. Lavender, violet, lilac, magenta- wear every shade with pride!

Remember Lucy floating around the sky with diamonds? Well, apparently she was a real person, who sadly died of lupus. One of the most famous Lucy’s in history was slain by the wolf. How does everyone not know this? John Lennon’s son, Julian, is trying to change that. He’s the Lupus Foundation of America’s Global Ambassador and was a dear friend of Lucy’s. May 10th is World Lupus Day and Julian wants us to take a pledge to educate others and raise awareness.

Lastly, you can shop for a cure! Literally, anywhere online. Goodshop.com has donated thousands of dollars to lupus research because people like you have shopped through their website at stores like Pottery Barn, Hotels.com, FTD. Signup and select one of their 24 lupus research foundations, like The Lupus Foundation of America or The Alliance for Lupus Research and they’ll donate up to 20% of any purchase you make online to help find a cure for lupus.

Monday, May 4, 2015

Coming Clean: An Homage to Lupus Awareness Month

This blog started when I was diagnosed with cancer in 2007, in an effort to share my story and to help me find the humor in a not so funny situation, because that is one thing I refused to let cancer take from me... my ability to laugh and to make others laugh.  That is one of my most favorite things in life.  I promised to focus on other "slippery" moments of my life.  Nothing would be off limits if it could be helpful in some way, even if just to entertain for a second.  I did not fulfill that promise when lupus came along.  Lupus is not cancer, but it is a lot like it in many ways.  It is a disease that kills people - not all, but some - too many. It is a disease that steals things from people.  It is a real motherfucker.  Those are just a few things they have in common.  However, lupus is different in that it is the most unrecognized, most misunderstood, misdiagnosed and ignored of all the major diseases.  It is taboo, confusing and the least funded - again, of the major diseases.  The ones that affect millions.  There is no cure, which is the case for some cancers.  There are limited treatments to even just help with symptoms and they are all jacked - steroids, anti-malarials, chemotherapy.  No one can give you a percentage of cure rate or a timeline or a best/worse case scenario, since none of those really exist.  Every person is different and it can be different in an individual from day to day.  I am glad that no one could put some time stamp on my life, since I don't believe in that, but it gets tiring when even the specialists say "we just never know."  Sometimes, I compare it to living in the Hunger Games or The Running Man (for those born a little earlier than 2000).

As I was researching and reading posts surrounding Lupus Awareness Month, I veered off course and came across an article entitled 10 Things You Should Never Tell Your Boss.  Number 2 on this list was Health.  As an actor, writer and nonprofit consultant, I am in a perpetual state of the hunt for work - even when I am working, I have to keep moving and building my network.  My acting life depends on me looking a certain way, as much as it does my talent, and if I am being honest - probably more so.  My writing life requires me to be clear-headed and good with words.  As a consultant, I am relied upon to be sharp and at the top of my game with regards to my knowledge for the business.  I am hired for my expertise.  The expertise that I have built up, tirelessly, over 20 years.  Recently, I started to consider opportunities for more permanent, full-time positions after being approached by a few old clients and deciding that it might be a good time.  That requires interviews and for me, interviews are about transparency.  I would never hide the fact that I am a parent.  I am proud of my child.  She is my world.  I do not think one has anything to do with the other - work and parenting.  I have done both, seamlessly, for 11 years.  So reading this article, I was reminded of why I have hidden my illness from the world - for the most part.  The nature of what I do requires me to be on social media sharing, connecting, interacting.  I know what I share is out there for people to see and in many ways, I am my brand.  I started to wonder if the little I did share about my health was keeping me from certain jobs or out of certain audition rooms.  I was right to stop talking about the trying times in my personal life, wasn't I?  But wait, isn't that something that makes me ME?

Since cancer, I have been out performing myself, probably because of and not in spite of illness.  Lupus has challenged me to work even harder.  I have been on 12 hour day shoots in not so comfortable conditions, produced shows, raised millions of dollars for many amazing organizations, travelled, presented, designed and implemented major events, interviewed, taught, been a full-time, hands-on parent, managed a home and pets and life - all through lupus AND cancer without anyone really noticing.  Some days are harder than they had ever been, but I have learned to function through it.  I have some tricks, but mostly, I sacrifice other things in my life to accommodate like weeknights out drinking with friends or over-indulging in anything, really.  I learned how to cope and finagle and plan and HIDE.  I have watched with pride as others share their stories.  My dear friends struggling with debilitating illnesses like cancer, MS, lupus and others - and sharing their lives with the world, in the hopes that it might reach someone who needs support from someone who gets it.  I struggled to write, because I felt like a fraud.  I got angry at celebrities who were diagnosed with lupus and brushed it off like they just went to an exhaustion retreat or tried to call it anything but what it is even though I know first-hand why they are doing that.  They had a platform to stand on to shout it from the rooftops and get people to listen, but instead they were laughing it off.  I was doing the same on the outside, but inside I am bracing myself every day.

This article made me angry for many of the 10 reasons listed (i.e. On the very first page they talk about being a parent holding you back and number 5 is sexual orientation).  I don't believe anyone should have to hide who they are.  I, personally, mistrust anyone that does.  People who have something to hide, hide shit.  That is a motto I live by.  Then, I realized that as much as this article sucks, it is so true.  I know that although companies are not supposed to discriminate on the grounds of race, disability, religion, political views, sexual orientation, being a parent, illness, etc.  They do.  All the time.  They, of course, use other excuses, but you know when you screwed yourself by talking, lovingly, about your child even though you would never and have never missed a beat as a working mother.  I was passed over for a promotion once for that very reason, despite my outstanding performance record and extensive experience and that I was an internal employee.  I know this, because the person came right out and said it to my face. I am sure I have been passed over many times without knowing it for that or other reasons that I fully-disclosed, but this time was particularly shocking, because it came from a person with children.  So, when lupus came along, I stopped talking.  I could not afford to be discounted and I would not allow it to take away what I have worked so hard to build.  I was afraid of what lupus would make people think of me, even though I have proven myself time and time again.  I come with a rock-solid resume, references and a bad-ass work ethic.  I was afraid.  Fear makes you make terrible choices.

I have waited for Lupus Awareness Month and decided that this would be the time for me to "come clean."  If there are people that will choose to discount me or presume my capabilities or lack thereof or pass me over out of their own insecurities or ignorance than those are people I would want to work with anyway.  If they are personal folks, then they are people that I should get to know a little better - we should all come clean - so I can do a good sweep of people that are not meant to be in my life.  Mostly, I needed to return to being true to myself and the thing that is and has always been my purpose - to try to make a little difference in this world, attempt to make a little change and to connect with people.  It can't stop with lupus.

"If we are brave enough, often enough, we will fall."  

Getting back up, brushing ourselves off and being braver than before - how we do that - is what will propel us forward, help us make a difference and build a life fulfilled.