Where to go from here

It has taken some time to answer the question posed to me this last week by a reporter: “So what is next for you?”

I have a wish list of course including:

Seeing Dani off to college in a year, watching Katie swim on a district or state team for Timberline and support her in the classroom, watching David succeed in class and on the golf course and maybe the football field again.  There are some of the mundane ones too such as keeping the garage clean, staying healthy with no MS flares, plant flowers in the spring.  However, I realize that is not the list the reporter wanted to hear.

Going beyond myself the answer is not of where “I” go but where “we” go from here.  First and foremost, DOMA (Defense of Marriage Act) needs repealing.  The patch work of state rights will not work.  It doesn’t work.  It will never work.  As a community, the LGBTQ community along with our Allies we must demand that all Americans are Equally treated in ALL areas of life.  Including Life, Liberty and the pursuit of Happiness.  Simply put EDNA needs to happen – non discrimination in employment – regardless of gender expression or sexual orientation needs must be the same as those with disabilities or based on race, age or creed.  How can Massachusetts be the leader in marriage equality yet it is still legal to fire a transgendered individual from their job.  Does anyone else see the absurdity in all of this?

On October 20th, I received the Presidential Citizens Medal – not the Presidential Second Class Citizens Medal.  I deserve and am entitled to all the same rights as the person who was born heterosexual.  I met so many individuals at the Capitol and the White House who came up to me and quietly said “thank you for standing up”.  Some of those individuals were in uniform and even with the end of DADT, they had to whisper ”thank you”.  I can confidentially say even the most conservative American will say to my face that forcing Lisa to die completely alone while the kids and I were locked out for EIGHT hours was unconscionable.  I rarely discuss how after those long eight hours the kids and I gained access.  It only happened because Lisa’s sister arrived from what must have been the worst eight-hour drive in her life from Jacksonville.  When her sister arrived, I presented her to the woman who denied us access for 8 hours and without showing ID and my just announcing “this is Lisa’s sister”, she informed us,  an hour earlier Lisa moved  to a Neuro-ICU room.  The time was close to midnight.  The kids, Lisa and I arrived at Jackson Memorial at 3:33pm.  Her family asked to not be involved once I began speaking out.  Even refusing to speak to Lambda Legal, I accepted I was on my own.  I forged ahead, without their support, because I found support from straight allies, my family (my father died just months before Lisa and my mother just month after), major LGBT organizations including Lambda Legal, GLAAD, HRC and Family Equality Council, and my small circle of friends who knew Lisa and me as a couple.

I know other gay activist do not feel I have been in the fight long enough or done enough to change the landscape of equal rights.  I am cognizant of the undercurrents, I see the comments online and hear the whispers.  All I can say is that I am content in returning this medal along with the other awards I received in exchange for those eight hours stolen from me be Jackson Memorial Hospital, Garnett Frederick (social worker), and the desk clerk.  I close my eyes often and think about what I would say to Lisa while she could still hear me in those eight hours.  I would tell her how much I loved her, never regretted a moment of our 18 years together and that I was the luckiest woman in the world to have her in my life.  So to all the others fighting for marriage and full equality in our community, I feel the burden of receiving this medal.

The weight of that burden however does not change the promises I made to myself in April 2007, just 2 months after Lisa’s death, the first time I told our family’s story.  I will never compromise our story to water it down nor make it more salacious.  I would never allow a microphone be stuck in any of the children’s faces to answer the question of how hard it is to lose a parent.  I would not receive money for any of my speeches so that whoever I am speaking for could not change my message to meet their needs.  So far, I have honored those promises and hope I can continue to do so.

Additionally, I feel the weight of this acknowledgement as I work with HRC, GLAAD,  or Lambda Legal since those who don’t know me feel I am in “their pockets”.  However, nothing could be further from the truth.  I choose to continue a working relationship because each of these organizations because they respect my limits and my terms of involvement.  HRC and the foundation which produces the Healthcare Equality Index has grown exponentially since 2007 as more Hospitals want positive ratings about respecting the rights of our community when we are patients.  Even Jackson Memorial Hospital realized the damage to their image and those they serve by neglecting the LGBT in their patients’ Bill of Rights.  Lambda Legal easily pointed that out in the lawsuit they filed on my behalf.  Now Jackson Memorial Hospital is a highly rated hospital on all dimensions for patients and employees.

Meeting with Assistant Secretary Kathie Greenlee at HHS this week, helped me understand the far-reaching effects Lisa’s legacy had on the healthcare in our country.  A misconception from the ill-informed, who believe that Obama’s memorandum on 4/15/10 can just be “reversed by a Republican administration”, are plain wrong.  Simply put and hopefully the last time I need to explain the difference in this memorandum or other Executive order, President Obama ordered HHS to change the Conditions of Participation (COP’s) for Hospitals to receive Medicare and Medicaid funding.  This rule change went into effect 1/18/11 and then in August 2011 HHS gave hospitals a simple “to do/do not do” list of how to make sure they respect the rights of ALL patients.  If a opposite-sex patient and visitor is not asked to show a marriage license, POA or other legal documents the same standard applies to same-sex couples and children with same-sex parents.  I guess the only more obvious question is “why wasn’t this already in the regulations?”  While in my meeting with HHS, Secretary Sebelius stopped by to say hello and thank me for bringing our situation to the national conscious.  Again the thanks goes to Secretary Sebelius and all the CMS staff who worked on this rule change.  In 2007, when Lambda Legal asked me what I wanted from taking legal action against Jackson Memorial Hospital, I said I wanted to make sure no one dies alone just because they are gay.  I have expanded that since my first response and now say “I don’t want any family kept apart at the moment of death, regardless of how they define themselves”.  I still in my heart believe holding Lisa’s hand during her last moments of life was not a GAY right but a HUMAN right.

Beyond equality and fighting for hospital visitation rights, the quieter story that gets much less media attention is Lisa’s lasting gift of organ donation.  Losing Lisa and the failure I still feel for not being by her side is tempered with the easiest (if there is an easy part) of losing her by donating her organs.  Lisa was very vocal that her body was just a vessel for her soul.  She made me promise time and time again, especially when either of us had a death in our families, that I was to donate her body to science.  What Lisa didn’t know when I promised this to her again after my father’s memorial in June 2006, that I would be tested just 8 months later.  Lisa and I always figured we would be older woman sitting on the porch watching our grandchildren with her drinking tea and me with a diet Pepsi.  She figured she would be unable to donate organs due to advanced age so she hoped to just help medical students.  However, losing Lisa at just 39, meant she could save many lives with organ donation.  As soon as the surgeons told me 2 hours after her admission her aneurysm was not survivable, I literally blurted out “can she be an organ donor?”.  Observers may have thought it was rash and a quick response but it came from the years of her telling me what to do if I was ever found myself in this exact situation.  I confidentially signed the organ donation forms and Lisa saved 4 lives and countless contribution to medical research on her other organs.

On 1/2/12, Lisa’s organ donation, are apart of the Tournament of Roses Parade in Pasadena when her flora-graph is on the Donate Life float.  I have the honor of representing the Langbehn-Pond Family in riding the float while the kids and the keeper of Lisa’s heart, Jerry are in the grandstands.  The lives Lisa saved through organ donation didn’t ask if Lisa was gay before accepting her organs.  Her organs were ideal matches with her O positive blood type along with her youth.  Lisa was not a second class citizen in organ donation and should not have been in life.

So where I go from here,is simple, I raise our children and celebrate their successes, I continue to honor Lisa and her legacy of full equality for all individuals and promote organ donation.  That may not seem like a lot, but it’s a plateful for me.  Lisa’s shoes are not easy to fill.  Lisa is missed and loved everyday in our house.

Peace

Here is the video of the ceremony