Ana & Isa’s Blog
Tuesday, 02 September 2014
9-2-14 Back Again
Posted by Isa
I’m so grateful that you have chosen to read this blog– after a long hiatus. It has been nine months since I’ve written, and I don’t know where the time has gone. In a nutshell, I went to a Spanish immersion trip for social workers in Costa Rica in January; I celebrated ten years post-lung transplant in February– a true miracle in itself; I visited my husband Andrew in Washington DC in late March (with my parents), April (for the White House Easter Egg Roll!), June and August; lost one of my closest friends Nahara in April, had a few resulting health issues this springtime, changed jobs, gave the toughest talk of my life () in May, had my dear friend Joi Spencer stay with me for 2 months; send off my dad on the Pacific Crest Trail in June, where he hiked 900 miles from Ashland to the Canadian border in 2 months); I trained and participated in the Transplant Games of America in Houston in July where I received Female Athlete of the Year; I attended the Cystic Fibrosis Research, Inc. Annual Teen and Young Adult Retreat and Conference (where I gave a talk on resilience); and finally, have travelled to Banff National Park with my dear friend Sally. Needless to say, this has been a full and exhausting year. Thank the good Lord, I am breathing fine and feeling excellent, as long as I stay balanced (what?!?!?!). It is a sheer miracle I’ve been able to keep up this pace. I feel so fortunate! The fall promises more activity, including traveling to Houston to speak for the 15th Annual Chronic Illness and Disability Transitions Conference, to Nashville to speak at my friend’s congregation on Yom Kippur, and a November visit to Minneapolis to speak to donor families. I love my job as a bereavement counselor, working at the hospice with the providers who treated Ana, and most of all I continue to offer writing through loss groups to grievers. I am doing exactly what I’m meant to be doing. In a nice three days a week.
Most of all, though, I’m proud that I’ve survived. I’ve kept on living, I’ve fully experienced, tuned into, and pushed through the most difficult emotions of my life, but I’m still here. It might seem like I’m on speed or at least some form of medication to live this insane lifestyle, but I’m not. I don’t appreciate people who stay busy just to escape their grief. I don’t mean to look like one of them. I am however, a believer in staying focused on life, engaging with the world and people around me, and amidst all of this activity, I AM grieving. I’m alive.
What has helped me grieve the most, besides my friends, is what I wrote about in the following essay. May you enjoy it.
Thank you, to all of you, who have helped me along the way in these past 12 months. I am deeply grateful because YOU have kept me going. Til the next post,
For people who die, their death marks the end of their existence. Yet most people are remembered by their loved ones, through a memorial service, through stories told by loved ones, or through other rituals that connect us to our dead. There are others who have lived such an exemplary life that centuries later, writers are still researching and publishing biographies about these remarkable people, dissecting their stories from other biographies, newspaper clippings and historical data. When this happens, it’s almost like the person is brought back to life; that each of us has a chance to get to know them one more time. Then there are just ordinary people who leave the planet, yet survivors go through significant lengths to remember them. My sister Ana is one such person. She died almost one year ago, and yet, she continues to be so present in absence, so that each time she is mentioned or honored, I feel like she is still here, visiting me. First, there was the media coverage following Ana’s death. The touching tributes overwhelmed me—from the lengthy SF Chronicle obituary, to articles in the Stanford Medical Center Report, the Packard News, the CFRI (Cystic Fibrosis Research, Inc.) newsletter, and the local and national TRIO (Transplant Recipient International Organization) newsletters, among others. In addition, I chose to find meaning in Ana’s immense suffering, by filling a need in CF-related GI cancer research. With my initiation and our entire family’s effort, and hundreds of generous donations made by friends all over the world, we created the UCSF Anabel Stenzel Memorial CF Oncology Fund and raised over $75,000 to fund a research project that might help other CF patients be spared of the suffering Ana went through. The principal investigator has already spoken at our CFRI conference. Finally, since Ana’s death, numerous awards have been created in her name. I am simply blown away by the acknowledgement and appreciation that Ana’s circle had for her. Her genetic counseling colleagues at Lucile Packard Children’s Hospital have used her donation to fund the “Anabel Stenzel Memorial Staff Retreat” as well as a travel scholarship fund. Her favorite charity, Cystic Fibrosis Research, Inc., for whom she served on the Board, created an “Anabel Stenzel Partners in Living Award” to recognize a stellar volunteer with cystic fibrosis who served the community with the same passion, dedication and long-term commitment that Ana did. Our mutual friend, a retired MD with CF named Julie Desch, was selected as the first honoree. Then, there’s more. At the national Transplant Games of America, CEO Bill Ryan chose to honor Ana on all of the medals at the 2014 Games. Of all the dozens of people nationwide who died since the last Transplant Games, he took a liking to Ana’s devotion and passion for the Transplant Games. He had an artist carefully design Ana’s likeness for the gold, silver and bronze medals. Each athlete who stood up on the podium after doing their very best on the field, in the pool, or on the court, then could remember the spirit of Ana. Bill Ryan also had a 4 minute video created which included shots of Ana from past games, and interviews with her closest teammates. Also, the California Transplant Donor Network has created a professional award named after Ana for health care providers who demonstrate significant commitment to raising awareness of eye, tissue and organ donation. The list just keeps growing. This month, I learned that Ana’s cornea were indeed transplanted into two individuals living in Maryland. I knew Ana wanted to donate her organs and tissues, but due to her metastatic cancer, she was only able to donate her cornea. Then, on top of all, the greatest news came to me this past week. Now, Tissue Bank International, the national agency that coordinates tissue and eye donation and transplantation, has chosen to honor Ana by sponsoring the creation of a floragraph, or a photo image made of flowers, seeds and plants, to be displayed on the Donate Life Rose Parade float which will premier on January 1st , 2015 in Pasadena. Ironically, the design is an open book with a stream of butterflies (Ana LOVED butterflies) coming out of it, entitled, “The Never-ending Story.” Ana will finally ride the float like I did back in 2008. She will introduce the new year, in a new and special way. Ana would be deeply humbled, and say, “I feel bad to get all this attention.” But also deep inside, Ana would be proud of her ongoing achievements. She was, always, a high achiever, even in death.
Do I still miss Ana every waking moment? Sure I do. Do these numerous ways of honoring Ana help my grief? Sure they do. These means of recognition are not for the person who has died, but rather, for the ones who are still here. So many people loved and admired Ana so deeply, that they need to express their sentiments in a public way. They join me in my grief, and I know I’m not alone in feeling the emptiness her departure left me with. I feel now more than ever what was truly lost.
All of us yearn to live a life well-lived. And, wouldn’t it be extraordinary, if we could all be like Ana, and have a death well-lived?
- Thursday, 19 December 2013 12-18-13 Words for Ana Posted by Isa Dear friends, Thank you so much for your loyal support to read this blog. I can no longer harass Ana to write; I no longer need to monitor whose turn it is to post. It’s up...
- Monday, 04 November 2013 October 26, 2013: In Remembrance Posted by Isa Dear Power Of Two supporters: Thank you for your ongoing interest in The Power Of Two. For many years, Ana and I have tried to be beacons of hope for those living with illness and transplantation....
- Friday, 19 July 2013 July Update 2013: Long time no write, but lots going on Posted by Isa Dear friends and supporters, It has been half a year since we’ve updated our blog. Where has 2013 gone!?! If you’ve been checking this blog, well, gosh, thanks for being a loyal friend and fan. Life...
- Tuesday, 05 February 2013 2-5-13: Rose Bowl, a Puppy, the Inauguration, Starting/Ending Jobs, a “transplant sister” and Katie Couric!! Posted by Isa Dear Friends, Wow, 2013 is unfolding rapidly and it’s already February! Typical of twins, Ana and I have a tendency to bicker about this blog, barking orders like, “It’s your turn to write!” This incites the...
- Tuesday, 13 November 2012 I have a Dream – Tales & Food Indulgences from Atlanta Posted by Ana I HAVE A DREAM- Tales & Food Indulgences from Atlanta I had a dream … that one day my CF friends and I could travel together, without the worries of CF or cross infection. I had...