Tomorrow Isn’t Promised

“Sadly people always believe they will have time later; trauma taught my family tomorrow isn’t promised.”  Alisa Hughley 2012

At 16, Carey Hughley excitedly showed his little sister, Alisa, 12, his brand new driver’s license.  He proudly explained all the information on the license, including the big heart.  “You’re an organ donor?” she asked.  “Yeah…I’m not gonna need ‘em when I’m dead,” he said. That answer stayed with her.

At Jordan High School, in Durham, North Carolina , Carey was an athlete, swimming on the team that set the state record in the 200-meter freestyle relay.  He was also an artist, musician, song writer and poet.

In 1997 Carey attended J. Sergeant Reynolds Community College in Richmond, Virginia and  planned to transfer to another school and study music.

At age 21, his life was cut short when he was shot at point blank range by a fellow student, someone with undiagnosed paranoid schizophrenia.  He arrived at the hospital and pronounced brain-dead.

In the hospital, his family faced a difficult decision.  Alisa remembered  her brother’s wish.

Today Alisa Hughley is a health communication specialist.  Her journey into health advocacy started with telling the “world about the lives Carey saved.”

At the Hughley’s church in Durham, a woman had shared her story of dialysis and being placed on the UNOS waiting list for kidneys.  At Carey’s aunt’s church in Virginia another woman was near death and on a waiting list.  The family directed Carey’s kidneys to each of them.  Amazingly the  kidneys were a match for both women.  The family later learned that Carey’s liver had gone to a  47 year old father of three and one of Carey’s lungs went to a woman who was able to go back to work.

There are 25,000 organ tranplants a year in the US, but every day, 16 people on transplant waiting lists die. According to the US Department of Health and Human Services Office of Minority Health, the rates of diabetes and high blood pressure, two conditions that put peoples organs at risk of failure, are higher among African Americans.  African Americans  make up 29% of the total candidates currently waiting for transplants yet they comprised 14 percent of organ donors.

Alisa ‘s advocacy focuses on increasing deceased donations among the general public but also among minorities.  “Members of the minority communities, both blacks and latinos, are particularly resistant to donation; certainly above a certain age.  Minorities don’t realize how many other minorities are in need of organ transplants. I really try to explain how they already know someone on dialysis in kidney failure.”

One of the ways Alisa advocates is by explaining how a person can come to need a transplant.   “Hypertension and diabetes can lead to kidney failure…causing a need for dialysis and finally the need for a transplant.”

There are many misconceptions around organ donation, most born of a distrust of the healthcare system.    “Many minorities believe their organs will go to Dick Cheney.”  She works to dispel myths like organ donors can be denied a funeral or that if organ donation is indicated on a  driver’s license medical professionals will be less likely to save the individual in emergency situations.

End of life planning is a difficult topic to discuss.  But as a health activist, Alisa believes that it is possible to move people to action by getting them to feel.   “Art creates emotion which motivates action.  Poetry, or a skillfully told story, can be art.   I try to elevate my family’s story to art.”

Elevating end of life planning to be a part of everyday discussion is a challenge.  She believes that when Carey shared his decision to be an organ donor, he  took the first step in his end of life planning.   “Sadly people always believe they will have time later; trauma taught my family that tomorrow isn’t promised.”

Alisa definitely feels Carey lives on through organ donation.  But she felt she needed to do more.  “Homicide robs victims of their identity.  They are obscured by the media‘s  focus on the murderer.”

Throughout high school and college Carey wrote poetry in notebooks that he saved.    In the hospital where Carey died, Alisa promised her mother that she would publish her brother’s poetry.  Grief and life interrupted her quest, but over the course of 12 years  Alisa pulled together Carey’s notebooks, his photographs and remembrances to create the book III Gifts.  

His voice was silenced before he could share it.  I became his voice.    III Gifts gives Carey his identity  back.”


Exquisite writing by another taking the health advocate’s challenge!

considering the lilies

Day Three of my Health Activist Writers Monthly Challenge, and I’m thrilled to be taking part in it with my blogging buddies Marie Ennis O’Connor and Jan Hasak, two compelling writers who are truly inspired and inspiring in all they do.

Day 3: If you had a superpower, what would it be and how would you use it?

I remember the first time I heard about communing with the dead.  I was about 9 years old, and some children at school were talking about how they had received messages from “the other side” via a ouija board. I was both fascinated and frightened by the prospect of them sitting around it in the dark, their fingertips on a glass, nervously waiting for ghosts to spell out the answers to their questions. Superstitious and gullible, I may well have believed that indeed it was the spirits moving the glass…

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Beginnings and Endings

“Often when you think you’re at the end of something, you’re at the beginning of something else.  I’ve felt that many times.  My hope for all of us is that “the miles we go before we sleep” will be filled with all the feelings that come from deep caring-delight, sadness, joy, wisdom-and that in all the endings of our life, we will be able to see the new beginnings.” Fred Rogers

I know it is hard to believe that a grown woman would feel so connected to “Mr. Rogers’ Neighborhood.”  Actually I wasn’t all that big a fan of it as I was growing up.  But I found its calm and quiet atmosphere a welcome relief from the programs that my boy and I could have watched together when he was little.

Today I turn to Mr. Rogers again.  April Fool’s Day 2012 was a day of lemons for my family.  Today I make lemonade by looking at this quote.

My dear uncle died yesterday after almost two years of the debilitation that Alzheimer’s Disease can bring.   He was a wonderful, intelligent and a very funny man.  He was also an over 25 year survivor of a cancer that had metastasized to his pelvic bone and lymph nodes.

My dad, a urologist, found the cancer and enlisted an expert in the Chicago area for his care.  But I know it was my uncle’s indomitable life force which made him the longest survivor of the clinical trial that saved him.  I think he was a little angry at his sister, my mother, for dying of breast cancer, for giving up.

In the end, when he realized that he was losing his mental faculties, he created notebooks to guide my cousin and aunt through the process of losing him…he had all the paperwork they needed in one place…long term care insurance, bill payment, his wishes for end of life care…laid out in these notebooks.  He gave them a great gift and made lemonade from lemons.

He and my mother grew up with a lemon tree in their backyard in Puerto Rico.  When I saw that tree as a child, it was ancient, filled with fruit and the sweet song of the Reina Mora.  Its fruit made the best lemonade I have ever had or ever will have.

So today, I savor the memory of that lemonade as I remember a very special person.  And I wonder at the new beginnings  that this ending may bring…

Does it have to be this way?

My dear dear uncle is at this very minute suffering from bed sores.

Bed sores or pressure sores are horrible.  The skin completely disintegrates…losing layers of skin, exposing tissue under the skin. They are ulcers that are extremely painful and that can be very large.  They occur on skin that has had pressure on it for some time–skin of the buttocks, back and heels are common.  It happens to people who are extremely ill, who cannot turn themselves and must rely on caregivers to turn them, people who cannot take in adequate nutrition. Very vulnerable people.

Even though he has a living will with specific directives that say that extraordinary measures not be used to keep him alive, his wife has had to advocate for those directives to be honored.  There are many factors that are keeping him in the nursing home…one is financial-he has long term care insurance which will cover the cost of his care.  My aunt thinks that hospice care will not be covered by the insurance he has.  Another is that my aunt is elderly, overwhelmed and has poor health literacy.  Her nieces have been doing all they can, long distance, to help her understand all that is happening. But there is no one educating her and helping my uncle where he is.

My mother worked for years at a hospital to reduce the number of bedsores that occurred there.  At the end of her life she got a bedsore in that very hospital.  Hospice was never mentioned by her oncologist.  Also she feared losing the successful pain management that had been achieved at the hospital.  My sisters and I were at the hospital 24/7 to assure that she received the care she needed.  Unfortunately that didn’t help with assuring that she didn’t get a pressure ulcer.  She died in that hospital.

There are ideas for bringing discussions of End of Life and the care that is received out in the open.  One advocate for this is Alexandra Drane with her Engage with Grace website.

There are other advocates in this work: Kathy Kastner is one example.  She blogs at Ability for Life and is beta-testing an End of Life app.

What we need is to get all of healthcare–all patients (physicians and nurses are patients too)–talking about and thinking about how the end of life should be experienced.

Angels In Our Midst 2

Pinktober–never heard this word before starting to use twitter in October 2011.  Now I’ll never think of October in the same way again.  All because of the dynamism of one woman, Rachel Cheetham Moro.

Her advocacy  was born from painful experience and a desire to save other women.  Using her skills honed from a Masters Degrees in Business and Tax from Fordham University and experience working for Ernst & Young as an international tax consultant, this Aussie took on Big Pink, the Susan G. Komen Foundation.  Her summary of the financial shenanigans that are occurring at the Komen Foundation clearly illustrate why people the world over need to re-think their giving.

Yet while she journaled her struggle with metastatic breast cancer– her pain, both physical and emotional–she also gave voice to unsung heroes in her blog Can-Do Women.

A traveler, she visited 40 countries in her short time on earth, her wonder and love of life is apparent for all to see in her writing.  She continued writing even after losing the use of her arm–even during severe illness, she answered emails from people like me.

She has inspired me to continue to advocate for women with metastatic breast cancer and to work to change the Komen Foundation’s direction in its use of funds and to motivate others to support organizations that are really looking for a cure.

Rachel, thank you for being open and alive and giving to so many.  Thank you to her friends, family and her Beloved, for helping her to share her life, her intelligence and her wit with all of us.



Angels in Our Midst

“The joy of life after cancer”

is the tagline for Toddler Planet, a blog written by a beautiful woman.  Strong, brave, talented, brilliant, loving, funny:  these are words used to portray her.  Blessed is the word to describe us, the recipients of her words.

What happens in the world of Internet connectivity when a young mother, (34 years old), an astrophysicist, decides to stay at home with her children and occasionally consult?  She starts a chronicle of her journey.  She teaches and shares her knowledge of space and science with others through writing.  She has fun with her little boys, age 2 1/2 and 5 months.

“The joy of life after cancer”

The momblog that she creates is terrific: full of life, full of hope, full of the challenges she faces with a toddler and a baby.

Only when her mother-in-law is diagnosed with breast cancer, does the young mother pause.  She’s been so busy, so involved with living and giving.  She’s been breastfeeding her 5 month old since he was born but something is different this time around.  Why is her baby unwilling to suckle her right breast?  Why does it look “different”?

Doctors visits later she finds out that she has Inflammatory Breast Cancer; a rare and dreadful form of an already terrible disease.

Her answer to this diagnosis is to educate others, to let us all know of her journey.

“The joy of life after cancer”

She journals her feelings, her struggles,  her love, her delight in her children, her pain and she endures beyond the prognosis of the disease.  Even with bone metastases, there is still hope.

“The joy of life after cancer”

Chemotherapy, radiation therapy, exhaustion, clinical trials, pneumonia; repeat.  Four and one-half years…

“The joy of life after cancer”

Her final entry, written as a conversation between herself and her beloved husband, is  about bringing hospice into their home.

Go to her blog, learn from her, pray for her husband and little boys, read and share and advocate for a real cure for breast cancer.  And remember, the tagline

“The joy of life after cancer”

Susan Niebur died February 6, 2012. @whymommy


Wanderings in Puerto Rico #EOL

A  breeze keeps him cool in the tropical sun as he plays.  Impishly he smiles at his sister, then makes a rush at her.   He almost catches her, the little lizard wriggling in his grasp.

 ¡ Prisa!  hermana… o me voy a poner un lagarto en la oreja.

¡ Mira! El lagarto va morder el lóbulo de la oreja y colgar al igual que un arete.

¡ Ejecutar!

End of life, Spanish pours from his mouth as he speaks to his wife of almost 50 years.  He has never spoken to her in Spanish in all their married life.

The long-term care insurance doesn’t pay for a great place to keep him but she doesn’t know what else to do.  While feeding two other patients, a nurse’s aide says, “Good thing you feed him…there are too many mouths to feed for me to deal with him too.”

He’s thin, thinner than ever before.  She feeds him bananas…they make him smile.

Me encanta la canción del Coquí.  ¿Lo oyes?

The bed sore is getting worse, his skin is breaking down…he’s stopped walking…he has sepsis.  The list goes on and on…

It’s snowing outside….He’s hanging on…his body just won’t let go of this life.  She loves him but wishes he would leave because of the pain…his pain…her pain at watching him leave her.

The sun feels good on his face.  His island home welcomes him, whispering

Ven conmigo.

*For a dear one…I love you!