The President of the United States mentions Cystic Fibrosis, (CF) in the State of the Union address about how we’ve “mapped the human genome to lead a new era of medicine -- one that delivers the right treatment at the right time... In some patients with cystic fibrosis, this approach has reversed a disease once thought unstoppable.” (Barak Obama, State of the Union January 20, 2015) and my jaw literally drops. A national moment for sure and a very personal one for me - Cystic Fibrosis runs through me and my family. I am the sibling of two sisters with CF and I am a carrier.

From our Mother I learned about the first definitive medical diagnosis for why my sister Loretta coughed, couldn’t gain weight, and got pneumonia so easily. This came as a result of a visit to Stanford University Medical Center in 1966 when she was 16 years old. Much later my older sister Barbara got her late-in-life diagnosis in 2010 at Santa Barbara Cottage Hospital.  With my pregnancy in 2005 I found out for the first time that I was a confirmed carrier of CF. Sharing this CF family history with my doctor, he requested a salt test for me. With results in the range of 40 - 59 mmol/L = intermediate level I am in the second tier. What that means, potentially, I still don’t know, as I have had respiratory allergies and digestive issues all my life.

Experiences of CF siblings are combined with scent, sound and image, I think. Helping siblings to find a way to keep memories of their CF loved one(s) is a good thing. There was and is a kind of sweet, different smell and a rattle to my CF sisters. Their breath, for me meant I was tucked in and close to life and my family.

Loretta and I shared a bedroom. The sound of the nightly, rhythmic pounding routines with Loretta hanging head down off the bed as my mother (a polio survivor) pounded her back until she coughed up something with the ever present boxes and boxes of tissue. The bottles full of pills she had to take and the steam mist tent machine surrounding her bed, were just part of the furnishings at our home along with our mother’s wheelchair and crutches. I will never forget late one the night when her pancreatitis flared up the year she died was particularly frightening. I heard in her voice a pain that went beyond the norm when she told me to “go get Mom.”

Keeping the Ones We Lose
Memories are all that is left for me of my sister Lori. I work hard to keep them.  When I look down on her gravestone when I visit the cemetery, she is not as vivid to me as what lives in my heart and mind.  She died at just 21 years old when I was only seven (7) years old going to her funeral in 1971. That was a hard year for her and our family with her three hospitalizations in a year: pneumonia, pneumonia-pancreatitis and pneumonia for the last time. The seven years I had with her are real for me in my memory full of sounds, scents and a garment.

Sounds - The music of her era is uncharacteristically familiar and comforting to me because she played and replayed vinyl albums on our parents’ big wood console stereo while babysitting me. As the music of James Taylor and especially Cat Stevens came on she danced with me around the living room on her hip.  She taught me yoga and how to read Tarot Cards.

Scents - There were many trips to the beaches of southern California at Santa Monica and Zuma, where we’d drink in the fresh salt air and where she’d taught me to make a little trench to keep my soda can from falling over. I loved going anywhere with her in her red Volkswagen beetle and still have a great affection for the so-called VW interior scent. 

When she went to the horse stables for her riding time, I’d tag along. I can just see the arena and feel my foot on the lower fence rail and my hands on the top rail peering through the gap to watch her make her rounds with Ajax, a retired Hollywood horse. He’d been the star in the Ajax Cleanser commercial of the 60’s and 70’s. He was a lovely, big horse who would stop his trot without command when her coughing spells began and would wait patiently before starting up again. That good smell of hay and soil and horse keep my memory strong of the sister I lost.

Garment - The times were hip and hippy. I still have the hand-made shirt Loretta sewed in a size that seems so small to me now, but it fit her diminutive body perfectly. She’d hand-embroidered colorful flowers as a border - I love each one of those stitches. Fiona, my daughter, in Loretta’s shirt is shown here.

There were evening walks together to remember after dinner with her and her dog, a sweet Irish setter, named Kerry - after the county in Ireland. The setter and I both felt the loss when she died. That dog lived years after Loretta passed away and was a comfort and friend to me. When we finally, out of compassion, asked the veterinarian to put her down at age 16 it was overwhelmingly hard for me to let her go. I keep several photos of the dog around for comfort too.

I have a strong association with Stanford Medical Center for no reason other than the one trip I ever made there. This must have been the trip for Loretta’s diagnosis. Walking in and hearing that Patrick, my then 12 year old big brother, and I couldn’t see her because no children were allowed to visit, was a blow. 

I understand these hospital policies as an adult but hope for a better way for young CF siblings today to be included or allowed to feel that their CF brother or sister knows that they were there to see them, even when no visits are allowed. Perhaps Skype and other communication technologies are helping with that.

We siblings get used to hospitals, doctors, medical discussions and treatments right along with the CF sibling. The playrooms normally set aside for pediatric patients were sometimes offered to me and that was some comfort for a kid. At home I recall watching my sister with some combination of rapt attention mixed with fear- hurting for her- as she tried to inject herself in her thigh with some new medication and finding it strange that she was told by doctors to practice injections on a grapefruit. I fought all the time with the mix of jealousy because of all the attention she got and guilt over my own health.

Looking back I see so much wisdom in the way our parents Gene and Margaret raised my CF sisters without anybody telling them how to do it. I think about parenting and how Loretta really lived her short life and our parents never stood in the way. We never talked about it openly-somehow they knew to make sure that Lori grew up living the life she wanted to live. She was on drill team in high school; rode horses for fun; went to college; lived in her own apartment; traveled with Barbara to Canada and went all the way to Ireland and England with a close friend.

I would give anything to have just one more day with my sister. But I am grateful for the time I did have with her and keep her alive in my heart with the scents, sounds, images, objects, photos and memories.

Time with the Ones Who Live
Lucky me - Two very cool, big sisters! Barbara was out on her own for most of my life with her college years and career. I recall, clearly, how Barbara wrapped her arms around me and told me it was Okay to cry as we sat for the Rosary at Loretta’s funeral. I think siblings and especially younger siblings need help processing grief and the loss of a CF sibling. 

Our parents worked hard to get the family together for visits after Loretta died. There were trips to visit Barbara in San Francisco and many holidays in a cool house that her husband Rich built in the Santa Cruz Mountains of Northern California. She made sure I got to go on fun trips to tourist attractions like the Red Line Bay Tours. There I was the 8 year old version of me, just obsessed with collecting sea shells. A trip to Fisherman’s Wharf made sure I came home with an enormous bag full. 

Barbara continues to lead an active lifestyle and only recently retired from a long career in public service and consulting, not knowing for most of that time that she too had CF. The day she called me from the Santa Barbara Hospital in 2010 to say “I’m in the hospital - they are sure now, I have CF” is a fierce memory. With her diagnosis I learned so much about all the newest CF research since Loretta had died and the unpacking of the genetic puzzle. And there is a new kind of terror when the phone calls come and she’s caught a cold or worse-the kind of phone call that makes me book flights.

There are new treatments now with the new drugs Kalydeco and Orkambi that can help CF patients. A mechanical vest has taken the place of the pounding treatments for CF patients. The steam tents are history but nebulized breathing treatments are done daily. The sterilizing salt air of the sea has so much benefit.   Much of this Barbara has been doing all along, like the swimming and walking for health, continue in the ideal environment of her California coastal home.

When hiking in Yosemite National Park at high elevation, as we spent Thanksgiving together, reminds me of her CF; but let’s not miss the point, she’s hiking at 5,600 feet elevation with a gain of at least 500 feet amongst the Great Sequoias. She’ll out lap me in a swimming pool any day of the week, clocking in at least a mile several times a week and walking to play 18 holes of golf.  With incredible energy, will and determination she’s an inspiration to me. 

Just like our mother who made you forget the wheelchair, Barbara’s energy makes you forget the CF. There is reason for new hope for her and our family. She just sounds better to me, fewer coughing spells, as we talk for an hour sometimes on the phone. She tells me she is better and feels treatments are working and I believe her. We work hard every year to overcome the distance between our homes and have good, long visits somewhere fun. Time with her - that is what I treasure the most. The lesson for a CF sibling is to never take for granted that time is on your side.

There is a lot of support, information about CF and recreational grant opportunities for horseback riding, dance and other grants through the CFLF  http://www.cflf.org  and the Loretta Morris Memorial Fund  (http://www.cflf.org/loretta-morris-fund-recreation-grants)    

 

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Eileen Morris lives in Chico, CA is mother of four, grandmother of two and on the Faculty at CSU Chico as a Lecturer in political science. When she’s not with her family or teaching you can find her doing yoga, dancing international folk dance, crocheting and trying very hard to get to the beach.