Jennifer’s Story: A Life of Beauty and Loss in Facing Cystic Fibrosis

Jennifer’s Story: A Life of Beauty and Loss in Facing Cystic Fibrosis

My little sister, Jennifer, was a beautiful woman who, like myself, fought Cystic Fibrosis throughout her life and on Saturday, February 7, she passed away at twenty-three after her body rejected the set of lungs she had received by transplantation the previous October in Denver, Colorado.

Cystic Fibrosis, like other genetic diseases, inhabits a unique place in nature for the evil it creates. In the novel The Brothers Karamazov, Dostoevsky speaks to man’s singular capacity for “creative” evil; however, in his writing, Dostoevsky neglects the insidious evil of nature, which enabled Cystic Fibrosis to slowly deteriorate my sister’s lungs through years of struggling for her health.

During my life, I have tasted the suffering brought by Cystic Fibrosis, but this weekend I experienced its devastation. The day before Jennifer’s death I rushed to the airport after I received a call that she would likely not make it more than a day. My tears began to course as I entered her room and saw her strain every muscle in her chest with each breath she took, almost shaking the bed with her effort. Her fight to breathe in those final hours unmasked, for all of us to see, the fight that had been hidden in her lungs every day of her life.

That night, before her death, I spent my final moments alone with her, and as I sat on her bed and held her hand I wanted her to know that her death was not her fault. I didn’t want her to die thinking that she didn’t do enough and that maybe she could have prevented that fatal outcome. The reality is that she was sick because of a genetic mutation that was arbitrarily given to her and she died because the lungs she was given were not compatible with her body.

When you live with CF, it is easy to develop a “guilt complex” that your sickness is your own doing because you didn’t do enough to stop it. A person diagnosed with CF is assigned to a life of unending treatments, nebulizers, and medications that take hours every day, and compliance to these treatments is essential to health. However, sickness and long stays in the hospital are almost inevitable, and it can lead to the thought that “if I would have done more treatments, or exercised more often then I wouldn’t be sick,” but the fact is that Jennifer and each person with CF is sick because they have a disease that was randomly given to them and was out of their control.

It is this arbitrary nature in which Jennifer was given Cystic Fibrosis and died that I have the most difficult time reconciling. She should be alive. She should still be with my family, laughing in our dining room, and playing piano as I come home. The simplicity of her life was beautiful and pure, but it was too short and now I am without my partner in our fight of over twenty-three years.

 

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However, before she left, Jennifer gave me an indelible lesson by her immeasurable grace and composure as she awaited her death. As she laid in her hospital bed those last few days my family and I were the only ones crying. For the first time in months Jennifer let go of her stress and fear and lay confidently waiting, and even as she struggled for each breath she maintained a transcendent peace welcoming her death. As I carry on without her I retain her calm to emulate as I face my own fate living with Cystic Fibrosis and the uncertainty that my future holds.

In my first article, I wrote about my experience finding the Latin words, “dum spiro spero,” which translate to, while I breathe I hope. I believe that hope is not possible without suffering and it is in my suffering that I hope life can be different than it is today. However, as novel CF therapies are being developed that may provide this possibility, I struggle to understand why this could not be the same for Jennifer and the countless others who have died before her from this disease.

It is in their memory and honor that we must carry on the fight against CF. The new therapies that are being developed are the beginning, but the healing they provide is incomplete, and nearly 50% of CF patients are left without the possibility to take these drugs. We must push forward until the healing for everyone with CF is complete; and so I will carry on this fight with tears in my eyes and pain in my heart from the loss of my beloved sister, yet always holding onto the words, while I breathe I hope.

 

 Jennifer Shannon

August 13, 1991 to February 7, 2015

31 comments

  1. Valerie Park says:

    God bless Jennifer and your family. Prayers of comfort sent to you in your time of loss.
    I am a mother of a 23 year old with CF. We live in Littleton Colorado. My daughter is also studying genetics and biology in hopes of becoming a doctor/researcher to find a cure for CF. As I write this, she is sleeping, fighting a very high temperature and illness (something she has every winter). She also has an enormous heart and spirit, not letting CF define her life, she has a facebook page, Crystal Climbs for Cystic Fibrosis if you would like to see her plans for living.

    I can not fathom the heartbreak of losing your beautiful sister. Take care

    • Christina Zieniuk says:

      I am so very sorry for you loss. I can feel your suffering and loss. My beautiful daughter has been suffering for 28 years.
      This disease took away everything from my daughter. She is less than 80 pounds.
      Today was another bad day and I wish I could give her life, happiness, and most of all to be normal. She just wanted to be normal, just as Im sure your sister wanted.
      We are very end stage and my heart breaks for your sister and my daughter.

  2. Erika says:

    I am so sorry for your loss I wish they could find a cure for this I have a niece that is 18 with CF and a Son That is 13 years old with CF and the struggles are so real it breaks my heart to hear others story of family with their child with CF and hurting or passing away it’s so hard cause my family we try to live are life to the fullest everyday God Bless you and Your Family IN This Time Of Need

  3. Beverly says:

    So very sorry for your.. I am the Grandmother of a beautiful little girl with cf ..I hope and pray drugs save her… I fell horrible for those who lose the battle while we are waiting ..so close but too far for many.I will pray for you and your family.

  4. Richard Miles says:

    Dear Stephen – A beautiful and moving tribute to your sister. The prayers of the entire Miles family are with you and for you. Best, Richard

  5. Barbara Christenberry says:

    Stephen, what a beautiful tribute to Jenny. It broke my heart to see how much she struggled those last two days, but her grace and sureity of going home, filled me with awe. She said she could not wait to see her Mother, and Grandpa again. She left a hole in our family, that can’t be filled, but the tears we now shed are for ourselves. She is at peace, sitting and talking to Jill, and her grandpas( she has two) . and gazing in the face of her lord and savior… love you Stephen, sorry I haven’t been in your lives as much as I would have liked to be… You are an amazing young man, and I can expect no less for you were raised by three loving parents

  6. Colleen Becker says:

    I am so sorry to hear of the loss of your sister. My 28 year old daughter Amy has CF and is currently at KU Med Center and was admitted on Monday for a two week stay. This is her second admission there since being diagnosed with CF at age 26! I am sure your sister would be very pleased with your wonderful tribute to her as well as your commitment to research the complexities of CF. You have a wealth of knowledge, both educationally and personally. Your motivation to further investigate CF and spread awareness of this horrible disease by sharing your own life journey as well as those of your sister, allows others to experience the realities of Cystic Fibrosis: the good, the bad, and the ugly. I believe that you will accomplish great things as a researcher. Persistence is the key to success. I wish you all the best in your doctoral journey. I will be praying for you and your family as you work through the grief and healing process. My deepest sympathy… Dr. Colleen Becker

  7. Alison Kenny says:

    Hi. My. Name. Is. Alison I live in ireland I just read about your sister and the whole situation reminded me of my family 13 years ago. My brother passed with cf. The heart break, he was 29. Now I’m 44 and am at end stage cf I’m married one daughter 21 the guilt I feel is bad I do I know what you are trying to say. Get in touch with me so time if you need to talk and God bless xx

  8. Annette C. says:

    Stephen, I just started following your blog. I am so sorry. I hope you find strength in the words and thoughts of others. I pray every day for scientists and researchers and clinicians who are working hard to find better treatment, yet it never seems to be quick enough especially when you are trying to live with this disease. My daughter is 15 with CF.
    I hope you keep writing. You are helping to tell the complex story of CF, and you are making a difference in the lives of others.
    Peace to you and your family,
    Annette

  9. Joe and Emily Kerley says:

    Hi Stephen- Joe and I are saddened by the news of losing your sister Jenny. When we were living in Prairie Village, KS and found out Jenny was working at Hen House, we would make occasional visits to see her. She was an amazing person who has influenced so many people, including us. This article you wrote demonstrates your love for Jenny and the passion you have to continue fighting for effective treatment of Cystic Fibrosis. We will be praying for you and your family to find joy in sharing Jenny’s life story with all, and coping with the loss. The amazing part is she is better off than all of us here because she is with God eternally.

  10. MOTHER OF A CF PATIENT says:

    Sorry to hear your touching story about Jennifer. As a mother of a 24 year old son that has cf, I am interested in all the posted comments on your blog. Thank you for your efforts to share such useful information. For all those on that CF journey, keep fighting it and stay positive in the advancement of medicene and care-“While they breath, we all hope”
    My sons CF is milder form and he was diagnosed at age 14. He does well managing it himself but as Stephen suggested, reassuring them that it’s not his fault is always good. I don’t know of any other CF patients in the US, with an Indian background. But considering there’s a notion that this condition is rarer in Asian blood, I sometimes wonder if that’s just a myth, but it’s just not recognized in some parts of the world, because it was not understood!
    Enjoyed reading everyone’s comments and thanks Stephen for all you are doing. God bless.

  11. Mark says:

    Thanks for sharing this, Stephen. My wife and I live in PV and frequently interacted with your sister at Hen House. We have made a donation to the CF Foundation in Jennifer’s memory. Peace.

  12. kimberly magee says:

    I am truly sorry for the loss of your beloved sister. This is my first time reading anything by you, and i was touched by your well written words. My son lost his battle with CF at the age of six. It was way too soon & its great to see & hear of the new advances being made against CF. Also, im very impressed by all of your accomplishments while dealing with CF yourself.

  13. I AM SO SORRY FOR YOUR LOSS OF YOUR SISTER. YOU ALSO HAVE QUITE A FIGHT ON YOUR HANDS!! I HAVE A GRANDAUGHTER THAT HAS CF. SHE LIVES WITH ME. SHE IS 16 AND WAS DIAGNOSED AT 3 MONTHS. SHE IS MY SHINING STAR!! AS SHE GETS OLDER THE STRUGGLE GETS TOUGHER. I AM SO IN TUNE WITH HER ILLNESS, THAT I KNOW WHEN SHE’S SICK BEFORE ANYONE ELSE DOES. SOMETIMES ITS’S HARD TO BEAR!! SHE IS TOUGH AND WILL PUSH HERSELF TO THE LIMIT. I SOMETIMES HAVE TO TELL HER TO REST AND TAKE A BREAK!! SHE IS ILL AT LEAST ONCE A MONTH NOW. I CAN SEE HOW IT WEARS HER DOWN. GOD BLESS YOU AND YOUR FAMILY. GOOD LUCK ON YOUR JOURNEY!!

  14. Kerry says:

    Stephen–thank you for sharing your family’s experience. I am so very sorry to read of your sister’s passing. I lost my only child, Finnegan, to CF nearly 6 years ago. We started a foundation in his memory, and if we can be of any help to you, your family, or anyone reading this with CF, please be in touch. Our primary purpose is to provide direct financial assistance to those impacted by CF. We’ve been able to help over 30 individuals and families in 22 states over the last 4 years.

    I see that you are a PhD student–I came upon your article on a break from writing my own dissertation. I wish you luck in your endeavors.

    My thoughts go out to you, your family, and all who loved Jennifer.

    • Karen says:

      Kerry, so sorry to hear about your son, Finnegan. I would like some information about your foundation. I’ve been praying to find assistance for my 27 yr old daughter who fights this horrendous disease… and live a productive and happy life!!! It’s a struggle to balance both! Thank you for helping the CF individual !!

  15. Patty says:

    Stephen, you are so generous to share Jennifer’s story. You nailed it: CF is random and generally takes families by surprise when a child is diagnosed. We have a 26 year old daughter with CF, who is very healthy overall. But I daresay family members of those with CF live joyfully, like everyone else, but also coexist with a horrible anxiety. It is an anxiety that sounds like, “will medical breakthroughs outrun my loved one’s CF progression?” It often reminds me of the witch of Oz infamy turning over the hourglass. Can we get there on time? Most of us choose o

  16. Frances Ruiz says:

    I’m so sorry for yr loss I to have lost my daughter Marlene Angel Ruz R.I.P from cf she is my angel in heaven & her to also was so brave for all of us especially me she told me so many things before she left even as breathless as she was she would stop talking to me trying to make me fell better I miss her so Much but I’m glad she’s no longer suffering , god bless you stay strong my prayers are with you

    • Gina Ruiz says:

      Frances Ruiz, I’m not sure where you live or where you are from but my 2 sisters were born with the Ruiz name. One of my sister’s on November 2, 2017 went to be with the Lord after battling this dreadful disease that ravaged her lungs. I still have another sister who is battling it but not as bad because hers seems to be confined to her sinuses but she does have a horrible cough.
      I would love to correspond with you if you would like, to find out what area you live in and if we could be related. So sorry for your loss. Gina
      504-202-7641

      • Gina Ruiz says:

        I’m so sorry for the passing of your beautiful sister Jennifer. It is so hard to lose a sister. It’s only been a week and I miss my sister so much. I keep thinking about her and how she suffered. It’s so sad because the only thing that needs fixing is their lungs. My sister had all good health other than her lung and significant weight loss. Meaning she had the will to live but she told me every other part of her was good except the darn lungs. It’s so sad. I feel everyones pain. God bless all of you cf ers and my prayers go out to you.

  17. Patty says:

    Stephen, you are so generous to share Jennifer’s story. You nailed it: CF is random and unfair and generally takes families by surprise when a child is diagnosed. We have a 26 year old daughter with CF, who is very healthy overall. But I daresay family members of those with CF live joyfully, like everyone else, but also coexist with a horrible anxiety. It is an anxiety that sounds like, “will medical breakthroughs outrun my loved one’s CF progression?” Or: “Can we get there on time”? Most of us choose optimism, because the science IS amazing and because the alternative is to think of the most painful and lasting loss. I am so very sorry you’ve lost your beautiful Jennifer. And I’m heartened to hear you are also relieved for her in her newfound peace. In that sense, the hourglass never really wins. My deepest condolences and also please accept my best wishes for your good health.

  18. Terri Muennich says:

    I am moved to tears as I read your story. I cannot comprehend the pain in your hearts. We will continue to fight for a cure, I promise. My 2 year old niece was diagnosed at birth with CF. She is doing amazing, and it’s a joy to watch her run and jump, and give her Momma & Daddy grey hair. 🙂 She is able to watch her beloved “Barney” video only when she takes her treatments. Sometimes she WANTS to wear her vest because she wants to watch the video. I share this story only to make you smile. God bless you and your family. We will not give up. Sending hugs.

  19. Beth Gopman says:

    As I read with tears,
    I believe that all in life is written before we come into this world. The question is would we change life if we could prevent all kinds of sorrow …in other words trade this person we lose for a happier healthier person. We would not make the trade.
    We would not change a day in our lives.

  20. Ashley Ballou-Bonnema says:

    Stephen,

    Thank you for sharing your thoughts with the world. Your sister and her beautiful spirit live on through you and the sharing of her story. She will continue to live on through everyone who has been so moved by her life and through your writing. I too, lost my brother to CF when he was 17 and have found myself filled with the feelings of guilt and asking the unanswerable questions while navigating the terrible disease alone. Wishing you all the very best at KU, and may the love you feel for your sister be shared generously in all you do.

  21. Henry C. Sierra says:

    I am so sorry to hear of your great loss, Jennifer a brave CF fighter. I also have CF and continue daily the fight in which someday we will have a cure. Henry C. Sierra your 60 year old CFer.

  22. Gina Donigan says:

    My heart aches for you and your family as I know the heart ache of the loss of my son Joey Aaron who fought a hard long 21 yrs to Cf… 11-8-90 / 1-28-12 ….
    I pray and hope that one day soon there will be a cure for everyone who suffers from Cf …
    Stay strong in your fight and don’t give up….
    I know the sorrow I feel each and everyday and see that day ,the last day of his fight every time I close my eyes and ppl don’t understand why I can’t get over it ….. my son is gone and suffers no more , but my heart aches for him everyday of my life… He is free now from all the pain and fighting… But I love and miss him so much….

  23. Aunt of two nieces with CF says:

    I am so sorry for your loss. My thoughts and prayers are with you and your family. That is an amazing tribute to your beloved sister. I have two nieces that suffer from CF. Their father died back in 2003 while they were at Children’s Hospital for 30 days undergoing treatments. Like many other families, I join each one of them with best wishes and prayers for your health! God Bless!!

  24. Michelle jowers says:

    Hey my name is Michelle jowers and I have cystic fibrosis.. I am 27 years old and my lungs are at 27% and my weight is 85. I fight every day.. I am sadden my your sister death.. May you continuing fighting this disease and hopefully one day c.f. will mean cure found.. I have two cousin as well with cystic fibrosis one passed but the other one is still fighting.. May God touch y’all and heal yalls pain..

  25. Jackie Smith says:

    I hope you don’t mind me asking you this. Is she dead in that picture? She does look so peaceful. I am a 16 year old with CF and I’m hoping that I look as peaceful as she does when I’m gone.

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