Coping With the Loss of My Brother to CF

Losing my brother when I was just a teenager left me feeling isolated in my grief. There was no internet or social media in the 1980s to connect with other people with CF. Therapy and time eventually allowed me to cope with his loss, open up to family and friends, and invite them to share in my memories.

| 7 min read
Melissa-Shiffman-Headshot
Melissa Shiffman
Melissa-Shiffman-Brother-Featured-Rectangle

I will never forget the feeling of utter loneliness in July 1988 when I went to set the dinner table for the first time. The funeral had been the week before. The seven days of Jewish mourning known as shiva -- most of which I spent holed up alone in Jason's room going through his things to soak up every ounce of him that I could -- were over. It was time to settle back into normal life. My mom was making dinner, as usual. I was setting the table, as usual. I took out four plates, as usual. Only now there were only three of us. Putting the fourth plate back was a slap in the face of what our new normal was to be. 

My brother, Jason, was 22 months older than me. It was family folklore that when I was born, he would climb into my crib to sleep with me. When we were older, we'd sometimes switch bedrooms to “pull one over” on my parents. We didn't do sibling rivalry. Sure, there was the occasional figure four headlock and unprovoked punches to the face, but there was nothing but love between us. After misdiagnosed bouts of pneumonia, my brother was finally diagnosed with cystic fibrosis when he was 7. 

As a precaution, I was given a sweat test and was diagnosed with a “mild” case at age 5. Our trajectories with CF were very different. Jason was pancreatic insufficient and was in the hospital four times a year with lung exacerbations. He had pulmonary therapists come over daily to give him airway clearance treatments. I was chubby and healthy, faking my way through my airway clearance but suffered from chronic nasal polyps. I usually joined my brother in the hospital once a year to have sinus surgery and IV pole races down the hallways. 

Times were different in the 1980s, pre-internet. I did not know the dire progression of CF. I was blissfully unaware that the disease was weakening my brother every year until he told me when I was 10. I don't know why he knew people could die from CF and I didn't. Once I found that out, it was like my blinders were taken off. I saw how thin he was, how his cough racked his entire body. My anxiety surrounding his hospital visits grew. 

However, I also saw how he was an A student, how he played Little League, how charismatic he was, and how determined he was to go to an Ivy League college. I chose to focus on these strengths ... even when he started using oxygen when he got home from school. Even when his hospital visits were more frequent and lasted longer. He was in the hospital for more than a month as my ninth and his 11th grade school years ended. 

At this point, I was barely holding it together on the inside, living in fear. I was with family friends on July 4th when my parents called for them to bring me to the hospital. I knew before they had to tell me -- I was going to say goodbye. 

When he died, my heart was absolutely broken and remained so for quite a long time. At 14, I did not have the ability to put my feelings into words, and I did not know who to turn to. My parents were grieving quietly together, so I grieved quietly alone. None of my friends had lost someone close to them. They didn't know what to say to me, and when school started in September, only two teachers acknowledged my devastating loss. There was no school counselor to talk to. In fact, as an adult, I became a social worker to work with adolescents so that they would not feel as alone as I felt. 

I hated meeting new people because I was faced with the question, “Do you have a brother or sister?” I did not know how to answer. Saying, “Yes,” and explaining his death brought on a whole uncomfortable conversation I was not willing to have, but saying, “No,” felt like a betrayal. In college, I only told my closest friends about him and about my disease. 

Still thinking my symptoms were mild, I did not feel like CF was part of my identity, just Jason's. I was not very compliant. That changed when I met my husband in my mid-20s. Around the same time, my respiratory therapist sat me down and showed me that my lung function had dropped considerably over the years that I ignored my disease. I was not “mild” anymore. 

The good news was that I had the power to start taking care of myself. I got a vest, started exercising, taking my meds, allowing my doctor to send me for tune-ups and, thankfully, I have maintained my health. My brother died before he could take advantage of the drugs that have come up the pipeline in the past 30 years. After all that my family has suffered, I decided I would never let anything happen to me if I could help it. I changed my lifestyle -- stopped going out so much, changed careers to one that required less traveling and late nights, and eventually stopped working to focus on building up my health. 

I spent many years in therapy coping with the feelings of loss that I had bottled up after my brother died. My family reached a place where we could talk about him openly together and with others.

That step forward was invaluable in helping me share his memory with friends, new and old, and with my children who did not know him but know all about him. It is with pride and love that they are both named after him in some way, as is custom in the Jewish tradition.

It has been 30 years since my big brother passed away. The pain has gotten easier, but it has not gone away. I still think about him every day without fail. My husband and I usually realize the anniversary of his death is coming, not because it's close to a national holiday, but because I instinctively become more despondent. Being able to name that and give myself some space to mourn is so helpful. 

Memories of Jason play a significant role in my extended family. We celebrate his birthday and the anniversary of his death with his favorite cookies and share stories of him growing up. Rather than fill me with sadness, my heart swells with love, happy tears, and gratitude for the time I had with my brother.

Join the conversation on Facebook.

Share this article
Topics
In Memoriam | Emotional Wellness
Melissa-Shiffman-Headshot

Melissa was diagnosed with cystic fibrosis at the age of 5. After briefly working in the music industry, she became a social worker, which heightened her interest in politics. Melissa began advocating with the CF Foundation in 2011 and served as National Advocacy Co-Chair for 3 years. She continues to advocate in Washington, D.C., and New York on behalf of the Foundation for policies that will help extend and better the lives of people with CF and their families. She is a member of the Cystic Fibrosis Reproduction and Sexual Health Collaborative (CFReSHC), which produced the Cystic Fibrosis Sexual and Reproductive Guide -- a guide written by patients for providers and patients on topics such as body image, contraception, hormones, family building, and more. Melissa resides in downtown New York City with her husband, two children, and two guinea pigs.

Recent Community Posts
What To Do When “Most People Will Be Fine” And You Are Not “Most People”
Blog | 8 min read
Struggling to Process My Son’s Rare Mutations
Blog | 6 min read
More Than a Lung Disease
Blog | 5 min read

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.