Memoirs of A Healer/Clinical Social Worker: Autobiography of Bruce Whealton

Chapter 51: Trauma & Cruelty of Cystic Fibrosis and My Connection to The World

There are things of such darkness and horror—just, I suppose, as there are things of such great beauty—that they will not fit through the puny human doors of perception.

- Stephen King, from Skeleton Crew

Days before, things were normal. We were happy. We weren't focused on the fact that Lynn had a terminal illness that she had been born with. I am not saying we were unaware of this fact, but life just seemed normal... until it wasn't.

This might seem hard to understand to an observer. I guess we needed to believe that something could be done about the problem... that they would find a cure and we would live happily ever after.

Cystic fibrosis reminded us that it was a part of our lives. It seemed like a petulant child who had to be noticed. It was part of Lynn. She had that gene defect such that when a person has two copies of this recessive gene, they always have the disease.

We had lived a life that we wanted to be "normal." Lynn's health had been good for someone with this disease. So, we were lucky.

Most of the events in this chapter occurred in August of 2000. However, things started to change in late July 2000.

We noticed in late July two things that were very troubling. One was that Lynn was losing weight, and the other was that she was having trouble breathing. That can happen from time to time with Cystic Fibrosis, so the full weight of this didn't hit right away.

I had not noticed, but Lynn told me she was having trouble keeping weight on her. To me, she still looked perfect - beautiful as ever. This is one of the signs of deteriorating health for someone with Cystic Fibrosis. She had to take pills with every meal the entire time that I knew her. It was routine. However, it is a reminder that the disease impacts her digestion.

We knew that something was wrong because she was struggling to breathe. She would become weak just doing routine things around the home. She also couldn't go to work.

It's hard to talk about this without crying. I know it's hard to understand what it is like unless you are living with this.

We went to the clinic on July 21, 2000, in Chapel Hill, which was about two hours away. They admitted her to the hospital for IV antibiotics. They had found on an x-ray that there was a heavy mucus build-up throughout her lungs and there were large black marks that indicated scarring. Her oxygen saturation was lower, which meant that she wasn't getting enough oxygen in her body.

This lasted until July 28.

When she got back, she was having the same problems with breathing.

When Lynn started getting sick in August of 2000, she set up a place to eat and watch TV in the spare room that we had. She was short of breath and needed me to bring her food in there. She would fall asleep in there because she was too tired to walk back into the bedroom. We also couldn't make love or enjoy any kind of passionate togetherness.

Every night before going to sleep, she would also use a machine that delivered inhaled antibiotics, steroids, and other medications to open her airways. I brought this setup into the other room also.

Lynn and I had never slept apart in all the years we were living in this home, together, other than one month but it had to be with my work. That could not work out well for me, so the job only lasted a month. There were a few times when I was on call for a job or away at graduate school when we slept apart, but that was it.

Wasn't everything just perfect the other day? Wasn't she telling me how close she wanted to be to me? She said "I feel like I cannot get close enough to you" as she wrapped herself around me and kissed me so passionately. It felt like just the other day even though that was in April. But in May, June, and July, things seemed great and normal. If she had been getting worse, it wasn't noticeable to me until this time in late July.