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

Chapter 31: Living as Husband And Wife without Marriage But With Cystic Fibrosis

As I mentioned, Lynn and I couldn't have a wedding because our combined income might make her ineligible for the insurance that would cover her treatment.

Okay, so this speaks to just how madly in love with Lynn I was. Anything happening to her was terrifying. I had asked her to marry me, given her a ring, and committed myself to her forever. But without a wedding or a "legal" marriage.

We even tried going to the Catholic church to get married but without a marriage certificate and they would not allow that. The fact that we didn't have a wedding didn't change anything.

If you are thinking that I imagined getting married to someone else someday, the answer is NO! I had found the one for me! Lynn. So, my commitment to Lynn was forever.

Let this all sink in for a moment. We were in a rush with time hoping that they find a cure for Cystic Fibrosis - a genetic illness - so that she would live past her fifties. That's what I needed!

Treatment can cost several thousand dollars per year during good years. Even her mother could not afford that.

What do I mean by a "bad year?" And what was it like in general, even during good years?

Occasionally, she would use an inhaler but that didn't seem to happen very frequently.

I drove her or we drove together to her clinic appointments in Chapel Hill. From Wilmington, that was a drive of over two hours. It happened for the most part only once a year.

They would check her oxygen saturation... take X-rays to see the scarring and the buildup of mucus in her chest.

Lynn was good about letting me sit in on every meeting, such as when she was taken to a room to be examined by first a nurse and then a doctor.

Most of the time we were very lucky because she was so very healthy for someone with this very serious and debilitating disease.

I might have turned away or left a room when they wanted to collect a mucus sample. Lynn understood that I had a weak stomach.

Anyway, so much of this was becoming routine. Most of the time.

I asked so many questions all the time. "What is that dark spot in her chest area that you described in the X-Ray? Is that mucus or scarring?"

The doctor would answer, "well, here is some excess mucus that needs to be cleared, and here is some scarring?"

"Wait how do we clear that mucus?" I asked.

"Have you learned how to do the tapping?" the doctor asked.

"Yes, we learned about that from the physical therapist." I answered, adding a question "but it's still worrisome?"

Then I asked, "What about that device that she is supposed to wear, is that better?"

"Not necessarily," the doctor answered.

Then Lynn said, "it doesn't clear it out for me, I can tell it's still there." Then she turned to me and said, "I told you about the problems and asked for your help the other day."

I felt so guilty. "Oh, my God, Lynn, I am so sorry." Adding, "it's scary for me. I know you need me and I'm trying. I'm scared when you are not well. That makes me feel guilty because I should be there for you... but I get sad and scared about the meaning of these problems."

I paused and added with tears running down my face, "I want a 'normal life' ... and if anything happens to you... I just love you so much, you make me feel good and happy. I can't imagine not having you with me."