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.

What I mean is that it was almost like one day everything seemed so perfect and right and then Lynn was sick. Very sick!

These changes in her health hit me like a loud, hard slap in the face. Each time I saw her struggling to get enough air to walk across a room, I was so frustrated, angry, and I felt powerless.

I thought "this is not right! She is only 34!"

She had been talking about getting a Master of Fine Arts degree from the University of North Carolina.

She should be thinking about those things! She should be thinking about normal life and a career just like I had built a career. I was so bitter. This wasn't right! It was not fair!

She needed me to bring her meals to the spare room where she was having to spend most of her time.

She was gasping for air at times. I could see that she was short of breath. It was so maddening for me because I couldn't fix the root problem. I could bring her food and things she needed but that wouldn't fix the problems.

Sometimes I didn't want to wait on her because it meant admitting how bad her health was, and that meant she might be closer to losing her fight with this disease. I was terrified. I also felt guilty for not wanting to be there for her whenever she asked!

I felt shame for my actions! I do know that Lynn understood the feelings of powerlessness that I felt. She knew this was taking a toll on me. I wasn't being mean and irritable at her for asking for my help. But, I was in denial.

"Of course, I will carry you into the bathroom and help you shower," I would answer later to make up for my bad previous behavior.

Later, Lynn said she wished I had kept in touch with our friends on a regular basis. She was struggling and didn't think she could be the source of support that I needed. I wasn't thinking clearly enough to think that I should reach out to a friend for support.

Lynn was admitted to the hospital again in August of 2000.

I was blaming myself for every way I had failed to help her enough. I felt guilty that maybe I had not done enough to clear the mucus from her lungs. I mentioned earlier that I would do something that involved tapping on her back, her left and right sides, and on her chest. This was to break up or loosen the mucus that built up in her body. This excess mucus was a breeding ground for infections.

These infections and excess mucus were causing problems with her breathing.

I felt guilty that I had not kept the house cleaner. Lynn was worried that dust and other particulates could get into her lungs.

So, we went to the University of North Carolina Medical Center Hospital in Chapel Hill, because they had specialist doctors who worked with cystic fibrosis and other lung diseases - they call them pulmonary specialists.

The IV antibiotics are adapted to the person's body. They also have different ways of delivering antibiotics. Once she was admitted to her room, they set about inserting an IV in her arm. This time, they had to run the IV all the way up her arm to get it closer to her heart which will pump the antibiotics throughout her body and I guess it is close to her lungs, where the infection was.

This was unusual, more complicated, and a longer process.

It was painful to watch them piercing her body with a needle. I would NEVER have let anyone do anything to break or bruise her skin under normal circumstances. It was killing me to see this happening as I held her hand.

No, this wasn't the first time she had IV antibiotics, but this was so difficult for her and by extension, it was difficult for me. I was trying to be strong for Lynn. We were both crying.

As they finished getting the IV into her, I had to get up and walk a bit to keep from passing out. I paced around that floor of the hospital and returned to her side. I felt ashamed for leaving her. It was just a few minutes and I had made it through the procedure, but I was beating myself up for every failure on my part.

This reaction on my part had not happened previously when she had to go into the hospital. There was something more symbolic and disturbing about this time. This time the reality of her survival was the thing that overwhelmed me.

I stayed with her and tried to do anything she wanted or needed. Anything to make the time more passable for her.

They let me sleep in the bed with her. I don't think they had the heart when looking at either of us to ask me to leave. I think there are dorm rooms or other places where family members can stay when someone is in the hospital.

I must have looked like hell. I felt so overwhelmed.

The days were something of a blur. It felt like a bad dream.

I would tell myself, "This isn't happening."

You cannot unsee the woman you love gasping for air or short of breath doing just the smallest of things... routine things.

My entire reality was now like being in a fog, or I felt like I was in a dark and misty place. I felt like I had wandered out into the mist and sanity itself was somewhere in the distance like dim lights along the coast as seen from a boat on the ocean.

Things were changing for me and I felt powerless over it all.

I felt such despair and hopelessness.

It wasn't supposed to happen like this. They were going to find a cure someday. A cure for cystic fibrosis. I had hoped and prayed so long and desperately. This was happening too fast for me. One day you are on top of the world, the next day the love of my life is fighting for her life and might die.

I tried reaching out to my family. Lynn had said she wished I had kept in touch with our friends, but for some reason, I thought to reach out to my parents and maybe my siblings.

I was about to find out that to my surprise they didn't have the capacity at this moment in time to demonstrate any compassion or concern during all this.

What kind of mother, father, sister, or brother doesn't know that this is extremely painful and a time when I would need help and support? That's a rhetorical question. I am sure that my readers understand the pain I am describing.

In their defense, I suppose I shouldn't assume anything. I can only imagine but I cannot know what was going through another person's mind

I had those feelings of a fog hanging over me as I tri