Today is the former Mr. Kitty's funeral..

Charles and I were married for 15 years; our (amicable) divorce was finalised this past December. As some of you may remember, he was diagnosed at 48 with Cystic Fibrosis, and spent the last several years of our marriage going significantly downhill health-wise. He had a double lung transplant in January of 2011, and although it spelled the end of our relationship, it was the beginning of his second chance at life.

And he certainly took advantage of it… he went back to drumming for a belly-dancing group, found a girlfriend, started working on his ‘project car’ again (a 1972 Cadillac Miller Meteor station wagon), and spent time with his dad, kids, and grandbabies. He wanted to go back to work, but was waiting on getting hearing aids before trying to find something (nothing’s more frustrating than a counselor who keeps asking you to repeat yourself!). We’d had to declare bankruptcy because of the medical bills and lost our house as a result, but he moved in with his dad and made the most of it.

He was able to fulfil a years-long dream at the end of May; he returned to St. Augustine, FL, place of many childhood trips. At the beginning of the trip he started feeling ill, but ‘stuck it out’ as he so often would. When he returned he went into the hospital with a mild case of pneumonia, but never came back out. After five weeks on the vent and a feeding tube, it was time to let him go. His dad and children made the final decision, in accordance with his wishes, though I know it had to be extremely difficult for them.

Wednesday morning, the day of the family meeting to decide about the life support situation, I got up and wandered downstairs to glance out the window. It was a gorgeous day- contrary to all weather reports- and the tail end of the local 4th of July parade was going by the front of my house… the antique cars. Charles would have absolutely loved it, and I knew then what the meeting would bring, and that the sight outside my window was not a coincidence. It would be okay.

They disconnected the life support at 4pm that afternoon; at almost 5am on Thursday he died, surrounded by his dad and kids, listening to the Beach Boys.

Although he’ll be cremated, they had a viewing yesterday and today… he was dressed in jeans and a t-shirt with the famous “Never give in” quote from Winston Churchill, and propped up in the corner by the casket is the 1920s-era scythe he just purchased off eBay a few months ago. I watched the tribute video that the funeral home set up, and it was really nice… including the not-quite-typical song choices of “I am a Rock” and “Roll over Beethoven.” I’ve been told they’ll be playing some of my recommendations at the funeral itself (“Behind Blue Eyes” and “Don’t Fear the Reaper”). I’ve no doubt there will be a packed house.

One of Charles’ biggest concerns was that he wouldn’t accomplish anything “big” in his life, and would be forgotten, but there was no way anyone could ever forget such a walking embodiment of how to live life to its fullest. As he used to tell the kids on the pulmonary floor of the hospital, “Make sure it’s the disease that gets you, not the diagnosis.” The disease finally got him, but he never let the diagnosis- or anything the doctors told him- take him down. He had the strangest sense of humour (that project car? that’s a hearse, in case you didn’t recognise it…), the biggest heart, the keenest mind (until the oxygen deprivation interfered), and the strongest will of anyone I’ve ever known. It was an honor to have shared his life for as long as I did, even though it didn’t work out as we’d planned.

My mom is not happy that I’ve chosen to not attend the funeral, but it’s not really up to her. I will honor him here in my own way, and I sent flowers to the family. I’ve talked (well, texted) more with my former stepdaughter in the past two weeks than in the last few years of my marriage to her dad, and she is doing a wonderful job of putting everything together… especially since she’s several months pregnant.

Tonight I’ll watch the Wicker Man and hoist a glass in honor of the incomparable Charles, who no doubt is in process of hunting down the Ferryman to ask him for a job. And I’ll never forget him.

I also want to take a moment to express my gratitude and appreciation for the doctors and staff at UAB hospital, who fought for and with him for the past five years. They were equal parts intrigued, enamoured, and infuriated by him that whole time (I knew how they felt!!), but they never gave up on him (even when they temporarily took him off the lung transplant list because he was so darn stubborn), right until the very end. My heart goes out to them, because I know they must feel this loss as deeply as we do.

Beautiful tribute. I will remember “don’t let the diagnosis kill you” as truly wise words.

My condolences to you and his family.

That is a lovely tribute.

My condolences…and that was beautifully written.

I couldn’t agree more!
-D/a

I am sorry for your loss. My thoughts go out to you and the rest of his loved ones.

Thank you for sharing that; it was lovely. And I agree that the diagnosis quote will bring a lot of hope and/or determination to a lot of people. I am sorry for your loss, but happy you had him in your life.

I can’t say I understand why you made some of the choices you did, and I’m not asking you to explain yourself, but I guess this post is a great way to say that a good person who had a positive impact on your life has died, and he will be remembered for that.

Sorry for your loss.

My condolences. I wish I had better words.

A very lovely tribute.

I’m sorry for you loss. He will clearly be remembered fondly. When good people pass, we like to think that they’ve gone to a better place, or may come back in some way. I wish the best for him.

This was beautiful :slight_smile:

I’m really curious though – why did it take so long for his CF diagnosis? Doesn’t it start causing problems right away?

Thank you, everyone, for the sympathies. :slight_smile:

It does, and did in his case as well, but for some reason he never had the ‘hallmarks’ (read: mostly the stunted growth as a result of malnutrition) that would have cemented the need for testing him. We discovered a record from an X-Ray he had when he was 10 years old (1969) that described the lungs of a CF patient exactly- the summary even said (paraphrased) “Were patient younger, a diagnosis of Cystic Fibrosis may be considered.” As he got older, it became less and less likely that anyone would think of it, and after he turned 18 he avoided doctors as much as possible, since he’d spent so much time with them growing up. It wasn’t until his first real hospitalisation that he said “I’ve been doing some research, and I want the CF test.” They wouldn’t do it at first, then finally agreed, and when it came back positive they apologised and said “We don’t know why you’re still alive!” :slight_smile: His doctors later said the fact that it was undiagnosed for so long is likely what kept him alive… the treatments back in the late 50s/early 60s, when the median survival age was in the single digits, were often more fatal than the disease.

CF is, as you probably know, a genetic disorder… both parents have to be carriers, and although there’s still a chance of not having a CF baby, the odds are against it if the parents are carrying the more common strains of CF. Interestingly, hindsight being what it is, there are signs of CF throughout his family. Of the multiple pregnancies his mom had, he was the only one to survive- she had several miscarriages, and then a couple years before he was born she had twins, one of whom was stillborn, and the other died a day or two later… Charles’ doctors theorised they were probably developmentally affected by CF. Also, he had a photo of a great-uncle who passed away in the early 30s who looked JUST like him- and he died of ‘TB, or some other lung problem.’ It’s likely he had CF as well, just undiagnosed.

It sounds like he must have had a very unusual form of CF, particularly if he was able to have biological children. The overwhelming majority of males with CF have a congenital absence of the vas deferens and can’t have children without technology intervening.

I agree that “Make sure it’s the disease that gets you, not the diagnosis.” is a good way to try to live. I’m glad that it sounds like he did get to live some of his dreams, though it’s sad that the disease surely took a toll on both on you.

Funny you should mention that. TMI alert: I sat in on/assisted with his vasectomy, a few months after we got married and about 10 years before his diagnosis. The doc made the first incision, pulled out the vas, and we both went :confused: :eek: . It was… not even approaching normal-looking. He went ahead and tied/snipped/burned, then went looking for the other one. At one point he was crouched down like a linebacker, rooting around like a kid at Christmas, and just couldn’t find a second vas. He finally gave up, and said that if the subsequent samples came back still littered with swimming beasties, he’d re-do the surgery no charge. Turned out Charles only had the one vas, oversized and gnarled and weird as it was, which should have been YET ANOTHER clue (particularly since he had two kidneys, and usually if there’s only one vas there’s only one kidney). Apparently his kids were just very, very, very motivated to be born. :smiley:

A lovely post, my condolences also :frowning:

A very beautiful and moving tribute and you sound like you’re in a really good place.

It’s a gift when you can look at everything and be good with it; grateful for the positives, seeing the whole picture, accepting, understanding.

My condolences on your loss.

I’m sorry for your loss. Had I known you were so close to me I would have brought a blanket or a meal! Losing an ex-spouse can be such a weird feeling. I’m so sorry.