Kick the bucket list

What would you do if you had less than a year left to live? Fly across the country? Throw some big parties? Check some things off your bucket list? What about your spouse? Your kids? What do you want to do with them? What memories do you want them to have of you when you are gone? Would you even be in the position to make these decisions?

Maybe not.

If you know me, or are following my blog closely, you know I was diagnosed with a deadly lung disease and it has progressed quite rapidly. I am currently on the official waiting list for a double lung transplant. Without new lungs I will die. I have no other option.

I was ill for well over a year by the time I was diagnosed. By that time I was frail, on oxygen, and had heart failure. I knew what my chances were and realized I had to make some pretty big decisions on how to focus the energy and time I had left. For the first few months I remained stable on the medications. It bought me some time... time to research, to organize, to work my way through some projects.

I started organizing some older photos from my childhood and worked on making my daughter's baby book more beautiful, transferring everything to a sturdy leather album with more stories and information packed in its pages. I put together a few milestone cards for my daughter and tucked them away, just in case I won't be around for those special times.

I reinforced my choice to be an organ donor, and registered to have what's left of my body accepted into medical research. I tried my best at conveying my wishes to my family and friends and why certain things mattered, or didn't matter in case of death. I wonder how much actually got through since many of them don't like to think about or discuss what I call Plan B.

I wrote legacy letters for my husband and daughter. They were tough. I wanted to keep them short and sweet but had so much I wanted to say. Everything I typed was difficult and words didn't flow as easily as I wanted them to. I wrote them approximately four and five months after I was diagnosed and while I was still fairly stable on the medications, it took me weeks to complete them. When I got too upset I had to give it time. Then I attempted writing at another times, only to get upset again, needing more time. But, there came a day I just had to convince myself they were done and printed them, signed them, and tucked them away. Writing those letters was an emotionally draining experience.

It wasn't as much as I wanted to get done, but I had accomplished several projects by the time I started getting worse. The disease had progressed--I needed more medication, more oxygen. As time passed I had no choice but to slow down even more. And then slow down more. And more. And there's something about the fatigue that sets in when your body is dying. It's an evil thing when parts of one's body start to shut down or malfunction and other parts try to overcompensate. There are things that one should be doing but cannot. And things one needs to do, but cannot. One starts to lose contact with everything outside of the home and things pile up and do not get done. One's mind becomes foggy and thinking becomes hard. Even the thought of reading for pleasure hurts the brain. One becomes overly sensitive and they are always uncomfortable. And anything, even the most simple of things, seems too hard, too emotional, too draining. Each day they are just grateful they can control their bodily functions and keep food down.

I look back and I'm glad I got what I did done because it wouldn't be getting done now. The fatigue is too great. What I left unfinished will just have to remain that way because I cannot do any thing more. Now I just wait, and hope and pray, that someone will leave me the final gift of love--a life-saving pair of lungs.

Even though we believe I will come out of this just fine, I am pleased I have much of Part B done. I feel that it is a kind thing to do for one's family. It gives me some peace of mind going into an extremely risky surgery. And, it was one thing I could still do that feels like helping out... just in case.

One of my friends told me her mother died when she was an infant. Her mom was diagnosed with cancer and died ten months after she gave birth. "She had ten months," my friend said, "why had she not written a letter for me?" She admitted it bothered her.

I think we may look for simple answers when at times, there are none. I can only speak from my experience, imagining whatever my friend's mother was experiencing was unfathomable. Yes, there are those who go out with a blast the last few months of their life--taking trips and checking things off their bucket lists, illness willing. There are those who plan out everything and leave letters and organized estates. But I believe that is rare and perhaps hyped up by the media. Likely dying people may be in shock or are angry, or in denial. They may be too sick. Medications may cause horrible side effects, including delusions. And when the body is dying, and the fatigue sets in, a human body and mind is only capable of so much.

A bucket list may not be something one is concerned with when they are at death's door. And as strange as it may seem, a letter to leave behind for a child may have been impossible.