Honest Delusions

The title of my post comes from an amazing sermon I heard at church last week from a retired newspaper reporter. At the FIrst Unitarian Church of Rochester, we have taken on a “Provocateur-in-Residence,” named Mark Hare, formerly of the Rochester Democrat & Chronicle. Hare’s first sermon was “The Honest Person’s Honest (Even Noble) Delusions” and just blew me away. (Listen here: streaming | download ) He talked about how all people put up delusions about all sorts of things. Putting self imposed limits on ourselves that sometimes we don’t even know we’re doing, until someone else points it out. For example, telling yourself you’re too old or too busy to go back to school or to take a new job, then someone else tells you that, well No in fact you can do it because of X, Y & Z. Then you think – well yeah, of course I could do that!

The part that astonished ME was when Hare started talking about his friend with cancer, near the end of his talk. Mike & I just kept looking at each other because we knew how it felt to “deal” with a terminal illness. This friend with terminal cancer, was told he would have 6 months to live. He just kept living his life. He made plans to play music and travel and kept living. You would think he never remembered he was dying. But it was not true. As Hare puts it, he had that stuff in the “closet” until he could deal with it. He didn’t live his life as a dying person, he lived it as a living person, and every so often he’d check in that “closet.”

Well the night before this we were watching Doctor Who’s Episode “Night Terrors,” where a frightened “little boy” kept all the scary things in the cupboard! (cupboard=closet) And since he was actually an alien being, they were really going into the cupboard. Even little kids can understand putting scary stuff away from sight!

I can relate to both these stories. Yes I have ALS, with no cure, that continually progresses, but I have chosen to live my life as a person who gets up, gets dressed and goes to work. I shove that horrible news I have that I will someday not be able to do anything back into the closet until I can deal. Occasionally, I do take it out and remind myself to enjoy each day that I have as it comes. I don’t think our human minds can handle knowing that sickness will wear you down and death is coming. That dark place will freak you out.

The best part was sharing this service with Mike, who gladly, already knew I was not acting in self denial but in a place that moves me forward in life. Which I guess keeps my body motivated to live as well.

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Today I am 42

Yep. The cat’s outta the bag. Either you thought I was younger than that  – or you thought I was older. Let’s just say you thought I was younger.

As I was saying… I am 42. It’s been a strange and long road to get to today. Not only the usual being born growing up stuff that people do. Not even the mental growing up that we often are forced into. Not just because I am terminally ill.

On August 8th, 2011 things started to change. I survived a massive  pulmonary embolism.

I’m not being dramatic when I say MASSIVE. It actually was SEVERAL clots. I thought I just had a panic attack. I count my lucky stars that I work with AMAZING people. My two ANGELS know who they are.

I had no idea what was wrong with me except I had blot clots. They gave me oxygen and blood thinner. Scanners for this, that and the other. It took hours. I didn’t actually know what it all meant until I managed to get out of the resident doc.

I am crafty. As soon as I questioned the resident, I grabbed my iPod Touch and jumped on the free hospital wi-fi to google blood clots.

And that’s where I learned why everyone was so grim and serious, including my husband.

As you know, looking up any kind of health problem is scary. I had NO IDEA I was moments from death when I arrived at the hospital.

It’s almost a year since that happened. I was bedridden, had physical therapists, visiting nurses,visiting care assistants, and not a lot of strength. It took until Thanksgiving to realize that although I was regaining strength, I had lost a fair amount of it too.

I had to accept that I wasn’t going to remarkably improve, the ALS was still going to make both breathing and walking more difficult.

It’s just how it is going to be. It’s how it is.

I spent a lot of time showing everyone my strength to help my loved ones and other people who suffer the same fate how great I am doing at carrying it all and being so positive. This is the other side of that coin.

It is hard. Life is hard. Life is hard for everyone. That is truly how I get through my dark times.

It’s hard to think ahead to the next year when I’m not even sure I’ll be here next year. It’s hard to set personal goals or even professional ones when I no longer see so far into the future. Those are part of the life I left behind.

I am finally in the here and now. What motivates me now is what I can do NOW. Right now. Not last year, not next year. NOW.

Happy Birthday to me as I am now!