"I have a bad feeling about this..." |
I'm no Jedi (well, not that YOU know of). I've been preparing for so long for a transplant surgery that even though there was a LOT of initial anxiety, I've squared with the idea over the years and honestly don't feel very apprehensive about it anymore. The potential complications that follow? Yes. But not the actual surgery itself. The guys here at Penn State can do those with both eyes closed while playing a few rounds of Candy Crush on the side. So you can imagine how mild anxiety turned to dread when we found out about the need for an artificial implant. This means two major surgeries instead of just one before we're out of the woods (Someone needs to start chopping trees, by the way, the overgrowth is out of control). Again, I'm not so much apprehensive about the surgery itself, but by the physical and logistical complications that follow. I wish I could say the same for my wife, kids, and friends. Like Obi-Wan, my mild anxiety has turned to dread, and spread quickly to those around me. We are caught in this inexorable pull toward danger and there is no Han Solo among us to find some way of slowing it down. We don't even have any smuggling holds to hide in. What I'm getting at here is I really want a lightsaber or one of those cool laser pistols Han carries on his hip.
What were we talking about?
One of the harder parts of this is relaying the news to people we love, because we know as we do so, it pitches them headlong into the same chasm of anxiety and dread that we are battling. I feel like in some way I'm doing harm to them. Several months ago, I got news that Tim Anthony, a friend and idol of mine, died of liver cancer. Far separated by geography, I had no way of noticing my friend was ill because we only communicated via Facebook. Tim chose not to reveal his illness to anyone but his immediate family. I totally get that. I don't want to cause anyone distress, and the constant looks of concern, the tears, the offers for help...I know it all means they care for me but I wish there was no need for any of it at all. I'm self-conscious that by sharing my situation with others, it might be construed as drawing attention to myself, or seeking pity. My life was so public for so long between being a pastor and musician in my 20's and 30's that it's hard for me to be objective about how much information is too much to share. I hope I'm getting it right.
Today is my last day at home with my family. My parents are here, which has really helped to distract us from the dwindling time we have together. We've talked, laughed, cried, eaten good food, reminisced. Christie and Rich are more quiet than usual. Brennan is mellow as usual, but I can tell he's dwelling on it too. Should we be doing something more significant than eating at a nice restaurant today? Why does it feel like giving up to take family pictures at this eleventh hour? As if there won't be another opportunity. Who have I not talked to, or told I love them, or settled with? I've spent the two weeks in a non-stop blitz trying to shore up financial matters, plan for the next homeschool year for the boys, set up home repairs, maintenance vehicles, put some things on hold, finish up projects, and in general, prepare to be out of the world for four months. There's no real way to prepare for it and I can't even get my brain wrapped around the idea.
See, I've had no time to prepare for this. I've been ready to accept a donor heart and deal with the subsequent and common problems of rejection, med tweaks, unexpected limitations, as well as the freedom to do so much more physically than before. An artificial heart is a new idea for me - something that would have been unthinkable even 18 months ago. I've held out long enough for the technology to save me, but psychologically, I don't know how I feel about having a machine instead of a heart, or my life being dependent on an external pump that requires battery changes every hour or so. I'll feel so much better, but I'll be more limited than I would if I had a real heart (totally singing the Tin Man song in my head right now..."If I only had a heart...." Good song). I've not had time to process any of this.
The thing that bothers me the most is the separation from my family. Even over the last two years when I've been admitted to the hospital for weeks at a time, the room will accommodate all four of us and a card table. We can eat together (which Christie makes happen pretty much every night she's not working), play games, read, catch up on school work and each others lives in relative comfort. It's not home, but Christie has made it as close as it can get every time. It's the thing that has warded off the loneliness and sustained me for those long stretches. Now we're faced with the reality of a room crammed with medical equipment and the machines that will keep me alive for the first few weeks. There is no room for a family meal, or a game board. The official protocol only allows two other people in the room at a time. Will they flex this for us, or does this mean we won't all stand in the same room together for four months? There is a physical ripping out of the heart, but this metaphorical one troubles me so much more.
Christie and I had been married about three years when we both quit conventional jobs so we could run a business together. We were home all day together, worked at night together, traveled to gigs together. We don't get sick of each other. We tried to maintain this dynamic as much as possible over the years. When Christie was a travel nurse, we traveled together. Our kids are homeschooled. We spend every moment, day and night together, unless they're with friends. We're a family that's used to being in each others lives every hour. There's never a need to "catch up" with what's happening in the kids lives. Christie works three night shifts in a row every week, and when she's done, we spend the other three and a half doing things, playing, working, talking, learning. Everyone needs alone time, but we don't need much because we actually *like* each other. There's nowhere else I'd rather be than sitting across a mess of D&D dice with the boys, or in the kitchen with Christie, or on the road to somewhere we've never been, listening to our favorite music. The thought of being apart for so long is my Death Star. I dread it, and I fear I'll crack or give in to despair because of it.
I wish I had something more hopeful to say at the end of this post. I guess I can say that I'm ready for the surgery, that I'm not afraid of it, that we have made the very best decisions and controlled every single aspect of this that we can - down to having the #1 device surgeon on the planet doing the procedure. None of that was a happy accident - it came through much bloodshed, tears, expense, and sacrifice. Hard decisions and gut-wrenching changes that had to happen to give me the best shot at surviving. The rest is out of my hands, and I'm at peace with that. I truly believe, in the words of Neil Peart (Rush) that we have to "get out in the world and take our chances [because] fate is just the weight of circumstances." There is a biological cause and effect at work here and that comforts me because it means there's nothing else I can do at this point but let the thing take its course. I know some of my readers will protest that we must pray and have faith. I don't disagree with that, but I've chronicled on this blog my views on how those things relate to my situation exhaustively (HERE and HERE), so I won't burden you with it again. I do appreciate all the prayers, thoughts, and good vibes everyone is sending our way - knowing we have such a huge base of support during this means so much. It gives us strength and comfort as well.
Thanks for reading. I plan to sneak in, disable the tractor beam, and make a daring escape. Death Star or no, the moral of the story is that no matter how afraid or filled with dread, even the biggest threats can be overcome. With a well-placed proton torpedo and the Force. (This analogy may be breaking down, so I'll leave it there)
I could say "Trust to the Angels" or "Break a leg" or just plain "Piece of Cake" but I think you'll understand that this 'other' mother really wants to say "Live long and prosper."
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