Something changed for me last week. I have been ill off and on for the last ten years and now I have the constant companions of gastroparesis and esophageal spasm. I’ve thought a lot about life and death through these years. I’ve thought about the slow decline that a body can go through and how eventually it can fail. Even as I thought about it, I never really thought the word, never tied death to it all. Yes, I know people are dying, I’ve admitted fear as I have faced repeated placements of a feeding tube that won’t stay put. I’ve handled trips to the ER in pain, just wanting it all to stop. But I never really looked at that word as applying to me unless I made a drastic choice.
Until last week.
Someone else actually made the choice. To make a long story of medical ineptitude short, I came close to partying with the Reaper. Very close.
It started with feeding tube placement number five (in as many weeks). The doctor who did the fifth one added something he felt would help keep the ever-migrating tube happily in my intestine. He was a DOCTOR so I trusted him. When I was back the next week for number six, the something was left in place. Since that fifth tube, I had been feeling worse and worse. After tube six, I headed downhill fast.
I thought it was dehydration, it had been very warm, and it had been hard to keep up on the liquids. Finally, I got to the point where I felt so bad, I called the doctor. It’s hard for me to make a call like that. I worry I am overreacting, I worry there is nothing wrong. After going back and forth with a “floater” nurse, my doctor’s regular nurse finally called me and I explained what was going on and she seemed confused. Her answer—come in ASAP.
I did. I headed in, feeling awful, feeling like I MUST have done something wrong. It had to be me, right? And more to the point, it was really silly to bother the doctor, I was just dehydrated and I needed to be stricter about getting water into my tube every half an hour or so.
When I was ushered back to the exam room, the nurse took my blood pressure and disappeared. When the doctor came in, I came face to face with reality. It wasn’t me, it wasn’t silly, I wasn’t bothering the doctor—no what I was doing was dying. Right there in the exam room with the ugliest chair on earth, I was facing the Reaper.
I remember apologizing for not figuring out what was going on, and my doctor calmly telling me it wasn’t my fault. The doctor responsible for it was the one at fault. He was the one who should have figured out he was compromising my body. It wasn't my fault. My doctor repeated that many time as he listened to how I felt, looked at the records and got that scary calm the medical profession gets when things are truly bad. I’d seen it on the face of nurses and doctors caring for my mother in the first days after her stroke. That detached calm that lets them function in the face of death.
And there it was, on the face of my own doctor, one of the very few I trust. Someone who always tells me what is going on, no matter how hard it is to hear. He has been frank about every step of this journey. His support has been vital in keeping me sane, and there he was all calm. It worried me. More than that, it terrified me. It’s only because I am stubborn I hadn’t collapsed, if I’d ignored it for another day I WOULD have collapsed. Greetings, Mr. Reaper.
I’ve thought a lot about where this illness will lead. As I live day-to-day with nausea, with the feeding tube that in a way now controls my life, with pain. I’ve thought about how bad things can get as the list of people dying with gastroparesis grows. Funny, though, even as I thought about it, even as I mulled over the period at the end of the sentence, I don’t think I every really saw it sitting there at the end of my sentence. That word.
Now I do. It is very real. It is right there and it can be something as seemingly innocent as that something. I’ve heard everything is brighter and better when you come through a serious situation. I’m not sure about that. Yes, I hear the birds and smell the flowers, I enjoy a cup of coffee when I can and listen to the rain on the roof. I always have, and that will never change. What has changed is almost indefinable. It’s a shift, a change in the horizon.
I’m still here. I plan on being here, I have admitted I am afraid of where my illness will lead, but I’ve never looked that closely at the face of the Reaper, never thought about how close he really is to me. Waiting, sitting in exam rooms and the office, the couch at home and the bed I sleep in.
Many people have told me “everyone dies” to comfort me, or “sure, this is going on with you—but I could get in a car wreck tomorrow.” All that is quite true. In fact, I could get in a car wreck tomorrow, but that is not something you can worry about too much. I live within view of a volcano, and not too far from another that blew its top in 1980. We’ve had earthquakes, I was in a plane on the edge of a tropical storm and I’ve lived in tornado country. I don’t worry about those things. I don’t see them as threats, they just are.
This illness is a threat. It can be subject to the whims of a simple medical mistake. Maybe I need to think of it as a volcano or an earthquake, but that is hard as I listen to the pump on the feeding tube. This is every day, every moment.
Are things brighter after nearly meeting the Reaper? The world is always bright, full of life and beauty. I came away from that moment thoughtful, finally looking at that sentence, at the ending that is sitting there. Where the end is written I’m not sure. I just know that now that word is there staring back at me.
Multum in Parvo means much in little and it describes life so well. I have gastroparesis, esophageal spasm and other issues that offer challenges to my daily life. This is the blog of those days.
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