What do you do when someone says something so unfeeling you are left reeling? Something that sets you back so far, all you can do is sit and let the tears tumble out of your eyes? Why am I asking? I received a note today. I have been in turns crying, angry and so close to the abyss I can hear the wind whistling through the entry.
What could possibly have been said to create this vortex of emotion?
“I hope you are feeling better. Things get more challenging as the Reaper approaches.”
I am hoping that this is a case of misunderstanding, that the writer of the note does not realize that the Reaper is not approaching—he is camped out in my living room having a pizza party.
One of the reasons I started this blog, and made the decision to share this journey with you was because so few people have even heard of gastroparesis, let alone understand it. As you all know, I also have the additional challenge of esophageal spasms, which makes it just that more difficult. I feel a little like I have failed to make things clear. That perhaps I have not been as honest or as open as I need to be for people to really understand.
This note does give me an opening I have been looking for, or maybe another question to pose: how do I respond to people who say “get well soon”? There really is no getting better right now. There is no cure or answer. There are palliative measures, anti-nausea drugs, pills that relieve the spasm and of course now, my new friend, the feeding tube. Right now, the reality is there is no “getting well”. There are times of feeling better. The feeding tube has given me more energy, wounds that haven’t healed correctly are finally healing. Of course on the flip side. I am tethered to it for twelve long hours a day. It’s not an easy answer. It’s not easy to face every day.
And yes, some days I don’t want to face it anymore.
I know there are a lot of my fellow GP sufferers that have feeding tubes. I don’t know what their experience with the tube is, whether they have become accustomed to it and just hope for a day when it’s not there or if they wake up dreading the day. As I have said before, my experience is subjective, and right now it’s hard. It’s hard to face, it’s hard to know things are going downhill no matter how I struggle to go uphill. Some days it’s just hard to not take the plunge into the abyss.
This disease is not simple. It is not just “tummy trouble” as someone said to me recently. It is something that is taking lives. How many this year? Young, old, it doesn’t matter. Maybe that is where I have fallen down in sharing this journey with you. Because it is scary, the more you know, the scarier it gets.
I am afraid. Deeply afraid.
I try not to show it, or to be “down” when I am chatting gleefully away on Facebook or Twitter, but underneath I am trembling all the time. My days are planned around my illness in so many ways. The tube, the feeding, the continual pain from the GP, spasms and other things follow me day and night. I can never escape. I can feel the wind of the abyss at my back.
I have done everything right and still my body is failing. How far will it fall? The question haunts me every day. Is there really hope my esophagus will heal with this rest and I will be able to eat again? I don’t know. I can have liquid by mouth, but on a bad day, it still doesn’t go down. Today was one of those days. Will I end up in bed, unable to get out and walk in the forest? Is the chance of seeing some of the places I want to see—or see again—gone? All the people I want to meet, is that gone as well? I don’t know, and that terrifies me.
I do know that comments like the one in the note make the day so hard, I can barely see to the end of it. Yes, the Reaper lurks in the wings and as people are fond of saying “anyone could walk into a bus tomorrow” but I have the bus within me. And sometimes it feels like it is just waiting for its chance. Did the writer of the note understand this? No, I don’t think so. But that doesn’t change the reaction. It doesn’t stop the tears.
And it certainly doesn’t stop the fear.
What could possibly have been said to create this vortex of emotion?
“I hope you are feeling better. Things get more challenging as the Reaper approaches.”
I am hoping that this is a case of misunderstanding, that the writer of the note does not realize that the Reaper is not approaching—he is camped out in my living room having a pizza party.
One of the reasons I started this blog, and made the decision to share this journey with you was because so few people have even heard of gastroparesis, let alone understand it. As you all know, I also have the additional challenge of esophageal spasms, which makes it just that more difficult. I feel a little like I have failed to make things clear. That perhaps I have not been as honest or as open as I need to be for people to really understand.
This note does give me an opening I have been looking for, or maybe another question to pose: how do I respond to people who say “get well soon”? There really is no getting better right now. There is no cure or answer. There are palliative measures, anti-nausea drugs, pills that relieve the spasm and of course now, my new friend, the feeding tube. Right now, the reality is there is no “getting well”. There are times of feeling better. The feeding tube has given me more energy, wounds that haven’t healed correctly are finally healing. Of course on the flip side. I am tethered to it for twelve long hours a day. It’s not an easy answer. It’s not easy to face every day.
And yes, some days I don’t want to face it anymore.
I know there are a lot of my fellow GP sufferers that have feeding tubes. I don’t know what their experience with the tube is, whether they have become accustomed to it and just hope for a day when it’s not there or if they wake up dreading the day. As I have said before, my experience is subjective, and right now it’s hard. It’s hard to face, it’s hard to know things are going downhill no matter how I struggle to go uphill. Some days it’s just hard to not take the plunge into the abyss.
This disease is not simple. It is not just “tummy trouble” as someone said to me recently. It is something that is taking lives. How many this year? Young, old, it doesn’t matter. Maybe that is where I have fallen down in sharing this journey with you. Because it is scary, the more you know, the scarier it gets.
I am afraid. Deeply afraid.
I try not to show it, or to be “down” when I am chatting gleefully away on Facebook or Twitter, but underneath I am trembling all the time. My days are planned around my illness in so many ways. The tube, the feeding, the continual pain from the GP, spasms and other things follow me day and night. I can never escape. I can feel the wind of the abyss at my back.
I have done everything right and still my body is failing. How far will it fall? The question haunts me every day. Is there really hope my esophagus will heal with this rest and I will be able to eat again? I don’t know. I can have liquid by mouth, but on a bad day, it still doesn’t go down. Today was one of those days. Will I end up in bed, unable to get out and walk in the forest? Is the chance of seeing some of the places I want to see—or see again—gone? All the people I want to meet, is that gone as well? I don’t know, and that terrifies me.
I do know that comments like the one in the note make the day so hard, I can barely see to the end of it. Yes, the Reaper lurks in the wings and as people are fond of saying “anyone could walk into a bus tomorrow” but I have the bus within me. And sometimes it feels like it is just waiting for its chance. Did the writer of the note understand this? No, I don’t think so. But that doesn’t change the reaction. It doesn’t stop the tears.
And it certainly doesn’t stop the fear.
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