I was at Family Camp this week. I cannot tell you how much I needed this break. In truth, as soon as I walked into the front door of Stone Lodge at Wesley Woods, I could feel a wonderful sense of calm settling behind my eyes and lightening my chest, those rare moments when you realize all that you had been holding onto and only because it was suddenly absent. Family Camp is essentially a family reunion for my father's side of the family, meaning uncles, aunts, cousins, second cousins, and good friends all in one close space. We go on hikes, play games, go sailing, play games, eat, go in to town to shop, play games, and all-around catch-up. This year, the hot ticket (pun intended) was Ticket to Ride. Andy and I were only able to be there from Saturday to Tuesday, with how our work schedules panned out this year, but that was something, at least, and I had every intention of using my time as thoroughly as possible.
And so I helped set up the sailboats, canoeing out with my father to tie the scow to a buoy--this involved some careful maneuvering in the boat to turn around and tie a bowline knot with a ratty rope, without tipping the canoe, of course, while it was raining/misting. Then we jumped into card games, board games, eating, and chatting. We're fast talkers and strong personalities, all vying to be part of the conversation. After unpacking our room and heading back downstairs, five people were standing around the coffee maker and trying to figure out how to make it work, a few repeating the same suggestions and a few more voices adding in their own thoughts. I just shook my head and chose not get involved in that one. We're loud. We're open and friendly. We're kind. Everyone's hearts are in the right place, though the jury is out on where our minds are some days.
However, I've had a few symptoms crop back up on my again with my Crohn's. For those who don't know what that means, your immune system is like a three-year-old in the kitchen. When that three-year-old has something to do, something to help with, it'll be messy, but they'll try to get most of the flour in the bowl or only knock over three things trying to reach the next piece. If that three-year-old does not have a direction, Lord knows what is going to happen to that kitchen: pans splayed everywhere, flour and eggs on the floor, and all kinds of other mess that is best left to the imagination. Well, the immune system, our figurative the three-year-old, has been wreaking havoc in my digestive system, the kitchen in this scenario. I'm sure I'll discuss some of the further ramifications on what that means at a later time, but in this case I will summarize that the last few centimeters of my digestive tract, the area known as the rectum, is a few shades of mad. I have a lot of scarring and symptoms stemming from this angry, angry part of my body, including an abscess that kicks back up intermittently, bringing pain, pressure, and a whole lot of blah. Naturally, when I was off antibiotics for less than a week, it reared back up again.
So in the midst of feeling some relief and spending some much needed time with family, I was again more concerned with what was going on now with my body. In this case, I could not sit down, and I was grateful that I had brought some good painkillers with me. I didn't have the umph to do much anything, but started doing things anyway because I'm stubborn. I was drained just by sitting at the table playing a board game, excusing myself when I couldn't take the pain of sitting anymore and had to lie down for a while, removed from the people I had been so excited to see.
Probably the biggest blow was the realization that I couldn't go sailing. My father and I both find a very specific peace on the water, where all you can hear is the wind rushing past your ears as you hold the sheet in one hand and the tiller in the other (sail-rope and steering stick, for those not familiar). All in all, it's a different kind of quiet where I can stop my mind if only for a while. Pop and I have had some very meaningful discussions on a sailboat. I was very much looking forward to that peace again, where even the longing for it made me want to cry. But I couldn't sit on an inflated doughnut; there was no way that I was going to be able to maneuver on a sailboat. Andy was trying to be helpful, suggesting that the wind looked good and why didn't I try, but he was unknowingly twisting the knife just a bit further.
Then, I realized that I still had to go to work on Wednesday. So, I made the tough call to go home a day early, that I could use Tuesday to recuperate. That decision hurt to make, still makes me choke up.
I feel that I have lost so much because of my Crohn's. I've lost time, experiences, money, and the image I used to have of myself. The first big experience I missed out on was the sixth grade trip to Medieval Times, the first of many other things I would rather have been doing than stuck once again on the couch or the toilet. Losing your self-image is a jarring thing to work through, too, finding who you are in the midst of all that is changing. I have even lost friends because I did not have the energy to maintain friendships, sad as it sounds.
I have grieved the loss of all these things. I still do. Grieving doesn't just suddenly stop at one point, where things are magically better again. It's about finding that new normal. In the meanwhile, I can be really good at smiling over a lot of things. Damn good, if I say so myself.
Some days, I worry that I have lost a real part of myself, that I have become jaded with all that I have carried and experienced and lost something important to what makes me me. But Crohn's can never get the best of me, because I give the best of me away every day.
What I give away can never be taken from me. What words I write and thoughts I share are out there, never to be pulled back in again. I will pour myself out and let my disease take the chaff left behind. I want to be present and fully in all that I do, from my work to a conversation with a friend. All my time and my gifts I lay out for those around me.
Crohn's can never get the best of me, because I give the best of me away.
(**cough**And sometimes I carry on just to spite the disease, getting my revenge on Crohn's by living my life anyway, dammit.**cough, cough**)
There are still things that I will miss out on. There are still places I'd rather be. There are certainly things I'd rather be feeling. Well-meaning people asking me when I'm going to have children unknowingly twist a knife of their own (I want to have kids some day, but my body is in no healthy place to do so any time soon, thanks for the reminder). I might only get to see a friend for an hour because my body has decided that it is tapped out, or otherwise cancel on the suspicion that my body will, once again, let me down.
So what experiences can I still have? How will I budget my energy to ensure I'm there for the parts that really matter? I'm not sure, really, but I do the best I can with the information that I have. I weigh out what I think my body can handle, and stay at least an hour later than I should anyway. It might mean that I'm on my survival foods for the next day and a half, but I'd rather be present in the moment. Facing a glass of wine or a beer or something beautifully greasy, there's that question of whether enjoying it now is worth the inevitable pain later.
I am still here. I am still myself. I will continue to give, for the sake of my spirit and those around me. And I will not be undone, if only because I'm stubborn like that.
So in the midst of feeling some relief and spending some much needed time with family, I was again more concerned with what was going on now with my body. In this case, I could not sit down, and I was grateful that I had brought some good painkillers with me. I didn't have the umph to do much anything, but started doing things anyway because I'm stubborn. I was drained just by sitting at the table playing a board game, excusing myself when I couldn't take the pain of sitting anymore and had to lie down for a while, removed from the people I had been so excited to see.
Probably the biggest blow was the realization that I couldn't go sailing. My father and I both find a very specific peace on the water, where all you can hear is the wind rushing past your ears as you hold the sheet in one hand and the tiller in the other (sail-rope and steering stick, for those not familiar). All in all, it's a different kind of quiet where I can stop my mind if only for a while. Pop and I have had some very meaningful discussions on a sailboat. I was very much looking forward to that peace again, where even the longing for it made me want to cry. But I couldn't sit on an inflated doughnut; there was no way that I was going to be able to maneuver on a sailboat. Andy was trying to be helpful, suggesting that the wind looked good and why didn't I try, but he was unknowingly twisting the knife just a bit further.
Then, I realized that I still had to go to work on Wednesday. So, I made the tough call to go home a day early, that I could use Tuesday to recuperate. That decision hurt to make, still makes me choke up.
I feel that I have lost so much because of my Crohn's. I've lost time, experiences, money, and the image I used to have of myself. The first big experience I missed out on was the sixth grade trip to Medieval Times, the first of many other things I would rather have been doing than stuck once again on the couch or the toilet. Losing your self-image is a jarring thing to work through, too, finding who you are in the midst of all that is changing. I have even lost friends because I did not have the energy to maintain friendships, sad as it sounds.
I have grieved the loss of all these things. I still do. Grieving doesn't just suddenly stop at one point, where things are magically better again. It's about finding that new normal. In the meanwhile, I can be really good at smiling over a lot of things. Damn good, if I say so myself.
Some days, I worry that I have lost a real part of myself, that I have become jaded with all that I have carried and experienced and lost something important to what makes me me. But Crohn's can never get the best of me, because I give the best of me away every day.
What I give away can never be taken from me. What words I write and thoughts I share are out there, never to be pulled back in again. I will pour myself out and let my disease take the chaff left behind. I want to be present and fully in all that I do, from my work to a conversation with a friend. All my time and my gifts I lay out for those around me.
Crohn's can never get the best of me, because I give the best of me away.
(**cough**And sometimes I carry on just to spite the disease, getting my revenge on Crohn's by living my life anyway, dammit.**cough, cough**)
There are still things that I will miss out on. There are still places I'd rather be. There are certainly things I'd rather be feeling. Well-meaning people asking me when I'm going to have children unknowingly twist a knife of their own (I want to have kids some day, but my body is in no healthy place to do so any time soon, thanks for the reminder). I might only get to see a friend for an hour because my body has decided that it is tapped out, or otherwise cancel on the suspicion that my body will, once again, let me down.
So what experiences can I still have? How will I budget my energy to ensure I'm there for the parts that really matter? I'm not sure, really, but I do the best I can with the information that I have. I weigh out what I think my body can handle, and stay at least an hour later than I should anyway. It might mean that I'm on my survival foods for the next day and a half, but I'd rather be present in the moment. Facing a glass of wine or a beer or something beautifully greasy, there's that question of whether enjoying it now is worth the inevitable pain later.
I am still here. I am still myself. I will continue to give, for the sake of my spirit and those around me. And I will not be undone, if only because I'm stubborn like that.
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