Where do I begin? On Tuesday we had our colonoscopy and finally heard news that we have wanted to hear for a long time. We are nearly there. No active inflammation, but we do have quite a bit of healing to do. But we are almost there! Woo!
While I was drugged up from the procedure, I didn’t fully understand what my doctor trying to explain. I had asked him if I was in remission, you know, 100%. He said not quite remission because we had lots of healing to do and we have 8 polyps (which, why couldn’t we just settle with a nice number like 3? Always have to be extra don’t you?), and then he casually mentioned that he doesn’t believe in the word 100%. After this he proceeded to tell me if I needed a number, we are at 99% of my good.
And now that it has been a few days, I am no longer drugged, and had time to reflect, I finally realized what he was saying. He doesn’t believe in 100%, because in chronic illness is there ever 100%? Will I ever just be healthy?
Now body, I was blown away. No 100%. But isn’t that what I have been telling us that we need to achieve? Isn’t that what I so desperately clung onto, that 100%=normalcy again. And now I sit here realizing it just won’t be. We will just be 99.5%. Maybe even 99.9%, but not 100%. This is a big deal, because it really put in perspective how much I have held these negative feelings about you body. It made me really listen to my inner voice and let me tell you, I didn’t like it.
Now I don’t know if everyone experiences this with a chronic or invisible illness, but I certainly struggled with this.
You see body, when it really hit me that this was FOREVER, when it finally settled in that this wasn’t going away with some pills, orange juice, and rest, I really began to loath you. Now I don’t normally hold a lot of hate in my heart. I try to see in good in life. I try. And usually the most it comes to is a strong displeasure and the possibility of me just not making an effort anymore and continuing on with my life, with or without that person or thing. But with you, I felt a hatred. I felt this deep, personal hate. I was so crushed. How could YOU do this to me? To us? I felt betrayed by you body. We were only 22 going quickly on 23. We still had so much life ahead of us and you decide to do this? It wasn’t fair.
Truthfully I allowed this hatred to manifest and morph over time. It turned into depression. It turned into anxiety. It turned into disgust. I stared at you in the mirror in horror. There were moments in our journey where I just felt nothing. That we were nothing. Just an empty vessel on autopilot. We had changed so much in such a small amount of time. We were constantly changing. I couldn’t keep up, but you didn’t seem to care. So I stopped caring. But then the times I did care, it didn’t feel very good. This negative image grew so big and we got to the point where I was so repulsed by us, that it ended up affecting some of my relationships. I couldn’t see why anyone could love someone so broken and ugly. Who would want to put up with us, because I barely had the motivation to put up with us. So we shut down. We cried. We laid in bed for hours just staring into space. We lost ourselves in the fantasy of shows or scrolling through social media. We wanted to be anyone else. We picked fights with people as a deliberate way to push them away, make them hate us. Sometimes we pretended to be okay so people wouldn’t worry about us because we didn’t want someone to waste their time on us. We were a burden to others. A burden to the world. Isn’t that the messaging we kind of got? A burden to the medical system because we will always be flawed in some way. We will always be weak and feeble and need the support of the medical system. That we drain the system. That we just simply cost too much because we will most likely be on medication for the rest of our lives?
Luckily we had people who saw past this and fought for us. People who constantly cheered us on, let us cry, and gave us the space to grow and heal. How lucky were we? Because not everyone has this.
It wasn’t all bad body. We had some really beautiful and profound moments in our journey. We celebrated small milestones. We grew closer to people. We found a voice in advocating for this community. We even still pushed on with life. We got a promotion in a job and we then later got a new job. We started grad school and now we’re almost ready to graduate. We travelled. We moved in with a boy (and our parents let us!). We met an amazing online community of other spoonies and IBDers. We grew closer to the people that mattered the most. We gained weight! That’s a big one that our GP is pretty proud of us for (and so are our parents. Parents always want to make sure you’re eating enough). We did pretty good.
But that still didn’t stop that ugly voice in my head. That still didn’t stop it from telling you that it was still not enough, because we were not 100%. And I’m sorry I didn’t stop it. I swear I would never talk to another person the way that I talk to you, but yet I continued to let it happen. I continued to punish you for not being better, when really you were just trying your best. We didn’t ask for this to happen, but I couldn’t let go of this part of me that felt like you did want this to happen. That you purposely sabotaged me in life. You punished me for being too happy with where I was in life.
But how do I know that? I am a pretty practical person, I enjoy research. And from what I see, I don’t have enough evidence at this point to confirm that you really did purposely plan this. I even consulted my doctor and even he still doesn’t know why this happened. Just not enough known about ulcerative colitis at this point I guess. So for now, I guess you’re off the hook on that one. For now, I need to learn how to let go of that thought.
So body, this is my letter to you. My letter to say I am sorry. To celebrate and recognize how hard we have worked together to get to this point. It hasn’t been an easy journey and it hasn’t been easy to put up with you. But I guess it hasn’t been easy to put up with me either. I look at the bruises I have all over my arms from being poked with needles and IVs and see how hard you work to heal us. I think of all the aches and pains we have gone through and I feel how much stronger we are now. I mean we aren’t 21 year old Brittany strong anymore, but we are definitely better than 23 year old Brittany! 87.8 pound Brittany would be proud of us now! She would be shocked that we have managed to stay a nice steady weight of 103 pounds, without steroids. And that we have been steroid free for almost a year! Can you believe it body!? This is the longest we have been steroid free! That in itself tell us how far we have come.
So we need to work together. I need to better respect the job that you are doing, because it’s not really all in my control. I can maybe aide you along, but this part of the journey is all you. You have to do your magic and heal that sucker up. I will try to avoid our trigger foods, attempt to minimize the stress, and listen to you better. I will keep taking my vitamins and my medication. But you have to do the hard part, you have to heal. And I just have to do what I can to support that.
We will get through this. We got through a lot already. I genuinely believe things happen for a reason. Correct that, I hold onto the idea that things happen for a reason. Or else what was the fucking point? I have to believe that we needed to go through all of this to be the stronger, wiser (questionably so), and better person we are today. That this journey has really taught us some profound lessons (which I do think it has). I genuinely am really liking the person I am becoming, so I think it’s safe to feel like this journey has contributed to this. Everyday we find our why and keep fighting. And even when we get that word “remission” I’m sure we will still have to keep waking up and find our why, because there is no 100%. We will always be just a little bit different than the average person. We will always have to watch out for what we eat, watch out with people who are sick around us (because you really think sharing is caring and like to pick up EVERYONE’S nasty illnesses), watch out for our stress levels, and cope better with our fatigue, depression, and anxiety. We don’t just get to snap our fingers and magically get to make it go away. We don’t just get to be willy nilly and not listen to each other because that is how we can end up in the hospital. This isn’t just a “pooping disease”. This could have killed us if we didn’t work together. This could have made us seriously ill.
So body, I am going to try and be better to you. Thank you for trying so hard to do the best you can with what you got. Now it’s my turn to carry the weight a little like many of my family and friends have and give to you the encouragement, support, understanding, and love you need so that you can heal.
We got this.
Brittany (or basically my brain to my body, I think….)