70 pills to Live
70 pills. Every week, a big countdown. 10 a day. 7 days a week. That’s how many it would take to keep me alive. 70 pills to bleed at a minimum. 70 pills so I don’t live curled up in abdominal pain. 70 pills so it doesn’t feel like my guts are going to spill out onto the bathroom floor. For me, that’s what it would take.
When I was diagnosed with Crohn’s Disease, this is the life I was given. It is a life many with autoimmune diseases know very well. It is a struggle, and an immense suffering that manifests itself in many more ways than anyone on the outside could even begin to imagine. For many of us, the story is the same. Our medical treatments are designed to keep us alive, but they don’t make us feel like living. That is a fight that we have to carry on ourselves. My 70 pills did a semi-acceptable job of keeping my body going, but the mental and emotional struggles of this life have been immense. Out of some sort of misguided pride, I often find difficulty admitting this aloud and do not present it as a problem to those in my life, but it is a struggle that I suffer from today as much as I ever have. The teenage depression and anger I felt at diagnosis have only become bad habits and deep-seeded psychological torment in my adulthood. I often find myself calm on the outside but constantly screaming internally. I feel such fervent disdain for the circumstances of my life. Even as I write for this website and conduct research, all these things to try and live by example and fight for a better world for those with Crohn’s, I do not feel like a person to be looked up to. My pain has turned me very bitter, and difficult to love. The emotional toll has left me drained, and otherwise unfeeling to many things others would be more sensitive to. It seeps into my personal relationships; connections and bonds I now fail to maintain. In life and for my website, I strive to demonstrate a warm and driven passion for my life and fight with Crohn’s Disease to try and help inspire others. But in reality, I like anybody else in the same situation, am not in control of this disease and not in control of the suffering it brings me. Most of the content I try to write is for uplifting this autoimmunity community and furthering the good fight. This is not one of those entries. This is a confession, that things are not alright, and that life is god damned hard.
My 70 pills were a chain and ball. All treatments are. That’s how I felt and I’ve carried that with me for a very long time. Ultimately, I was limited to what I could do with that supply. Constant thoughts of can I do this or go there and for how long with what drugs I have available. Will they be available? Will they do there job? You feel defeated, unable to navigate the world with the freedom that others have and don’t nearly take advantage of enough. I, for 8 years, have continuously felt limited in ways that are both excruciating and horridly embarrassing. I can barely bring myself to go camping out in the wilderness. I have to worry about how I would manage my need to violently evacuate my inflamed bowels outside in the woods. Believe me it is not easy to be in the wilderness with an active, severe inflammatory bowel disease. A fully functioning restroom is essential and almost always has to be within my reach. I frequently dream of hiking long portions of the Appalachian Trail or the Pacific Coast Trail, and as it stands now, I don’t see myself being able to do those things. And it destroys me. The burning of your soul that occurs when you see these things you never knew you wanted and now it is as if you cannot attain them, is an unbearable inferno.
Sometimes, I just feel useless in life. I suppose everyone feels that way at one point or another. Recently it has been more often than not, though. In these times I often think of the song Helplessness Blues by Fleet Foxes, one of my favorite bands.
“What good is it to sing helplessness blues?
Why should I wait for anyone else?”
It suggests that it is useless to complain about the lack of control and nature of one’s life, and that you have to take it into your own hands. I try as hard as I can to do this. But as I type this I am in one of those time where I can’t help but feel deep inside me that there is too much to overcome. For many years, I have suffered chronic depression. I will stop everything, let the world go by, and just stay in my bed. Hide from the world. Unmotivated, and uncaring. To achieve any of my goals in spite of this has been the greatest tribulation of my life. There are days where I am a festering corpse. I lay there, intestines screaming, gut in hand, teeth clinched, incapable of normal human motor function. This position has become too defining of my life. Too familiar.
I have loathed myself. For a disease I can’t control. For depression I can’t overcome. For not seeking out better treatment. For not giving myself the chance to just “focus on myself and my health”. I wallow like a miserable fool. I am easily upset and have easily avoidable clashes with those that I love. When something awful happens, and It appears to me to be a result of my Crohn’s, I think about dying. I fear colon cancer will handle that for me someday before I am ready. Suicide has been far too casual a passing thought for me these past years. When I am really suffering, and life is not how I want it to be, I think how would it not be better to just die? I know that it is stupid and wrong. I know it is never the answer. But in the midst of it all, you just want it. I convince myself I don’t do it because I am strong, but really I think I am too cowardly to try.
Recently I applied for a scholarship to help fund my Master’s. It was $15,000 to 45 people with different autoimmune diseases. I didn’t think there were 45 people who would apply that were better qualified than me. Everything I have worked for. The absolute dedication I put forward these past years. I not only lived with my disease, but I have lived for fighting it. Research, advocacy, pushing a career path based around the fight against Crohn’s. And I didn’t get it. It was a very low point for me. It still is. It made me feel like my struggle, and all the fighting I have done was invalidated. Have I really achieved anything? Will I ever be able to overcome this life? The irony that I was suffering an intense disease flare up when this happened was a certain level of irony that felt unbearably tragic and painful. It was hard. And it is going to hurt for a long time. And my bowels are going to keep hurting for a lot longer. I continue to dream of a day where it gets easier.
I do not know what I really wanted to say with this entry. Obviously, life is hard. And Crohn’s is a B-I-T-C-H. I guess, I just really needed to vent. To not where my fighting the good fight hat for one night. That sometimes it is just too painful to act happy despite the disease. To let people know that I do have some problems, even though I’ll probably say I am fine when you ask. And that I am never in the business of asking for pity, but on this one occasion that even if I say that I am fine, that I will always appreciate it if you give and extra little encouragement when you talk to me. I think it could go a long way for a lot of people who don’t feel like admitting their problems, and they don’t have to have a disease. It just goes for everyone. We all have struggles.
If you wanted to know, I do not currently take those 70 pills anymore. At least not all of them. My treatment path has been a long and winding road, and I am traveling it looking for new ways at the moment. Despite all my sadness and frustration, I am hopeful that path will lead me to the life I want very soon. Hope is the best tool you have, even when they offer you 70 pills to live.