I've been thinking about this a lot recently. How, in my life, there are a series of identifiable moments when someone said something and it opened up the world in an entirely new way. These are often called "aha moments" in the feminist community. I've had a lot of these moments. Not all of them have been these incredible moments of clarity that allow me to better identify and speak about the injustices of the world, many of them have been much more personal. Instead of these sweeping realizations, they are slight awakenings. This does not mean that they have had a smaller impact, however. In fact, I think these moments, more than the grand moments, change the way I live my everyday life.
I've had a few of these moments in relation to Crohn's, and I know I'm bending the prompt (to pick a quote and write about it) a little bit here, but I'm having a hard time choosing which of these moments was more important to developing my understanding of what living with a chronic illness means. I also know I've written briefly about at least one of these before, but bear with me. I think I have some new stuff to say.
The first comes from my doctor here in Chicago. It was my first visit to him and I had put it off so long that I was barely functional. At the end of my visit, after he had examined me and was getting ready to send me off for labs and to get a CT, (that's right, he got me in for a CT that day. That's how cool this guy is.) he looked me right in the eyes and said that none of this was my fault. That I did nothing to cause my illness and that I should not feel responsible or guilty. This was revelatory. I am not responsible for this mess.
Now, he did not mean this to be an excuse to keep ignoring my illness. He just absolved me of feeling like having a disease was something I had done wrong. That I had really screwed up when I was diagnosed with Crohn's. I don't even know if I realized before he said this how completely guilty I felt about having a disease. Like I was this burden on everyone around me and that I should've been able to do something about it. This was the beginning of my coming to grips with Crohn's. It took about four years and one fantastic doctor, but I was finally on my way to actually understanding what it meant to live with a chronic disease.
The second and third quotes are closely related. Each comes from one of my parents. The second is from my dad, who, along with several members of my family, also has a chronic illness. I was home for break and he asked me how I had been feeling. I think I replied in some kind of vague way about how chronic disease sucked and he replied, "Yeah, it's rough." Or something really close to that. I know this sounds weird, but this was the moment I realized I wasn't alone in this experience. Like I said, many of my family members have a slew of different chronic diseases, so it had always just been a presence in our lives. It wasn't something we really talked about at great length, it was just there. I knew it was there, all around me, but it was more theoretical. Intellectually, I understood that my dad and other family members had diseases similar to mine, but it wasn't something I really felt until that moment. I hope I don't sound phenomenally self-involved here... I'm just saying, it was a big moment when I understood that it wasn't just me. People all around me were having very similar experiences.
The last one comes from my mom. Again, I was home for break and I had just discovered Disability Studies. I was devouring Lennard J Davis' Enforcing Normalcy: Disability, Deafness and the Body. We were all sitting at the kitchen table and I was excitedly telling my family about Davis' theory that disability was not an either-or situation, that it was a continuum on which everyone had a place. My mom smiled at me, listening patiently as I excitedly explained these new ideas and what they meant for my research paper. After I finished, she sort of just said "duh." In a much kinder, more eloquent manner, but that was the jist. There I sat, at a table full of my family members, all of which had lived most of their lives with illness, either directly or indirectly, talking about my research and what it meant in a cultural context, not realizing that I had practical evidence of my research sitting all around me.
This moment taught me two things. First, I clearly need people around me who can take me out of the theoretical and ground me in the practical. Second, not only are there other people out there with experiences very similar to mine, but everyone experiences disease and disability in some way. Certainly, our experiences come in many different forms, but it is always a presence in our lives, whether we realize it or not. I've said it before, we all have things we deal with, mine is just diagnosable. The truth is that I can't take credit for that thought. That was my mom.
I've had a few of these moments in relation to Crohn's, and I know I'm bending the prompt (to pick a quote and write about it) a little bit here, but I'm having a hard time choosing which of these moments was more important to developing my understanding of what living with a chronic illness means. I also know I've written briefly about at least one of these before, but bear with me. I think I have some new stuff to say.
The first comes from my doctor here in Chicago. It was my first visit to him and I had put it off so long that I was barely functional. At the end of my visit, after he had examined me and was getting ready to send me off for labs and to get a CT, (that's right, he got me in for a CT that day. That's how cool this guy is.) he looked me right in the eyes and said that none of this was my fault. That I did nothing to cause my illness and that I should not feel responsible or guilty. This was revelatory. I am not responsible for this mess.
Now, he did not mean this to be an excuse to keep ignoring my illness. He just absolved me of feeling like having a disease was something I had done wrong. That I had really screwed up when I was diagnosed with Crohn's. I don't even know if I realized before he said this how completely guilty I felt about having a disease. Like I was this burden on everyone around me and that I should've been able to do something about it. This was the beginning of my coming to grips with Crohn's. It took about four years and one fantastic doctor, but I was finally on my way to actually understanding what it meant to live with a chronic disease.
The second and third quotes are closely related. Each comes from one of my parents. The second is from my dad, who, along with several members of my family, also has a chronic illness. I was home for break and he asked me how I had been feeling. I think I replied in some kind of vague way about how chronic disease sucked and he replied, "Yeah, it's rough." Or something really close to that. I know this sounds weird, but this was the moment I realized I wasn't alone in this experience. Like I said, many of my family members have a slew of different chronic diseases, so it had always just been a presence in our lives. It wasn't something we really talked about at great length, it was just there. I knew it was there, all around me, but it was more theoretical. Intellectually, I understood that my dad and other family members had diseases similar to mine, but it wasn't something I really felt until that moment. I hope I don't sound phenomenally self-involved here... I'm just saying, it was a big moment when I understood that it wasn't just me. People all around me were having very similar experiences.
The last one comes from my mom. Again, I was home for break and I had just discovered Disability Studies. I was devouring Lennard J Davis' Enforcing Normalcy: Disability, Deafness and the Body. We were all sitting at the kitchen table and I was excitedly telling my family about Davis' theory that disability was not an either-or situation, that it was a continuum on which everyone had a place. My mom smiled at me, listening patiently as I excitedly explained these new ideas and what they meant for my research paper. After I finished, she sort of just said "duh." In a much kinder, more eloquent manner, but that was the jist. There I sat, at a table full of my family members, all of which had lived most of their lives with illness, either directly or indirectly, talking about my research and what it meant in a cultural context, not realizing that I had practical evidence of my research sitting all around me.
This moment taught me two things. First, I clearly need people around me who can take me out of the theoretical and ground me in the practical. Second, not only are there other people out there with experiences very similar to mine, but everyone experiences disease and disability in some way. Certainly, our experiences come in many different forms, but it is always a presence in our lives, whether we realize it or not. I've said it before, we all have things we deal with, mine is just diagnosable. The truth is that I can't take credit for that thought. That was my mom.
Man, you have some smart parents. Especially that mom. :)
ReplyDeleteYep. They're pretty great. I like them. ;)
DeleteI guess I didn't realize I never commented on this before, but after re-reading a lot of your stuff, it is so close to me to understand feelings of guilt/being a burden (more fodder for the new blog :-D?) Of course I can't say for sure, but I have an inkling that people who don't suffer from chronic conditions don't feel the same weight of guilt. I know for me when I go through that, I feel it in my chest. It's like a vice. It's a sharp intake of breath. It's an "I'm sorry" that isn't warranted. I also believe the realization that there is *no* reason to feel so guilty is a huge step in the beginning stages of accepting a chronic condition. Well put, friend!
ReplyDelete