I took another personality test today. And apparently, I’m the equivalent of an octopus (INTJ). And you know what? I like it. Mostly because I saw this cake floating around on facebook. And I feel like I’m always working on 6-8 things at once. (Having 8 arms definitely helps with that.)
The authoritative test has this to say about octopi:
INTJs are independent types, wildly intelligent and creative — but rather un-interested in what anyone else is doing. They are often considered the most independent of all the personality types, and they work best when given freedom. They are acutely aware of their own intelligence, as well as what they don’t know, and their passion often lies in conceptualizing ideas and processing complex theories.
While I’d like to think that I do spend time thinking about other people and listening to their stories, it might explain why I make a terrible tutor. And it also goes along with the fact that I am very aware of what I know and what I don’t know, what I’m doing and what I’m not doing. And I like to conceptualize and process complex theories, even just for fun.
Another day in the life,
Abigail the octopus
P.S. I just remembered the EDS is sometimes shown as an octopus disease because octopi don’t really have bones. So that fits as well!!
I have this problem: I keep getting kicked out of doctor’s offices. They tell me that either I’m perfectly healthy or they don’t know how to help me. Or, there are some who don’t have the time or patience to help me. And it’s frustrating. It costs a lot of money and a lot of spoons to go to the doctor. And I’ve reached a pretty intense burnout. I do have a physical illness that has a huge impact on my life. Why won’t anyone take the time to understand and figure it out???
Today I found part of the answer. I was tutoring a student on the graphs of trignometric functions and she just was not getting it. No matter how many times I explained it, how many different ways I tried to put it, or how many examples we went through, she was just as confused as ever. And I found myself thinking, Could she just go away already?? If she left the tutoring room, I could help someone else. I could actually be accomplishing something. And I wouldn’t be banging my head against the wall over and over again. Could she just leave already or get un-dumber or something????
And I realized that I was making the same mistake that I was critiquing the doctors for. I wanted to create an excuse to get rid of this student. Either she just didn’t have a problem any more or I was better off investing my time in someone else because I didn’t know how to help her. And the thing is that I excused myself by making it about me and maximizing my potential. Or, she’s better off with someone else. Or, she’s never going to get help so I might as well move on.
And there it is. I made the same error as the doctors. And the ravenous lion actually.
I don’t know how to change my attitude. I know I’m working on my patience. But it was eye-opening to be on the other side of the issue.
Still a lot to learn,
the hexagon quilt I was working on
I did it!! My first time quilting in public.
I’ve been working on a hexagon quilt, and I’ve been piecing the whole thing together by hand. I brought a portion of it with me to my therapist’s appointment. I knew that I would have some random downtime (10 minutes here, 15 minutes there) and so I figured that I could make some progress on the quilt. And I had a really grand time.
Because I was quilting in a public space where most people just sit there waiting for their turn, a number of different people came up to me and asked to see the quilt. My therapist wanted to see it, and I got to show her how I incorporated different fabrics that held different meanings for me. Other patients and some of the staff stopped me to take a look. I even got to show the project to a little girl.
All in all, it was really cool experience. I definitely plan to continue hand quilting projects so that I can craft in public. I finally figured out what Future Girl is always raving about!!
I’m really excited about the opportunity. I feel like there’s this whole part of me that hasn’t really emerged outside my room and maybe the internet. I read a lot of blogs and books to get ideas, but I’m mostly making things up as I go. It’s awesome to get validation for what I do. But it’s even nicer to put that creative side of me out for the public to see. I think it’ll be a while before music really emerges again for me, at least from a performance perspective. But this is something totally new. Something I only picked up because of my illness. (Well, I always wanted to learn to quilt. But illness finally created the time and the patience to teach myself.)
A pretty happy day overall,
so I’ve been working on a major quilting project. (Actually, I’ve been working on 6 different projects, but what’s new?) Anyhow, I discovered today that if you want to sew tightly woven fabric like vintage sheets, you should use a smaller gauge needle. Because the diameter of the needle is smaller and then sewing is less like punching holes in the fabric and more like going between the fibers of the fabric!! Who knew?
It’s been an Eeyore day. Which somehow translates into shopping for vintage or unique Eeyore stuff online. (What can I say? I love shopping.)
Anyhow, the find of the day: the Hundred Acre Wood yarmulke:
Unless I have the desperate need for some jelly jars from the 1990s…
these could be yours…
Someone asked me recently why I keep fighting. How is it that I find the energy or the motivation to go to another doctor’s appointment or try yet another medication? Why hasn’t the accumulation of nearly eight years of disappointment made me bitter or caused me to give up?
It’s an interesting question and one that I don’t have a clear answer to. But, a few things come to mind. First, one of my close friends in high school told me about her dad (shortly after hers had passed away.) He had diverticulitis and found out in his late teens. He had concluded that since he wasn’t going to live very long, he was just going to enjoy life. So he smoked and did drugs and didn’t take care of his body. And while he died fairly young, his daughter was in college when it happened. He spent most of his adult life suffering from the physical consequences of not taking care of his body. I remember her encouraging me not to be like her dad. Don’t give up Abigail, she said. Don’t spend your whole life waiting to die. Maximize the time that you do have. You’re so talented. Do something with that. Don’t be miserable your whole life. And that also means taking care of your body. Pursue medical treatment. Try to get help before you reach the point of no return. And be honest.
It was a strange conversation. But I remember it really well. Her words really made an impression on me. And the idea of her dad giving up when he was 19, only to live another 30 years seemed like a waste.
I think fear also plays a fairly big role as well. I so desperately want the illness to be under control our at least monitored. Then it’s not like I’ll be fighting on my own. And if something were to happen, I wouldn’t be at the mercy of whoever or whatever. It’s a way to fight for independence, a way to argue that I still have control over some part of my life.
And the last thing is that I’m a doer. I like to be successful at whatever I take on. I want to be the best that I can possibly be. This is particularly true in situations where I’m not there voluntarily. I might be a bad choice for a babysitter but I’m going to be the best babysitter I can possibly be. (I think that’s one thing that frustrated me about graduate school. I worked very hard, and I was excelling in the program. The ravenous lion acknowledged that, but to him it was irrelevant. He told me as much himself. And that was hard. Because it was a rejection of my primary yardstick.)
I’m still not sure why I’m the way that I am. I also know that some of my favorite physicians think I spend to much time and energy thinking about my illness or trying to get help. But these are at least some of my thoughts.
That, and how could I not? Sometimes I think that’s the more relevant question. I’m just making the best of an imperfect world.
Any thoughts or suggestions?
It’s time for another edition of Patients for a Moment‘s blog carnival. This month, Lorna at Life with RA asks: How has your life changed since your diagnosis?
It’s a really hard question for me to answer. I got sick around the same time I came of age. I first started noticing symptoms around my second to last year of high school but didn’t start seeing a physician until the summer between high school and college. It’s a period of life where a lot of things are changing. So, sure, illness changed a lot of what that looked like. But it’s hard to pinpoint exactly what’s different.
I’ve written about ways in which my illness has altered my life and my person before. But Lorna’s question made me reconsider what has stayed the same.
In one of my favorite movies, one of the minor characters explains that archaeology is more than just finding bones. She notes that people of the past left so much of themselves for us to find. While there are always a lot of gaps, she’s fascinated by what is left, by what endures.
That notion resonates in my heart a lot. It’s what remains that matters. That’s the core of who you are. Nothing and no one can take that away.
So here’s a list of things that I’ve noticed have stayed the same for me:
- Writing letters: I love writing letters. When I was in junior high, I used to consider writing letters my ministry. I wrote to as many as 10 friends a month!! Now I’m part of a postcard swap on Ravelry, I write my friends who are missionaries twice a month, and I still write my grandmother once a month.
- Quiet observer: I’ve always been the quiet observer. I’ve never been the loud person at the center of the conversation. But I’m taking in all sorts of context clues, so I remember lots of little details later. I can figure out what a person’s favorite color is by looking through pictures on facebook or find out if my cousin is engaged by asking the right people the right questions.
- Listening: I love listening to other people tell their stories. I always have. In fact, I’m primarily an aural learner. That means it’s really easy for me to become friends with people who are talkers. It matches my love for history. It’s made me a great student, someone who can listen to doctors or friends or whoever. It also means I have a lot of empathy. And I am on the phone a lot!
- Organized: I have always been extremely organized. I sort through information really easily. I always have numbered lists and I know how information is related to each other. I’m still extremely organized — just about different things than before.
- Heart for people: I’ve always had a heart for people. When I was younger, it was my imaginary friends in primary school or the sick children I read about in books. Now I’m the girl writing to the young man injured in the Boston bombing or praying for her doctor’s child.
- Sickness: I have never been interested in medical care. When I was in high school, I volunteered at a hospital because my parents made it sound like it was mandatory. I found the only place where I could avoid sick people altogether — Employee Health. It was all about making sure people were healthy!! But I’ve always had a huge heart for the afflicted. I’m not really sure why. But it definitely comes in handy now. Here are some of my favorite books from childhood: Curious George Goes to the Hospital by H.A. Ray; Born to Trot by Marguerite Henry (where the main character wants to ride a horse in the races but winds up in a convalescent home for children; my sister was obsessed with horses but Born to Trot was the only book by Henry that I read more than once); The Secret Garden by Frances Hodgson Burnett (where Colin “suffers” from a hunchback & Mary from neglect); The Five Little Peppers and How They Grew by Margaret Sidney (multiple characters in that book get very sick); Hitty: Her First Hundred Years by Rachel Field (at least one of the girls Hitty watches over gets sick). And my favorite part about Clara Barton was that she nursed her big brother David for two years until he regained all his strength.
- Faith in God: My faith in God and His goodness has fluctuated over the years. But it hasn’t fluctuated with my health. I’ve always had the sense that even in the worst of scenarios, He’s providing for me. He may be hiding behind the scenes, but He always shows me that He is there.
Just a few things for me that have stayed the same through sickness and health,