I think you’re a friendly person, easy to get along with.
(Thank you.)
I’m not trying to be nice. I’m serious. And, you’re welcome.

So said Dr. Mark this afternoon.

Today was a crazy day. I spent five hours going from Dr. Leo’s office to Dr. Mark’s office to the pharmacy. Considering that they’re all five minutes apart by car, that’s a lot of time parking and navigating the medical scene.

I was exhausted before I started. Having chest and breast pain for days on end is not fun; it’s miserable. And it sucks the energy out of you. Plus, if you have other people in your life being a pain, it only makes it worse. Now I’m more exhausted (if that’s even possible). But I’m grateful for today’s experiences. I know that even in the most vulnerable places, I’ve found ways to grow as a person.

It’s hard for me to be genuine in a doctor’s office. Half the time I feel like I need to act a certain way to get the physician to believe that I have a certain problem. So visiting the doctor becomes a role-playing exercise. Plus, being in an exam room automatically makes me feel vulnerable and very, very small. It’s taken a long time for me, but I’m finally figuring out how to face these situations without having myself hidden behind eight doors barred, chained, and deadlocked shut.


Stop 1: Dr. Leo’s exam room. We sat in the exam room and had an interesting conversation on the progression of symptoms, the development of graduate school drama, other medical treatments and interventions, and potential future directions. I made a comment about my frustration with my adviser being exacerbated by memories of similar interactions with my father. He asked me to share about my background with my family.

Talking about my family is hard. I love my parents and have a lot of amazing childhood memories. My parents put a lot of energy into their children and sacrificed a lot to make sure that we had the best opportunities. My mom left her job when she was expecting me. My dad worked from home from the time I was one year old. My parents always included us in all their church service, so we knew a lot of their friends as well. My parents supported me and my two younger sisters through various hobbies, helped us learn several languages (including languages they didn’t even speak themselves!), took us to piano lessons as far as 45 minutes away, and attended swim meet after swim meet. I was homeschooled for seven years, not just in the self-taught way, but in a way that made the most sense for me and for the family as a whole. I have grand memories of family vacations up the East Coast and to amusement parks. We’ve always been really close-knit.

So it’s hard, or near impossible, to understand why we’re barely on speaking terms these days. In full disclosure, there are tons of things involved. But, the short version is that the family cracked over my illness. It changed a lot of things when I got sick in late high school. My parents actually picked up everything, sold their house, and moved to the city where I was starting college so that I could attend school while still living at home. We each individually tried to come to terms with the presence of a chronic illness, but it was really hard to make sense of this amorphous thing that no one could pinpoint. It didn’t help that doctors kept telling me and my parents that I was “just a whiny teenager”. Eventually, my illness became the elephant in the room (especially when my sister complained that we talked about it all too often.) Over time, it became easier for each family member if it just didn’t exist. Except. That removed any explanation for why I behaved like a sick person. I did my best to be the perfect daughter and not complain or “act out”, but inevitably something would happen, I would be blamed for intentionally making people’s lives miserable. So, I turned to other people for support, even started to spend the night at other people’s houses. I started pursuing medical care behind my parents’ backs. It meant that I was finally getting the help that I needed. But it was hard and still seems so wrong. I wish my parents had been there to hold my hand or cheer me up when I was being screened for MS; I wish they had been there for me for my first invasive diagnostic procedure. But they weren’t. And they’re still not.

Anyways, I told Dr. Leo the story above. Maybe in a more convoluted order. And perhaps kind of teary too. His reaction was really helpful to me. There was a long period of silence. He had this grave expression on his face. Then he said in a quiet tone, I really appreciate that you shared that with me. And that was it. I know he could read between the lines to understand how it all fit together and how it made me who I am now. But it means so much to me that he didn’t say much. No judgment. No suggestions for how to alter things. No trite categorization. He just acknowledged how difficult it was for me to share and how it’s as much or more a part of my present as it is of my past.


Stop 2: Dr. Mark’s XXXXL exam room. (They really like putting me in there!!)

A long visit. We talked about a lot of things: specific symptoms that were bothering me a lot now; long-term treatment plans. We spent a good deal of time looking through other doctor’s chart notes and talking about how they fit into my case & current treatment plan.

Something in Dr. Samuel’s notes made him ask me if I had normal relationships with other people. Responding to my puzzled look, he said, You have friends, right? That’s when we had the opening exchange. We even reflected on Alana and how she’d come with me one time. So, yes, there are people in my life whose disbelief or unwillingness to take me seriously creates tension in my interaction with them. Family. Dr. Voluble. The lion. But, in general, Dr. Mark still wants to be my friend and says that other people should as well. (Yay!)

A bit later, as I was getting together all my stuff to leave the exam room, I looked up to see him standing in the doorway looking at me. So I asked him, Was there something else you wanted to say?

He looked at me for a long time. And then said, Abigail, don’t let people who don’t believe you weigh you down. Ok?

That was the moment today when the tears really came. Sure, the pain is miserable. Talking about my family was hard. Greeting Aaron and the others at vespers was sweet. Being supported by Gretchen is a godsend. But it’s the moment of being believed. Knowing that I’m 100% capable of being myself all the way through. The freedom to be real, to stop hiding behind different facades (including “the perfect patient” facade.) Adding that to reminiscing with Dr. Leo about family and the inherent tension between grief and love made for an amazing day at the doctors.

It’s true that we still don’t know where all the massive inflammation comes from. It would be nice if my pulse didn’t escalate every moment I was stressed. But we don’t always have control over those things. We just have to make the best of the cards we’ve been dealt and that starts with being real.

from my heart,
Abigail Cashelle

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