Still coming to terms with illness…

Reflecting on the past few years with a classmate, one question kept coming back to me. What changed? What made everything so different? And the answer was so incredibly obvious — I got sick. And over time, it took over more and more of my life, including how I spent my time, who I spent it with, and what I was interested in.

Somehow, it’s still difficult to come to terms with that. I couldn’t even say it out loud. Why? Why is that so hard?

Is it the desperate need to be in control of my life? Laurie Edwards in Life Disrupted discusses how this need causes us to sometimes explode over small mistakes like “ruined” fast food orders.

Is it the desperate desire to be defined not by my past or my circumstances but by who I really am? As a young woman in her mid-twenties, I definitely wish people would take the time to really get to know who I am below the surface. Not only is that what I can control, but that part remains the same regardless of my heritage or my health.

It seems that that’s what made certain relationships explode. Maybe that’s where the tension with my family lies. Maybe that’s what I appreciate about the doctors I’m working with now. It’s definitely something I appreciate about Timothy.

What do you think? What’s the biggest barrier to coming to terms with illness?

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Hard Day

Today was just all-around a hard day. By the time Timothy & Grace came over to my place, I was lying on my futon, wishing the gnawing feeling in my abdomen would just go away. Plus my energy was really low.

They didn’t have time to stay. They were dropping off some of their furniture at my apartment since they’re moving this week and needed someone to store it.

I’m so happy that they came even if I didn’t have the energy to get off the futon. Sure, they took out a week’s worth of trash & two weeks’ worth of recycling. I’d be procrastinating on hiking to the dumpster in order to save energy to do things like attend their going away party yesterday. I’ve laid awake at night dreaming of hiring a service to take out my trash. It’s really a lifesaver for me. And I love the fact that I have three times as much furniture in my living room now.

But more than that, I’m just happy that they came by. To see their smiling faces. To be comfortable being in a vulnerable position in front of them. (Rememberwhen I was scared of meeting Timothy alone?) To know that even though they couldn’t stay, they’re keeping me in their hearts and prayers. To have physical evidence that they’ll visit again some time in the future (to collect their furniture!!) To be reminded that even when I’m on the futon, I’m not alone — I’m as much a part of their community as they are of my life; I’m praying for them and their future as much as they’re praying for me.

~ Abigail

Humility in My Walk

One Scriptural passage has been echoing in my heart all week:

Not that I have already obtained or have already been perfected, but I pursue… Brothers, I do not account myself to have laid hold: but one thing I do: Forgetting the things that are behind and stretching forward to the things that are before, I pursue toward the goal for which God in Christ Jesus has called me upward. Let us therefore, as many as are full-grown, have this mind; and if in anything you are otherwise minded, this also will God reveal to you. Philippians 3:12-15

In all the things that I’ve faced this week and all the people I’ve interacted with, these verses kept rising within my being. I realized that so often, I act as if I’ve mastered a certain body of knowledge or know the perfect way one ought to conduct himself. Even as I read others’ stories and study, my attitude sometimes is one of a person seeking validation and justification from others’ standards.

But this attitude is not helpful. It’s not helpful for me to grow, to face the challenges in front of me. It’s certainly not helping making me a pleasant and natural member of a group, unless the group is mesmerized by my every word.

My new prayer is, Lord, grant me such a spirit as Paul had. Save me from my own sense of superiority. Open my heart to new knowledge and directions, to different people. Keep me actively seeking You in each step I take.

~Abigail

Just for fun…

I was browsing blogs today, (especially after I realized that it was the one thing I did today that made me happy!!) and came across some interesting quizzes. What kind of medical doctor should I be? and Should I go to medical school?

Here are my results:

Yes, it turns out that I was born to be a pediatrician. Why? Because I’m extremely fond of children and like coming home with the satisfaction that I “cured” something that would have gone away on its own in a week. At least that’s what the quiz says. I’m pretty sure it’s because I said that my hero was “Big Bird”.

Before you start worrying that I might actually become a pediatrician, I should warn you that the second test said that it is very unlikely that med school is the right choice for me. Here is the exact wording:

Your results indicate you probably shouldn’t go to med school. If you go, you might be taking the spot of someone else who did better on this internet quiz than you did. But don’t worry, there are lots of other careers that would make better use of your set of skills, such as a tattoo artist, career criminal, circus freak, or systems analyst.

I’m pretty sure that’s because I said that I need to sleep in order to live.

Curious whether you could be a better physician than your own? Take the tests for yourself!!

He Made Me Happy

Sometimes, it’s the little things in life that really matter. Or, Tabitha tells me that the little things matter more to women.

I realized today at vespers that there’s one person who really makes me happy. And I finally figured out why. Aaron always greets me:

Peace to you Abigail.

Everyone else just says the traditional Peace, but he takes that extra moment to say my name. He’s not just recognizing that we should be at peace with each other or that there exists peace among Christ’s brethren. He knows who I am, and he’s genuinely happy to see me (and not in a creepy way either). With one extra word, Aaron tells me that I matter to him. That makes all the difference.

So happy,
Abigail

Act Two, Scene 1

Setting: New scene. Doctor’s office: very narrow, very crowded. To one side is a book case filled with books on chronic illness & childhood. There’s just enough space for the door to open, a patient to sit, a doctor to sit (at his moveable computer podium), an air vent to be on the floor behind him (usually with his briefcase covering it) and then a window to let in some light.

As the scene opens, the physician opens the door and motions the female patient to walk into his office. As they’re getting settled into their assigned spots, the conversation opens:

Doctor: I really like your bag. What’s on it? I don’t usually notice bags, but I really like yours.
Patient: Thank you. (Holds book bag up.) It’s pictures of old sewing patterns.
Doctor: Very interesting. I really like it.
Patient: Thank you. I made it myself. (thinks to self: This is the first time anyone’s noticed it even though I made it three months ago!!)
Doctor: Wow. Impressive. You have a second career right there if history doesn’t work out. Not that it wouldn’t or that we would need to talk about that… but very nice.

As conversation continues, move spotlight to stage left where another doctor sits at his office, sifting through information regarding the same patient’s case. (Be dramatic and use creative license.) On his computers are emails from the patient regarding inflammation, depression, fatigue, lack of appetite, together with his replies of suggestions of medical follow-up and symptom management. On his desk are papers from Australia regarding a new diet interspersed with papers on his main research topic: the esophagus. Throughout the scene, he continues to glance at the clock and the calendar, wishing that healing didn’t require quite so much patience. And, is there anything else he’s missing?

Move spotlight back to center stage:

Doctor: You’ve been diagnosed with Ehlers-Danlos syndrome, right?
Patient (looking confused): Yes?
Doctor: Given your symptoms… Other patients of mine who have this… There’s this paper that I was looking at earlier today… You have the diagnosis, right?
Patient: Yes, but it’s one of those that’s contested. Some people think I have it, some don’t.
Doctor: Either way, it might be helpful to have a term that connects all your symptoms together. And Ehlers-Danlos is systemic. It might explain the aggregate of your symptoms. But it definitely would be something you could give to disability services or other people at the university and they would understand as a tangible disease. It make might it easier for them to “understand” and then accommodate you.
Patient (not convinced): Ok?
Doctor: Let’s see. Here are some of the suggested lifestyle amendments: be active, proper sleep hygiene, hydrate often, high-salt diet.
Patient: Yes, those all sound familiar. They’re all things I try to do (in between all the other things I’m trying to do!)
Doctor: Why don’t I print this paper out? We can each read it, and if it’s applicable to you, if it resonates with your experience, then maybe we can use it as a way to deal with disability services. Plus, it might help with an actual treatment plan. Sound good?
Patient: I think so.
Doctor: I can write a letter (if we decide we need that) that says you have this disease. Of course, they may want a letter from a rheumatologist who actually specializes in connective tissue diseases, but I’m more than happy to say that you have this disease.
Patient: Thank you very much. I’ll read the article and be in touch.

Curtain.

This is more or less how my visit with Dr. Samuel went down today. I’ve been really depressed lately what with family visiting, church drama, fighting for anti-discrimination with the university (and losing), traveling, etc, not to mention medical stuff!! So we talked through all of that (it took forty-five minutes!) and then talked about bigger issues like treatment plan and advocating for myself.

Talking about sewing and hobbies at the beginning calmed me down a lot. It’s been really hard to juggle all the different things that I’ve been thrown this past month, let alone figure out what to do about it. It was nice to talk about something straightforward, something I already succeeded at, and something that was about me as a person. I love the feeling of connectedness that comes when I talk to someone about things I love (and when they truly listen), and I really want that in a doctor-patient relationship because I feel safe and cared for, just on a human level.

It’s a bit amusing to have homework from a doctor where I’m reading a medical paper on symptom management. But it reminds me that as a chronic patient, you become a member of the team. You’re not a layperson visiting a magician. You’re a team member contributing data and observations in a group setting where the medical professionals listen and assess. All members ask questions, all members suggest diagnoses. All members tap into their experience (whether personal or professional.) All members have work to do outside team meetings. And it all works a lot better if we know each other, just a little bit. Because we’re all in this for the long haul.

~Abigail Cashelle

P.S. I have to pick up Tabitha from the airport right now, but hopefully I’ll post a picture of the awesome book bag soon. 🙂

Peace: He gives us Peace

Most holy God, the source of all good desires, all right judgments, and all just works: Give to us, your servants, that peace which the world cannot give, so that our minds may be fixed on the doing of your will, and that we, being delivered from the fear of all enemies, may live in peace and quietness; through the mercies of Christ Jesus our Savior. Amen.

Blessed by the God of Peace,
Abigail

a simple prayer

…we pray, give us such an awareness of your mercies, that with truly thankful hearts we may show forth your praise, not only with our lips, but in our lives, by giving up our selves to your service, and by walking before you in holiness and righteousness all our days.

Petitioning God for an open heart and a humble spirit,
Abigail 

What changes, what remains

Trapeze circusAs I muse upon God’s work in my life these days, I realize that my life is always changing. In service this morning, the priest likened transitions to moving from one trapeze bar to another. The thing about trapeze artists is that they’re always moving. If they’re not moving, it’s because they’re taking a break from being a trapeze artist.

In like manner, we’re always moving. My life is always changing; there’s an ebb and flow to each day. In season, out of season. Up and down. But also, lateral moves. In one town, then in another town. Now a sister, now a daughter. First the receiver, then the giver.

I’ve been drowning in all the movement and lots of little details. I’ve only begun to realize how deep the pain is because I’ve started crying on the phone with various people. I talked to Timothy about it a little this morning. He didn’t have a whole lot to say, but one thing really struck home. He said, We’ve been praying for you twice a day here at the church. And, I realized that no matter how far away I am or how low I feel, God is still there caring for me, and I’m part of a community who remembers me and stands with me every day, even if they can’t understand how I feel and have no real solution. The experience of that is priceless and beautiful.

In awe,

Abigail

Alana’s Visit

It’s hard to put into words how much I enjoyed Alana’s visit. Let me put it this way: by the end of the week, every single doctor of mine knew that my best friend was in town and I was actually sleeping through consecutive nights!!*

entertaining herself during one of my appointments

Alana’s visit was a combination of her accompanying through daily activities, catching up on the latest goings on in our communities, and just having fun together. Here are some things we did:
– visit to the Office of Disability Services at my university
– visit to Dr. Mark
– vespers service, including meeting Timothy
– visit to my counselor (where she hung out in the lobby)
– one-on-one class with my adviser (where she entertained herself on the porch)
– Sunday morning church service
– grocery shopping & cooking
– clothing shopping at the outlet mall, the thrift store, and the actual mall
– lunch with friends from church
– built a bookcase and rearranged the furniture in my bedroom
– played violin & made a violin-turned-viola back into a violin
– sewing projects
– pieced together most of a quilt for Quilts for Kids
– watched movies including PostGrad, TinTin, and Puss in Boots
– fingernail art
– groaned about the ways in which well-meaning matchmakers try to set us up (while she was here, someone tried to introduce her to a nice man with a cane who happened to be from the same state!!)

One thing I realized is that we’ve gotten to know each other by spending a lot of time together and really listening to the other person. She got me the perfect birthday present based on previous conversations and my (personal) Pinterest board. We’ve met a lot of each other’s friends and accompanied each other to weekly activities. So it didn’t matter that the two different church services we attended were rather dissimilar to those of her home church. It didn’t matter if there were days where I still slept half the day or if I just watched her cook meals for me day after day. She was there to be a part of my life the way it actually was, and if she could help make things easier for me, she was more than willing to do so.

violin-strung-as-a-viola
Because of this, we could focus on the good things in life and make light of some of the more absurd things that happened that week. The fact that we ran into my neighbor while trying to rent a Redbox movie, and he had no clue who I was? The perfect scenario to joke about matchmaking and the ironies of apartment living. The fact that Dr. Leo promised to call some time that week but by the end of the week I still hadn’t heard from him? Enter a comment on him being like an incredibly unreliable boyfriend; I knew he would call when he had the opportunity, but it was amusing to be hanging on the edge of my seat for days on end. The fact that we had sewing projects all over the living room floor? We had created an obstacle course of fun stuff all over the apartment!! It was dangerous to be sure because a misstep could land you on random pins or a teetering stack of stuff, but it reminded us every minute of all the great plans we had of crafting and creating.

So grateful,
Abigail Cashelle

*If it’s not already obvious, I talk about the important friends in my life a lot. My best friends and people I interact with frequently all hear about each other.

Plus, as a chronic patient, I’m on close enough terms with my physicians to talk to them all the time. Of course we focus on my medical condition and how things are progressing, but they feel comfortable and familiar enough to joke around about the unpredictability of my condition and to tell me about the adventures of moving into a new house.