In Awe

Aaron was ordained to the priesthood yesterday. I was in attendance. It was amazing. Peaceful. Comforting. Profound. Simple.

O send out thy light and thy truth: let them lead me; let them bring me unto thy holy hill, and to thy tabernacles. Then will I go unto the altar of God, unto God my exceeding joy: yea, upon the harp will I praise thee, O God my God.

Psalm 43:3-4

The whole experience was unforgettable. Being part of a big community. Bearing witness to a brother’s testimony and consecration. Singing Scripture. Lifting up holy hands in praying. Give praise for what God has done: in our brother, in His church, in this place.



Interview with Another Chronic Patient

In reading through blogs of other chronic patients, I realize that so often, we’re defined but what has happened to us. Forgotten is that underneath the layer of disease and all its accompanying layers of adaptation exists a real human being with feelings. Sometimes, it’s helpful to take a glimpse at what’s at the core, who this person is at heart.

In that spirit, I took the opportunity to interview Lydia. We normally get the impression that she’s adamant about certain rights, she’s in dire need of help at home, she struggles with self-image (at least with regard to her blog), and her life is all about text (because she hardly ever posts pictures). Does this interview change your impression of her? Is there more to her than her disease?? Does she sound like someone you wish lived next door to you???

1. When you imagine yourself in a better place, what does it look like? Who’s there with you?

I recently have been imagining motherhood; I think my hormones are to blame for that one! I think about what it would be like to have a child, them as a baby or as a toddler, how it would be when they got older. I wonder whether they will look like me, or my husband; whose eyes they will get, things like that. In a way it makes me sad, because right now none of that is possible, but I still find myself idly thinking about it. That’s the general way it goes – I imagine the things I’m not capable of, but really want.

2. Name one virtue that describes yourself. Explain why.

I have thought about so many virtues that I want to be able to describe myself with, but I know how much I lack them! I don’t think that I could truthfully say “I am this…” just yet, although I want to be. In a way that has lead me to pick this one: the ability to grow. I know that I make mistakes and I always will; I hope that I will always learn from them too, and always be willing to say sorry. As I have heard quoted, “I am not who I want to be, but thank God! I am not who I was.”

3. If you gave us a tour of your hometown, what things would you point out? Where are your fondest memories?

I think I would like to point out sites of historical significance, and talk about the little stories that accompany them (the Art Gallery was accidentally built back-to-front, causing the architect to kill himself. My husband took me there on one of our first dates); I would take you to our favourite tea shop (which is sadly not wheelchair accessible, but does have outside seating). I would want to share the love I have for my city with you, and hope that you find you love it too!

4. Do you have a favorite color?

Sometimes. I really like purples, but then I also like black, and bright “azure” blue, and the green of my husband’s eyes (and so on…).

There you are. A portrait of someone who lives on the other side of chronic illness.


You’ve Got This, Part III

I met with one of my graduate student colleagues today. I needed more information on one of the major milestones on the journey that is graduate school. Both of us are frustrated by the degree to which the ravenous lion and all his colleagues are making my experience so much more difficult. If only they would stop standing in the way…

Anyhow, in the course of our discussion, we kept coming back to the same theme: You’ll be fine. No matter what it was we touched upon, the conclusion was always the same: You’ll be fine. You’ll find a way to make it work.

As much as we all wish that it wasn’t this way and as much as we all know that it shouldn’t be like this, the bottom line is that I can still accomplish what I set out to do. It might look different from other people’s journeys. It might take a different amount of time or require some interesting acrobatics. But the bottom line is the same: I’ve got this. That confidence gives me renewed courage.


just a little gem

And again, Isaiah says, “There shall be the root of Jesse, even He who rises to rule the Gentiles; on Him will the Gentiles hope.” Now the God of hope fill you will all joy and peace in believing, that you may abound in hope in the power of the Holy Spirit.

Romans 15:12-13

The best friends

Some qualities of the amazing people God has placed in my life:

this man you want to count as friend

The best friends see things and applaud you for the things you do because they know that it’s an accomplishment for you. They don’t compare your experience to others because your value is not relative.

take some time
be assured…


Dreaming of the future…

I’m sitting in Tabitha’s parent’s dining room as I’m writing this. The house is quiet now, but earlier today there were the sounds of her brother playing the piano, her other two siblings frantically learning calculus from their father, mom and sister cooking, and then some guests (I think). The day before there were even more people doing even more things. Coordinating rides. planning which movie to watch. Catching up on homework. Calling the grandparents. Planning shopping excursions. It was chaos. (Well, it wasn’t exactly a well-ordered machine.) But it was good chaos. It was the chaos that meant family. Life. Friends. Community.

Tabitha and I have been thinking a lot about the future. Laughing about where we’re going to live. Who we’re going to be. I’ve spent a lot of time in the past few weeks mulling over the future as well, thinking about different medical treatments and their potential impact on the rest of my life. There seem to be so many unknowns, that it’s difficult to make an informed decision. As Dr. Leo pointed out recently regarding my graduate school situation, a lot of those variables are not even up to me. I’m waiting to see what other people decide or how other things turn out.

But sitting here in the dining room, I’m sure of one thing. No matter what, Tabitha and I keep coming back to the same conclusion. We want life, full and dynamic. A life full of people we’re related to, people who love and support us, people who need us, and people we need.

Thinking over the past few days with Tabitha’s family, I’ve realized that life can be messy. It can defy the order that I like so much. It’s unpredictable. It’s composed of many moving parts. It doesn’t always work the way we imagine it.

As I sit in the living room and hear all the conversations or watch Tabitha’s three brothers fight over what song they’re going to sing next, I realize that it might not be ordered, but it’s definitely alive. These are real people. And that’s a good thing. Because as much as I love peace and quiet, I can’t live in a world where everything is inanimate. I think the stillness itself would kill me.

So I’m grateful for the time with Tabitha’s family. While I don’t know yet who I’ll marry or how many children I have, I do know that I’ll always find myself surrounded by real living people. It’ll keep life interesting. It’ll keep my own life full of life.


Learning in the Exam Room

I’ve written previously about moments in the exam room where doctors have taught me to speak up, to have self-confidence, and not to avoid the difficult.

I haven’t written much about what doctors have learned from me. Occasionally, there’s something really small: do you think you could keep a box of tissues in this office? But one moment stands out to me in particular.

We are on the phone, Dr. Leo & I. We are trying to sort out things related to graduate school and medical treatment. I am frustrated. Very frustrated. Too many things to do. Too little energy to do them. Overwhelmed. Needing help.

Dr. Leo is very patient. He listens. He pauses. Then he says what everyone says, You need to budget your time. Try to find a balance. Don’t try to do everything at once. In fact, only even try to do a limited number of things.

Naturally, since I’ve heard that at least a million times, I try to smile and nod (which he can’t see over the phone) but I am still frustrated. That comment doesn’t change anything.

At some point, he offers to help me schedule out the remaining requirements for my degree over time. So he asks me to send him a list of requirements (and maybe even some initial sketch over time.) Of course. Not a problem. I would love to have help with this.

Dr. Leo: Can you get it to me over the weekend? Then I can look at it before you meet with Dr. Samuel mid-week next week. Then you can bring our plan to him.

Me: [long pause] Ummm, how about I put it on the short list of things that I would like to accomplish this weekend?

[more long pauses]

Me: I would like to do that this weekend, and I agree that it makes sense. But I can’t make any promises. My illness and my symptoms are just too unpredictable.

[long pause]

Dr. Leo: Oh. Ok.

It was a light bulb moment for him. That is literally what life is like for me when I take his advice. It’s frustrating because it can mean that nothing gets done even though three days go by. If the only thing that you can do when you get out of bed is to change into a new set of pajamas and get back into bed, no matter of budgeting and being realistic can mask the fact that the dirty laundry is piling up. As are all the other things that you wanted to do.

It was an interesting exchange for me. I wasn’t trying to make this a “teachable moment”. I wasn’t trying to override his authority. I was just frustrated and being honest because I was tired of fighting.

But it became a light bulb moment. A moment for Dr. Leo to step into my shoes. A moment for him to step into my professors’ shoes and understand why having me as a student can be so frustrating. A moment for him to step back into his own shoes and reconsider how to be the best doctor, the best advocate, the best friend.

For me? It was a moment of peace. Of validation. Of friendship. Because someone took the time and made the effort to understand.

Abigail Cashelle

My Heart is Overflowing…

This has been one of the most difficult semesters of my life. I’ve been told that I could have all sorts of different medical problems. I all but dropped out of graduate school. My uncle unexpectedly passed away. I’ve been so sick that I got sent home from class and had entire weekends where I didn’t get out of bed.

At the same time, I’m blown away by all the truly good things that have happened. I don’t mean “good” as in this is a good apple pie. I don’t even mean “great” like Frosted Flakes are grrrrrreat. I mean “good” in the purest, rawest sense. There’s just no other way of interpreting these things. And so, my heart is overflowing with thankfulness for the following (in no particular order):
– a caring, loving, godly roommate in Gretchen
– Alana who faithfully calls, texts, messages, prays no matter what
– the folks at morning & evening prayers who prayed for me & for my uncle Eddie
– Aaron who always made time for me and prayed for me, especially when Timothy & Grace moved away
– Timothy & Grace in their love and their prayer, especially for their moving back
– Diana for all the fun conversations and the meals
– Dr. Leo for making time for me in between everything else that he does & for being open to listening and learning with me on my crazy journey & for advocating on my behalf when I’d given up on advocating for myself
– those anonymous classmates who took it upon themselves to help me out when I had a bad day and the professor was picking on me or brain fog robbed me of my thought or chronic fatigue meant I was late to class again
– Lydia for being a sounding board for my ideas and a person to listen to all my frustrations
– Bryan for answering the phone and listening even though he didn’t have any answers and couldn’t help me
– Larissa & Ian for continuing to be an inspiration and an encouragement in their testimony
– Dr. Mark who took the time to help me sift through my medical chart, trying to draw connections, who walked me through several difficult medical moments, and who assured me that I didn’t have to panic when I felt vulnerable or scared
– Isaac & Elora who just moved here and want to be friends
– all the people and all the moments that taught that I am strong and I have good instincts; and, for all the other moments and the people that assured me that sometimes I was allowed to grieve and feel inadequate because I wasn’t doing this alone


Chiropractic Care

Alternative medicine. I’ve never been a big fan. I think part of it has to do with the fact that my parents are big proponents of it, and it became an issue we split over. Part of it has to do with the fact that it’s not quite as regulated and so every practitioner does something a little different. Part of me is honestly fearful of participating in black magic and becoming cursed.

I’ve tried a lot of different kinds of alternative medicine. I have had a few small miracles. I have met some very interesting people. But once I took my medical care into my own hands, I only retained one alternative practitioner. This is the story that explains why.

I’ve been a patient of a chiropractor since May 2009. I was not a believer in chiropractic medicine. I went for another reason entirely. That chiropractor was one of the first people who really listened to me, heard my fears, asked me tough questions, told me about hard things in her own past, and celebrated with me as I made forward progress. I kept going to see her because she was a practitioner that cared about me. The chiropractic adjustments helped with some of the pain, but mostly I went because her office was a safe place. It was a place for Abigail to be Abigail. No strings attached. No facade needed.

Fast forward more than two years later and I was in a new state, starting a new graduate program. As I tried to make sense of everything, I knew that chiropractic care could at least give me some temporary relief from my pain. (Why did it take me months to transfer my medical care here? I don’t know. It also took me months to find the post office. And that’s not even deliberately hidden.)

That’s when I started seeing Dr. Harold. He looks nothing like Harold from Harold and the Purple Crayon; it would be awesome if he did. But he’s definitely very creative even if he has only one primary treatment — the purple crayon.

Chiropractic adjustments and manipulations have helped me a lot. With Ehler’s-Danlos syndrome, it’s easy for things to slip into weird positions. Therefore, my muscles get really tense in order to keep things in their proper place. That can lead to pain. Chiropractors can help with that. Plus, fibromyalgia means that your nerves have amazing memory, i.e. you feel pain much longer than other people do. So chiropractors can help with that if they don’t overdo things and make them worse!

I’d be the first to admit that I’ve been skeptical of chiropractic medicine for a long time. I’m still not 100% sure how to explain it to people. But I do know that part of my illness is related to the muscoskeletal system and/or connective tissue. In the mess known as absence-of-a-real-diagnosis-or-treatment, it’s nice to have something that can at least help temporarily and help prevent things from getting even worse. Even more, I see Dr. Harold pretty frequently — anywhere from 2-4 times a month. So he has a pretty good idea of where I stand emotionally and physically even if he can’t do anything about it himself.

As a chronic patient, I highly recommend having a team of medical practitioners. Every specialty has different things to offer you as the patient, but different practitioners also pay attention to different things. Dr. Harold can tell you when he comes into the exam room and finds Abigail napping on his exam table. (Yes, it’s happened multiple times.) He can also tell you when I’m really excited about something like a visit to see Tabitha or a presentation I’m giving later that week. Plus, he can wax poetical (or maybe draw with his purple crayon?) how my body internalizes stress and finds bizarre ways to lopsidedly absorb it. Those are things that Dr. Leo (for example) doesn’t have the resources to note in my medical record. Most of my conversations with Dr. Leo are over the phone or via email. I see him once every 3-4 months!! As a patient of both doctors, I have a wider range of treatments and perspectives. Plus, once they communicate and share information, they have better insight into my case, insight that I don’t even have.

Alternative medicine can be a huge drain on limited finances and lead to disappointed hopes. But alternative medicine can also offer a new perspective on disease. I’ve become open to forms of alternative medicine that help you as a patient develop self-confidence and empower you to become a better advocate for yourself. If it can give you even temporary relief of one form or another, all the better. Even if it’s all a figment of Harold’s purple crayon, if it makes you feel better about yourself and makes your body happier, then does it really matter how you reached that state? Isn’t that the desired outcome?

Just some thoughts,

Living in a Fog

Bad news folks: Abigail is buried under a fog.

ummmm, not exactly

Details? Well, the short of it is that Abigail got prescribed “miracle meds” that would turn her life upside down. Abigail took the miracle meds. Abigail’s life turned upside down. But not the upside down that the doctors were thinking. The other upside down. The one in which she does not get out of bed. at. all. ever. for. anything. Plus, her brain was muddled, her head hurts, her chest hurts, her insides are at war with each other, and her animals are her only source of comfort.

On the second day, (yes, you read that correctly), Abigail was tired of feeling extra awful. Not only was it miserable, but she had homework that was piling up and not getting accomplished. Abigail wrote a frank letter to Dr. Leo.

This miracle med is not working wonders. This miracle med is extra, extra awful. Can I please, please, please stop taking it???? My homework is calling me. And I hate living in bed. Plus, I hate feeling extra awful. Plus, isn’t that the whole reason I went on this med in the first place???

Moral of the story: Abigail got permission to take a brief hiatus from the meds. A moment to get some homework done.

Conclusion: Abigail has taken the hiatus. She may also take this opportunity to throw these “miracle” meds out the window or bury them very, very deep in a grave somewhere. She may disregard the doctor’s instructions to try the meds again over Thanksgiving break. {drumroll} I think Abigail is drawing the line.