A Special Name

I love the name of Him whose heart
Knows all my griefs and bears a part;
Who bids all anxious fears depart,
I love the name of Jesus.
That name I fondly love to hear,
It never fails my heart to cheer,
Its music dries the falling tear;
Exalt the name of Jesus.

I haven’t been able to make it to a Lord’s Table meeting in a very long time. Probably not at all this month. But I made it this morning. And I loved this song. Singing is hard on the chest pain. But singing in the presence of the Lord? It never fails my heart to cheer.
Abigail

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Is the phone connection wobbly?

I talk to Dr. Leo over the phone today. I sent him email after the most recent specialist appointment, giving him an update and asking him to call me at his earliest convenience. We had a really good conversation about my frustration: frustration with feeling physically bad all the time, frustration with not being able to do anything about it, and frustration with not being able to do stuff. He asked me a lot of questions about mood and depression. We talked about laying low on the medical front for a while and focusing on the other stressors in my life (of which there are many). We compared the situation of feeling miserable and without feeling to being upset because I only had the energy to be at two hours of my best friend’s wedding rehearsal (and dinner and planning, etc.)

One thing I really appreciate about Dr. Leo (& Timothy) is that they are not afraid of blank space. In our conversations, they’re perfectly comfortable with having periods of time where no one is saying anything. It’s so nice for me because I’m used to being around people who are eager to get to the point and then move on, but sometimes I can’t physically, mentally, or emotionally move that quickly any more. Anyhow, at one blank spot in today’s conversation, Dr. Leo asked me,

Do you have a cold? Or is our phone connection breaking up a lot?

Ummmm, no. I’m, uh, uh, crying over here. Sorry. It’s a lot to deal with.

(pause, a long pause) Oh. It makes sense.

We didn’t dwell on it. We didn’t have to. I’m trying so hard to manage everything myself and understand all the medical complexities, but the truth is that I’m not qualified or educated to do this and I didn’t even sign up for it!!!! It’s really hard, and I’m doing a lot of it on my own. Aaron visits (or calls) once a week and prays with and for me. Alana and Tabitha text or call me whenever they can. But the day to day stuff is all up to me.

I confessed to Dr. Leo that a lot of the time, I don’t know if I’m being proactive or responsible enough; it’s hard for me to judge when I’ve done a reasonable job. Want to know what he said? He said, You’re perfectly responsible, Abigail. You’re dealing with a lot of things all at the same time. I’m here to help you, and so are the rest of us.

We talked about it more in some detail. He’s going to call Dr. Samuel (and possibly Dr. Harold) and fill him in on what’s happened in the last two months. He’s going to share some of his concerns about my emotional stability and see how they can work together. I’m going to compile a list of all the requirements I need to meet to achieve ABD status, and then Dr. Leo and I (and possibly Dr. Samuel) will map out a plan for me to accomplish everything without burning out. Then, I’ll present it to my department, and he’ll be right there helping me fight for myself with something concrete.

The future holds a lot of unknowns. I’m not sure how a lot of things will work out. But I know I’ll make it through to the other side, wherever the other side is. Dr. Leo is available for me to reach out to. Other doctors are also willing to help out however they can. And, I have a God who’s bigger than the disease that seems bigger than me. While He may not choose to take this illness away, He’s blessed and shepherded me by bringing Dr. Leo & Aaron into my life. And, I know that He’s here to stay.

Abigail Cashelle

do you know where he worked before, and other questions (not) to ask the patient

Another day, another specialist. The actual visit with the doctor was fine. He was very kind and knowledgeable. But the surrounding discussions were rather interesting, and adding them altogether, I got a sum total of ludicrous. Here’s a summary of some of the things that were said to me during a 60 minute visit:

– Do you know how to order a pregnancy test?? Umm, no. I do know that I’m not pregnant. One doctor, two nurses, and a scheduler asked me this question. I do know that they usually want to know if you’re pregnant before they expose you to radiation, but I’m not convinced that running a pregnancy test a week before the x-ray is relevant. No problem, says the doctor. Just tell them that you didn’t get pregnant between now and then. Now, do you know how to order it????

– They ordered the wrong pregnancy test. We don’t do that type of pregnancy test any more. Did you know they ordered the wrong test? No. Well, they did. Oh, do you need me to go and get them to order the correct test? No, that’s okay, honey. I’ll take care of it. But it’s unbelievable. They ordered a non-existent test. Ummmm, yeah, they didn’t really know how to order a pregnancy test.

– Did the doctor tell you what kind of imaging he wanted? Did he give you any more information than this paper you handed me?? No. He wanted to order a CT scan. The order is on a separate piece of paper that he has. Oh. Let me go find that.

– Do you know how to order this CT scan? I have the paper now. No.

– Do you know where the doctor used to work? He’s new here. I think he transferred from another location. Did he transfer from location B? I don’t know. Well, did you see him on this side of the building or the other side? This side. Ok. Well, I still think he used to work at location B. Uhhhh, sure?

– Were you here when person W was murdered? No. Well, I was, and I met the two murderers before they murdered her. Would you believe it? They wouldn’t listen to me when I told them that they needed to have real careers. Now they’re in jail for life. It serves them right for ending such a young life. Uh huh.

Suffice it to say, none of this dialogue drums up any confidence. If my pregnancy test gets lost or my CT scan never gets scheduled, I wouldn’t be that surprised. Fortunately, I liked the doctor, and we were able to talk about cardiological stuff and EDS and other worrisome medical stuff. He does actually know that stuff pretty well even if he doesn’t know who to ask about ordering a pregnancy test!

I don’t mind being a sounding board for thoughts or ideas. But, you know? There are reasons I pay for medical care. They include the fact that I don’t know or am not licensed to do things like order a CT scan. And, I’m certainly not qualified to pass judgment on local murderers who may or may not have had medical exams in the past.

Just another humdrum day,
Abigail Cashelle

Time… It Takes Time

Rome wasn’t built in a day.

It’s a common saying, at least in America. But have you ever stopped to think about it? It states that a particular city wasn’t built in a day. Nothing in that logic hinges on how many people were involved in building Rome, how big the city of Rome was, how hard working the workers were, or how intelligent the design of the city was. The only factor that matters is time. And not just any measure of time, but the duration of time. It’s not the net number of hours worked, but the duration of time over which the city was built. And that duration was not a day.

Life is a process. It’s cumulative. It takes time to grow, to build relationships, to become familiar with something.

As a chronic patient, I know that there are very few solutions that will solve a problem right away. There’s always some sort of lag time, some time needed for my body to cooperate and to process any intervention. But I’m starting to realize that there’s more to it. In my treatment in this town, it’s taken time — the duration form — for me to feel comfortable with my doctors or for them to really understand me and the challenges that I face.

I was raised in an environment where the motto was “don’t waste time”. We talked about having the gift of today and not putting off things on the hope of tomorrow. We never really talked about why, but we really liked Cheaper by the Dozen and the antics of the children of time management expert Frank Gilbreth. Every minute was accounted for, and every task timed to the minute. The result? I did everything in the minimum time required.

It’s definitely an awesome skill to have. I can and do work very efficiently and can finish tasks like homework in much less time than a lot of my classmates. But some things in life aren’t about racing to the finish line. Some things require investment of time. A relationship with my grandmother, for example, has nothing to do with “not wasting time”. It’s about the accumulation of time, time spread over time. Time to grow, time to blossom, time to let the feeling sink in.

So I’m learning to value time in a new way. Not as a commodity to horde but as a gift to be invested. There’s no need to try to understand everything today or digest all the news in one sitting. Even if I don’t have questions at the moment, I can call Dr. Leo tomorrow for more information. And, friendship is as much about a walk together as it is about a moment. Because nothing, not even Rome, is built in a day. And the treatment of a chronic condition doesn’t have to materialize in a second.

Abigail Cashelle

For His Glory

As long as You are glorified…

The first time I read those lyrics, I stopped in my tracks. What? I had to stop and read them again. And then I had to read the context. What? What does this mean?

A young woman was writing a reflection. A one year anniversary…. of the day her boyfriend came home from the hospital… where he had been for seven months… recovering from a traumatic brain injury. Somehow, I don’t know if it was courage or audacity from Larissa, but she wrote, “I’m trying desperately to believe this in my heart.”

Are You good only when I prosper?
And true only when I’m filled?
Are You King only when I’m carefree?
And God only when I’m well?
You are good when I’m poor and needy.
You are true when I’m parched and dry.
You still reign in the deepest valley.
You’re still God in the darkest night.
.
Oh let Your will be done in me.
In Your love I will abide.
Oh I long for nothing else as long
As You are glorified.

I purchased the song. I mused over it. I thought about Larissa and Ian; I prayed for them. I saw Larissa and Ian’s family as heroes. I couldn’t help it. I was bitter at God for all that He had taken away from me, all that He had allowed to happen. I knew that I didn’t deserve any of it in the first place. So I knew that it didn’t really make sense for me to complain about losing something that never really was mine in the first place. I didn’t understand how anyone could look at Ian and sing this without being devastated.

Of course, God was still God, rain or shine. But what I didn’t know was that He is the God who is love, rain or shine. He is my Father, rain or shine. He is I AM THAT I AM regardless, and He’s that to me. In many little ways, I saw God clearly working behind the scenes to take care of me. It didn’t solve my problems, but all these small things kept adding up, and I know only God could have done it, and He did it for me specifically.

Slowly, over a lot of time, I began to open my heart & deeply know these truths. And I began to pray the chorus as well: Lord, let Your will be done in me. Whatever it is. I surrender to You. Work in me and in my situation according to Your way and according to Your time.

Only in the past few weeks have I begun to get a glimpse of the true meaning of it all. Reading a sermon tucked into a book on God & disability, some light shone and a few things fell into place in my mind. In John 17, Jesus prayed that He would be glorified in the believers that the world may know that the Father has sent Him. But Jesus also told the disciplines that a specific man had been born blind not because of a specific sin of the man or even of his parents but that the works of God would be manifest in him. God’s purpose involves His being glorified through His creation, especially through His chosen people. And, if God Himself could be expressed through me in my particular situation, it doesn’t matter how glamorous or unglamorous my situation is, His purpose is a little closer to being achieved.

That’s how my life has eternal value. I become closer to God and know Him in a deeper, fuller way. God is glorified because He is manifested (somehow) in my particular circumstance. I have to confess that I don’t know how God can be glorified through my life. In the grand scheme of things, I feel very small. But I know that I want to cooperate with God for His purpose. And I’m grateful for all that He’s done and is doing for me in my life. So, now, with Larissa, I echo the sentiment:

Oh let Your will be done in me.
In Your love I will abide.
Oh I long for nothing else as long
As You are glorified.

Abigail Cashelle

Beautiful Day with Bethany

Bethany’s wedding was beautiful. The ceremony itself was a blur. I remember fixing her dress a lot for the many, many pictures they took afterwards. I remember talking to a lot of her friends & relatives. But a couple things stood out to me:

– the groom: right as I was getting ready to leave, the groom came up to me and thanked me for everything I had done to support Bethany up until this point. He said, There’s no way that Bethany and I could have gotten married without you. I’m so grateful for everything that you’ve done for her and for what a friend you’ve been to her. Thank you from the bottom of my heart. As the tears welled up in his eyes, I kept thinking of all the things Bethany and I had done together in the few years. From praying for her and her (now) husband, urging her to take pre-marital counsel seriously, walking through the various steps of wedding planning, hearing the first stories of “the boyfriend”, to flying down to be the first friend to meet the guy. It meant a lot to me that someone noticed how much I care about Bethany and want what’s best for her. But it meant even more coming from the groom.

– the bride: when I was saying my very last goodbye to my newly married best friend, she whispered these words in my ear: I’ll be praying for you health-wise. It meant so much to me to hear her say that. I know that she cares about me deeply & wants to give me something eternal, something she knows I value a lot. A lot of our conversations for the past few years have revolved around the boy & then the wedding, and it sometimes felt like our friendship fell by the wayside. But even though we talk less, I think we’re closer than ever.

– my hair: bridesmaid #4 did my hair for me, just because I asked her to. For some strange reason, I was the only girl who had her hair done on site. So it meant that I was the center of attention because the bride was in the back room doing some makeup stuff, and the photographer was hovering around me taking photos. So I had my special moment.

– best man, brother of the groom: I had the opportunity to meet the brother of the groom & his girlfriend last year over Christmas. It made it feel much more like family during the wedding since I knew many of the wedding party. As he gave me a hug goodbye, I reminded him that I’ll probably be in town again for Christmas. Looking at his face, it was almost like having a new brother-in-law when he said, I can’t wait to see you then.

So, I’m really happy. The wedding was beautiful. We wore some splendid dresses and carried lovely flowers. But mostly, that feeling of being part of family and being someone’s best friend, sister, and daughter: I wouldn’t trade it for anything.

Abigail Cashelle

Happy Sums It Up

What a day. I’m a couple states away now for my best friend Bethany’s wedding. We’ve been counting down the days to this moment for over a year now, and it’s almost here!! (The ceremony is tomorrow.)

The trouble with being chronically ill is that illness always haunts you… even when it’s not welcome or convenient or even allowed. And it’s hit us all big time.

I texted bridesmaid #2 that I was in the car with Bethany feeling extremely nauseous; wasn’t this day going to be fun? Bridesmaid #2 replies, Uh, sure. I’m headed back to the hospital, again. Her illness has decided that she won’t be in the wedding. Of course, we have to tell Bethany that one of her four bridesmaids isn’t going to be available to even attend. 😦 We’ll work out the logistics, of course. But what we don’t tell her is the following:
– bridesmaid #1 has a killer migraine and is barely holding it together
– bridesmaid #3 (that’s me) is feeling incredibly nauseous and exhausted and feeling miserable around a bunch of people is making feel depressed and kicking in that feeling that I need to retreat into my shell
– mom of the bride has been in and out of doctor’s offices all week & got out of bed this morning because it’s the day before her daughter’s wedding even though her chronic condition should have been keeping her in bed.
That’s just us girls.

It’s a good thing bridesmaid #4 is spunky and bossy and extremely good at multitasking. I have a feeling that she could singlehandedly serve as wedding coordinator and bridesmaids and chauffeur and a couple of other things all at the same time. And other friends and relatives are available to help.

Everything will fall into place. And, of course, there will be things that will slip through the cracks, but at the end of the day, Bethany will be married to the love of her life, right? And that’s all that matters.

Taking a gigantic step back, I realize how much chronic illness could be robbing us of the experience & of celebrating with someone we love so much. Yet, we’re all choosing to work around the limitations and allow the joy of the moment still permeate the air.

Someone mentioned to me a few weeks ago that this was why someone should not have chronically ill friends — they fall through at the last minute. I think he missed the point altogether. Here you have the beauty of true friendship. We’re all here for each other, through thick and thin. We rejoice together, we cry together, we care for each other as each person is. Yes, it would be nice if we had a beautiful hair dresser as bridesmaid #5; it would certainly make hair & makeup a whole different experience. But there’s no reason any one of us needs to pretend to be such. Best friends are best friends because we made a friendship by weaving together two personalities. And so, the take home message is that I’m really happy. Even though I feel miserable physically and there’s a mountain of homework piling up, I’m happy to be next to my best friend as she marries an amazing man. Right now, there’s nowhere else I’d rather be.

Cheers,
Abigail

A Moment to Remember

…I met with a professor today for a session for our independent study class. I don’t think I’ll forget her parting words soon… especially given how long it took for us to get here.

This was really fun. I’m glad we decided to do this.

Me too.

A grad school win,
Abigail

I Think You’re a Friendly Person

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

Happy to Announce I Went to the Mall

Cherry Creek Shopping Center
I went shopping at the mall today. I had a coupon or two and some amazing sales that I wanted to hit. I finally had the time. And, for once this month, I didn’t feel like a lead soldier when I woke up. So I hit the mall. And I didn’t just go to the mall; folks, I went to the mall!!

I used to go shopping at the mall just to counter depression. I’m not really sure why shopping at the mall is a panacea for me, but it is. Today as I was walking through the mall, I was reminded how happy I can be just walking around looking at stuff for sale. And because I wasn’t actually depressed, I could thoroughly enjoy the expedition! Plus, I only had to take two one-hour naps this afternoon to compensate, so I’d say it was worth it.

Here’s what I bought:
– $6 (not $14) makeup: my best friend is getting married next week, and I’ve been coveting some eye shadow. I’m one of the bridesmaids, and I want to look extra pretty for the pictures, so this eye shadow should be just the thing!
– $10 (not $45) knit top from one of my favorite designers: it’s got flutter sleeves too which I’ve been dying to wear
– $20 (not $100) tube-top dress from expensive designer; I think the dress was designed wrong because the top is probably a size XL or XXL but the waist is definitely a S. However, I’m pretty sure I can alter it in about 20 minutes to make an awesome skirt without purchasing any extra materials. If it turns out great, I might go back and get another one.
– $14 (not $70) designer handbag. I wanted a bag to have all my stuff backstage at the wedding, and for some reason, I don’t have anything the perfect size. I found this one at a thrift store, and it’s even in a pattern that I wish I had purchased back when it was the thing. It’s barely used, so I’m pretty sure it’ll have a long life.

I love shopping, and I love being a genius at finding deals!! At the store with the dress, the clerk told me, Wow! You really found a deal!

Shopping made me happy because nothing about this trip was defined by my illness. Of course, I’d been collecting items that I wanted to purchase and coupons I wanted to use for at least a month. In fact, I even told Diana last week that I was going to purchase the makeup that day! And, if I wasn’t worried about being tired, I would have shopped much longer than 2 hours. But, all in all, I just used my savvy thrifting skills and my eye for good quality products. Now that I sew some, I can price items based on cost of materials and quality of workmanship and know whether or not I’m getting a good deal. Plus, I have a little bit of an idea on resale value; i.e. I probably could use the designer handbag a few times and then resell it for about the same price.

The bottom line is that it’s nice to have a few hours when having a chronic illness doesn’t matter or isn’t the number 1, 2, and 3 priority on my mind. A very satisfying end to a crazy week!!

Abigail