I’m Sorry, What did you say?

There’s a line in 27 Dresses that I really like. Kevin says, What about you? You don’t have any needs? Jane responds:

No. I’m Jesus.

In other words, his question is ridiculous. Well, I had a moment like that yesterday.

I was in Dr. Mark’s office. Not in the XXXXL room, but a regular-sized room. (Still with the elephant-sized gown though.) We were talking about all the pain I was in. And options: none of them were very good. And he asked me this:

Do you ever get frustrated that we never are able to help you?

I think I gave him this blank look like Did you just say what I think you said?

I try so hard to be the perfect patient. His nurse was complaining to me about how the other nurse got stuck with a schedule full of “time-consuming patients, to put it nicely.” I’m polite. I try to be reasonable. I try not to annoying. I try not to complain about things that aren’t the doctor’s fault. I try not to yell and scream and throw things at people just because I feel terrible.

experience my grief

But the reality is that I’m in a LOT of pain. And I very desperately want not to feel this miserable any more. And of course I feel frustrated when I pay people to help me and they don’t. Not because they don’t want to. But because they don’t know how.

What happened in Dr. Mark’s exam room?? Well, tears started streaming down my face. And I told him that it helps me a lot to talk to him about this stuff instead of lying in bed at home wondering if it’s serious.

It’s also so much better than the previous place where I lived where I kept getting kicked out of doctor’s offices. Nothing crushes your sense of worth like having the validity of your illness questioned over and over again by professionals who supposedly see “real” patients with “real” pain all the time.

But the reality of the matter is that no amount of looking on the bright side changes the fact that having a chronic illness really sucks. It’s hard and scary. When it happens to someone else, it’s easy to lose sight of it. But sometimes, the best thing you can do is to acknowledge it, to offer to experience it with the sufferer. That’s the mistake those other doctors made. They didn’t stop to think that disregarding the patient actually made things worse.

I like God’s promise of His presence here

Abigail

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The Velveteen Rabbit

Thinking about Milton, I’m reminded again of this children’s book The Velveteen Rabbit by Margery Williams first published in 1922.

I’m not sure how young I was when I was introduced to this story. I don’t think I could read yet. I don’t even know who introduced me to this book since it’s not the type of book my parents would typically read to their children.


The Velveteen Rabbit. I remember that a little boy is given a velveteen rabbit as a gift. I think the velveteen is some type of material, but my little girl mind doesn’t really care. I just like the idea of a stuffed rabbit as a gift.

velveteenrabbitSo the boy receives this gift among many other gifts and singles it out as the most important. (Thumbs up! I like this boy already.) He brings his rabbit with him everywhere and integrates him into all his daily activities. (Extra thumbs up.) He even wishes the rabbit was real and could talk to him.

Then the little boy gets sick. Something terrible. Contagious. They think he might die. Somehow, the boy recovers. But they (the big, bad adults) take away all his toys, even his rabbit. The toys are contagious. (I thought they weren’t real.) They burn everything. The boy is devastated. His best friend is gone. (Duh.) They (the big, bad adults who have gotten bigger and badder) tell him to get over it. Then, they rudely execute a curtain call and the story ends.


At least that was my impression of the story. If it’s possible for a young child to be indignant, I was. I didn’t understand how something so good (the rabbit) could become so bad. In fact, I’m pretty sure I was convinced that the rabbit saved the little boy’s life. Burning the toys? Was that really necessary? Why did it need to be irrevocable? Were they punishing the boy for getting sick? Punishing the rabbit for getting him sick? I think I went and held my stuffed animals a little tighter. No one was going to take them away from me. I would build a brick house around them first.

Frankly, I’m surprised that I remember this story at all. And it’s impressive how much it relates to my own life. The questions I had as a child have come back to haunt me, particularly as adults try to make sense of a very confusing situation known as a chronic illness. Are you sure you’re not acting out to get attention? Why are you seeing another doctor? Why haven’t you taken this medication? Why have you missed school again? I’m taking away this thing because it’s “bad” for you….

Reflecting on this story, I see a couple of life lessons:

1) Different people are attached to different things. And in moments of vulnerability, we cling to them.

2) Illness is not fair. Nothing about it is fair. There are things that you can do to be a responsible human being, but at the end of the day, you’re not in control.

3) Being vulnerable and not being in control is hard. It’s hard to comprehend as the subject. It’s even harder to understand when it’s happening to someone else.

4) Grief takes many different forms. People grieve over different things because they are attached to different things. They grieve in different ways. That grief should not be brushed to the side.

5) Sometimes we need friends on our level. Friends that pay attention to us and not to our illness (or achievements or skin color or…) We need someone to just be there for us.

6) My memory of storytime is pretty shaky. Read the book. Note the difference in the storyline.

A blast from the past (my past and the real past),

Abigail

Music: Another Part of My Journey

Music has been an integral part of my life for as long as I can remember. I started taking piano lessons when I was six after having picked out the upright piano I wanted in the piano store. (It turns out that I picked a good one.) While I’ll be the first to admit that I never had the talent to perform professionally, I enjoyed playing the piano and performed quite complicated pieces rather well in high school. In ninth grade, I gave a joint recital with my younger sister, performing a number of pieces including Mozart’s Twelve Variations on “Ah vous dirai-je, Maman” known in plain English as Twelve Variations on “Twinkle, Twinkle, Little Star”.

My fondest memories of childhood music were chamber music. In tenth and eleventh grades, I had the honor of working with a local violinist who was just about my age. Together we performed Beethoven’s Spring Sonata for Piano and Violin. It was so much fun to work with another instrumentalist and to see music come and alive in dialogue between instruments. I fell in love with the different textures, and the power of music to convey dynamic emotions. I knew I was lucky to have the opportunity to play with this talented friend, and I learned a lot by watching her perform.

All through high school I dreamed of becoming one of those professionals who performs as a musician on the side. I talked to friends about playing at weddings and fell in love with chamber music. I got involved in church as a pianist, working in children’s ministry. I started volunteering as an accompanist for a local violin studio.

Then, last year of high school, illness struck. It was subtle at first, but the first thing to go was piano practice. No more three hour a day practices. No more one hour in the morning, one hour in the afternoon practices. At one point, it was down to fifteen minutes once a day (if I was willing to put up with a lot of pain.) How I made it through that last year of instruction, I really don’t know. I remember pacing backstage at the end of year recital; I knew I wasn’t prepared and all I wanted to do was be finished.

I tried really hard to continue to be involved in classical music in college, but it was too hard. The two music history classes I took tore my heart apart. I got to the point where I stopped listening to CDs of pianists, and I cried every time I went to a piano recital. Orchestra concerts were hard (and one of my two sisters was in orchestra every one of those years.) Even playing at home on my piano to myself was hard. It was just easier to run in the opposite direction. As days turned into weeks, weeks into months, and months into years, I just kept running away from the music I had grown to love, unwilling to face the loss of something I loved.

It took about five years before I was ready to face the issue. I got back in touch with my best friend the musician who’s now touring the international stage. I reached out to the violin teacher I worked with in high school, and Alana and I are really close now. I live vicariously through her adventures of playing wedding gigs. I’m starting to find new ways to integrate music back into my life. For a while, I took violin lessons via Skype with Alana. I start playing for church services again. And, I’ve gone to a few concerts here and there.

Music? It’s an amazing part of my journey. It brings joy in ways nothing else can. It also brings sorrow. While time may not change it, I hope that time will mellow the harmony and that as the song progresses, the tide will turn. It feels like it already.

Abigail

Sharing?

This blog is an amazing space for me to write about my life and about what’s happening. There are a few readers here who know me in real life and read this blog to keep up-to-date on my situation. Frankly, this blog has helped me quite a few times keep track of when I talked to Dr. Leo about something or why I took a week off school.

Yet primarily this blog is a space for me, Abigail. It’s a place where I can reflect on the things that are happening in my life. It’s a place where I can express profound gratitude for people around me, particularly when I can’t tell them so directly. It’s a space for me to document what I’m learning on this journey of chronic illness. It’s a place for me to laugh about the ridiculous things that happen to a patient stuck in the medical world. Sometimes, it becomes a safe space to grieve.

That’s how I decide what to write about for the blog. I think about what I might be comfortable with a person like Timothy reading; so occasionally there are things that are far too personal or gross to share. I frequently write about things as they develop, which means that you can catch a glimpse at how friendships grow and how complicated medical treatment can become. And I aim to write about the positive: unexpected friendships, beautiful conversations, lovely verses, sweet experiences. Every now and then, I grieve in public because it’s healing to articulate what has been lost and what might have been.

Abigail

with My Dad

I’m two states away… spending some time with my dad.

I got a text from my mom this afternoon asking for prayer for my dad — he’s really sad about his brother Eddie. Daughter instinct kicked in and I grabbed some clothes, all my homework for a week, and jumped in my car.

Please pray for this time and for my dad. There’s need for much healing and much comfort.

Peace,
Abigail

Remembering Uncle Eddie

My paternal uncle Eddie passed away a little over a week ago. His death was very unexpected and hit me pretty hard. This post is for him.


age 12: ready for a 50 mile hike!!

Nearly two years older than my dad, Eddie was the quintessential American boy. His parents moved across the United States to pursue the American dream and eventually opened a mom and pop business. At an early age, he joined the Cub Scouts and proceed to ascend through the ranks over the years. Ever athletic, he played water polo in secondary school (much to non-athletic little brother’s consternation!) As an adult, he traveled frequently, sending mementos of his trips to various family members.

Eddie: Grandma always told me how intelligent you were & how much potential you possessed. I look at the part of your life that I know and I see creativity, resourcefulness, and strength. You lived up to the valor of the name Edward in so many different ways.

As I mourn the loss of your life and the reality that we never really got to know each other, I am comforted that the trials you experienced are over. I’ll be telling my children about their uncle who refused to let overwhelming situations master him, the man who found meaning in his life in his own way. At future milestones of my own, I’ll be remembering you, my uncle Eddie, for who you were and who you intended to be.

When Doctors Grieve with You

I’ve been in and out of doctor’s offices every day for the past two weeks. It’s been a draining experience. But this one moment with Dr. Mark is stuck in my mind.

Yesterday, it was the end of yet another appointment in the XXXXL exam room. It seemed like we were always rehashing the same things: symptoms, medications, options, short-term plan, things to look out for. We had joked a little bit about the new computer system and how certain things were counterintuitive. But mostly the gravity in that room dominated.

So it was that when he was leaving, he took a moment to look at me and whisper, I’m sorry. As relieved that we were that I probably don’t have cancer, that look acknowledged the frustration that we both felt of not knowing what was wrong and having little control over the situation. Something in that moment gave me the courage to ask one more question: Is there anything I can do to cope with the pain? Any medication that will give momentary relief?

That moment stopped us both in our tracks. How did he know I needed to see his sorrow? Where did I find the strength to speak up?

Five seconds. A moment of mutual grieving. Acknowledging the loss in my young life. It changed everything. This is why:

It takes guts to admit that we don’t know everything, especially in your own field.

It takes effort to show that vulnerability to someone else.

It means stepping out of the superhero role into the victim box.

It means recognizing that life is not perfect and that some times things are hard and out of our control.

BUT

It also means the patient knows the doctor is listening because he cares about the patient as a person.

It also means the patient knows the doctor is doing everything within his power to help.

It also means we’re all in this together: the patient and the doctors: we work, we rejoice, we mourn, we feel.

It also means in that moment when the patient needs it most, there’s someone intelligent, knowledgeable, and human there, come what may. That’s the foundation of courage that is needed to face something difficult and bigger than you. It makes all the difference.

~Abigail Cashelle

A Solemn Validation

When it comes to a time of crisis, we discover who our true friends are. Some people shrink back or suddenly discover that they’re occupied with other things. Then there are the people who are there for you no matter what, who care about you and what you need, who are willing just to sit there and listen to whatever is on your heart (or just silently absorb all that’s happening.)

When you have a chronic illness (or other sort of long-term trial), you do discover who your friends are. They are people you trust, people who will drop everything to be there for you, people who don’t ask for anything in return, people with the capacity to care and to listen. But I’ve discovered that the same dichotomy plays out with strangers, casual acquaintances, and coworkers.

Earlier this week, one of my classmates asked me for my opinion about my particular graduate program. Taylor is currently in a master’s program in a related field and is considering applying to a doctoral program like the one I’m part of. I told him that honestly I’d been having a hard time, but that is likely due to the fact that I have a chronic illness, more serious than I realized, and the program seems reluctant to accommodate. His reaction surprised me. It was so different from recent conversations I’d had with so many other people, and it was truly telling of his character & person.

I tend to make jokes about my situation because the situation seems too heavy for most strangers to handle. As I told Taylor about my program and my experience, I casually remarked, “Well, don’t forget to keep in mind that I have a chronic illness, which governs my whole experience. Hopefully, that’s not true for you.”

Taylor gave a slight smile but mostly his expression was grave. He didn’t say anything; he just stood there, looking at me and listening. That moment of silence spoke worlds of meaning to me. It was as if he said, “Abigail, just because your circumstances are different, that doesn’t make your experience any less valid. Your journey through the program, your observations, and your evaluations are just as legitimate as that of anyone else.” I realized that, for the first time, someone didn’t discount my experience. I was just as ordinary as the next person.

That moment of silence also was a moment of grieving for both of us. It stands as a moment where we both recognized the gravity and unfairness of the situation and grieved for the loss of what could (or should) have been. He didn’t say anything. He didn’t have to. That moment of acknowledgement was everything.

Taylor was just an acquaintance. He wasn’t in a position to become my friend or to be part of my medical care. But he took a moment in that conversation to validate my experience and to grieve that I felt so different and isolated. For that, I am grateful.

Abigail Cashelle