In Honor of Robert & Heather

It’s interesting how citizenship in the kingdom of the sick works. Almost always you get inducted without permission (or even your knowledge) and citizenship is irrevocable. With time comes knowledge that only an insider can gain. As time passes, one becomes more and more connected to other citizens even if your journey to citizenship is vastly different.

I write today as part of the effort to give a voice to those who have fallen victim to asbestos poisoning. Heather asked me to spread the word about mesothelioma, a rare and deadly cancer caused by exposure to asbestos. What she didn’t know was how close to home this hits.

As a young high schooler, it was my first real connection with death and mortality. I remember visiting my friend’s house one summer and spending a lot of time with her family. I remember being there every day for a week, and laughing and making fun of her dad who was so tall that he had to duck to come through a doorway. We even have pictures of our two families together.

I later learned that he got diagnosed with mesthelioma that week. It was the beginning of a very difficult journey for this family. Robert was given only months to live and deteriorated very rapidly. At his funeral, hundreds of people talked about his service to the church and to the community. I knew him as a hilarious father and a Sunday School teacher, but I realized that there was a whole other side of him that I never even encountered. I remember learning that he was exposed to asbestos as a high school graduate when he spent one summer working in a warehouse. I remember wondering what he did to deserve this. Did God not reward those who were hard-working and God-fearing? How could this illness so insidiously break up this family? How could someone who wasn’t even “old” die?

I wish I could tell my young self that that’s not how life works. Doing good and being pious don’t guarantee immortality. As humans, our days are numbered. It’s more about making the days we have count than the quantity of days we have. Citizenship in the kingdom of the sick doesn’t come by choice. We don’t have control over when we are naturalized and why. Sometimes there are things that could theoretically be controlled (like exposure to asbestos). Sometimes deficiencies are in our genes.

Today I choose to remember Robert for who he was and for what he did for me and for my friend. I encourage you to take a look at Heather’s story and become familiar with the continued presence of asbestos in our life. Most of all, know that illness strikes all kinds of people in many different ways; every one of them could use the support & encouragement of community.

From my heart,
Abigail

February 2014: Polaroid Block

This post is part of Hive 2 of the Stash Bee.

Interview

What is your name? Abigail Cashelle

Where do you live? in the United States

Tell us about your family. I’m single 20-something girl. I grew up as the oldest of three girls in a fairly traditional evangelical Christian home.

Tell us about how you got interested in quilting. I’ve wanted to quilt for as long as I could remember. I remember going into my mother’s crafting book stash and secretly reading pages on quilting that were in there. She had a Sunbonnet Sue book that I practically memorized. But I never actually started quilting until I started graduate school in 2011. By then, I had summoned up enough self-confidence to dare to learn to quilt without a teacher (or really knowing anyone who quilted.)

How do you organize your fabric stash? It’s organized chaos really. I have a set of drawers with current works in progress, including projects that I have in my head but haven’t even seen the light of day. I have a big box of fabric scraps that I’ve collected from various projects, from a sewing friend, and from remnant bins at various fabric stores. Then I have a box of stash fabric (not organized, just folded.) On top of all that, I collect vintage sheets, so I have a box of those, organized by color.

Who is/are your favorite fabric designers? For a while, I loved everything that Cosmo Cricket came out with. I love Sarah Jane‘s style and have used some of her prints here and there, primarily for baby quilts. Mostly I just love anything with a retro flair or that reminds me of someone that I’m quilting for.

What is one thing you have learned that you wish you knew when you first started quilting? I wish I realized how creative sewing is. I’m not an exact person (as you will come to find out), and so I always imagined that sewing would be impossible. To tell the truth, I am learning to be more exact, but I’ve also discovered that quilting has a tremendous amount of creativity and freedom to it. You don’t have to follow a pattern to the hilt and there’s no exact requirements for the length and width of a quilt. It helps if all your blocks are the same size, but if they’re slightly off, people can’t really tell once it’s on a bed and definitely not when they’re sleeping under it.

sewing edges for block #3What is your favorite sewing/quilting tool and why should we all go out and buy it? It took me a while to hop on the washi tape craze, but it’s come in really useful for quilting. I’ve used it to mark a 1/4″ sew allowance on my sewing machine. I use it to tape my schematics to the wall or to tap the rest of a fat quarter package back together. It’s super nice also to make those packages seem extra special when you’re mailing a quilting gift to someone. Right now, I only have green washi tape, so it would be nice to have another color. But this girl quilts on a budget, so I tend to go for the basics. Plus I figure that if I’m frugal on the tools, I can spend more money on the actual materials!

Who is your favorite fictional character and why? I’m a huge Jane Austen fan. I’ve listened to Pride and Prejudice as an audiobook so many times that I have entire sections memorized. However, I still discover new things in it every day. To the high school English teacher who said that it was not a work of literary merit, I would have to say that that put it in a special category for me and made it one of the only books from high school that I still go back to all the time. I love all the movie/TV adaptations that I’ve seen, including the two BBC versions and the Kiera Knightley version. I think I like the Jennifer Ehlre/Colin Firth version. I’m a devoted fan of the Lizzie Bennet diaries; I love the way in which they’ve adapted the story to modern life and the ways in which they’ve interpreted the characters’ personalities. I’ve read a ton of fan fiction but am not a fan of the zombie/vampire twists (simply because I avoid that genre altogether.)

A few other things to note about myself:

– I am a historian by trade. I specialized in the antebellum South (which means the era before the Civil War and the area where slavery was legal.) I’m fascinated by tradition and by modern adaptions of the traditional.

– I have a chronic illness which has had a fairly significant impact on my life. I’ll be at a medical clinic undergoing more diagnostic evaluations for at least part of the month of February. Although I might be a little harder to get a hold of than usual, I’m really, really grateful for a distraction as preparing for the visit and even thinking about it has been kind of stressful (and scary). [My blog tells you much more about this journey.]


The Quilt Tutorial

My first memory of a Polaroid camera is a Sunday School class when I was four years old. One of the teachers owned a Polaroid camera, and they would come up with crafts that involved taking a picture of each of the students. My four year old self loved the idea of instant photos and watching the photograph develop. In sixth grade, we spent at least one week in art class altering photos we took with a Polaroid camera. We discovered that if you used toothpicks or q-tips, you can draw rings of fire around your subject. The bride at the first wedding I attended as an adult used Polaroid cameras to take photos of the guests for her guest book. So lots of memories!!

I’m excited about the possibility of a Polaroid quilt, one that can showcase some fun prints, can bust part of your stash, and can celebrate the past (and the present)!

fussy cut: block #3
Note how close to the edge of the fabric this picture is. Remember that Polaroids are a form of amateur art, so it’s totally fine if part of the image is missing, which is good since this scrap of fabric I bought from another crafter doesn’t include another full image of this scene.

The final block will be 9.5″ square (including seam allowances). Your block can showcase as many Polaroids as you like. I’m asking that your background fabric be at least 75% green or blue. Prints or solids both work; I just want to keep a color theme going. Keep in mind that Polaroids are not professional photos, so if your subjects are off to the side or partially cut off, it’s part of the theme!! (I told you I wasn’t exact.)

All measurements are merely suggestions. If different sizes or ratios work better for your particular feature fabric or your 9.5″ square block, be creative!!

1) Select a feature fabric. Find something that you can feature in your photograph. The broader the spectrum of choices, the more fun for me!! Cut out a square or a rectangle. My pears are about 3.5″ by 4.5″ plus seam allowances. The initial “A” is about 3 inches square plus seam allowances.
February 2014 block

2) Using a white or cream solid fabric, cut strips about 1″ wide for three sides of your fussy cut piece. Sew the opposite sides to the piece and then sew the third side connecting them.

3) Cut another strip about 1.5″ wide for the remaining side and sew that down.
making it a polaroid

4) Now you have a Polaroid (in fabric)! This is the perfect moment to square the edges if you want to.

Decide at this point whether you would like to feature multiple Polaroids in your block. If you do, follow steps 1-3 for each Polaroid. (Keep in mind that if you’re appliquing the second Polaroid on, you won’t need as many seam allowances when you cut the strips of white/off-white fabric.)

5) Select a contrasting or complementary fabric for the background. It can be a print or a solid, but please make sure that at least 75% of the fabric is green or blue.

adding the sides

6) To add the background, add strips of fabric to two of the sides. Then add strips of fabric to the other two sides. I intend to cut these blocks at an angle with a final side of 9.5″ square. If you make your blocks somewhat bigger (maybe 12″ square-ish), that will give me enough room to manipulate my ruler.

block #3: ready for trimming
7) To add a second Polaroid to your block, I would suggest appliquéing it to the block you completed in step 6. I used Steam-a-Seam to attach the “C” to my “A” block and then zigzag stitched it down with white thread. It could have been cool to use blue or orange thread although I didn’t think about that until later.

applique ready

8) Please mail me your block without the final cut. Once I have everyone’s block, I’ll make the final decisions about angles and placement and then cut everything all at once.

finished block

Polaroids came in different sizes and shapes over the years, so draw your inspiration from your feature fabric. I’ve seen Polaroids taken with the thick edge off to the side. I’ve seen square and rectangular Polaroid prints. I’ve also seen mini Polaroids taken. Use this as an opportunity to celebrate the spontaneity of layman’s art and don’t be over concerned about the tiny details. Just make sure that I can actually fit my 9.5″ square ruler over your whole block!!

I’m so excited to see what you all come up with and I can’t wait to put this whole quilt together. This is definitely a quilt design that makes more sense in a bee because it thrives on the diversity of stashes.

Email me directly or post questions to Flickr if you run into trouble as you piece these blocks.

Best wishes,
Abigail

P.S. Please be sure to use my name as it appears on the address list. It’ll help the mailman get less confused!

PFAM December 2013: Call for Submissions

Holiday Wishes at the Magic Kingdom
Miss Cinderella’s Wishes

Calling all chronic patients, spoonies, caregivers, medical professionals, and human beings!!! I’m hosting this month’s Patients for Moment carnival, and I want YOU to participate!!!

Each month, Patients for Moments hosts a blog carnival where we ask each participant to write a short blog post (or even a comment to someone else’s blog post), contributing their thoughts on a given topic. The more thoughts (and perspectives) the better, so come on in and join the party. Loyal participants, novice writer, or long-time silent reader: you are welcome.

In the spirit of reflection and gearing up for the holidays, this month’s topic is your holiday message. What is it that you would tell your Aunt Sally when she says, I really wish there was something I could do to make your life better? Is there something you wish you could say to that friend who says Call me if you need anything?

Peace, Love, & Holiday Wishes
share with us your holiday message

If you didn’t have to worry about hurting anyone’s feelings or being prim and proper, what is that you would ask for or want people to know? Do you have a message of encouragement for our community? A request for support or encouragement or even basic understanding?

To participate, please email me at abigail.cashelle (at) gmail (dot) com with the title and blog url of your post by December 12. Please include PFAM in your subject line. OR if you don’t have a blog, feel free to comment directly on this post.

The final edition will be showcased here on December 15.

Best wishes (& many spoons to you),

Abigail Cashelle

What Chronic Fatigue Syndrome & Ehlers-Danlos Syndrome Feel Like

For the PFAM carnival, Duncan wants to know what my illness feels like. Well, Duncan, since you asked, my illness feels like ASDLKHGA[OYI2(&^#!$LJBFAPDGI09*^@~(*^{KLJAHSDGO[YAWEGFB;L. Got it? Oh wait, that’s how I feel about my illness.

imagine being the pea (rather than the princess)

What does my illness feel like? Well, it’s awful. There are no words to describe it. It makes you feel like you’re buried under a mountain of mattresses and like you can’t get out. In order to do anything (like walking across the room and putting your laundry away), you feel like you’re a robot trying to learn how to walk while waist-deep in an ocean of molasses. Things like light, smell, food, and inpatient people stress me out and stress causes pain which causes fatigue which causes me to lose weight (but also have something to talk about in therapy.) Illness numbs my mind so I easily lose my train of thought or just can’t think because wait, WHAT are we talking about again? That’s what chronic fatigue syndrome feels like.

Plus the pain. I don’t have any way to adequately describe the pain. Except that a pain scale of 1-10 is just WAY too simplistic. I can tell you about persistent, throbbing, intense, background, fluctuating, numbing, stabbing, and localized pain. I can tell you about achy pain, about the feeling that you can’t use your eyes or ears correctly & you guess that can be called pain too?

Ehlers-Danlos syndrome or a connective tissue disorder (if that’s what I have). Well, pretty much that means that anything is more dangerous, so you’re constantly having to be alert. Try doing that at the same time as battle brain fog. There’s no point in trying to have energy for anything else. Anyways, I have to be really careful when I walk or reach for things or lay down or write or whatever, because my body is super flexible. That means I can sit in some really awkward position and not even realize it until six months later I’m trying to figure out what that stabbing pain is in my hip. Oh? Sitting with your legs double-crossed isn’t normal??? Ooops. My left elbow gets pulled out of joint pretty easily, so I have to make sure I don’t slam that elbow against the wall while I’m asleep or try to lift things with just my left arm. It means that I fall really easily so I have to wear tennis shoes all the time, and even then I’ve fallen on flat surfaces and had to spend months in physical therapy. It means that I can’t wear fun shoes like all my friends and they like to make fun of me for it. It means that I have to wear long sleeves and leggings if I want to be outside at night in the summer; why? Because I bruise really easily and mosquito bites turn into bruises and then I look like a victim of child abuse or maybe domestic violence now that I’m older. It also means that I don’t have a typical response to almost anything, so add a huge amount of frustration to everything.

in case you forgot what Oscar the Grouch typically looks like

It means that I come across as a very cynical person. Abigail, are you sure you need to wear leggings to watch fireworks? I mean, why are you so worried about people thinking you’re a victim of abuse? That’s ridiculous. Everyone can see that you’re happy. OR Abigail, why don’t you ever want to have a good time? Maybe things will just be fine this time. Mostly, I’m just very practical. I’ve discovered things like if I’m around loud noises for an hour, sometimes I’ll be in bed for four hours recovering. So guess what? Going to that church service just isn’t worth it. Or it takes forever for those bruises to heal, so I’m not taking my chances. Because people do ask.

I’ve become an Eeyore. He’s cynical and doesn’t look at the bright side of anything. But, he’s still pretty happy. He’s not like Oscar the Grouch. He has friends, and he cares about them. He likes the color purple and knows that going to a birthday party is important. He just looks at life differently. Because that’s who he is. And so, most of the time, I have Eeyore days. I’m being honest & transparent. That might come across as Eeyore the cynical. And that’s okay. Because I like Eeyore.

In fact, I’ve decorated my bedroom with an Eeyore theme.* Just a little bit. And more in a sophisticated way than nursery decor. It’s not super obvious because I didn’t want to overwhelm my friends with doom and gloom. But seeing him makes me happy. Because he gets me. That life is hard. And painful. And exhausting. So he’s peeking out of various nooks and crannies.

And to give you a glimpse of what my room could look like, I compiled this treasury on etsy. It’s a bit much, especially since I have nowhere near that many light switches to cover. But it’s the general sentiment.

with love (and honesty),

Abigail Cashelle

___

*I gravitate towards smiling Eeyore though. He’s surprising not that hard to find. But you do have to look. And that’s the Eeyore I know.

PFAM June 2013: Getting the Attention You Need

This month’s topic for the Patients for a Moment blog carnival is “getting the attention you need”, especially the medical attention that you need as a chronic patient.

Barbara at In Sickness As In Health explains that she takes her husband with her to appointments. That seems to get male doctors’ attentions (though not female doctors), but it also gives her an extra layer of support. Someone else gets to do the remembering, the telling, the thinking.

Rhiann Jones at My Brain Lesion and Me gives us a list of suggestions for tackling medical appointments. Lydia Hendry at A Path through the Valley offers another list of ideas. Take notes. Be assertive. Are you writing this down??

Duncan Cross admits that he’s gone to some extremes to get the attention he needs from doctors. Now he just uses the dreaded phrase “suicide ideation” to get their attention and prevent them from ever prescribing the “miracle drug” again. (Right there with you Duncan.) It’s what some other folks called “brutal honesty”.

Rachel Tanner at Fluted Cups and Ampersands admits that you can’t always get what you want, but that one of the things that chronic patients want besides getting attention from medical professionals is for ordinary people in their life to care!! Just because we have an illness doesn’t mean that we become superhuman and don’t need friends just like everyone else.

A few folks got inspired by the prompt and ran with it. While these posts interpret “attention” differently, I think they are helpful to give us a bigger view of what’s going on here. After all, that’s usually the problem we have with medical professionals (or just our friends). They only see the convenient facts.

Emma at Your Doctor’s Wife explains that even she can’t get Dr. H’s attention and she’s married to him!! She’s fallen and wound up seeing stars, a situation that could be considered a medical emergency. Nothing happened. No Superhero Dr. H coming to the rescue. Isn’t that supposed to be the whole point of having an in-house medical expert?? While her story is somewhat hilarious (if you’re not Emma), it does highlight the importance of knowing a person’s vocabulary and being willing to speak their language.

Lydia points out in her post that if you listen to someone, they’re more likely to listen to you. I’ve discovered that principle as well. It’s easy to forget that doctors are people as well, but that change in attitude can be helpful if you want to be seen as a person!!

AfternoonNapper points out that there are multiple ways of advocating for patients and for getting certain types of attention. She writes about Regina Holliday and her art project ‘The Walking Gallery’. “The Gallery consists of medical providers and advocates who wear patient story paintings on the backs of business suits…. This “walking wall” of 200 individuals who wear personal patient narrative paintings on their backs is changing minds and opening hearts…. They are providing a patient voice, and by doing so, are changing the conversation.” The whole idea is so cool, and it’s something I hadn’t thought about when it comes to getting the attention I need for my very specific situation: the power of community! If you’re creative, community can really push for change, for much needed change, in a way that no one person can.


All in all, it’s a tough topic. It’s something chronic patients face every day. But I’m encouraged that the response from everyone is not just to wither in frustration and berate “the system” that works against us. People have strategies, and they keep trying. And, we eventually do find help. Maybe not exactly the way we want or from the people we expected to give it, but we do get what we need. eventually. There are ways to be proactive. And if it makes us better people, better citizens, better sons and daughters, in the mean time, I guess I can’t complain too much.

Abigail Cashelle

Edited to add a late submission: Tonja at the Pink Doberman adds her own perspective of living with a traumatic brain injury and getting the help that she needs.

PFAM: Call for Submissions — Getting the Attention You Need

Please Pay Attention
would a neon sign work??

Greetings, folks!! I’m hosting another edition of the Patients for a Moment carnival. Each month a host solicits submissions on an illness-related theme. No need to suffer from a chronic illness yourself!! If you care for someone you love who has such an illness or if it’s your job to, we welcome your perspective as well. We’re here as much to complain about life as we are to learn about it.

This month’s theme is: getting the attention you need. In the hustle and bustle of medicine and healthcare, it’s easy for patients with long-term (and confusing) illnesses to be dismissed. We know that we’re hard to comprehend, and we’re not an easy problem to be solved. How do you get your healthcare practitioner to take you seriously and give you the time and attention you need?

As human beings, we like quantifying things, simplifying data in a way that streamlines the process of understanding it. Those simple questions: how would you rate your pain on a scale from 1 to 10? or what’s your birth date? or let’s see how much you weigh today. Do they really capture the magnitude of the problem? I’ve had doctors obsess about the fact that I keep losing weight or the fact that I’m “too young to feel this sick” so therefore I must be another whiny teenage girl. There are ways in which people try to quantify or rationalize illness that obscure a lot of things. They’re useful for figuring out whether someone sprained their ankle or broke it but perhaps not so useful in other situations.

pay attention to me mister
eyes on me
NOW

What do you do? How can you bring information to the table or be a cooperative patient without being dismissed? Besides firing impossible practitioners, what are strategies that you’ve developed?

Everyone is welcome to share a blog post reflecting on “getting the attention you need”. To participate, please email me at abigail.cashelle (at) gmail (dot) com with the title and blog url of your post by June 12. Please include PFAM in your subject line.

The final edition will be showcased here on June 15.

Remember: no submission is too small or big. I can’t wait to hear & to learn from you.

Happy writing!!

Abigail Cashelle

PFAM: Recharge?

Duncan is hosting Patients for a Moment this month, and he asks us how we recharge. Well, Duncan, funny that you should ask. I just got home from a whirlwind weekend of visiting family, attending a wedding, and seeing some old friends. Right before that, I just finished a whole semester of working really, really hard to try to satiate the ravenous lion only to wind up leaving my graduate program. Oh, and to top it all off, I’m battling massive inflammation of unknown origins; after the last specialist told me that she was SO glad I was responsible and came in to see her, then she capped the exam by telling me to go home and “be well”. (Ummm, yeah, I think Dr. Bryan was right when he said, Well, if only it was that easy.)

So apparently, I have been charged to “be well” and all I feel like is being trapped under a mattress (or 500). There are a million things I could be doing like applying for jobs or doing laundry (or updating this blog or reading my own email!), but I just don’t feel like it.

iPhone 3GS Low Battery
except my battery has about -5% remaining

I’ve decided that I need to take a week off. A week where I do nothing. So far it’s been interesting. I’m not sure that I’m getting better. But, the key thing here is that I’m not getting worse either. And in the world of vicious circles of downward spiraling symptoms, that is a MAJOR accomplishment.

Some of my friends have come over to visit me. They’ve brought food and presents and fun stories. But mostly I’ve just tried desperately not to fall asleep when they’re here. Diana even came and watched a movie with me, and I wound up laying down on the futon through almost all of it.

It’s hard not to do anything. But I’ve decided that in order to recharge, I need to stop doing stuff. Just say no, so to speak. Just roll over and keep sleeping. And not feel guilty for not doing anything. All the stuff I normally do to recharge? Have friends over, write letters, work on crafts, play the piano….. Yeah, I don’t have the energy for those either.

After all, someone called me yesterday about a credit card application. After about 30 seconds of me trying to think and failing miserably, I just told him to nix the application. I was so glad it wasn’t someone following up on a job application. Because I would have probably told them the same thing. And when a girl gets like that, it doesn’t matter what things are on her to-do list. Recharging gets priority. Because this girl has been running on empty for far too long.

Abigail

Counting Our Blessings: ME Synchroblog Part II

We’ve been writing and talking about blessings in the midst of illness. And by the positive, I’m not just referring to the “silver lining” but the substantially good things we’ve experience since we’ve become ill (or because of it.) {gasp}

Sarah at Dead Men Don’t Snore confirms the bitter truth we all know (and perhaps try to ignore.) Having any illness is hard. Add chronic, add young adulthood, add debilitating, add misunderstood, and you get a very difficult experience. It sucks, majorly. There’s no way around it, folks.

Arielle at Dear Little Disease confirms that having ME/CFS is really not that fun. Yes, she’s adopted a cat. And, true, she now has a “valid” excuse for riding her skateboard around the house(!!) but I think if she had a choice, she would run for the hills when ME/CFS came up as an add-on to life.

Despite the devastation ME/CFS causes, the consensus is clear: we as the ill have learned to value life in a new way and our hearts have been broadened.

Lydia at A Path through the Valley writes that she’s learned that there’s a value in living. Just being is an accomplishment, and something to be treasured (sick or not). Furthermore, she’s discovered “telling the truth about suffering breaks down barriers”.

Barry writes that in addition to drawing closer to God and finding new hobbies (me too!!), his heart and mind has been broadened.

Charlotte at Info Freak agrees that somehow being sick has made her a nicer person. She writes, “It seems an odd thing to admit as I wasn’t particularly terrible before, yet I have noticed I am definitely a lot nicer these days. I have more compassion for my fellow humans having experienced some pretty low times at the start of my illness and now try not to judge others as I realise we all have our own particular trials to go through.” In fact, she admits that she’s more forgiving toward her husband and more flexible about the way things have to be.

Lastly, Tricia comforts Sarah that frustration by the difficult of life with a chronic illness means “you still have a lust for life and if you still have that then you haven’t given up”. I like it Tricia!! Having a “lust for life” is important, no matter what the cause. And that’s what Lydia means when she said that she’s discovered a new perspective on life.


I would definitely, without hesitation, run for the hills if given a choice between having ME/CFS and not having it. This conversation is far from over, but it’s definitely helped me consider illness from a different angle.

For all those people who say that a “positive attitude” is all you need for healing, that doesn’t mean that you just wish the illness away. It doesn’t mean that a “negative attitude” results in physical pain. A positive attitude doesn’t mean that you let go of hope for a cure or for understanding from the world around you.

It does mean that you’ve come to terms with the concept that a bad situation can make you a better person. It means that you’ve decided that you don’t have to fully comprehend something in order for it to be real. It means that you’re not afraid of the truth, you’re not afraid of the world’s scorn, and you’re not afraid of the difficult.

Abigail Cashelle

Counting Our Blessings: ME Synchroblog

Sorry that I’m a bit late in posting. Time zones & chronic fatigue = a later post.


Having a debilitating illness is hard. It’s worse if you’re young. It’s worse if it’s chronic. It’s worse if it’s invisible or misunderstood. But the point is: it’s hard. Period. No further words necessary.

Today’s post is about counting our blessings, about the good that has happened since illness struck (or even because of it.)

The biggest thing for me is that I was an extremely judgmental person. I don’t think my parents meant it this way, but somehow I grew up with very strict ideas about what being right was and that turned into me being a teenage judgment policegirl. I don’t know where I am on the spectrum from judgmental to discerning. I’d like to think that I’m fairly discerning. And I know that maturity has something to do with the change. I don’t really know. But I know for sure that illness has taken away the “extremely” in the “extremely judgmental” label.

Just writing this blog, I’ve been impressed by the people who’ve accepted my illness for what it is: hard. They don’t need to know the details. They don’t even need to understand what or how or why or when. People like Taylor and Timothy and Aaron. They hear my suffering, and they honor it.

I used to help teach character lessons to elementary school kids, and I had a lot of trouble understanding the character “honor”. I knew that Scripture commands us to honor the king and our parents. But besides that? I thought it was only for important people. Now I realize that there’s an aspect of honoring someone else’s experience. Recognizing their humanity. Loving them for being. Now I can sing this song with passion: I’d like to honor you. What can I do for you? I’ll stop and figure it out.

I’ve read a few people’s memoirs that reflect on this same point, and I’d like to leave you with some of their words:

“Thank you for wanting to know about me,” she said before leaving, a statement that would resonate in the coming years, when many people demonstrated that they would rather not know about what I was experiencing…. I was learning a difficult but powerful language of truthfulness that many healthy people find hard to bear. (Marguerite Guzman Bouvard, Healing: A Life with Chronic Illness)

If there’s a lesson here, and of course there is, it’s this: you are not your illness. You have an individual story to tell. You have a name, a history, a personality. Staying yourself is part of the battle.

…Given her prognosis, Sheila is a rare success story. But it’s not the end of the story that’s the only important thing. It’s how Sheila lived with her disease, how she developed a narrative of herself… in course of many shocks and threats and how she communicated all this to me and to the medical students. In the course of my long career, I’ve seen many people battle their illnesses, and I’ve come to see that each person writes a narrative as an individual, as a thumbprint. Some stories are about successful adaptation or, happiest of all, about conquering the foe; others are darker, more tangled, more troubled. But every story deserves respect. Every story has a real, actual teller, and needs to be listened to. (Julian Seifter, MD, After the Diagnosis: Transcending Chronic Illness)

It’s hard to be understanding, particularly when your life is difficult. Sometimes, there are moments when I just snap. Do I really care that your girlfriend distracted you from getting your homework done? Or that you’ve had a hard semester because your checking account went into overdraft?? Other times, dealing with a chronic illness makes me extremely sympathetic. One of my students this term was in a serious car accident (considering that no ambulances arrived on the scene.) I didn’t need him to describe the whole situation to me. I just wanted to know if his girlfriend was okay. And I was more than happy to give him a long extension on the assignment. I knew that he was dealing with a lot of people and a lot of emotions and a lot of money all on a tight time schedule; plus I recognized that he had other classes as well. It was easy for me because I’ve been there. Illness has made me more sympathetic (if still someone selectively.) I love what Laurie Edwards writes about this:

No one has a market on suffering. Though our perspectives are often quite different, the healthy and the sick are entitled to the same empathy and understanding from others when times are difficult. Of course what we each define as a “tough time” is always going to be relative, but that’s exactly the point: suffiering is determined by the sufferer, not by the observer. When people tell us they are having a tough time, we should try to be supportive friends or earnest listeners. (Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties)

I’m not here to say whether or not chronic illness is worth the pain and suffering for the character that is shaped from it. I still think I would run for the hills if I had a choice. But for me, it’s been important to recognize that everyone experiences hardships. They may be different. They may come at different times. But, the question is: do we gain anything positive out of it? Or is the whole experience in vain?


Let me know what you think. Write about the ways in which you’ve seen blessings in times of hardship. Post something on your blog or youtube channel or instagram or other social media platform. Post a link here with a brief description. I’ll post a summary & reflection late tomorrow based on all your suggestions.

Abigail Cashelle

P.S. If you post something on twitter, please include the tag #meaw2013

PFAM February 2013: Medical Literacy

This is the February edition of the “Patients for a Moment” blog carnival.

Literacy (noun): the ability to read and write; competence and knowledge in a specific area

How much should a chronic patient be expected to understand about his own medical condition? How much information are medical practitioners expecting him to bring to the table?

I’ve had conflicting opinions on this. I’ve had extremely fruitful conversations with doctors like Drs. Leo and Samuel where I’ve attempted to talk in their language. Gregory helped me put together a medical resume of my medical history that I’ve faithfully carted around to medical appointments for the past year or so. I find myself calling Dr. Bryan or Elliot when something comes up and I’m confused. At the same time, I’ve also worked in a hospital before. I remember those patients who thought they knew what they were talking about… but really didn’t. We had a name for them: annoying.

Barbara of In Sickness and In Health discusses the importance of researching your own condition. She deals with the fine line between being informed and being paranoid. It’s useful to know what the key terms are and what signs one should look for. At the same time, it’s awfully easy to fall into medical students’ disease where one thinks one experiences the disease currently being studied!!

Toni at Turning Straw into Gold talks about the ways in which one can approach internet research and how to bring up issues to your physician or medical practitioner without being snobby. I found her concept of diplomacy helpful.

Aviva of Sick Momma discusses why she started becoming mistaken as a medical professional. Simple knowledge of what has already been done gives command of the situation, which can save chronic patients from going around and around in circles, repeating the same (pointless) diagnostic tests.

Lydia of A Path through the Valley talks about medical literacy as a way to embrace your own identity. As a chronic patient, chances are that you’re the one who has to live with the consequences of it day in and day out. Maybe it’s a good idea to have a clue what it is you’re living with??

From the opposite perspective, Emma at Your Doctor’s Wife tells how the assumption of medical literacy can lead to some interesting conversations.

And Dr. Bryan shared on a social networking site a fantastic story about how medical literacy isn’t always everything. Medical professionals are trained to look for certain things and ask certain questions. If you’re coming at a problem from a different perspective, chances are that not only will you miss something they’d see but that you’d also see things they’d never think to take note of. And that can be important in the field of medicine, especially if you’re facing a disease that you’re going to be dealing with for a long time.

All in all, I gather that the consensus is that being an informed citizen can be useful. If nothing else, it can give you confidence in an immensely confusing situation (when it’s not making you quake in your boots.) I’ve found that finding information and asking questions can be useful; I like being able to have conversations with medical professionals about this new info and new questions. I also find that having a medical resume and being in command of your care makes sure that you don’t get swept under the rug in the 5 minute check-ups. And, it’s always fun to have a laugh at the ridiculousness of the medical profession. Not that any other profession doesn’t have its weaknesses… but it’s good to laugh every now and then.

Abigail Cashelle

Disclaimer: I didn’t get very many submissions, so I was expansive in what I considered to be submissions. I hope that this paints a fuller picture and also is helpful to those of us who, for reasons out of our control, have to face this issue fairly often.