I went to visit Grace this afternoon, and it happened to be Timothy’s day off, so I got to see him as well. Timothy had stumbled across some old music that someone had put in a discard pile at work, and so he brought it home, figuring that someone in the community who has a piano might want some sheet music.
Well, I don’t have my own piano (yet), but I do have a very awesome collection of old hymnals. I like having music to just play through on my violin (since I don’t have a piano yet.) I took about 8 months of lessons with Alana, so I can fumble through the violin alright.
Anyhow, I like collecting old hymnals, looking through different ways of scoring music and older versions of tunes we know.
So Timothy suggested that I take a look at the trash-turned-treasure. It turns out that it was three books from pre-WWI that were used for teaching high school music and choir classes. Nowadays, music teachers use iPods or CDs, but if you can imagine back to the days before cassette tapes, radio, and even phonograph records were common, the music teacher would have to play all the accompaniment herself!! That’s why back in the day, it was really common to have a piano in every classroom. And why piano was such a fundamental part of grade school curriculum.
Anyhow, these books are scored from a fairly advanced pianist, not just someone who took keyboard for a year in college. They’ve got a lot of old classics in nice settings: some scored for piano, others scored for voice. I’m excited!!
Too bad I’m not in a classroom at the moment. Otherwise, you’d hear some banging away. And my students would be singing presidential campaign songs or something.
Maybe I should go back to teaching Sunday School music….
So after I posted my rant yesterday, Larissa posted something along the same lines. She mentions how difficult it is to hear people say that they complain about the things in their life until they remember how challenging her life is and are grateful that it isn’t so for them.
I think Larissa has a lot more graciousness than I do. Or maybe it’s my recent bout of swearing. Those kinds of comments are really insulting to me. It’s not even someone acknowledging that my life is awful. It’s more of a “isn’t my life great?” kind of comment.
This sentiment has a sister sentiment: “Well, it can’t be all that bad. Just remember the starving children in Africa.” or something like that.
I’m not sure where God fits into that mentality at all. It’s more of a patting myself on the back because I’m taller than you or at least I’m not a midget.
But I’m learning that God calls us to different paths. One is not better than another. They’re just different. In the same way that a guy might be a good guy but just not a good fit for you, not all trials are meant to be ours. It doesn’t mean that they’re invalid or necessarily lesser. They’re just not meant for us in particular.
Larissa with her husband Ian
So Larissa, I’m glad that I’m not alone. Thank you for your honesty. But I also want to say that these are things that I admire about you, things that inspire me to be better, purer, stronger:
I love your writing style. I love the way that you use things like punctuation and capitalization to convey the tone. I’ve found myself mimicking your style sometimes.
I love your sense of fashion, the way you incorporate the old and the simple with the modern. When I saw your wedding pictures and the bridesmaid dresses, I realized how much my concept of clothing and appropriate colors has been restricted and how much there’s a part of me that wants to experiment. I’ve become more open to the idea of putting together things that weren’t designed to be together, just because, putting a vintage hymnal with a seashell might create something new.
I love the way in which you (and Ian) draw attention to the little things. I wrote once how much our life is occupied and governed by the little things. I was focused on how the small things can be what tips us over the edge. But you’ve showed me how much that can go both ways: sometimes the smallest gesture or thought can bring joy and peace and rest into our tumultuous heart.
I admire the ways that you celebrate your life: not just with words, but with pictures, with music, with Scripture, with memories. I’m very much an aural and tactile learner (ironic for this homeschool grad!) and so sometimes it’s hard for me to imagine how to capture things using senses other than my sense of sound and of touch. Through your blog and twitter and instagram, I’ve discovered how much can be captured in a picture or by the crafting of words. You’ve made me more aware of the world around me, just by being Larissa.
I love your name. I never met anyone with the name Larissa before. I think Clarissa Barton is the closest. Now I’ve met other Larissas, and the name conjures up the thought of someone simple, kind, generous, devoted.
Larissa, I’m so grateful to be your friend. We haven’t met face-to-face, but in so many ways, your journey has become a part of mine. I don’t know how or whether my life can ever serve as an inspiration to you. But I’m grateful for that God placed you in my life and for the ways in which He’s worked in my life through His work in yours. I see God growing in you, and it gives me hope that He’s also growing in me through all these things that we pass through.
I have a new pet peeve. It might have something to do with the fact that a lot of things are going on in my life right now. And I feel like I have no control over them. It might also have to do with the fact that this is supposed to be a period of healing and things are actually {gasp} getting worse!!
I (sometimes) have the patience of a saint, but when things get really hard, it seems that people say more and more unhelpful things and it gets harder and harder to just smile and nod.
Here are some of the trite comments I’ve already heard:
Have you tried _____? Because it helped my neighbor’s godfather’s cousin’s dog’s sister’s owner’s mother. (Ummm, okay.)
Your life seems really exciting. (Actually I wish it was boring.)
Have you thought about writing a book? (Yes, and I would rather my life be boring.)
Maybe you need to stop sleeping and start doing things. (Ummmm, yeah, that’s how I got here.)
Have you considered volunteering? For example, if you walked someone’s dog every day, you might feel better. (Ummmm, no.)
Maybe you’re bored. (Yes, because there is nothing I’d rather do than be sick.)
Do you go out looking for trouble? (No. I have too much of it as it is.)
Can you please tell me what your plan is? Or when you’re moving? Or what it is you want to do with my life? (How about I introduce you to my grandchildren? I think that might be easier.)
You just need to get along with people. (Ummm, doesn’t that take two people? I mean, if it takes two people to have an argument, it ought to take two people to have cooperation.)
A short update because some of you expressed concern after my last post. (Thank you.)
So, I don’t want to put all my eggs in one basket or count my chickens before they hatch, but here are a few things I’m at peace about putting out in public:
I (temporarily) am back at my apartment. After breaking down in Mr. Eric‘s office, I concluded that not being in the house was more pertinent than I had thought. I’m just back for the weekend and then will figure things out from there.
I made some phone calls and started praying about moving back to my hometown.
I made definite plans to visit a good friend and her husband for a week in early July. In a totally different town.
I talked to Grace about what had happened and about the things that stressed me out about the community. She said, Us too. Her week has also been exceptionally stressful… but she said that the silver lining is that I may be able to move into her house immediately. And she said that it would help her a lot to have me closer to her.
A couple employers called me to discuss potential jobs, here, there, and everywhere (aka remote employment).
I have appointments/conversations scheduled with Drs. Leo & Samuel this coming week where we intend to discuss plan of care for the next six months and what to do if I stay or go.
A lot is up in the air. I am kind of confused as to what God’s doing and preparing in my life. But I’m trying to remain open to what He has in store. And keep praying.
Someone shared with me this week that FAITH stands for Fantastic Adventures In Trusting Him. I’m trying to remember that. It’s better than swearing. Or pacing. Or wringing my hands. Plus, I’ve finally found some peace to sleep and heal.
Please pray. Pray for clarity. Pray for wisdom. Pray that the enemy would be bound. Pray that the right housing and employment opportunity would open up. And pray for conversations with the doctors, with Aaron and Timothy & Grace, and with friends. (I’m not sure what the secular equivalent is to praying, but as long as it doesn’t involve black magic, I appreciate all good thoughts and support and well wishes and whatever else seems appropriate.)
Growing in faith through faith in Christ,
Abigail Cashelle
I think I’m really burned out. I’ve noticed that I’ve been extremely mopey lately. And I’ve started swearing a lot. Which is extremely unusual. Usually I’m allergic to swearing.
Anyhow, I’ve determined that while living with Aaron and Timothy & Grace’s friends is quite an opportunity, I think it’s stressing me out more than it’s helping. I don’t really know the people that I live with. The community is also incredibly unpredictable. Most of the time I’m one of the only people home, but sometimes (and with almost no notice) someone(s) will just show up and be there to stay. Last night, after a terrible, terrible day, I came home to just rest and chill and try to forget everything that happened. But, lo and behold, a bunch of people showed up at the house for dinner. Which I’m all about dinner and fellowship and community. But really? When I wandered out (in my pajamas) to figure out why there was so much noise, I didn’t expect 20 people in my living room and a toddler running around the whole house. As the night wore on, it just got to be too much.
I love the ministry. I love what they’re doing here. But it’s times like these that I really miss Timothy & Grace (because they don’t come to these impromptu shin-digs. They retreat to the serenity of their house.)
I’ve come to the conclusion that the whole point of being here is to rest and recover. It’s hard to heal and think if I’m always stressed out and can’t hear the sound of my own voice.
I think, for my own sanity and for the sanity of those around me, I’m moving on. I don’t have a job yet. I don’t have a place to live. We still have no idea what is wrong with this most recent (and annoying) source of inflammation. But part of figuring that out will have to include transitioning out of this community, at least living here. I think part of my heart will always be here.
It was an interesting experiment. I’m really glad I did it. I’ll be here for a little while longer (and probably longer than I’ve been here already.) But I’m not going to linger here forever trying to make this work. Because all of this directly counters why I’m here in the first place. And, since I’m doing this for me, taking care of me entails doing something else.
I talked to Aaron about it already. He encouraged me to pray about it all. He also promised to pray for me. But he urged me to start looking into options to move back to where I was before I started graduate school. And we’ll touch base in a week to reassess.
Praying for clarity and for all the pieces to fall into place. Praying for strength for the next few weeks. Praying about all the conversations that will occur in the next week or so.
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.
Look for it Monday folks. I’m tapering off Lyrica, and it turns out that my experience is profoundly reminiscent of Duncan’s experience with prednisone. Needless to say, my whole body is kind of out of whack, so to avoid writing something I will seriously regret publishing one second later, I’m postponing the PFAM roundup until Monday.
As I’m reading submissions coming in for this month’s PFAM on “getting the attention you need”, I have begun to realize that my original concept was somehow flawed. I wanted to fight against the streamlining of healthcare, the homogenizing of symptoms and of feelings. I hate the way in which my symptoms don’t matter because it’s not cancer or the fact that I have absurdly low blood pressure is a “good” thing. But in the desperate need to get some attention for myself, I blurred together all healthcare practitioners, thinking that there must be a cookie-cutter way to get the help I so desperately want.
life of a grader
Because I look younger than I really am, most physicians don’t take me seriously as an adult. I’ve spent hours lying in bed trying to figure out what I can do to give an “adult” first impression. I remember really clearly that the first physician that took me seriously as an adult was Dr. Leo. At the time, I attributed it to the fact that I was grading blue books. Only someone who teaches college students would be grading blue book exams; therefore, I must be a college teacher and must be an adult. QED. But really? I think Dr. Leo would have taken me seriously as an adult even if I was reading Christian fiction. Because that’s the kind of person that he is. He’s not in a hurry, he’s willing to listen, and he doesn’t easily dismiss things even when he thinks they might be tangential.
Dr. Voluble knew that I was a graduate student. In fact, he spent many, many minutes telling me how I could be a better graduate student. (Outside his scope of practice, anyone?) It wasn’t that he didn’t know that I was an adult; he took that and ran with it, ran in an unhelpful direction.
Maybe I care about people too much. Maybe I’m hypersensitive to what’s going on around me. Maybe the girl who prayed for her classmate who was battling a hangover during class has turned into the girl who prays for the exhausted pregnant nurse. Maybe it’s just a part of who I am. But I’ve discovered that part of getting the long-term care that I need is getting to know my physicians (and other healthcare providers.) Not in a creepy way. Always maintaining professional boundaries, of course. But taking the five seconds to say, I hope you have a good day. OR congratulations on your promotion. It’s not just about giving them a token of appreciation. It’s about changing your attitude. It’s about realizing that you’re not feeding information to a robot in the hopes that the robot will give you the proper feedback. This is one human being talking to another. You’re paying for their expertise, their care, so the focus is on you and what you need. But that doesn’t make them any less human.
In the past year, I’ve had a healthcare practitioner win a major research award from the university, someone who moved to a new state, someone whose toddler died unexpectedly, two physicians who fell and strained their knees, and someone who is expecting a (first?) child. I either saw announcement elsewhere or the information had some bearing on scheduling and the like. None of these affected my plan of care directly. But I did find myself spending the five seconds to say Congratulations or I’m sorry.
not what medicine is supposed to be (except maybe Dr. Google)
Over the long term, these observations did change how I approached these practitioners to get the help that I needed. For the first few months, the physician who lost a child seemed lost in his own grief and frequently lost his train of thought. In my interactions with him, I kept everything really succinct and tried not to say, I need help with the following seven things. I picked the items that were most important and then presented them individually. I respected that it was hard for him to be back at work and tried to be patient. (I did consult other physicians about things I would normally have asked him, and I did wonder whether things would ever return to the way they were.) But I need his expertise and his genuine care for me, and at the time, that meant adjusting my strategies for getting the help I needed.
It was similarly with the physicians who strained their knees. One physician seemed extra happy and pointed out that being strong and working through any pain is the only path to healing. (See? Me too!!) The other physician was in a lot of pain and hobbling around the exam room, so he was extra irritable. Half of me was upset. I pay good money to see you, and how dare you not be in tip-top condition to devote your full attention to your client. This is a service-oriented industry, and you’re not giving me the service you advertised!!!! The other half of me understood. It’s the end of a very long day for him. Just take a deep breath, and figure it out. He’s trying really hard to help you even though he probably wishes he was a million miles away.
I don’t know if this is a rambling post about the Golden Rule. I don’t think it’s a post about accepting reality even though it’s less than ideal. But I do firmly believe that if we want people to see us as humans with specific needs and lacks, we owe it to them to view them that way as well. If we’re not parts on an assembly line, they’re not robots assembling either. Medicine might seem like a giant bureaucracy or one big monster, but in the exam room, it shouldn’t be.
So, I dubbed it the XXXXL exam room because it’s very big. In fact, Dr. Mark hurt his knee and has started avoiding that exam room because it takes too much time and energy to limp across. (Or maybe I’m just imagining things.)
Anyhow, last time I was at Dr. Mark’s, I took a quick peek at the label on the elephant gown. I kid you not. XXXXL was an underestimate. It said 8XL as in XXXXXXXXL.
I understand the concept of “one size fits most”. I also understand the need for stethoscopes to be able to get under the gown easily. But seriously?? Those gowns are huge!! And I can’t move in them. There’s SO much fabric that Dr. Mark is always pushing away yard and yards just to look at me. Isn’t that the whole point of an exam?? And I wonder what they give the pediatric patients.
It’s Day 5 at the new house and the new community. I’m loving it, although I’m still getting used to living with a lot of people and still trying to learn what the prayer & service schedule is.
At prayers and then dinner last night, the Lord put this on my heart for this season of my life: learn to receive as much as you give. The text at prayers covered Jesus feeding the 4000. I’ve always focused on the giving aspect, the part where someone had a certain number of loaves and fishes, the part where the Lord gave the food back to the disciples and asked them to distribute it, the part where they collected the remains which were more than the original food. But there’s also the aspect of receiving the food from the Father. In order to give, they had to receive something. What they gave wasn’t of themselves. It wasn’t something they created. It wasn’t even something they improved upon. Aaron shared that the beauty of this story is that it’s a picture of the eucharistic ritual. It’s a picture of receiving food from the Father. And, that being the basis of the gospel.
Later on, during dinner, I realized that the fact that I was trying to be green and rode with someone to dinner meant that I was stuck at the dinner without a means to get home besides walking. Everyone else walks, but with the chronic fatigue and all the pain, it’s not worth the cost to try to walk even the blocks between the houses and the chapel. On my own, I was just stuck. There didn’t seem to be any way out of this problem. But God provided a way, a sweet solution, that showed me a little bit more about receiving His blessing.
Grace encouraged me to find someone who had a car and to ask them to drive me to my house, drop me off, and drive back. It took me a while. But I finally asked Phillip. I barely know Phillip, but I was desperate, so I just asked him if he had a car and if he could give me a ride. He said yes to both and then gave me a ride the nine blocks. It gave me a little bit of time to explain CFS and my plans (or lack thereof) for this season of my life. I’m not sure what I expected his response to be, but it really surprised me. He said, I’m so glad that you’ve moved here and were able to part of this community more deeply. Please let me know if there’s anything I can do to make things a little bit easier or to be more supportive. We’re all here for you, and never be afraid to ask.
It was such a humbling experience for me. I realized that so much of my life has been focused on giving and giving back. Helping other people feeds my soul, and my concept of being part of a community has always been about what I can put into the communal pot (so to speak.) But I’m realizing that my time here may be a lot more about receiving than giving. Not that I won’t give at all, but that I shouldn’t be anxious that I didn’t help out enough in the kitchen today. Or that all I did was go to prayers and go back to sleep. Because that’s enough. And maybe that all God wants from me right now.
hidden courage 