Confessions of a (chronic pain) graduate student

I usually hope that being chronically ill has softened my edges. I hope that it has made me more observant of whether or not something is accessible, that I understand that everyone has stories I do not know, that illnesses are frequently unseen. That I am always aware of the fact that there are those who are far worse off than me. I hope it has made me more accepting of the fact that things impact different people in different ways, and a small problem to one person may be an insurmountable barrier to another.

Occasionally, though, there are moments when being hurt and sick all the time change me into something that feels like broken crystal in every way, an invisible weapon of razor sharp edges. There are times when rage and jealousy rear their dark ugly heads and I find myself wanting to scream at someone for complaining about mild allergies, a busy social calendar, or a frickin’ hangover! I want to shake them and scream about everything I can’t do!! I want to holler about how they made choices, they could make those choices!!! I want to cry and kick my heels and pound my fists on the floor like a small child, wailing about how I wish I had the chance to have that particular problem at all. It costs, in those black moments rimmed with the red of pure fury, to put a smile on my face and sympathize, as I sometimes must do.

But it costs far more to lose it. It can cost me a friendship. It can cost me a connection to another person, one who may legitimately just need the space to process a decision or an emotion. It can belittle another human being whose fault is not being me. It will cost me a part of myself, as well, in the end, to give in to my own enraged impulse. Yes, occasionally there may come a time to gently point out that, compared to others, things may not be so bad, and perhaps a little perspective is in order. But that shouldn’t be a gut-reaction from my own pain and frustration… and so I will continue to struggle. And when I lose that struggle, as occasionally I do, to apologize humbly and with whatever grace is lent to me at the moment.

 

 

Hitting A Brick Wall

This Little Lyme of Mine

Those of you who follow my blog probably already know my story. For those that don’t, I’ll keep it short and sweet. Since 2013 I have been battling an undiagnosed chronic illness. It has mimicked lymphoma, lupus, MS and the like, and has baffled a dozen different specialists. Today I have found myself consumed by the stress of my doctor’s experimental treatment coming to an end without improvement. With no answers in sight, I feel lost and afraid. I applied to the Undiagnosed Diseases Network only so that my medical records would be “misplaced” by the post office, delaying my already 6-8 week wait for an answer, an answer that would most likely be no,as I am not what is considered a good candidate for the program. I have spent the better part of my day scouring the internet for options. I just need answers, anything that can point…

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#besidesmydiagnosis #10

#besidesmydiagnosis…I have many dreams and ambitions such as?

 

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A wacky and whimsical kaleidoscope of butterflies

Oh, dear. Now you’ve done it.

While I’ve never been good at the “5 year plan” as proposed by advisors and professors over the years, and while living with chronic illness has made me even more a person of the moment, that doesn’t mean I don’t still have dreams and ambitions. Some to share with the class, you say? Ok!

Opening a restaurant at the Wye. Opening another chain of cafes that have the kitchen carefully isolated so no cooking smells emerge, a safe place to go hang and eat plain noodles and boiled chicken and yogurt in the most luxurious and/or casual environment imaginable with your nearest and dearest. Getting latex-free twisty balloons on the market. Putting together fashion designers with people with chronic disabilities and illness, to design entire lines of (especially dress and business) clothes that hide wires and other devices, including mobility assists. (I know most people have to get their clothes custom modified anyway, but some really neat base designs could help, I feel.) Partnering with 3M and hospitals to make different colors of wires available for Holter monitors, as well as neat designs on electrode patches, especially for kids. (If anyone you know is already doing this, you’d be interested, or you have contacts to help make this happen, I hope you’ll comment on this page.)

Add to that finishing a dissertation, getting a bill-paying job, traveling, maybe eventually not being single, owning a very large dog, becoming a better photographer and writer, returning on the occasional basis to being a professional musician, being a good friend… learning to make frittatas… it will be a fun and busy life indeed.

 

 

#besidesmydiagnosis #8

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BnF reading room (not my picture — yet!)

#besidesmydiagnosis… I would love to travel to?

Almost EVERYWHERE! Banff National Park in Canada, Pirin in Bulgaria, fjords in Norway, the Great Barrier Reef. I want to toss a bucket of boiling water off a balcony in Russia and watch it turn to snow, play baseball at midnight under the summer sun in Alaska, see the cattle ranches on the hills and plains of Brazil, visit the Bibliotheque nationale in Paris and then eat croissants, cheer at a cricket game in England, dance in the rain in Wales, go adventuring in New Zealand, watch an opera in the Sydney opera house and visit the Empire Coffee Co. later, explore the Harry Potter theme park, see the mountains in China, take pictures of butterflies everywhere!

#besidesmydiagnosis #4

DSC_02014. #besidesmydiagnosis… My favorite pasttimes are?

There’s so many! Like many of you who have abruptly had chronic illness remake their lives, I’ve had to remake some of my hobbies so I can do them easier now that my body isn’t quite so cooperative. For instance, I still like to walk, even if I don’t do solo photography hikes in the Rockies anymore… which is probably a good deal safer all around.

Reading. Yes, it’s pretty much a profession and a hobby for me, graduate student that I am, a circumstance that many would consider to be a wee bit unhealthy. Although in my defense, the types of reading I do for fun vs. graduate school do tend to be different. Into that same category of passion meets profession goes listening to and playing music, and writing. “My avocation and my vocation/ as my two eyes make one in sight…” (Robert Frost, “Two Tramps in Mud Time”). How blessed I am.

However, photography, playing with unusual and not always successful smoothie combinations, gardening, and experimenting with food are all past-times quite separate from my professional life.

#besidesmydiagnosis #2

DSC_0034.JPG#besidesmydiagnosis …the things I have read most are?

Oh my gosh. Books about music. It’s my degree, after all, but I do enjoy it. For other “free reading” – loads of stuff! Books about photography, Cornelius Funke’s Reckless series, A Beautiful Blue Death by Charles Finch, the Magisterium kids series, Jeeves and Wooster stories by P. G. Wodehouse, fantasy by Patricia McKillip, the Penderwicks series…  I did just get back from vacation, after all. 🙂  I love reading well-written children’s/tweens/early teens books.