By Alyssa Hollingsworth
I have measured out my life with coffee spoons--which is a poetic way of saying, I am a spoonie on several levels: Rheumatoid Arthritis, Raynaud's Syndrome, Hashimoto Hypothyroid, Type 1 Diabetes, Celiac, and gastroparesis. It all started when I was 17, and those last three diagnoses came in this past year (I’m 25 now).
Being a spoonie is straight-up exhausting to the tune of I-don’t-even-want-to-breathe, need-to-take-a-break-while-buttering-toast, it-was-a-bad-idea-to-scrape-this-ice-off-my-car. Sometimes it can be hard to make and maintain relationships, because it takes so many spoons to get out of bed, walk the dog, and go to work or school. There just aren’t a lot of spoons left for coffee or group activities or noise in general.
Throughout the years, though, relationships have boomeranged back time and again to encourage me in surprising ways. These are five gifts that have made me smiled on hard days, gotten me back on my feet, or just plain kept me going.
A Listening Ear
Early in my junior year of college, my finger joints started to fall apart and I had three different hand surgeries in just about as many months. I worked in our Public Relations department with this guy named Alan. Picture Santa as a Georgian photographer, and you’ve got Alan. He would stop by my desk every day and ask how I was doing. He listened to my complaints, remembered when I had my next appointment, and on particularly bad days he would sneak into the president’s office to steal me a soda.
When he asked, he really wanted to know. Not a lot of people are like that.
Often the common denominator among these rare birds is a personal experience with illness. One of my best friends had cancer in the past, and we bond over similar medical tests and the difficulties of explaining our experiences to non-sick people. My old roommate (Kyley)’s dad had cancer, too, and long-term complications following his treatment. Even my current roommate gets it because she had swine flu!
Every time I encounter someone who genuinely wants to know how I’m doing, it’s a blessing.
Every single one of the following gifts resulted directly from someone really listening.
Handwritten Notes
Letters that come out of the blue have long been a love language of mine. I collect them, and the ones that are particularly timely or kind go straight to the corkboard in my room.
Once, I was feeling so terrible that I took heavy pain medication in the middle of the day and crawled into my bed to sleep. When I woke up, I found a sticky note from my roommate (Kyley) attached to my pillow. It just said, “I’ve gone to the library so I don’t disturb you. I’m sorry you feel so terrible. I hope it gets better this evening.”
Do I still have that sticky note? Yes, yes I do. Because I am a hoarder.
But also because it meant a lot to me.
Here’s an insider secret: Spoonies feel like they’re a burden.
We feel like a burden at our jobs because we have so many doctors’ appointments. Or like a burden to friends because we have to cancel on stuff last-minute. Or like a burden on family because of finances, dietary inconveniences, or lifestyle changes everyone has to carry.
My roommate’s note expressed her empathy, concern, and good wishes. It alleviated any guilt I might have had about “forcing” her to be accommodating. It validated how I felt and offered encouragement.
I love me some handwritten notes.
Living Aids
In an email with some writing buddies, I happened to mention that I was having trouble reading. My hands hurt if I read too long, because I couldn’t hold the book open. Then on Valentine’s Day, I had a package from one of them--and inside was a portable book holder (like this).
I’ve also had friends send me jar openers and key turners, stepping stools and fun baggies for my diabetes supplies. Most recently, my current roommate came home with a cute lunch bag after trying (and failing) to find anything that met my dietary requirements at the place she was buying dinner. These sorts of living aids hit the sweet spot between practical and thoughtful.
They normally mean that someone’s been listening to my needs, and they take it a step further by providing some relief.
Now when I’m having a hard time opening a book or when I need to get out some insulin, the aids I use remind me of the friends and family who stepped up to help.
Rheumatoid Arthritis means that my fingers are very sensitive--whether to the dreaded firm handshake or opening a door. So one day when I went the first day of class and a boy accidentally closed the building door on my hand, I almost keeled over in the hallway and cried. (Instead I tried to comfort him and also still cried. This isn’t just a gender thing about chicks and guys and whatever. Spoonies spend a lot of time comforting other people.) I joked about it on Facebook and for the most part went on to forget the incident.
But a few months later, I received an unexpected package from one of my Facebook friends. Inside were soft, plushy, hand-knitted fingerless gloves. The note said, “To give you some cushioning next time someone tries to close the door on you!”
They normally mean that someone’s been listening to my needs, and they take it a step further by providing some relief.
Now when I’m having a hard time opening a book or when I need to get out some insulin, the aids I use remind me of the friends and family who stepped up to help.
Fingerless Gloves
But a few months later, I received an unexpected package from one of my Facebook friends. Inside were soft, plushy, hand-knitted fingerless gloves. The note said, “To give you some cushioning next time someone tries to close the door on you!”
These gloves are still my all-time favorite. I wear them frequently, and especially when I’m feeling extra fragile. Plus they are so soft.
This is by the far the most specific, wonderful gift I’ve received.
It’s junior year of college and tomorrow I’m going to find out if I have to have a third hand surgery. When my friend Kyley asks how I’m feeling about it, I tell her I don’t know. I’ll just have to see what happens.
She tells me she has a paper she’d like me to proof, and we make plans to have her bring it over to my room that evening before dinner. I wait for her in my dorm later, trying my best not to think about the surgery.
There’s a knock. When I look outside, Kyley and another friend are standing there, arms ladened with food and drinks. Turns out, the paper was a trick--they’d been planning this all along.
We make a picnic out in the fields by my dorm and eat together while the sun sets and the deer graze in the grass. (No lie. My college has an overpopulation of deer.) I show them some of the moves from my dance improv class and we laugh about campus controversies.
That night, I go to bed grinning instead of worried.
There are very few times in my life that are pain-free or unanxious. That evening was one of them.
Alyssa was born in small town Milton, Florida, but life as a roving military kid soon mellowed her (unintelligibly strong) Southern accent. Wanderlust is in her blood, and she’s always waiting for the wind to change. Stories remain her constant. She writes about writing, chronic illness, and travel adventures on her blog. You can also find her on Twitter and Pinterest.
A Surprise Party/Dinner
This is by the far the most specific, wonderful gift I’ve received.
It’s junior year of college and tomorrow I’m going to find out if I have to have a third hand surgery. When my friend Kyley asks how I’m feeling about it, I tell her I don’t know. I’ll just have to see what happens.
She tells me she has a paper she’d like me to proof, and we make plans to have her bring it over to my room that evening before dinner. I wait for her in my dorm later, trying my best not to think about the surgery.
There’s a knock. When I look outside, Kyley and another friend are standing there, arms ladened with food and drinks. Turns out, the paper was a trick--they’d been planning this all along.
We make a picnic out in the fields by my dorm and eat together while the sun sets and the deer graze in the grass. (No lie. My college has an overpopulation of deer.) I show them some of the moves from my dance improv class and we laugh about campus controversies.
That night, I go to bed grinning instead of worried.
There are very few times in my life that are pain-free or unanxious. That evening was one of them.
Alyssa was born in small town Milton, Florida, but life as a roving military kid soon mellowed her (unintelligibly strong) Southern accent. Wanderlust is in her blood, and she’s always waiting for the wind to change. Stories remain her constant. She writes about writing, chronic illness, and travel adventures on her blog. You can also find her on Twitter and Pinterest.
As always you say what I think and feel about being the spoonie I am. Thank you.
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