HeartStrung

It was a cold night, late in fall or early winter. We all sat in the "Sunday room" together, each in our own cozy spots around the fire. My girlfriend sat in the corner with her knitting needles and a blanket. The metal needles clacked against each other as she moved rhythmically through the motions. I watched, as mesmerized by the flow of it as I was by the fire in the fireplace.  "I always wished I could learn to knit," I said. She looked up, smiled, and said, "I will teach you." That night, she gave me the basics: a pair of straight long needles, hemp yarn from her basket, and the how-to of the knit stitch. I awkwardly practiced the stitch over and over, my elbows stuck out to the sides, twisting my fingers and sticking my tongue out while I tried to learn this new thing. She gave me tips while I sat near her and reminded me that with time, I would naturally find comfortable ways to hold the yarn and keep a steady tension. It was months before I finishe...

  Photo by Fred Kearney on Unsplash The colors bleed together     into a mass of indistinguishable shapes a swirl, like the background     when you spin on a tilt-a-whirl the rising discomfort, straight from the belly, the pressure at the back of the head, a chorus of discomfort     singing above a symphony of symptoms.

  I reach, right arm across,      twisting paraspinal muscles,          stretching but only succeed     in straining          inflamed tissue.

 Everyone is so excited to be sort of, possibly, probably, in small ways, coming out of pandemic life and "getting back to normal." I want to punch something or cry every time I hear, read, or otherwise take in someone else's feelings about this. As I inspect these feelings, I've come to realize that I've got layers on layers of trauma surrounding the pandemic. My trauma differs from the trauma that all the "normal" people talk about because it's compounded trauma. For example, pandemic isolation for me comes on top of a growing isolation that had already been happening for 9.5 years before the pandemic started. And my isolation won't end when pandemic isolation ends for all the healthy able-bodied people in my life. It won't end probably ever. And that's just one example.  I feel trapped a lot lately. This isn't a new feeling for me. I have a sense that I've felt imprisoned more often than not in my life, penned in on all sides a...

I am at the dentist’s office, reclined in a dental chair, about to get my teeth cleaned. She leans over my face with her arms at the ready and starts talking. I look into her eyes, through the face shield, picturing her whole face under the mask from her freckles to her smile lines; all the unique features of her face as far as I can remember them.  She is telling me about pandemic life.  “...and while we waited for my daughter’s COVID test results I started spiraling. I started thinking we were going to have to quarantine in the house again and I just lost it. I can’t do that again. I have PTSD from when the country shut down in March,” she tells me. I’ve never been so grateful to have her hands in my mouth during a conversation before because I don’t know what to say. Hearing people talk about their experiences with the pandemic and its effects on our lives feels surreal to me. Time and again I am struck speechless to someone’s COVID revelation. There are just so many parall...

  Dear Reader, Are you out there?  This month in my writing group our theme is "Trust" and I have so much to say on this theme. First off though, I wanted to address you because I have failed you by disappearing, again . I remember when I first got sick and I was desperately searching for answers and connections and really just anyone or anything that could relate, blogs were such a safe haven for me. Every once in a while I would find one that sounded like me and I would devour it, post by post, hoping for answers for myself. There was one I will never forget. The writer described almost exactly the same symptoms and progressions as me. It was incredible. But then the posts just stopped. The writer never said if they got a diagnosis. They never said if they got resolution. They never said if they got sicker or more well. I was left just hanging there wondering, which was all too similar to the same experience I was having with my body. It was so...disappointing and discourag...

This has been a big year for me so far, but I've failed to keep up my blog, so let's catch up, shall we? Most of you probably already know that I started a business in January, selling my hand made goods. It's growing slowly, and I'm okay with that. It has given me at least a small sense of purpose which is so helpful for my mental health. Many of you also already know that I had an article published in a magazine. Being published has been a long time dream of mine and it felt incredible to have the opportunity.              (My article was published in the April issue of Holl & Lane magazine.) Now for the stuff most of you don't know: I had decided to take some time off from going to doctor's offices at the beginning of this year. But during the last days of December, a rather large, ominous looking mass was discovered and all the doctor-y people got up in a tizzy and had me running around to a bunch of different locations, getting ult...

I wrote this piece last year but wasn't brave enough to publish it at the time.  As nervous as it makes me, it feels important to me that I publish this piece now with this reminder: You Are Not Alone It will pass. I promise. Keep Going. And please, if you are feeling suicidal, tell someone. Reach out for help. You are Important. You matter. Suicide Prevention Hotline: 1-800-273-8255 suicidepreventionlifeline.org I want so badly to write about depression right now because that's where I'm at but it's hard. It's hard to admit that I'm depressed. It's hard to explain why  I'm depressed and everyone always wants to know why. It's hard to trust that people will listen or that they won't try to fix  me or fix  the situation or correct all of my "wrong" thoughts, or tell me to "just be positive." It's hard to be vulnerable like this when I'm already at my most vulnerable... But here we are. I want ...

Why is it that whenever a doctor tells me I don't have something, they act like I should throw confetti in the air and do a jig? I mean, it's  great  that I don't have MS. I know this. Because let's face it, MS sucks. Bad. I know that the MS specialist knows this. I know that my neurologist knows this. I know that anyone who has MS knows this and so does anyone who loves someone who has MS and even anyone who has ever taken the time to look into MS and its disease progression. But can we just back up and look at the facts for a second? I'm sick I have symptoms that impact my life in negative ways None of that goes away just because the specialist spent the better part of a year trying to either diagnose me with something or rule it out and in the end was able to rule it out. And again, I'm glad  we were able to rule it out, all of the things we've ruled out. I didn't want to have any of the countless things that have been looked for. I a...

I woke up this morning to the sensation like a gorilla or a refrigerator or something  really really  heavy was crushing my legs. I wake up to this sensation more often than I care to but it's not just a morning thing. Sometimes it starts mid-morning. Sometimes afternoon. Sometimes evening. Sometimes it keeps me up most of the night. It is a pretty awful way to wake up though. I've been trying to decide which is worse: waking up to this crushing sensation or waking up to the sound of someone clapping loudy and shouting, "Time to Get Up! Get Up! Get Up! Time to Get Up! Get Up!" in a sing-songy kind of voice. Some energetic lady (someone's mother maybe? Or a teacher aide? I don't remember) woke all the girls up this way on our 6th grade overnight trip. I can't really decide which is worse. They are both pretty jolting ways to wake up. On the one hand, I prefer the pain. It starts out mildly and brings me along with it until I can no longer stay asle...

Two weeks ago I had to wake up Mr. Amazing at 2:30 in the morning to take me to the emergency room. We left the clones sleeping in their beds. They had already witnessed me, earlier in the day, struggling to breathe and it scared them. It scared me as well but I didn't do anything about it. I should have gone in earlier but I didn't know. It crossed my mind a number of times throughout the day that maybe I needed to go to the emergency room. For one thing, I was getting ridiculously short of breath whenever I stood up. If I took more than one step, things became severe. I tried to go from the couch to the washing machine but half-fell half-slumped to the floor less than half the way there, gasping for breath. I couldn't lay down flat either. Mostly I just sat on the edge of things, in a triangle type pose, trying to breathe through what we all just assumed was an unprovoked panic attack on top of an acute infection. (The nurses at the hospital later told me that was e...

In my former life, I was never a big medication taker. I was reluctant to even take an over-the-counter painkiller for a headache because I felt like the painkillers were just masking the pain and if I had a headache, I preferred to know about it. So unless something truly severe was going on, I preferred to just feel it and deal with it, knowing it would eventually go away. I may not be a pill popper under normal circumstances but chronic illness is not a normal circumstance. It's a different story when the offending feelings are a daily thing. Daily symptoms get old fast. The pain feels worse, not necessarily because it is off the pain chart but because it just keeps going. There is no end in sight. I've tried a number of medications over the past 5 years and none of them made me feel any better but most of them did plenty by the way of side effects. Mr Amazing lovingly refers to me as side-effect girl . I don't usually get the really bad side effects of a medicati...

What does chronic illness look like?  Does it have a face?  Does it have a sound? Do you think you can tell from a person's appearance whether or not they are sick? Do you think you can tell from the sound of their voice? Our society has so many assumptions about what it means to be sick. There are friends who will call on the phone and at the sound of my chipper voice will be convinced that I'm well. There are acquaintances who hear of my illness journey and confidently exclaim that I don't look sick so I must not be. There are doctors who say I must not be all that unwell because I'm sitting in front of them smiling and laughing. These assumptions hurt. They hurt me deeply and profoundly. They lack elements of compassion and understanding. They tend to make me feel misunderstood at best, not believed at worst.  Often, I sound chipper on the phone because I'm happy to be hearing from the person who called. Hearing from someone I love, who wants to...

photo by Ron Place I walk in smiling. I'm not necessarily keen on meeting new people, especially new people who are doctors, but I know that after the first appointment they are no longer new and every subsequent appointment will be easier. I walk in smiling. I'm grateful to be seeing this doctor. I'm hopeful that some benefit will come from the appointment. Or at the very least, I will be heard. I walk in smiling. I like people. I want to be a blessing to everyone I meet. And I know that sometimes a genuine smile from one person is all it takes to turn a person's day around. I walk in smiling. I know how this is going to end. But I walk in smiling. I wait. I do it with patience, even while I wonder what the point is of showing up 15 minutes early, as requested, when I will end up waiting in a colorless room for 45 minutes beyond my appointment time before they get to me. I wait with patience. I speak. I try to be clear, even as I use unusual simile...

It's November. November 2016. The air outside is chilly. The trees are half bare, their vibrantly colored leaves scattered on the ground, curling at the edges as their remaining moisture seeps into the air. My first friend-in-motherhood has been dead for a year now, her tragic death still feeling as fresh to my heart as the day it happened. And the anniversary of my getting sick has come back around. This month we mark five years of undiagnosed illness. Five years of unexplained, untreated pain and ailments. Five years. It is safe to say there is a lot of reflection happening here. I remember arriving at the testing facility for my first MRI in 2012. I'd driven there alone, not knowing what to expect. My palms were sweating as I signed in at the desk. I was afraid. Afraid of what the MRI would show. Was there a tumor growing in my brain, pressing on a cranial nerve in my ear? Was this MS? Was it nothing? The receptionist asked me some questions, one of which was how lon...

If you ask me how I'm doing you are likely to hear me say, "I'm okay." But...how I'm really  doing is so much more complicated than a quick reply to a passing question. I'm in a rough patch. It's been going on since school started at the beginning of September. Even though Mr. Amazing does the entire morning routine while I sleep, somehow I'm at least as exhausted as he is, possibly more. Whether or not I'm in charge of getting the clones off to school in the morning or not, school season brings with it a lot more activity. Our days are fuller. Or their days are fuller. And somehow it's affecting me, regardless of how involved I am in the busy. I can't get back to my base level of sick. Maybe it's all the car rides and the fact that the clones actually need clean clothes so the laundry has  to be done. Maybe it's the way we end up juggling dinners around soccer schedules. Maybe it's all the blood draws and doctor app...