My Body Broke My Heart
Hello, friends.
It’s late and I’m exhausted, but my soul needs some writing time. I’ve had a bit of a rough week. Nothing horrible. One of those weeks where a million tiny little things are frustrating and not going according to plan. We’ve all had them. There’s a few big things in particular that have been heavily weighing on me, although these have been in the works for months. My next few entries may be a bit depressing as a result. I have to write about them. Keeping everything to myself is a burden I’m tired of carrying. I find it hard to compose my thoughts and share these struggles face to face, but this writing space can be strangely freeing and meditative. At any rate.
There are two main burdens I’m dealing with at the moment, one spiritual and one physical. Neither are new. I hope to write about the spiritual one later, but for now I’m going to deal with the physical. It’s hitting closest to home, today.
No pictures today. I’m not trying to entertain you. Read it or don’t. Whatever.
I’m on the island for the weekend, spending time away from my schedule and enjoying every moment with my grandparents. I realized that I only have two months left here before I leave for Guatemala and then the Netherlands. I’ll be gone for over a year and I haven’t had nearly enough time with these lovely people yet. So, we’re all making the effort to spend a little more time together before I go. Gramps drove down to pick me up off the ferry today and Grammy put together an amazing dinner and we had a quiet afternoon. Grammy is working on a new kind of painting using alcohol paints (I think that’s what they’re called?). I’m not sure I understand how they work, but it’s beautiful. She painted and I sat with a textbook in front of me and talked about life and school and all of the things. Gramps came in to report that he’d found a chickadee under the bird feeder, frozen to death. “These little creatures live their lives with the fullest amount of energy possible, and then they go out just like that,” he said. He’s been thinking about these things a lot lately. Maybe he always has?
We had strawberries and whipped cream after dinner and sat by the fireplace to watch The West Wing for a bit. Afterwards, as we were cleaning up the dishes in the kitchen, my leg gave out and I very nearly collapsed. I had shooting pain in my lower back and couldn’t put any weight on my leg. It was like a piece of dead wood. I braced myself against the counter and pulled my leg to my chest. With a loud popping noise, my hip joint moved back to where it should be and my leg went back to normal. But I knew I was screwed for the rest of the evening. Once it happens once, it’s weak for a while and it’ll keep happening unless I’m extremely conscious of my every move.
So here’s what’s going on. I’ve always had weird flexibility and some mild joint issues. But over the past five months, things have gotten worse. I subluxate (which is like a mild form of dislocation) probably 8-10 times a day, on average. I’m in the process of being diagnosed. I was just recently diagnosed with hypermobility syndrome. I have a physical therapy appointment and an MRI next week. The MRI is happening because the specialist was extremely concerned about the fact that I can bend farther than normal in almost every direction, but can’t reach down past my knees. He thinks there’s something wrong with my lower back. The first thing he said about the rest of it is that, “People like this do just hurt all the time. There’s little that can be done. We’ll see what we can do, but you’re likely going to have to learn to live with it.”
I feel bad about the kitchen scene. I almost cried right there in front of my grandparents. Grammy almost cried too. You see, for the most part, I’ve been really good about hiding how bad it is from people, not to save their feelings, but to save mine and to convince myself that it’s all going to be ok. I talk about the funny part of having hypermobility syndrome instead: I can bend myself in unusual ways and it’s fun to test that flexibility. I don’t talk about the pain, if I can help it. I try to make sure I’m near something I can grab if one of my legs gives out. I can usually feel when something is just a little bit wrong and fix it before it really gives. I’ve taught myself the fixes for just about every dislocation there is. I’ve learned how to do them subtly so that people think I’m just stretching or shifting. Most importantly, I’ve really tried not to complain too much. Don’t get me wrong, when it’s bad, I’ll sit down or find a way to excuse myself from whatever activity the group is doing, but I don’t really get into WHY I’m excusing myself. It’s too demoralizing. It hurts too much.
Physically, it hurts. All the time. 24/7. I actually cannot remember what it feels like to have a painless body. There was a five minute period last week after a glorious pool + hot tub session where I came close, but it didn’t last long. If I sit here right now and focus on what hurts, in order from most to least… let’s see… it’s: my right hip, my left hip, my lower back, my right knee, both shoulders (equally), elbows, and hands. My right hip has collapsed on me completely three times today, so it’s really feeling it.
Mentally and emotionally, it hurts. It hurts much worse emotionally than it does physically, actually. I’m 20 years old. I’m not 40. I’m 20 years old and there are days when I cannot physically walk to school. I’m 20 years old and I have to pause and grit my teeth before attempting the stairs. I’m just waiting for the day when my leg is going to give out on the stairs and seriously hurt me. Simply going up or down them hurts enough because everything is grinding and wobbling and it’s terrifying. I’m 20, and I have to be very careful with sitting down or getting up again. I can’t run anymore, even just across the street before the light turns. Will had to carry me to the hospital once because I simply sat up in bed one morning without thinking about it, having forgotten that I’m slowly falling apart.
Oh, and climbing trees is out of the question. If you know me, you can imagine how I feel about that.
I completely broke down a few days ago. Something small happened and it was the tipping point, for whatever reason. I’ve been holding it together and being optimistic and not letting it get to me, but I feel hopeless. I bawled my eyes out and so did Will, a little bit. Maybe it sounds stupid, but my whole identity feels a bit shattered. I’ve always been the girl who ran with the boys, climbed the trees and mountains, and could hold her own in a fight. I felt strong and confident and sassy and capable. But I couldn’t walk across the kitchen this evening. Couldn’t. Walk. Across. The kitchen. And I fell and caught myself while climbing the stairs to bed. It feels as if my body is being intentionally spiteful, betraying me and giving out on me when I should be at my prime. I feel incredibly unsexy and incapable. I have this handsome partner who can dash up the stairs without thinking twice and who is incredible when it comes to planning his life and here I am, a bit scared to cuddle because I know I’ll get hurt. I’ve never, ever been delicate. Never. And now I can’t walk without dislocating or spraining a toe. It’s hard to explain how strange it is to be so held back by your body, but to look perfectly fine on the outside. Even to a close friend or my own boyfriend, I look like I’m perfectly ok. But I’m very far from perfectly ok and it’s only getting worse.
I know that my body doesn’t define who I am or how strong I am or what I’m capable of. I have friends who live with disabilities and who are incredible, successful people. My very own Grampsy lost the use of his left arm due to polio as a child. I grew up watching him do everything everyone said he could never do. I know that I will either find a way to fix this or to live with it. But I feel heartbroken nonetheless. Heartbroken for the things I used to be able to do, heartbroken for the adventurous woman inside me who’s held back by this, heartbroken by the look in my Grammy’s eyes when she saw me in pain, heartbroken by the instant hesitation I have when Will reaches to hug me. And I’m scared, frankly. Scared that I’m not fixable. Scared to go to Antigua for my internship and to try to walk on cobblestone streets for three months. Scared that my MRI is going to find something serious. Even scared to drive, because last time, my hip subluxated and my leg went numb and I couldn’t fix it while driving. I’m trying not to let the fear govern my decision-making process or mental health, but I’m struggling.
I don’t have a positive note to end this on. Usually I try to end even my most depressing posts with a silver lining or a window into a brighter corner of my life. But I’m going to be real with you instead. My heart is broken and I’m fighting to reconcile my identity and my body. I don’t know yet if this is going to be forever or not, but it affects every moment of my present life. I feel like I’m in mourning. I’ve been crying a lot. If any of you have been through something similar, I would really appreciate your stories and thoughts. I’ll let you know what the docs think when I get my MRI results back.
14 Comments
Andi
My sister has Ehlers-Danlos Syndrome and her symptoms sound extremely similar to yours. She suffers from hyper-flexibility, dislocating joints, and chronic pain. There are days when she can’t get out of bed. I’m not trying to scare you or anything, but it’s something I would look into.
Btw, I’ve never commented before, but I’ve been a subscriber to your blog since your post about world traveling and homeschooling. I love your posts and I hope the doctors can figure out what’s going on, so you can start feeling better soon.
EdventureGirl
Yes, that’s something they checked, but I don’t have this particular brand of it. Thanks for the heads up! And thanks for reading and commenting for the first time! It’s lovely to meet you. :)
michael finberg
You have to turn this wrathful experience into a spiritual education.
No other way.
I was lucky.
No arthritis until 50.
But then BOOM.
But a steady spiritual practice morphed-up the pain and gave it a deeper meaning.
Prayers.
M
http://WWW.spiritualscififest.com
EdventureGirl
You’re going to love my next post.
nancysv
Oh Hannah – I am so sorry. I can’t relate to your particular problem, but I CAN relate to the feeling that your body is betraying you. After our PanAm journey, I developed Adrenal Fatigue Syndrome – basically, my adrenal gland was not able to keep up with the demands placed up on it. And your adrenal gland is the one responsible for keeping your body going.
So there I was – a woman who, like you, had always been strong. I had just pedaled a 150-pound bicycle from Alaska to Argentina! I mean – I could get on that heavy, cumbersome bicycle and ride 80 or 90 miles in the Patagonian wind. And now – there were days when just getting out of bed, taking a shower, and getting dressed were too much. I planned out my week so that I only needed to run one errand per day. One. Only. The idea of leaving the house, getting into the car, driving to the store, getting out of the car, and walking across the parking lot was daunting. And that doesn’t even include walking around the store to buy what we needed, somehow getting back through the parking lot to the car, wrestling this 6-foot body into the tiny car, driving home, and then somehow getting out of the car and back into the house. And to do all that for several errands? Simply couldn’t happen.
For me, knowledge was power. Once I figured out what was going on with my body, I felt better about things. Still betrayed – but at least I knew. I had a little bit of control over what happened. And slowly – oh, so slowly – I started to get better. I remember the day I ran four errands without even thinking about it – I actually burst into tears on my way home when I realized what I had just done.
For now, grieve. Feel sorry for yourself. Bask in your pity party. And visit docs and read everything you can get your hands on and search for answers. Knowledge is power.
My thoughts are with you, chica.
Jenn Sutherland-Miller
Love you so much. So sorry this is happening. So thankful you’re working with doctors to find the root and the solutions there may be. So proud of your determination and your perseverance as well as your honest weakness. There is strength in that too. ❤🐙
Melanie Murrish
Very sorry to hear this Hannah and thanks for sharing. Once you have the MRI hopefully you will know more and can concentrate on controlling the pain. Just know that medical advances are happening daily, both conventional and alternative, so don’t give up hope. In other news, I’ve noticed that you seem very (quite rightly) irritated on FB…maybe it’s time to unfollow some people for a while-they won’t know and it might give you some breathing space while you deal with more important things. Other than that, you could tell them to piss off. ;) Hugs to you and sending you strength to help deal with this. xx
Morgan Schetzle
Your post humbled me quite a bit. I’ve been in a struggle with my body since I was about 10 years old. I too ran with the boys and climbed mountains. I grew up in Alaska and had all the adventures I could wish for, until puberty. What followed was a horrific betrayal.
See, I’m trans and I was at odds with my body and my identity. I wanted so badly to be the strong girl my parents were proud of. To fly in the face of sexism and get a job in the tech industry, to throw all the shit I’d heard growing up labeled as a girl in the faces of the misogynistic asshats I would run into over the years. After a great deal of struggle I did, but I secretly hated all the acknowledgement I got for being a powerhouse woman. I hated being asked my opinion on company policy towards women and people of color simply because I was perceived as the only non white guy in the room. My body has been flashing the wrong plumage since childhood, and I hated it bitterly for stabbing me in the back.
The worst part, was that I had no words for it. There was no name for my demon I couldn’t even describe it. I was mostly unaware of the LGBT community–and the trans people I’d met? All transwomen with deep backgrounds of terrible abuse. Coming from the conservative extended family and state I did, I interpreted that as them being trans due to the abuse, not that they suffered abuses because of their identity. I looked down my nose at them even while defending their rights. (Got knocked right off my high horse when it finally clicked that I’m trans. It was a long drop straight into a mud puddle of self pity)
So it strikes me how much I related to your post! Those feelings are incredibly close to how I felt for years. Right up until a couple years ago when I started down the path to transition–the most terrifying thing I’ve ever done in my life. I thought it would be social and career suicide.
Instead, I fell in love with my body. For the first time since the neutrality of my prepubescent childhood everything felt right. I trimmed down, started rock climbing and doing aerial work, I feel free!
But you just made acknowledge how awful I had been to my body. I had been so miserable to it for 18 years. I feel twinges of shame because my body bore me through all of it. The drinking, the weight gains, the harsh losses, the scalding hatred I showed it. It never complained. It never gave out on me. We suffered together (I never functioned right on estrogen, body aches, constant migraines, etc). And now we’ve healed.
You just gave me a slap in the face that I sorely needed, and I wanted to thank you for it. We transfolk tend to treat our bodies like the enemy, when the poor thing was hurting and confused and just trying to do its best job of keeping us safe.
Our relationship with our bodies is incredibly complex and with something like this it takes time to sort through all the attending emotion. I hope the people around you recognize that and show empathy–and that you get some answers from doctors. Making things concrete helps stop the spin even if its not great news.
Thank you for the post, please keep writing even if you never post it, cause you’re definitely a point of light out there in the world.
Wishing you well from Seattle.
EdventureGirl
Wow. That was powerful to read. Thank you so much for sharing your story with me. I wish you all the best on your journey. You are beautiful and your body is beautiful, too. I just found this poem that has meant a lot to me, perhaps you’d enjoy it as well:
Wild Geese, by Mary Oliver
You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting –
over and over announcing your place
in the family of things.
Jessie Voigts
I’ve been there, still live there now. Let’s chat. xoxo
Dan Draper
Perhaps the greatest paradox of our inner lives is that we find our greatest strengths from our most debilitating weaknesses, as it is the toughest stuff that lets us know our depths.
I know that you are very strong. It’s abundantly clear from the words you write. Don’t hate your body. Find ways to make peace with yourself and forgive it for being fragile.
None of us are super heroes and none of us are getting out of here alive. But we have this amazing vessel that carries us through an incredible world, giving us the chance to feel how we are part of it all.
Lots of love, Dan
(A Brit who now lives in Italy, was educated at home himself (all the way through until college) – and finding great inspiration from your blog to explore the possibilities of world schooling my little boys)
x x x
Jodie Salmond
Its so strange for me that this is happening to you. I’ve been reading your blog for awhile now, I can’t even remember how that ended up happening as I don’t usually read travel-type blogs at all, anyway, reading about your life over over the last couple of years and witnessing you pursue the things you want in a way that is uncompromisingly true to who you are and aspire to be has been a wonderful gift for me. The integrity and authenticity that you display in every part of your life and the determination you apply to the things you want is what will get you through this early stage of diagnoses and acceptance. There is no way around how bad you’ll feel but it does get better. You’ll just have to figure out other ways to live your life and redefine yourself. Even if your body isn’t strong enough for you right now your character is and will see you through.
This website helped me a lot when I was first diagnosed with CFS, maybe there will be something there for you too. https://themighty.com/
Good luck Hannah, we are all rooting for you, even down here in New Zealand. xoxo
David
Sorry to hear about your situation. I came across your blog while researching world schooling, and I have to say, you are an amazing individual with an amazing family. After reading a few of your posts, I have now fallen in love with the idea of world schooling (I have two boys at 1 and 3 years old). As I read on, I came across this post, and I was heart broken to read about your physical struggles. I truly hope that you can overcome this obstacle and not be limited in your aspirations. I just wanted to recommend a book that may help you. It’s “Pain Free” by Pete Egoscue. The book is very informative and has a lot of simple exercises that may help you (there are also a lot of YouTube videos on the Egoscue method). Anyways, good luck, and I’m looking forward to your post about your spiritual side.
EdventureGirl
Hi David, thanks so much for taking the time to comment! I’m going to post an update on this issue soon. I’m doing better and am finding solutions! It’s all going to be okay in the end. I’ll still adventure. Thanks for the book recommendation, I’ll definitely look it up! Please feel free to contact me any time if you have questions about worldschooling. I’m happy to help.