I’ve debated on how much to say about any of this, and while I’m not terribly comfortable talking about it right now, I also feel like normalizing disability and chronic illness is extremely important, and one of the ways we do that is by talking about it.
So, let me talk to you, dear reader, about what’s going on.
Back in 2019, my hip started hurting. And when I say “hurting” please understand, this is coming from someone who has chronic pain. On a good day, my typical pain level hovers somewhere between a 6-7 on a ten point scale. So, when I say my hip was hurting, I mean I was in so much pain, I almost went to the hospital due to it numerous times. I couldn’t walk. I couldn’t think. I couldn’t move. It was horrible. The only other pain that can compare was when I had my severe spine injury.
Anyway, I tolerated it for as long as I could, but I ended up going to the doctor, who sent me to a specialist. Now, I was born with some gnarly hip dysplasia. My parents were told that I needed to have corrective surgery before I was a certain age, but the surgery is… I mean, it’s a beast, and my parents didn’t want to put me through that at such a young age. So my specialist was this hip dysplasia guy who also had passing familiarity with Ehlers-Danlos Syndrome.
What I really need is my hip joints to be re-formed. It’s this absolutely incredible surgery where they break your bones in a bunch of places and put in plates and screws and stuff. That’s the surgery my parents passed on when I was a child, and this doctor was telling me that’s the surgery I really need, but he won’t do it for people over the age of about 20, because it’s so extreme, and the older you get, the slower you heal. With me being in my upper 30s, it was just a lot. Plus, you add the Ehlers-Danlos syndrome too it, and it really is a risk that I am not a good person to take.
So basically, tough luck kid. You get to live with this. This is life with hip dysplasia and Ehlers-Danlos Syndrome. However, what he could do was a fairly minor surgery (respectively). He went in and cleaned up my joint, and then sort of “shaved” my bones and re-shaped them as best he could. he gave me some cadaver parts and I think I have a staple or something in there. Anyway, it was a surgery and it helped for about three months.
For three months, I could walk.
And then the pain came back. Not as bad, but absolutely present. I ignored it. I thought, “Great… here we go…” because my body doesn’t heal from surgery the way a normal person’s body would. The reason I’ve had five shoulder surgeries isn’t because I enjoy them. It’s because all the work comes undone again within six months. So, I thought the same thing was happening to my hip and I was pissed.
But the pandemic started and life was happening, so I put it off.
Then, other things started happening. My left leg started hurting. It’s usually just my right, so that’s noteworthy. I started falling a lot. Like, my legs would just buckle and I’d go down. Once, my left leg gave out on me and I fell down the stairs. I ended up in the emergency room. I have not been having small falls. These are big and they cause numerous, prolonged injuries. But you see, my RIGHT side was impacted by my spine surgery. Not my left. It was never my left. So while it was weird, I sort of thought my left leg was just tired after all these years of making up for my right leg’s lack. I shrugged it off. It sucks, but so does my body. Life goes on.
The pain never went away, so I started falling a lot and I was still hurting. I thought the hip pain was due to the hip dysplasia and that’s just life so I needed to learn to live with it. Since I have dysplasia in both hips, maybe it’s just how hip dysplasia goes when you’re over thirty-five. I went back to my specialist who basically said, “Well, there’s nothing else I can do for you so have a nice life.” Then I went and got a second opinion. This doctor did some tests and took a lot of x-rays, and then he came into the room, sat me down, and said, “Sarah, it’s not your hip, it’s your spine.”
Now, this fell on me almost as hard as “You have cancer” fell on me all those years ago. I mean, me and my spine do not have a good working relationship and I get very, very, very emotional when I think about it, much less talk about it. So I’m going to be writing the entire rest of this post through a haze of really embarrassing tears.
Let’s talk a bit about my spine.
In the year 2011, before I knew I had Ehlers-Danlos Syndrome (I just thought I was weird and injured easily), I grabbed a towel off the rack because I was about to take a shower. It was nothing special. Just a towel on a rack. Didn’t have to reach or bend. Just grabbed the stupid towel and my lower back basically collapsed on itself. Smashed everything. I couldn’t walk. I was in so much pain, I literally thought I was dying. I’m absolutely positive I went into some kind of shock. I was rushed to the hospital in an ambulance. They did an MRI and gave me a lot of drugs.
The MRI showed that I had herniated basically my entire lumbar spine. Grabbing a towel had turned into pudding. It smashed the nerve root that goes down my right leg. I lost the ability to walk. I lost the ability to feel anything in that leg. I was in so much pain (and pregnant) that they worried the pain was going to affect the baby. When I say I didn’t know someone could hurt that bad and survive, I’m not lying. I never knew agony like that existed. It was the most terrifying, unbelievable thing.
Due to being pregnant, I couldn’t have surgery right away so I had to wait, and I was in and out of the hospital a lot, on IV pain medication, the whole nine yards. When I did finally get that surgery, they didn’t want to do a fusion on someone so young, so they did a discectomy first. I remember telling them, “This isn’t going to work. I’m going to be right back here. I need the fusion, because my body doesn’t do half-measures. It’s the whole thing or you will be operating on me again.”
And this guy looked at me and said, “You’re in your twenties. You’ll be fine.”
And I didn’t fight it. I didn’t fight that, and I didn’t fight him because he’s the doctor and the doctor knows more than I do. So, he did the discectomy. It worked for about four months. The pain and issues came back, and he did a second discectomy (instead of a fusion, because EDS matters less than being in my twenties, or something) and the day I got home from the hospital my spine did a thing, and I screamed and went down, and I was immediately rushed to the emergency room. The doctor booked me for a full fusion the next week. The surgery took over six hours and required almost a complete reconstruction of my lumbar spine.
So I had three major spine surgeries in like… six months. Two of them were a week apart. It was great.
But by that time, my nerves had been smashed so long, no one knew what would happen. Would they regrow? Have they been injured so long this is my new status quo? We didn’t know, so me and my entire team of doctors just waited to see what would happen. I did physical therapy. They had to teach me how to use a leg I can’t feel. It was… really a surreal experience.
As freaking usual, my body didn’t perform well. The nerve pain never went away, I think I just got as used to it as I can be. I still can’t feel my right leg and I never will again. It’s gone now. I’ve now had a spine stimulator put in (Electrodes imbedded in my spinal column. They send out bursts of frequency that interrupt the pain signals traveling up my spine to my brain. It sort of mutes it a bit so the pain center in my brain gets “white noise” as my doctor puts it.) to help me deal with the pain. It takes the edge off. I’ve been in and out of physical therapy. Then the hip thing happened, and then the hip thing started happening again…
And this doctor tells me it’s not my hips but my back, and I just… broke.
I got into my car, drove down the street, pulled into an empty parking lot and screamed. I cried. I pounded the steering wheel. I lost it. I had no idea part of my own body could upset me so much. Talk about trying to slay a dragon. I’ve been fighting extreme, unbelievable pain due to this stupid spine since 2011. I’ve been fighting with my legs for that long. I’ve just been fighting, and getting defeated constantly and it was just one more blow and I sort of collapsed on a soul-deep level.
So all of this brings me to now. Now that I know it’s not my hips, but my delightful spine crapping out on me. Again.
We’ve first got to get this pain under control, because I can barely think through it most of the time. I’m seeing a pain management guy now who is largely directing the ship I’m floating on. He knows all about Ehlers-Danlos Syndrome (And, for what it’s worth, he’s the first doctor I’ve ever worked with who actually is familiar with my condition), so things I’ve fought with doctors about for years, like “Steroids don’t work on me. I swear they don’t. I’m not just saying that because it’s fun” he says, “Of course they don’t work. Ehlers-Danlos bodies don’t process steroids.” It’s SURREAL to not have to fight with him about every tiny thing. He’s educating me about my disorder in a way no one has before, and so many things I have to really push doctors on, he just says, “Of course, your body doesn’t do that. Here’s why…”
He’s helping me manage the pain, which I need because it’s really getting up there again, and he’s doing it in a way that works for an EDS body like mine. Opioids don’t really work on me, so we’ve moved me over to the state medicinal marijuana program, which has honestly worked so much better than anything I have ever tried before, and I cannot stress that enough. I have never in my life taken a pain pill and thought, “Man, this was really worth it” because largely they don’t impact my pain (apparently that’s an EDS thing too), but cannabis actually helps. If I still hurt, at least it dulls the edge enough so I can think and function past it, at least a little.
We’re going to get me a medial branch block, which is a test to see if radio frequency ablation is a good option for me. Basically, this is when they go in and apply heated needles to nerve roots and basically burn them until they stop working. It takes about six months to two years for the nerves to grow back (depending on the person) so I’d have to get it again, and again, and again. That kind of sucks, but if it helps it might be worth it. He’s also got me in physical therapy.
Physical therapy is pretty awesome. They are likewise very EDS knowledgable, and they’re really trying to help me keep what mobility I still have. The muscles in my legs aren’t triggering correctly, so I go about three times a week, and it’s just hours of trying to get my muscles to work, damn it. It’s… really emotional, because I know I’m doing this because…
Well, you don’t work on your mobility if your mobility is doing fine.
Meanwhile, we had to get a CT scan (I can’t get MRIs because of my electrodes) done to see what exactly was going on in my lumbar spine and if the nerve stuff we’re considering is really even an option.
I got the results of said scan and they… weren’t good. There are a lot of new things wrong with my spine that weren’t present in my last scan in 2020, and it’s, quite frankly overwhelming. I told my husband last night, “What I understand from this, is my entire lumbar spine is pudding.” There’s a lot of very fancy language, but basically the scan shows severe multilevel degeneration of my endplates and my facets. Apparently when this happens stuff can leak fluid, and that leaking fluid lights the nerves up like a Christmas tree. I also have severe bilateral foraminal narrowing, which means I have two hunks of compressed, inflamed, screaming nerve roots on both sides of my spine. These specific nerves are the ones that go down both of my legs.
Both. Of. My. Legs.
What I’m not saying right now is that I’m losing my ability to walk, and while I’ve spent the past ten years thinking my right side was the only affected side, apparently my spine has decided to do its thing again, and now my left side is impacted too.
Remember all those incidents I mentioned earlier, with my legs giving out? It never made sense to me until now. It’s been my left leg giving out, which is weird because it’s the right leg I can’t feel. It’s always been my right leg. My left leg has never been an issue. But now my spine is re-injured, and it has decided my left leg needs to be as much fun as my right has been.
If the condition is left untreated, I could lose the ability to use my legs, permanently.
I am already losing my mobility. I’m already fighting to walk.
I’m not sure what the next steps will be. They recommend I see a neurosurgeon. I’m predicting at least another surgery, but who knows. I see my doctor in early July, so we’ll talk more then. My physical therapy team is focusing on stability and mobility right now, with varying levels of success. They asked me how I was doing the other day, and I said, “I feel like I’m drowning” and he said “keep swimming” and god, I’m so tired. I’m so unbelievably tired of having to swim.
A strange thing happened yesterday, though. There was this mindset I had to get into when I had cancer, where part of me was always braced and fighting. I was very much a house divided. There was the “me” that showed the world her okay face, and then there was the “me” that was just constantly fighting to keep myself floating despite all the bad news, the sickness, the fear, the anger, the poisonous thoughts. And yesterday, I felt that flip on again. It almost scared me because I just associate this headspace so much with cancer and I’m in remission, so feeling this way again really spun me out a bit.
But then I thought about it, and I realized what was happening. I was getting into “fight mode”. I am at war. I am pitted against myself and I can feel it deep in my soul.
It’s strange how things like this trickle through my life. I was writing last night, and I realized that now, suddenly, my protagonist has a bad back. She can’t use her leg. She’s in pain. I didn’t even think about it at the time, but my situation trickles into my writing, sneaks in there like a thief. Part of me is at war, and another part is trying to understand and I do that through my books. I gave Rosemary a cane that blooms a profusion of flowers when she touches it.
There are a lot of emotions that go into something like this, and perhaps I should touch on it a bit because I don’t think we talk about the emotions that go along with disability enough, as irrational as a lot of it might seem.
There’s guilt. I feel bad for putting my family through this. I feel bad for how much it will cost. I feel bad that I can’t take my kid to the concert she wants to go to tomorrow because it’s not accessible enough. I hate that my kids always ask someone else to take them places, because they know I can’t. I’m not fun. I’m thirty-nine years old, and I struggle feeling like I’m not a good enough mom because I can’t be as fun as everyone else’s parents are.
For whatever unbelievable reason, I am afraid of using my cane or wheelchair in public. I’m afraid of how people will see me. As horrible as that is to admit, that fear is there.
I’m scared, because I don’t know what is going to happen next. I think of how old I am now, and I wonder how horrible it will be when I’m 80. The future, in this respect, terrifies me.
I’m so unbelievably fucking angry I can’t even. There are no words for this level of anger. I’m just a roaring, seething cauldron of rotting, festering fury.
I’m sad. I’m really, really sad.
I’m crying a lot when people aren’t looking.
And I’m tired. I’m so unbelievably tired.
Yet despite that, I’m also grateful that I live at a time when medical intervention like this is even possible. I’m overwhelmingly glad that I’ve finally found a doctor who knows how to treat this body. I’m glad that, for the first time in years, I feel like I have a plan in place.
I am still dealing with the shock of the CT scan results, I think. Of seeing it all in black and white.
I am filling my life with things I love because those are the things that will get me through this. Family. Friends. Books I love. Edits I adore. All the parts of my life that are not my legs are being infused with things I love, and I am viciously cutting the rot, the things that do not bring me joy. Because I am at war now, and I have no room for things that do not bring me joy. Thank god I am the luckiest editor alive, because even my workdays are amazing and that really balances a lot of all this other stuff. Having places I can go that are comforting, and things to do that make me feel fulfilled, even professionally, is a true blessing. And so is being busy. Thankfully, I’m too busy to dwell.
My family and all of my authors right now are saving me in ways they don’t even realize. You are all keeping me floating.
When I get upset, I go to my garden, because it’s beautiful.
It reminds me that no matter how bad it seems, life is still pretty incredible.
Who knows what the future will bring, but I sure am enjoying the flowers.