Chronically Able

A year and a day after I started this blog, I’m back at a New York City airport, awaiting an 8:55 flight to Chicago. I’m off to another doctor’s appointment, but this time, I’m coming back on Monday night.

I know it’s been quite some time since I’ve written on here. There was that old cycle every functionally able spoonie knows so well: decided denial of pain ever returning, a small incidence of returning pain and then the urgent need to take action on the pain. But this time, it was smaller. The pain was more manageable. Sometimes, I wonder if I’m making too big of a deal, flying to Chicago to see another doctor in my surgeon’s practice. Maybe I should just accept the pain like the scar for the surgery, fading but always there.

What I will say about that is I believe those of us who suffer from chronic health issues sell ourselves too short. We underestimate the kind of life we deserve. We say let’s settle for some pain because none at all is asking too much. We’re being greedy. We’re annoying people. We’ve exhausted our quota.

But I think there’s a kink in this logic. We can accept our pain, accept our illness as a part of our narrative. But we also can write new chapters. We can turn the page on our pain and look for more options and better solutions. We can continue to recalibrate our treatments because we deserve to enjoy our lives in the same way all humans want to enjoy their lives.

I’m aware of the immense privilege I have to continue seeking relief. I have health insurance, family support and I have experienced positive results from a fusion surgery, not something everyone experiences. This is why I believe it’s all the more crucial that we look at how we support the chronically ill in our country, no matter the demographics. We need to find methods that better meet the needs of the many, rather than pretending we are too few to make noise.

I’ve lapsed on writing on this platform. Life can get really big and I’m currently on the road to getting my degree to help kids and adolescents with chronic pain and health issues with their mental health. That’s the goal anyways. But I want to do a better job of keeping you updated.

And that you, all of you who are reading this or have read my posts in the past, are who I want to thank. I’m so grateful for what this blog gave me. It helped me share in a safe, non-judgmental place when I didn’t have therapy available at the ready. It validated my emotions, my concerns, my joys. You all gave the courage to live my life in flux and thrive anyways. My gratitude spans more than a thousand sentences I could write.

Please know I hope to write again soon.

All my love,

A little over six months ago, I started this blog. I did this to deal with the flurry of feelings and thoughts that accompanied my departure from my career & my chosen home. I knew I’d reached the crossroads that many of my followers know & feel & understand in their marrow: either continue on the same route of useless pain, misery & futility, but get to keep the status quo of your life, or completely change course, hoping things will change for the better but always thinking that they probably won’t. It wasn’t as easy of a decision as you’d think. 

But I came to the statement that has been true for most moments in my life: You can’t think yourself into good action, you can’t will yourself to be better with your mind. You just need to take the next step, no matter how terrifying or daunting or unsound it may seem.

I never thought I would find my back to a “normal” life. I opted for reconstructive spine surgery in hopes that I could have some semblance of a life. Maybe I could go out with my friends sometimes or hold down a part time job. Maybe I could spend 10 percent of the week not in pain. When I said goodbye to NYC in November, I honestly never thought I would make it back, let alone be able to live there again.

As I write this, I sit on a plane bound for NYC. I’m moving back to the place that made me feel loved, accepted & confident (even when I was in terrible pain) in a way I never thought I’d be able to in my lifetime. I’m returning to work a full time job in the mental health field & applying to schools to pursue that field for the remainder of my working days. Also, I’m returning to a significant other who has always made me feel like I have the capability to change the world for the better & never found my illness to be an obstacle but something that bolstered my character. I’m living in a body that doesn’t betray me daily with pain anymore & if I do experience pain, a simple stretch or two easily quells it.

Leaving Chicago isn’t easy. The place you recover always grabs a hold of you, even when you swear that it won’t. I’m able to rebuild a life today because of everything I experienced in Chicago. I am beyond grateful.

I’ve been oscillating between keeping or deleting this blog. I wonder if I still qualify as a spoonie. I know part of me has to be cognizant of my body for the rest of my life, more so than those who haven’t experienced chronic pain or illnesses. But the other part of me worries about taking up space that other spoonies deserve.

I guess for now, I’m going to keep it and periodically update you with what it looks like for this post op spoonie to return to a full-time job & a life with significantly less pain.

Thank you to everyone who has followed me during this journey, those of you who showed love & provided support. I value your voices & plan to spend the rest of my life finding ways to support you throughout your endeavors.

XOXO,

I’ve been pretty radio silent since my spinal fusion surgeon told me I could return to normal activity. That moment and the following days were bliss-filled in a way no words can accurately express. They gave me hope that someday in the near future, I’ll walk among those without spinal issues and blend in. I’ll no longer limp or wince or shift my weight, I’ll just walk. 

And this has been true... for the most part. 

I finished physical therapy a week ago and it’s the most proud I’ve been of an achievement I’ve been in some time. Yes. I’d done physical therapy programs before, but this was beyond stretching and conditioning. This was soul-searching, gut-busting personal and spiritual growth. My physical therapists only know a sliver of the impact they’ve had on my life and that’s because I wrote them letters in which I thanked them extensively. 

But with the lack of structure in physical therapy, I’d be lying if I said I don’t lose faith in myself and my recovery from time to time. I’m now well enough to exist in the every day world. I go to the gym. I apply for jobs. I study for the GRE. I socialize. I even went to a show, which for me, was something I thought I had lost the ability to do. But with this newfound ability to exist among the mobile, I’ll still sometimes get pangs of pain, jolts reflecting my irritated nerves. 

I keep reminding myself (and having others remind me) that it takes a full year to recover. I’m not backsliding, I’ll repeat over and over in my head, it’s a different surgery, a different recovery. 

But the same thoughts, the same anxieties, the same fears swirl in my head that my body will fall apart. Even as my body feels so different, better than it ever has, pre or post accident, I fall back into the old pattern of questioning if I’m really healing or if I’ve just deceived myself into believing I am. 

And even though I’m not in pain a majority of the time, those moments of discomfort in my muscles or joints cloud that knowledge of the truth of my current condition. 

My only hope is that as my body builds more muscle memory, my mind will follow. 

I’m currently on the other side of pain, a tenuous feeling I can say honestly I’m not totally used to yet, and probably won’t be for some time. 

Right now, I’m really trying to be present with my body. Even though my doctor and my physical therapist have both said I don’t have to worry about my spine falling back into the same disrepair, I’ll have to admit I’m a little more than a skeptic when it comes to matters of pain remission. So I’m soaking up these pain-free days, loving my body for what it is and how it feels. 

When I was in pain every minute of the day, I picked apart every bit of my body I didn’t like. My stomach was too lumpy, my legs weren’t shaved perfectly, my skin was uneven. All of this on top of the fact that I had a spine that was dysfunctional. Sure, it looked fine on the outside, but truly it was slowly peeling away happiness from me each day. 

Today, without pain, I love those things I used to hate. The stretch marks on my waist, the scars from my surgeries, the way my legs stick together when it’s too hot out. They’re all a part of my story, what I’ve fought for, and I hold these pieces close to me in high regard. 

But I still know many of my readers are still in pain. And on days when I wake up with muscle tension or push myself too hard working out, I feel those negative thoughts dripping back into my consciousness. 

I don’t know for sure what causes this. Do I feel less about myself because my body can do less? Do I want my body to be so different that it’s easier for me to hate even the parts I love on good days? Do I just have low self-esteem from years of pain induced trauma and doctors not believing my symptoms?

Well, yes to all the above questions, but I also believe it’s more than that. It’s that I innately don’t believe I can lead a beautiful life while in pain. And that’s the largest lie my mind tells me. Because look at all I’ve created for myself not just in spite but because of my pain. I have a beautiful support system I chose because of how they react to adversity, I made this blog to identify and help others going through chronic illness so they feel less alone, I’ve addressed my mental health as well as my physical so I can lead the best life possible. 

1999 days ago, a porch collapsed and my spine along with it. I shattered 3 vertebrae in a way I never imagined. I spent the next 1800+ days living life on my pain’s terms. Graduating college, getting and leaving jobs, forging and losing relationships, all with pain taking up inches to miles of the muscles and nerves in my body. I’d get better just to get worse again. I was at the mercy of the ever changing moods of my nervous system. I tried every remedy, invasive to homeopathic, with no substantial relief.

139 days ago, I finally decided enough was enough. I started this blog. I committed myself to finding answers to my pain no matter what it took. I moved from the place that feels most like home (NYC) to where I was born and grew up, Chicago.

111 days ago, I finally got the spinal fusion everyone had always warned me not to get. I was too young. There were too many risks. I didn’t care. Something needed to change. And I didn’t care what it took.

5 days ago, after months of tears and posts and disappointments and pain and physical therapy and fighting for my peace of mind and body, my doctor cleared me for normal activity for the first time in 1994 days. And I didn’t doubt him. I didn’t doubt that I could do all the things he said I could. I felt and still feel physical relief that hasn’t existed for me in years.

Today I sit in Chicago O’Hare airport, returning to NYC for a visit to celebrate my newfound health. It’s the kickoff to a life I never thought I’d be able to live. I’m tearing up in gratitude and can’t wait to spend my 2,000th day away from my accident reveling in the comfort I now physically feel in my body.

Here’s the reason why I haven’t been writing as much: There’s nothing inspirational about how mad or sad or just fed up I’ve been about being chronically ill. 

But why do we always feel the need to be positive? Like yes, on the whole it’s better to be positive than not, stress induces more pain, wallowing won’t get you anywhere, but why do I always have to have this outlook of, “I’m better off for having broken my back into little slivers that are only now forming back together after cow bone was implanted in my back.” It hasn’t been a happy story, so why do I feel the need to make it one? 

I’m not saying there isn’t happiness anywhere to be found in my life. There is. And it isn’t just external, the people around me or the opportunities I’ve had. I’ve worked so hard on my mental health to override the limitations of my physical body. I feel at peace in many portions of my life. But much of that has grown out of the fury of no improvement on my pain levels for years, wanting to make more of myself than just my list of illnesses I check off at a general practitioner’s office. 

I thought that as I recovered, my happiness would overwhelm me. I wouldn’t be able to contain myself. And there’s times where this has been true. But being so close to being “better,” like “substantially better” for the first time in my life is honestly super frustrating right now. I’m so close to being done with all this: the physical therapy, the doctor’s appointments, the days of living in limbo from a real life. I’ll probably always have pain, but I’ll be able to handle it. 

I guess for once in my spoonie life, I’d like some instant gratification. I’d like to be done already. I want to return to a life where I can make choices beyond which stretch or exercise I’ll do first at physical therapy or if I’m ready to come off a certain medication. 

For now, as the days get longer and I get better, I’m going to try to find a way to sustain positivity. 

You should not have to ask yourself, “Am I disabled enough?”

You should not have to worry about having documentation of your disability on hand.

You should not have to know how to tell your disability story in under five minutes.

You should not have to feel that you have to hide your disability.

I hope all of us spoonies can gather the strength, and I mean strength because it’s more than difficult to challenge these assumptions society has pushed on us, and begin to fight for our rights.

Our rights to ask for what we need, without fear of reprisal, mocking, belittling, disbelief or bitterness is a simple one, but not at all easy. It starts with knowing what you need and believing you’re entitled to it.

Today, I’m telling you that you are.

I think that there is this instinct still inside me to say “everything is okay,” even when it isn’t. I think it’s the instinct of a lot of my fellow spoonies. 

We’re scared to be vulnerable, yes, but we also know that it’s what people want to hear. Especially from people like me. 

My surgery was almost 3 months ago. It takes a full 6 to 9 months to recover. But most people don’t know that. So they see me up and walking around, in physical therapy and assume, with no fault on them, that I am okay. They say things like, “You look great! How are you feeling? Better?” and barely wait for a response, assuming my confirmation. 

But this weekend and today, I’m not feeling okay. Some days, like for most people, just suck. While doctors are trying to lower my intake of medications, I’m still required to do the same amount of physical therapy and have a life outside of it. What once was just exhausting now exacerbates my pain levels. 

And yet, I feel like I have to participate in the narrative of assumption. I imagine how off-putting it would be to hear, “Actually, I feel terrible. Thanks though,” in response to a caring question that wasn’t looking for any challenge. 

At physical therapy today, “Holocene” by Bon Iver came on and the lyric listed as the title of this post blared out of my headphones as I slowly pushed the bike pedals. 

I honestly nearly broke down crying.  

I’m not magnificent in the way that I am not unbreakable. I have magnificent qualities, but the ability to seamlessly ignore my pain is not one of them.