Reflections Pt 11: Settling in to Reality

Photo by the talented Hayley Harper

I am coming to terms with a more realistic vision for my future, seeking to break down the whispers and undercurrents of ableism in my hopes, seeing with a new light that is slightly devastating (if I’m being dramatic)... and ultimately beneficial. 

These past months I have reflected deeply on what my future may look like, especially while working on information for the lawsuit, not to mention preparing for and healing from 3 surgeries (bringing the total to 12 in 18 months). And more recently, I’ve had important conversations to further influence my thoughts.

I continue to have pain throughout nearly my entire body, with pain patterns that are constantly shifting across each day and over time. Old patterns show up again without fail and new patterns continue to express themselves.

I’ve made amazing progress, and still, it is frustrating and heavy to continue to experience so much pain that in many ways, holds me back from doing all that I want. I keep asking myself - what is an acceptable amount of pain, discomfort, and dysfunction to live with?

Similarly, I continue to struggle with my appearance. I may have what to me looks like a lazy eye/eyelid for most or all of my life. My lips don’t move the way they used to and my smile will never be the same. I can’t even feel most of my face or lips. I can’t feel kisses, can’t feel when there’s food on my face or mouth, and often drool or have a runny nose that I don’t know is happening. I continue to have visual impairments that presented after my Oct 2023 eyelid surgery; I can’t drive at night and am often uncomfortable with reflections and indoor lighting. Every so often, one of my pupils dilates causing me to feel disoriented. I struggle with eating and swallowing. I could keep going…

I have been looking to a future where much of my current pain, discomfort, and dysfunction are no longer worries or nuisances. I now better understand that this ideal future may never come, it is not necessarily reality.

I had a loving appointment with a new provider who 1) recognized my strength, resilience, and trauma, 2) was inspired by me, and 3) did some important level setting. She asked how eager I was to keep having more surgeries. I relayed that I wasn’t exactly eager, but I was longing to get back to more normalcy. “You will never be normal,” she said, “your expectations need to come down.” Wooooof… heavy. And, immensely helpful! This wasn’t new as I’ve had similar conversations with other providers, yet something about it hit differently. Perhaps the timing, as I had been mulling over what “normal” might mean for me, I’ve been frustrated with my seemingly constant evolving pain and dysfunction, and have realized my strong desire to look ahead and imagine when things are “better.” This intimacy and directness from a new specialist felt comfortable and reminded me of my family’s relationships with many of my early surgeons and specialists in Colorado Springs.

I notice I struggle to stay present because I don’t want this to be my reality anymore and have been holding onto hope that it soon won’t be - if I just have this one more procedure, try this other modality or specialist, look ahead to reach another milestone. The anticipation for a different existence has, in ways, inspired me to push through all the dreadful and disturbing experiences I continue to live, not to mention all the pain and hard-to-swallow trajectories given by medical providers. I can’t lose inspiration and hope now, though at times it is tempting. 

It is helpful to remember that every reflection, every interaction with a provider, every projected outcome, every summary for the lawsuit are all only a snapshot in time. They only explain and assess what is happening right now… and now is all we have, though what is happening now will be different the next time we look at it.

I already had moments of feeling deeply claustrophobic in my own skin, and with this awareness of my likely future I feel it more. At the same time, I remain proud, inspired, and hopeful. The mosaic metaphor continues to resonate.

I am working on so many parts of my physical and emotional being with a number of providers, and the number continues to grow. I wonder: what’s my satiation level of input and perspectives, or of areas to work on? how do I feel whole now, in the midst of working on “fixing” so many elements of me?

This idea of “normal” that I keep looking to, I realize, also has undercurrents of ableism that I’m slowly unpacking. what is normal anyway? Normal for me pre-accident was able-bodied in that I could do most any physical activity that I wanted to, I felt beautiful, I held positive body image. These characteristics are a little jumbled now. Not to say that I fully understand the experience of someone who has lived their life disabled, but I do believe I am gaining some insight the longer this goes on. Perhaps this last thought is even ableist, as it pushes away the idea of labeling myself as disabled. who likes labels anyway… and more importantly, who benefits from them? I am “othering” those who are disabled. However, I am…

In all this, I can feel quite alone. And yet, I know we are all the center of our own universe, all have challenges and trauma, and in that, we are not at all alone.

I am reminded of another lovely conversation I had recently with a provider. She asked: How can you open your heart more? Especially when what you have experienced—things no one else can really understand—has shown you a lack of safety, impending doom, vast demands, and a need to protect your heart. There is deep hurt there and one might be inclined to shut down, but closing off is misaligned with the beautiful, sunshine, brightness that is your being. There’s a tension there. So, where do you go when you have the most pain, physical or otherwise? When there is more pain or hurt or sadness, how can you open your heart more?

As always, I am sending love and gratitude to everyone out there - whether you land on this page, are able to engage with my thoughts and feelings, or not. We are all out here doing our best, and I see you and love you.