This Year I Hope to Write Honestly My Disabilities and My Passions

My chronic pain is very much a part of me. It is me, it does define me, but it’s far from all of me. I often hear attempts at inspiration try to say things like don’t let your illness define you. But living in denial won’t help me either. I think, like many things, it’s a balancing act. So, I want to try that this year, writing and living honestly with my disabilities along with my passions like nature. Because it’s all part of me. 

I have hesitated to write because so much has changed since I began my writing journey. I am so much more disabled now. I find it hard to fight through brain fog and make sense of my thoughts. I have also found it hard to connect with nature since I often can’t hike or be outside for extended periods anymore. I have to relearn how I approach writing and nature. 

Writing this, my joints hurt. I’m wearing wrist braces (which makes it very difficult to type) because my wrists are hurting after spending some time at the arcade. I think I did overdo it after all, just when my physical therapist told me to, “have fun! But don’t overdo it.” That’s always a fine, faint line that is so difficult to gauge until I accidentally cross it and realize it too late that yeah, I overdid it… again… 

I want to give a snapshot of what life is like for someone with disabilities and chronic pain. These things are so often sugar-coated. Or we are reduced to medical research, diagnoses, and doctor appointments. However, there’s a much more human experience to chronic pain and disability, that whether disabled or not, we all should learn to acknowledge. 

In other words, I want to tell our story, to make it more than data, and show what it’s really like to live it, the good the bad, the painful, and the frustrating. Also, let’s make this an open space. If you want to tell your story of living with disabilities, you can comment or email me. I’d love to chat and hear your story too and share it if you wish. 

Now, more than ever, we need to protect one another

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness,” Preamble to the Declaration of Independence.

I never thought I would fear the loss of life, liberty, and the pursuit of happiness. I never thought I would lose my rights here in this country, taking steps backward after so much progress had been made for so many marginalized people.

I fear the loss of my healthcare, and disability aid because of the significant cuts planned as well as disability rights and access due to cuts in the ADA. I fear the loss of my rights as a woman to have healthcare access for my body. I fear discrimination and loss of rights as part of the LGBTQ+ community. I fear the loss of democracy in our country.

I fear for those I love, for trans people losing their rights to healthcare, and choices for their bodies, and facing increased discrimination and hate. I fear for immigrants facing the threats of deportation, discrimination, and racism when so many of them were doing everything they could to seek a better, safer life. Even those who are here legally, I fear discrimination and racism based on assumptions and fears.

I fear for my black friends who are already experiencing increased racism from people who now feel empowered in their hate.

I fear for the environment, that reductions in the EPA will put so many threatened and endangered species at risk when their futures are put in the hands of the whims of corporations wanting to build where they wish without limitation.

The list goes on, veterans losing their rights, schools losing funding. History not being taught, christian ideals forced on non-christians. Books banned.

The protections, rights, and programs that protected us are threatened to be stripped away by those who were supposed to protect us.

I’m not the only one fearing their rights, safety, freedom, and future being taken away in the next few years.

Over the past week, I’ve heard so many different responses and thoughts on the results of the election. At this point, it all goes beyond political differences when people’s very lives are threatened.

We need to fight for our rights as much as we can. We must protect one another, and stand up for one another especially those who are different from us. We must not excuse hate, discrimination, racism, and fascism. We must fight for the nonhuman species who will lose government protection. So now, more than ever, we need to protect and look out for one another.

For those who haven’t realized how much we are threatened, project 2025 lays it all out. Read it, educate yourself, but please take care of your mental health as you do. Please feel free to reach out, I am a safe place if you feel threatened and need resources, I’m here. We need to support each other now more than ever.

The Reality of Life with Chronic Illness

I’m in pain. And maybe it is endless, it is, let’s face it. I’ll be seeing a number of specialists, taking meds, having surgeries, and unable to work for the rest of my life.

I’m having trouble accepting where I’m at and being okay with it. Unable to work, unable to write much, unable to think clearly, and the expectation to do those things. I can’t even shower without sending myself into a flare-up. Tasks that were once easy are an immense chore and it doesn’t seem easy for people to grasp the extent of my pain and disability.

It’s a constant battle accepting that, but I’m not alone, it’s not my fault, and people love me as I am. It seems straightforward enough, but I have to remind myself of these things daily.

There is still life and joy, moments that are worth it in the middle of all the pain. It’s difficult but it’s worth it.

Existing is exhausting. Life in general is hard but when just breathing, standing, and walking causes immense joint, muscular, and nerve pain, it’s discouraging. It’s a constant fight to keep going, which in the end is exhausting.

Often, when you get sick or injure yourself, you’re able to go to the doctor; they run a few tests and the diagnosis is straightforward. They send you home with some antibiotics and anti-inflammatories, and within a few weeks, you’re better.

I have no hope of getting better, just managing as best I can to function and not get worse with PT, daily exercises, and a handful of medications. This is the reality with chronic pain and chronic illness, it’s a constant fight and balancing act.

People tell me I’m strong. I know what they mean. But I don’t have a choice it’s fight or give up and die. So being strong doesn’t feel like a compliment when for me it’s simply surviving. If I had a choice, I would like a break, a chance to be weak for a time, to be able to rest, be pain-free for a moment.

It’s hard to grasp chronic pain and illness until you’re living it, and it’s even harder once you are, to accept it, to be okay that you aren’t getting better, and to find the will to keep going and get up each day, or most days despite it all.

We with chronic illness know we are strong but really, we are exhausted. Next time you see someone with chronic illness maybe rather than tell them how strong they are give them a hug or tea if they can tolerate it and give them permission to let go, and rest for a moment, lend a comforting shoulder or a cozy sofa with lots of blankets and treats, we really just need permission and a place to rest for a moment.

A week and a half of migraines…

I’m going on a week and a half of migraines… I’m exhausted. My head is spinning, I can’t think straight, I’m wearing my sunglasses inside and my noise canceling headphones to try to lessen the sensory impact on my sensitive nervous system. One of the worst things–how difficult it is to write. I want to write so bad. I miss it. I love it, and I feel as if this passion is being taken from me along with everything else, unless I can reshape it and rework it to work with my body and mind and my many new limitations, which have become a maze to navigate. As if writing alone wasn’t hard enough, now to try to get these two to work together. I’ll see what I can do.

This is one thing I’ve learned with disability and chronic illness, you have to get creative with how you do everything, even things you were familiar with, you have to invent new ways to do them that work with your body and mind and become your own inventor for all your accommodations.

I’m having to do that now and it’s a challenge. I don’t know how I’ll do that with my writing or where to start but here’s to trying because I’m not quite ready to give this dream up.

Writing Through the Fog

I want to write more but the mental fog, the burnout. It hurts knowing how much I love to write, how much writing means to me, and being too exhausted, in pain, and foggy to focus on it much at all. 

I know what my writing could be and maybe that’s part of what holds me back from writing the little bit I can. I fear my words and thoughts will come out jumbled. The thoughts get stuck and sometimes lost altogether before making it to the page. 

But I’ll try writing even though it may be jumbled, messy, and incoherent at times; at least I’m writing and that’s something. I’ll write in short jumbled snippets if I have to. So here it goes. You can follow along if you wish my writing may be messy but it’s me, doing what I can.

The Nature of Healing

“As I sit in the humid air, exposing my wounds, nature meets me, exposing her own wounds.”

An essay very personal and close to my heart had the honor of being published recently in the first issue of Mental Rhythm Magazine. They are a literary magazine that seeks to end the stigma around mental health, an issue I also care deeply about. So here is my very honest essay about some of my own experiences with depression and anxiety.