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Hallo, willkommen

This blog is a personal record of the life of a chronically ill (chronically awesome), disabled, dyslexic, doctoral student and entrepreneur.

I share the beautiful moments, and the hard ones. It's unfiltered, and extremely uncensored.

Enjoy!

Honoring What Is

Holy hell, I haven't written in OVER a month! Yikes! That’s because, to be honest, I’ve really been struggling. My health continues to go downhill unnervingly quickly, I’ve felt really overwhelmed with my finances and work, all the side hustles I have going on (most of which don’t bring any/much income yet), and what shattered nonsense is left of my personal life. My mental health has actually been more okay than usual, which I attribute to a few life changes, but it’s still a daily hurdle.

The physical health is really my biggest concern right now, as it affects everything else. My pain is worsening, as are my dislocations, cardiovascular symptoms, respiratory issues, and neurological problems. My heart just kind of does what it wants some days (REALLY FAST, reaaaaalllllyyyyy slow, both at the same time! neither? *spark spark*). Often breathing is hard, sometimes because the air feels heavy and thick, and others because my ribs feel like they are breaking every time I inhale. I need pain management all the time and a wheelchair many days, but I can’t afford either. Hopefully I’ll be able to qualify for State insurance, which would be a huge load off my mind and shoulders, but we shall see. Going down the whole “officially filing for disability & government assistance” idea is really scary, for a lot of reasons. But also it’s literally come down to paying my medical bills or being able to pay rent some months, and that’s no way to live.

I’ve been working hard on 100 things, as I always do, and sometimes things are absolutely gangubusters and I can’t keep up! Others they are slow as molasses on a February morning. And while, after what… 6? 7? years of doing this whole self employment thing, I am well aware that this lull is part of the cycle. But it never ceases to be terrifying and incredibly frustrating. My doctoral work continues to continue. I’m making progress, getting closer every day. And while I’m one of those weirdos that’s always loved school, I started my undergrad (for the 2nd time after dropping out at 18) almost 9 years ago, and I’m really tired now. And excited to get to actually USE my doctorate, but also worried that by the time I’m done I’ll be too sick to do so.

I’ve been doing a lot of work on my mental health. The anxiety, depression, the (C)PTSD and everything that entails (which is SO much). It’s getting better, for now at least. As much as dealing with my physical ailments is terrifying and anxiety-inducing and just plain frustrating, I’m really proud of my ability to keep my mental health feet under me. More or less, at least.

Thursday was Thanksgiving. Thanksgiving is a garbage holiday based on genocide and other atrocities. It’s racist af, if we’re being honest. But it’s also a good reminder to not only keep fighting for the rights of our native people, but also to pause and be thankful for what we have. As Seneca wrote in one of his plays, “What little I have will go far enough.” While this quote was in reference to a woman murdering her family (don’t worry about it), I think we can ignore the context and focus on this sentiment. What little I have, right here, right now, is enough. So with that in mind, I’m going to do some humble-bragging, reverse-complaining, and expressing some deep gratitude. Hold tight!

(note: I am not looking for financial, health, legal, or spiritual advice anywhere in this post. I’ve got it covered. Thank you.)

I had to go to the doctor yet again recently. I have a really irritating dermatological issue on my face that I think is an autoimmune reaction. But far more importantly, I needed to establish care with my new PCP (primary care physician) and talk to them about the fact that my heart and lungs “weren’t’ doing heart or lung things” for almost a week, keeping me stuck in bed for days on end. That my vertigo is getting way worse. That I honestly can’t tolerate the pain some days and my migraines are getting more frequent and severe. It… didn’t go well, resulting in me paying a ridiculous amount of money to receive exactly zero assistance or care from the doctor. But after I bitched about this on Facebook, a friend reached out and gave me the information of a doctor they recommend highly, who hopefully will be able to help me out, at least a little. I also spent HOURS of my life on the phone with Access Health CT and I think, due to my self employment and my medical nonsense, I can qualify for state insurance starting in January. That would be a huge thing for me! To give you perspective, I’ve already had to take out an $8,000 personal loan to pay my medical bills JUST FOR THIS YEAR. Not having to pay for (at least most of) my medical care would be a dynamic improvement for me. I could actually pursue the help and care I need, and for that I am infinitely grateful. I’m also grateful for the thoughtful recommendation from my friend.

I struggle to make ends meet sometimes, but still try really hard to do good work that positively benefits the world around me. More often than not I end up not making much of a profit on such work, breaking even with a little left over (or in some cases funding project out of my own pocket), but if I’m making things better, even for one person, I’ve convinced myself it’s worth it. And while there’s a layer of anxiety and struggle there, I am SO blessed to have gotten to be involved in some amazing things! Most recently, I gave a talk a week or so ago up at University of Connecticut Hartford at the Transport Hartford Multimodal Transit Summit where I talked about my #AccessibilityPSA work and accessibility and disability rights issues when traveling to/in cities and the need for more disabled people’s involvement in the design/implementation processes. It was very well received, and I made some amazing connections! I love sharing my work. I love helping cultivate a more kind, educated, equal society. I am blessed as fuck to get to do so through #AccessibilityPSA and my other ventures.
Honestly, it still feels like a dream a lot of days…

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I am becoming more and more isolated, as it’s harder and harder for me to get out and socialize, or even keep up with responding to messages, sometimes. It’s physically challenging, but also it’s just getting tougher on my mental health. Parties and going out with lots of people is really hard. Shows and gigs are tough. Even making it out for dinner and drinks requires advanced planning. Also, being an introvert, I have a natural propensity to just stay home with my cat and books, or go read alone in a coffee shop. But isolation is bad, especially when you have Major Depressive Disorder. That being said, I have the most absolutely incredible people in my life! From my partners to my best friends and everyone in between, I’m enormously fortunate. I have more mind-blowingly beautiful, kind, and brilliant people in my life than I know what to do with. Hella fortunate!

I even have a few people who are like family to me, which is a pretty big deal. I don’t really consider myself to have much family, outside of my sisters, and that is very intentional. Good, healthy boundaries that took years to put into place. And while one of the best decisions I ever made, it’s also left me very… alone, I guess is the best way to phrase it. Some day I’ll write a post about how adoption taught me that blood does not make family, but being purchased by someone and being in close proximity to folks doesn’t make family, either. But for now, I’m thankful that there are a few people that I consider to be a part of my family. Some I’m somehow related to, but most I’m not. And it’s beautiful and I am thankful.

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My cat has been really sick this summer and fall. And I’ve spent A LOT of dough trying to keep her alive and doing fine. And it was touch-and-go for a while. And I cried a lot. And my anxiety was through the roof all the time. I spent weeks spoon-feeding her high-protein wet food mixed into a slurry with chicken broth and clam juice. I had to skip buying coffee and other little luxuries for a while so I could afford her medication. And through this I have been reminded of what I already know - Trillian is my world! I am thankful every day for my sweet baby. She was a rescue that I took in from my then-sister-in-law 11 years ago, and little did I know that she would end up being my best friend, my closest companion, my familiar, and a damn fine inadvertent therapy animal! (follow me on IG for an infinite number of cat pictures)

I could write a whole piece - AND I AM! - about politics as of late. But suffice it to say that since our political situation here in the good ol’ US of A has gone to hell in a handbasket, it has forced me to get involved, affect change, and allowed me to meet some of the most amazing people right here in my community. I have so much to say about how grateful I am to have found ways that even a Cripple Punk like can be involved and make a difference, as well as sharing time and space with a bunch of truly beautiful, passionate people. As I said, I’m working on an entire post about this, but gosh, that requires a lot of emotional energy! Regardless, stay tuned. That’s coming soon.

Reading is a struggle for me, between the dyslexia, the brain fog, and the fatigue (& the fact that my eyes are REALLY bad! Hashtag grateful for glasses). But GOD I love reading! And I’m lucky enough that, even though I can’t sit and read for hours like I used to be able to, I can still sit and read. And it still lights me up like nothing else. Praise the universe for books! I even go to my favourite coffee shop to sit and drink a cup of coffee while taking some time to read every Sunday morning (which you have noticed, if you follow me on Instagram). It’s a little pleasure in my life, but a very important one. I’m one blessed bitch, yo.

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And lastly, I am thankful for my disability. As weird as that sounds. As much literal pain as it causes me. As much of an inconvenience (putting it way too lightly) as it is, I am thankful. Because not only did my illnesses get me in to my line of work and research in the first place, but it’s made me a better person, given me a beautiful community. Dealing with disability has taught me to be humble and kind, but also to stand up for myself and not take no for an answer (when it comes to my rights, my health care, respect, and equality). To value and respect myself and others equally (that’s a big one - undervaluing myself has been my JAM for years). It’s taught me the importance of education and empathy, and how to be strong yet flexible. It’s made me absolutely relentless, and has taught me that it’s okay to rest. It has given me the opportunity to find a passion and follow it wholeheartedly! And it’s connected me with a world of other amazing disabled folks, which is one of the best gifts I’ve ever been granted.

What I’m saying is, look… life is hella hard. And it seems especially hard right now for a lot of us. And it throws really shitty stuff at us all the time! And it rarely seems fair. And it often feels like it’s way more than we can handle (trust me… I had a hard time staying alive a few months back. I understand how overwhelming it feels). But through it, I’m choosing to not only acknowledge that shit’s fucked up and then double down on trying to make it better, but I’m going to acknowledge that even through really dark times there is room for gratitude. Even just for one thing. Even if it’s really small. I think of it, to myself, as “honoring what is.” Or, constantly reminding myself that “what little I have will go far enough.” Time. Energy. Resources. I honor what is, even if it is very little. I am thankful (and tired).

By the way, my choice to be thankful for little things even when things suck is 100% for me. It’s not to benefit others or make someone else feel good. I’m not grateful because I’m supposed to be, or because some preacher somewhere told me it’s my moral obligation. Fuck that. I honor what is because it makes my soul happy. Do what makes yours happy!


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A Quick Update

Gosh Darn It All To Heck!

Gosh Darn It All To Heck!