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.



ICYMI, I’m sick. I have been for a very long time, and I always will be. It’s not great, but it is what it is. I have good(ish) doctors, a thousand specialists, medications, mobility aids, and a pretty good attitude. But regardless, here we are. I think I take it all in stride pretty well. It’s not easy to be in pain all the time, to watch your ability to do things slip away, but I try to keep my chin up buttercup, find things I can do, ways I can make the world a better, more beautiful place, and double down on those. That’s really all any of us can do, right? Use what we have to work with to keep trying to make things better for everyone. More beautiful. Kinder. Gentler. More inclusive.

Something I’ve been talking to my therapist about lately is alienation. Abandonment. Watching those in your life who are supposed to love you walk away when you become too inconvenient. It’s not paranoia, it’s a true story. Ask anyone with a chronic illness. People don’t mind too much that you’re sick, or slower, or can’t go some places, do some things… until the 3rd or 4th or 10th time you have to cancel because you can’t get out of bed. Until there are too many shows they want to go to at inaccessible venues. Until you have too many doctors appointments. Until they get tired of you not being well. Then the calls, texts, messages stop coming. The invitations dry up. They take a step back. And another. And eventually are just gone all together. They just get tired of you being sick, so they fade away into the background, find someone better, more convenient to spend their time with. It’s understandable, but it also really sucks. It breaks your heart a little each time.


So yeah, I’ve been talking to my therapist about this. About the feeling of being a burden to those around me. The feeling that my friends and loved ones deserve sooo much better that this mess of KT Tape and mobility aids and medications and dry shampoo and medical debt. We’ve been working on some surprising exacerbating roots of this (that is, painful root causes of this feeling in addition to the basic root of just being forever sick). It’s been eye opening and shocking to find these moments of feeling like a burden or an inconvenience traceable so far back. But we’re working on it. And while we do, I’m trying not to sabotage my existing relationships by clinging too tightly. Asking for too much reassurance. But the truth is, most days I’m scared to death that everyone will leave me. And sure, as my therapists points out, “if they’re the kind of people who are going to leave you because you’re sick, they’re not the kind of people you want in your life.” And yeah, it’s true. But there’s this very real fear that EVERYONE is that kind of person, that I’m that much of an annoyance. And as introverted and independent as I am, I don’t want to spend my whole life alone. And as much as I have a hard time really believing it, I think, sick and all, I deserve love and companionship just as much as the next person. I think.

Today is also mother’s day. I’m having a really hard time with it this year. It’s always been an uncomfortable day for me, but this year is extra rough. A year ago last week my biological mother died. Suddenly. And there was a lot left unsaid and unresolved. And I don’t know if anything ever could have been resolved or said or fixed or repaired or whatever, but we will never know. And while I love her dearly and don’t blame her for giving me away so young, there are trace feelings of abandonment there. One more person I was too much for. Illogical, irrational, selfish, I know. But there it is. And now she’s gone again. And I have a lot of very confusing feelings about it all that I’ve been putting down in notebooks for years, and still haven’t totally explored, figured out. All I know is that it hurts. A lot.

(I honestly don’t know how to put into words how I am feeling about this. Feeling stuff isn’t my strong suit. But suffice it to say I’ve been pretty deeply depressed, and cried on my cat a bunch today. She’s super patient and kind to me. I’ve been also thinking on something a very kind human said to me about allowing my grief to express itself however it needs to. They called it “grief autonomy,” and I really loved that. Made me feel a lot better about long spells of numbness, then sobbing uncontrollably, then being okay for a while. Grief autonomy. My grief is mine, and no one else’s. It can present however it needs to. That’s kind of beautiful, if you think about it.)

My adoptive mother always did her best, but as you have likely gathered from my previous writings, my growing up wasn’t great. In a lot of ways I was very isolated and felt very alone, abandoned during my youth. An orphan with multiple parents. There are a lot of feelings around all of that as well that aren’t worth getting into here (I have many notebooks on this topic, as well), but suffice it to say, as I sit alone in my little house with my cat sleeping next to me, listening to it rain, pain consuming me, I am feeling very sad. And alone. And sad again. There are some additional factors to this mother’s day sadness that I don’t want to discuss, but they are there. They are very personal, they break my heart, and there is little I can do about them right now. So I sip my coffee as I listen to Bill Evans play piano, and try not to blow up my best friends phones with texts.

I’ve been thinking a lot about being alone. In fact, I had a great conversation about it with my friend the other day. They just went through a breakup not too long ago, so that’s something they’ve been exploring a lot lately. It’s kind of beautiful to watch, actually. They inspire me in so many ways. But we were talking about being okay with being alone. With not fearing that. Embracing it, even. And I realized that I have a real love-hate relationship with being alone. On one hand, I love it. Fuck off and let me read, write. Don’t talk to me, just let me sit in peace and enjoy the sunshine. We could go to the mall, oooooor I could take my motorcycle out for a long ride down New England back roads. I appreciate the party invite, but I’d rather go to a museum by myself. See ya! But I also find that, more often than not, when I’m actually alone (versus being at my office or a coffee shop working with people around, etc), it’s because I’m stuck in bed. I’m having a bad health day/week/month and I can barely get out of bed by myself, much less go anywhere. So I’m alone. And that type of alone is very different than “Not Now, I’m Reading” alone. It’s a relationship I am exploring, trying to come to terms with. Have a peace treaty with.


I don’t want to be reliant on anyone else, especially for my emotional wellbeing and happiness. I want to get to a place where I can be alone, for whatever reason, and be totally content. Not afraid, not tortured by my inner trauma clawing its way out, not reliving the echoes of everyone who just gave up on me. Who I was too inconvenient for. Who I couldn’t/wouldn’t have babies for. Who were too embarrassed to be seen with me. Who were annoyed that I didn’t just do yoga and go vegan and use essential oils and be cured already. So today I am reflecting a lot on who I am. Where I’ve been and how far I’ve come. Who I’ve been and who I am becoming. Embracing that what I can do isn’t what gives my life value, but who I am, how I love and care for others does.

In the end, I may be very physically broken. I may be slower. I may be dealing with severe trauma. I may be becoming more of a “Netflix and chill” person than a “climbing and kayaking” one. But, as my friend said the other day, “Life is suffering, sure. But we can still always choose to be kind.” And yes. That. No matter how hard things are, where I’m at, I can be for others that which I always wish I’d had myself. Someone kind, warm, loving, compassionate, and safe. Who is always there, will always listen to you, always support you, always love you (but with good boundaries).
That and, idk, I think I’m a pretty bitchin’ cat mom.


Sky Fish, Suicide, and the Importance of Love

Sky Fish, Suicide, and the Importance of Love

Inertia vs. Happiness

Inertia vs. Happiness