All homage due to Salt ‘n Pepa, talking about pee probably isn’t as fun or interesting to most folks as talking about sex, but hey. I never claimed to write about fun topics, did I? For those who don’t know already, I have what’s called a suprapubic catheter. For folks not in the know, I am unable to stand up. The catheter allows me to avoid getting on and off a sit-to-stand lift to pee a million times a day due  my neurogenic bladder. As with most things, this convenience comes with strange associations and for me, obsessions. The pee in the bag haunts me. Is there enough? Is there too m ..read more

I continue to try to focus on gratefulness. I continue to try to force myself to focus on the long-term game. Not this week. Not this month. Hell, not even this year. So that years from now when these years will be the ones I look back on I will be able to say to myself, “Man that was hard, but I made it.” And I continue to fail. Every day, as I try to focus on gratefulness, I find myself in tears because I want to be a better person than I am. I wanna be the kind of person who can find beauty in pain. Peace in chaos. Joy in misery. Every day I try to be the type of person who wants to continu ..read more

Sometimes I don’t wanna go to sleep because I’m afraid that when I wake up, whichever of my caregivers who is supposed to be there to help me isn’t going to be there. This happens more often than I would like. It’s unavoidable. People have lives. Things go wrong in the lives of my caregivers that are unforeseen and unintended and have nothing to do with me. But they affect me. These things that are unforeseen that go wrong in other peoples lives affect me directly and sometimes in ways that feel tragic at the time. I know in my head they’re not tragic. They just feel that way at the time – I’m ..read more

I know it’s been a very long time. I’m not here to review my struggles over the last few months since last I wrote because things really haven’t changed much. Quick recap maybe? I suppose it’s probably best to write an entry with some context so things make more sense, so here we go… I am a full-time power wheelchair user. I can no longer stand. Because of the no-standing thing I have state-subsidized caregivers 16 hours a day who help me move my person from place -to-place (the program for this funding is called ACT 150 if you ever find yourself in need in the state of PA). These caregivers u ..read more

I am squirming inside of this human flesh suit that is so broken. I am stuck inside of my head where I cannot stop obsessing about these strange symptoms and sensations that result from not having the ability to move my lower body at all anymore I feel pressure as my legs swell from being immobile sitting on my wheelchair from the time I wake up until the time I am transported to my recliner for “relaxing” which means being immobile but in a different place where my legs can be elevated. I am overflowing with ideas and unable to get them out. I feel creativity lurking in me somewhere. These ur ..read more

Wow. It’s been a long time. I don’t think I’ve ever not written words for this blog or even just for myself for this long before. I wish I could define it – that thing that’s getting in the way of my writing. But wait! I can! Sometimes I am horrifically obtuse. The thing that’s getting in the way of my writing about this strange period of my life is the completely overwhelming nature of adjusting to hitting ever new levels of disability that are happening so fast my brain isn’t able to absorb them. The transition to becoming a new version of me that is a full-time very, very sick human with ev ..read more

This is a public service announcement for anyone who follows me on Facebook. Apparently, I’ve been hacked which means I no longer have access to the Bethy Bright and Dark Facebook page (and I’ve lost thousands of followers there). I’m waiting to see if I can recover my old pages before making new ones but there’s a pretty good chance that content may be lost forever. If I can’t get it back in a week or so, I’ll give in and make a new page so you’ll also have to “like” that page again. Holy crap this is annoying. Losing a community I spent over six years building is not cool. Sigh Anyway, I’ll ..read more

It’s been a good long time since I’ve felt like my typically quasi-functional MS self. I think that’s been obvious by my unwillingness to write about it. I mean, when have I ever gone three full months without writing a single word? Never. Not since I could hold a pen and write words with it. Everytime I start to put words on a page, I get lost, then I quit and say, “Maybe tomorrow.” Then tomorrow comes (repeat). These patterns play themselves out consistently every time I take a turn for the worse and I begin the internal battle over whether or not whatever bullshit thing is happening should ..read more

I have to be honest. When I started this series about the surprising and wonderful people that have come into my life as a result of having multiple sclerosis, most of the folks who made the list are people I’ve known for quite some time. I’ve had MS for six ridiculously long years. The number of people both in-real-life and on the socials who have impacted me in amazing and unexpected ways is quite high. Like, this series could go on for a good long time (whew because nobody wants to read about the shit show that my daily life has become lately). Today’s entry, though, is someone I’ve only kn ..read more

No. I do not own the rights to this photo of the one and only Idris Elba so I am fully prepared for the copyright police to come after me but this is a risk I am willing to take for the second in my series of posts about the people in my life who have made a fundamental and sometimes unexpected impact on my life. And yes. Idris Elba is one of those people. We’ve known each other for some time now, having met shortly after my second month-long stint in Inpatient Rehab. His impact on my life was many things. Immediate. Unexpected. Sometimes joyous. Sometimes heart breaking (like that time he got ..read more