In 2019, I was overcome by a debilitating attack that was eventually diagnosed as multiple sclerosis; I spent about a week in the hospital, about a year actively rehabilitating, and continued my life cautiously but largely asymptomatically. The week of April 9, 2024, all that changed.
Over the span of 4 days, I began experiencing an onslaught of rapidly growing symptoms such that, on April 12th when I was driven to Keck for MRIs, I collapsed in the lobby (always one to make a dramatic entrance) and was immediately admitted as an emergency inpatient to deal with what quickly became clear was some sort of "severe" MS event. I continued to decline while hospitalized and did not respond to initial treatments; I certainly couldn't walk, but I also could no longer eat solid foods, I was having trouble breathing, I couldn't speak (could only vaguely wail in ways that my blessed mother was, usually, able to translate due to her impressive mind-reading abilities).
We would eventually learn that the new lesions on my brain were mimicking the effects of a stroke; I also had pseudo-bulbar palsy, so my left hand had curled into a claw. I am very lucky in that I was not really in pain, but any number of other weird feelings were definitely part of the MS roulette during this time. I dropped to 97 pounds and they were about to put me on a feeding tube—let me tell you, I sucked down more applesauce than I ever want to see again in my life.
Fortunately, I finally began responding once we began plasmapheresis, a dialysis-like procedure where they install a central-line catheter and, over the course of a week, repeatedly flush all the blood/plasma from my system, clean it of the misbehaving immune cells, and put it back. I also began a slew of new medications and supplements and, after 2 full weeks inpatient, they decreed me discharged. However...the Berg Balance Test the therapists use to determine whether you're generally safe to go about your daily activities without risk of falling over? I was shooting for a score of 45.
I got an 18.
So, they kept me for a third week in Keck's incredible inpatient rehabilitation center, where I slowly worked my way back to walking.
(I also nearly lost my hair because, as it turns out, being largely glued to a hospital bed for that long is not a salon-approved hair care technique. But thankfully, after hours of work by a whole team of incredible people, we overcame that particular obstacle!)
After 22 days at Keck, I was released to go home on May 3rd, where I've been continuing the rehabilitation process. Fortunately, my MS picked incredible timing: I just so happened to be teaching at USC again this semester and, thanks to a particularly wonderful co-instructor, I was able to complete my contract with only minimal disruptions.
However, as the semester has now ended and I face down a growing list of specialist appointments, rehabilitation equipment, and potential changes to the life I've known, I find myself now in need. My family has been incredible through all of this, and they've already given me far more than anyone could ask for; my mother, who may or may not be past her "spring chicken" years, slept next to me on a hospital chair every night during those 22 days, and has been on my couch at home for a further 2 weeks to make sure I'm fed, walked, and supported. My father and brother have both done their share, too, and I'm so grateful for the many friends and colleagues who have offered their help in different ways. The truth of the matter, as I'm sure so many of you know, is that life is incredibly challenging right now under the best of circumstances (rent, groceries, and so on), but an unanticipated crisis like this could put any of us into a state of precarity. So here I am, waving from the depths of my current abyss!
First and foremost, I am still recovering and managing my energy, but my typing is almost at full strength, and I'm aching to work. I could have used this past month to set up my next job but, well, life had other plans. So at this point, if there's any work (writing, copyediting, consulting) you know of that I could dive into, that would be the most wonderful help you could offer.
Short of that, though? Well I could, of course, attempt to auction off the "art" I accidentally created while attempting to communicate with my parents in the hospital.
But instead, I thought I would turn to the many people who have been in my life, personally and professionally, through the years, to ease the unexpected financial strain. Some may not even know I have MS. Some have been along for the ride, asking how they can help. Regardless, I would never want to impose or make anyone feel obligated in any way, but if you find yourself with a few dollars you could willingly spare, it would so help to keep me in my home right now, and ease the transition when I've lost so much time to things outside my control, yet bills continue to accumulate.
I am also pursuing disability, grants, and other avenues! Of course, all that takes time (years, in some cases).
If you are in a similarly precarious place and can't comfortably help, I obviously empathize completely! As gross as it is, even a "like" or other "engagement" could still help by increasing the reach of this post, thanks to our vaguely dystopian algorithm-controlled culture. :)
Regardless of how you'd like to respond, I hope that my sharing this bit of news can help increase awareness and understanding—about MS, about (dis)ability, about precarity, and so on. I retain the awe, the gratitude, and the optimism that characterized my initial diagnosis; I've learned so much, and I have so much appreciation for the many specialties that have helped me along this journey. It is with that same optimism and appreciation that I now turn to you all, hopeful that we can get through this patch together and excited about what comes next.
(all photos courtesy of my dear mother!)
I'm so incredibly touched by all the support I've received over the past couple of weeks, coming from all corners of my life. Some of you I haven't spoken to in decades (and many I've never even met!), yet you've all taken the effort to show me how cared for I truly am. I'm so, so grateful, and humbled by it all.
