Yesterday, three of my friends from the house in West Philly where they have graciously welcomed me into their lives on a day to day basis since six months ago, traveled with me for over three hours in my car to visit my rented storage unit in Hagerstown, Maryland. We rented a U-Haul truck near there on the way. By the time we arrived at the storage facility, it was freezing, windy, and starting to get dark. My friends went through nearly every bit of my storage unit and put all of the research materials they could find into the U-Haul. It remains to be unloaded here in West Philly today on Tuesday. They put a padlock on the back door for overnight. I am bent, and, at least for the time being, broken. I could only drive as far as Towson before needing to relinquish the wheel of my car, but even just being a passenger takes a lot out of me. After a while at the storage unit, my hands felt as if they might get frostbite, and I sat in my car for a few minutes with the engine running to warm up as the headlights were trained toward the inside of the storage unit.
Much of the first floor and basement of my friend’s rented house here in West Philly were rearranged and opened up over the last few days, even an old upright piano was trashed, in order to receive the six bookshelf units of my research collection, and as many of the relevant sound recordings and papers as they could find while rummaging through the storage unit in the freezing dark. They were on quite a roll for more than 2½ hours, finding most of the items.
It began to snow.
They soon put the various emptied contents of the storage unit which had been placed on the asphalt roadway outside of the unit back into it, and we began our three- and four-hour treks back to West Philly in my car and in the U-Haul truck. I have in the bank, ironically, the sum of $214, the exact cost of a month’s rental of the storage unit which a kind and generous soul began paying on my behalf two months ago. The U-Haul rental was $180-plus with insurance, gas and tolls must also be paid, so I’m already in the hole again just from the trip to get the research materials so they can be made accessible to me and and I can get back to writing. I don’t know how much my state of mind will be holding me back as I worry from day to day where my next meals are coming from or how my bills can get paid in the meantime, but I couldn’t pass up the opportunity to have these research materials brought here after my friends remarkably suggested remaking the main floor of their house to accommodate them, so I can finish writing my book before the MS overtakes me.
I am now entirely invested into this house in West Philly to, somehow, even with its many distractions, finish writing my book. I am to go back to Johns Hopkins Hospital on Monday for a second MRI on my brain and another neurology appointment, to follow-up on the ones I had there in June, when I was officially diagnosed with the Secondary Progressive form of Multiple Sclerosis. The idea is to see how quickly the disease is causing damage. I am, in fact, getting around better than I was when I moved here in June, seemingly because of the medicine I was put on. I don’t know where the gasoline, tolls, and stamina are going to come from to be able to do this, but I can keep pulling over to recuperate if no one who drives can go with me, at least, I can, if I have enough money for gas and tolls. I already have about half the gas I need in the car.
I still believe the Social Security Administration will approve my application to begin receiving monthly payments under their disability program, but there is nothing to hang onto specifically to believe this is about to happen any day. I will contact the MS Society again, this time for some emergency funds, and hope they can get a couple hundred bucks sent my way, but the red tape involved with doing that will surely be one more thing to distract me and sap the little energy I have day to day. But this is the only way forward that I can figure now as I await the meager inheritance from my aunt’s estate next summer. A recent exchange with my cousin who is the estate’s executor reinforced the idea that this inheritance will be meager, indeed.
Please, if you are able and so inclined, donate anything you can spare to me on Go Fund Me, or with PayPal via my Gmail address if you know it, where I will get every penny. (Go Fund Me takes a small cut.) If you want to donate on expectation of a premium such as a printed book or eBook down the road after I manage to finish writing it, you can go to my Authr page and donate there with PayPal after choosing a premium. More bio and other details can be found at the links to my blog pages which are given on that Authr page, but the current situation in which I find myself as described there changed at the end up May when I had my stuff put into storage and came to this dining room in West Philly. I realize this all sounds preposterous, but this is genuinely some of what I’ve been going through. Thank goodness my longtime friend was able to convince his household to allow him to fulfill his long-time promise to keep me from living on the street.
This friend brought along a framed poster from the storage unit yesterday, putting it into the U-Haul truck as soon as he came across it. He brought it into the house and hung it up on a nail sticking out from the top of a window in this dining room where I live, even as nearly all the other items remain to be brought in from the truck later today. It’s a poster from the 2 December 1999 Jingle Bell Jam, a Christmas festival concert at the Oakdale Theater in Wallingford Connecticut, one of the so-called Blackmail Tour concerts Tori was pressed to perform and did perform despite a miscarriage days before, lest any of the sponsoring radio stations play her music even less than they did already. This concert was the day I posted the message on the Precious Things mailing list and elsewhere which inspired a kind gentleman with outsized faith in me and my abilities to ask me to write a book on this music, which has compelled some of us to travel far and wide to experience as much of it as we possibly could. I think of this poster as a personal manifesto:
I will focus on the crisis at hand. I have just over a hundred dollars in the bank and 21 in my pocket. Even though I can’t stand up long enough to cook, I have enough money to eat for nearly another couple of weeks if I spend every cent. I paid my phone bill for the month, but paid no October rent yet. I’ve been paying $250 a month to stay in my chair in this dining room in West Philly. The Johns Hopkins neurologist in Baltimore who diagnosed me with the secondary progressive form of Multiple Sclerosis in June said to take 2,000 IU of vitamin D per day, which is twice the suggested daily minimum. I take a whole-food style complex made from calcium instead of limestone that enriches bones rather than lining one’s arteries, is absorbed easily, and costs around $60 a month. I like to take additional supplements for my blood sugar, heart health, and a multi-vitamin-mineral pill, and even having cut back some, the dietary supplements still add up to around $200 a month. My auto insurance is paid-up till Jan 20.
I hope to retain my Maryland citizenship status and insurance, as I still consider myself just a visitor here in Philly. I recently sent in the form for a Maryland absentee ballot. I hope to avoid becoming entangled with local Pennsylvania governments from which I would need to disengage before moving back to Maryland. (Food stamps, license plates, etc. I just renewed my Md. driver’s license in August. The Johns Hopkins Hospital system is in my state-based Medicaid health insurance plan, even though I have to drive a good two hours-plus to get to it in Baltimore.)
Eight people live in this house now and there are frequent visitors, but the Internet usually holds out, and it’s good, considering how bizarre it all is. When I came up here from Maryland, I was told I needed to bring very little because there isn’t much space, and that is absolutely the case. I brought few clothes in a weekend bag, have my recliner chair with a motorized lift that I sit in all day and sleep in, have a narrow table in front of me with my laptop that swings away off to the side, and I have a tiny table to my right with three drawers in it. I have a few medical type things such as tape and iodine-based skin anti-bacterial in a bag in the closet, and I also have my coffee grinder, French press device, and that’s pretty much it. My 10 x 30-foot storage unit in Maryland costs $214 per month. If I get behind in the rent for my storage unit which is nearly five hours west of here, I’ll lose everything else I own, and all the Tori Amos items I carefully amassed since 1993 will evaporate as cleanly as the morning dew.
I’ll lose my large, meticulously-collected library of books and their bookshelves, hundreds of original mylar-sheathed magazines and newspaper clippings with Tori Amos interviews, seven boxes of file folders with specialized articles on many related subjects, document boxes with Tori Amos family history and genealogy documents (seriously, you have no idea), and many hundreds of sound recordings that I would need so as to be able to finish writing the book I researched full-time for over 10 years—I read more than 200 books for this project. In addition, I would lose my stereo, televisions, all of my other clothes, furniture, kitchen items, appliances, tools, at least many hundreds of CDs, LPs, various audio and video recordings not related to my book project; I’d lose every one of my historical family papers, and as many as 15 photo albums of family photos. Did I mention my stereo? My speakers may be from 1981, but they’re wonderful.
I will receive a modest inheritance from my aunt’s estate near the end of May once it’s been a year since she passed away. I won’t know its exact amount for another month or so when the estate sale has been carried out and the house has sold, but it should be enough to keep me living someplace—back in Maryland, I hope—where I can bring my research materials out of storage and available to me long enough to finish writing my book, which teaches how to have a deeper experience of music as a listener, composer, or performer, using the life, work, and family history of Tori Amos as examples. My multi-disciplinary approach uses Jungian analytical techniques alongside Stanislavskian acting skills in a manner which has never been proposed for use in the teaching of music on a mass scale. A few singer-teachers such as Liza Minnelli live this and teach something similar, but only to a small subset of performers. My book will also present much new Tori Amos biographical material and never-published family history, some of which I’m confident neither she nor anyone else in her family knows, so Tori people will want to read this book, which I see as my life’s work.
The original investor who asked me to write a book in the first place said he will take care of all publishing-related expenses once the book is written. It’s entirely possible that any day now thousands of dollars of missed pay will show up in my bank account from the Social Security Administration and I will begin receiving monthly payments from them after they approve me to receive disability, but I have no reason to believe this is on the verge of happening. Many report it can take three years or more before being approved, but one Hopkins neurologist told me having MS is a fast track to getting on disability, and I truthfully told the SSA “yes” when asked whether my disability will likely lead to my death, so I expect to be approved without needing to go through an appeal after an initial denial that 70% of applicants receive. Maybe I’m just stupid, but that’s what I believe.
If my research materials and other possessions are lost due to lack of payment for the storage unit before my aunt’s inheritance comes in I’ll be unable to finish writing my book, and the remainder of my life will probably consist of little more than waiting for the MS to overtake me. I have appointments for another brain MRI back at Hopkins in Baltimore on December 15 and a neurology appointment that afternoon in the same building, all of which is designed to be compared with the examinations and MRI from June when I was first diagnosed with MS. I have to say, any ongoing nerve deterioration seems slow, and the insanely expensive drug the neurologist put me on which my insurance pays all but $3 for seems to allow me to get around with much better speed, so in that sense I’ve actually improved since June, and I would reasonably expect to be able to finish writing my book if given the proper circumstances.
I know a few people will help me out this time as they have told me so. I’ll post more later as time moves me to the next crisis. If you are able and so inclined, please donate on Go Fund Me, or with PayPal via my Gmail address if you know it, where I will get every penny. (Go Fund Me takes a small cut.) It takes 3 – 5 days for PayPal to send money to my bank, and I need cash available soon to pay my storage fee on time before November 1st. If you want to donate on expectation of a premium such as a printed book or eBook down the road after I manage to finish writing it, you can go to my Authr page and donate there with PayPal after choosing a premium. More bio and other details can be found at the links to my blog pages which are given on that Authr page, but the current situation in which I find myself as described there changed at the end up May when I had my stuff put into storage and came to this dining room in West Philly. I realize this all sounds preposterous, but this is genuinely some of what I’ve been going through. Thank goodness my longtime friend was able to convince his household to allow him to fulfill his long-time promise to keep me from living on the street.
I remain humbled and grateful for the help I’ve received so far. Anyone wanting to lend me some cash toward getting me to June should contact me so we can discuss it. It takes about $800 a month to continue living here as I am in this chair, although winter heat bills have not been factored into that.
THANK YOU! And feel free to help spread this around!
I never spoke of this publicly before because it could sound self-serving, but here in the year after the year of the selfie, what the heck. Some friends of mine in the now-defunct band The Hydrogen Jukebox wrote a song about me in late summer 2000. It’s based on a visit I paid them in their dorm suite at Temple University in the spring of 2000. I had been visiting friends in New York and had a giant box of CDs with me plus various accoutrements in a shopping bag. They had one fellow who would do bizarre, impressionistic monologues, and I insisted on taking them to Tower Records where they were required to purchase a Lord Buckley CD. It came to be their most popular live song through several band incarnations and arrangements, and much dancing would take place whenever they started to play it.
My friends moved into touring around the world full-time with their sideshow troupe as the Squidling Brothers.
Exclusive — Steven Brill Extended Interview Parts 1 & 2
In this exclusive, unedited interview, Steven Brill examines the monopolistic pricing structure of American health care. [6:24]