My story has become tiresome—even to myself

Main campus Johns Hopkins outpatient center entrance

Main campus Johns Hopkins outpatient center entrance

I’ve managed to get by over the last two months plus since coming hat in hand to you kind folks, but now I’m back again. To recap quickly, in June 2014 I was diagnosed at Johns Hopkins’ neurology department in Baltimore with the Secondary Progressive form of Multiple Sclerosis. I can walk short distances using two canes before exhaustion overtakes me, then I need to sit a while to recuperate before continuing on. The diagnosing MS specialist said my history of symptoms gave him the belief that I probably had it for 10 to 15 years already. I agree with that. My mobility problems and the use of my right hand to perform tasks have deteriorated a great deal over the past seven or eight years, but the first signs of strange muscle events happening to me began in at least early 1999. I was blaming what I came to learn was multi-level disk degeneration until I went for a brain MRI last May, when the radiologist asked me if I had MS. To be potentially diagnosed with MS was the reason a neurologist at Hopkins had sent me for the brain MRI.

Although I’ve been going through the application process for months to receive SSI, two weeks ago I got a packet of forms to supplement the application with paperwork I submitted already,

sample questions
and it took me until Wednesday evening before I had it all filled out, and managed to fax it to the Social Security Administration office in Harrisburg.

fax info box

SSA Harrisburg

Harrisburg Social Security Administration offices

I’ve been getting food from a local church-run food bank, and I have enjoyed the generosity of some longtime friends recently, which has enabled me to remain caught up with bills and have a few incidentals, but I need to pay some bills each month, and I have a neurology appointment at Hopkins in Baltimore Monday. I believe I have at least nearly enough gasoline in my car to drive to Hopkins and back, but I need to pay for valet parking once I get there, as I must request a wheelchair with a transport aide to be brought to my car so I can get to the the neurology office in the Hopkins Outpatient Center.

Driving from West Philly to Hopkins in Baltimore has come to be an extreme challenge physically, and I plan to drive there off the main highways to allow myself to rest easier along the way. This has the added advantage of allowing me to avoid paying tolls. I expect to change my official residence to Pennsylvania soon, and hope to be able to start having follow-up neurology appointments in a well-regarded MS clinic in Philly, so this may be the final time I go to Hopkins for doctor appointments.

In addition to the money to pay for valet parking and several dollars of gas to attend my appointment Monday, I’ll need an additional $142 to pay my monthly car insurance and phone bill by the end of the week. This will keep me current on bills until the first of the month. I continue to keep my fingers crossed that my application for SSI will be approved any day, and that I won’t have a need to  keep coming back to my kind friends for additional help. I know people are struggling even if they have decent paychecks coming in reliably.

The most direct method to make a donation to me is to send it to my Gmail address using PayPal. I can give you my Gmail address through a private message on Facebook or Twitter. One can also donate via PayPal from the link on my Authr page. I used to have a Go Fund Me page, too, but they seem to have deleted it due to inactivity.

If anyone wants to see more background on my predicament, I will direct you to previous blog posts over the past year. The living circumstances have changed, but the history holds true otherwise. My long bio is here. My first shorter ask here. More book information with the opportunity to purchase the ceramic sculpture Karen Sparks made for the cover here. Information on buying four-color prints of Karen’s artwork here. Background information on storyteller dolls and related premiums here. More recent blog asks here, here, and here.

Continued thanks to everyone who has contributed to me so far. It’s a humbling experience to ask and to receive as I have. And huge gratitude in advance to anyone helping me out for the first time.

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I am asking for your help

Be the Music book cover

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.

DSCF0476

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.

VHS closet 4

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.Ampyra bottle

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!

Richard Handal’s bio (longer version)

BE-THE-MUSIC_poster-web

I was introduced to the world of professional grade sound recording right before Christmas in 1971. A college friend of my father’s, Paul, took me with him to record a local community group’s performance of The Messiah at Montgomery Blair High School, in Silver Spring, Maryland. Paul brought me along with Jack Towers, several pricey Neumann microphones, and some portable Ampeg reel-to-reel recording decks. Portable in this instance meant each man had a foot-locker sized deck, along with a similar size pre-amp that had handles on the sides. Each piece required two people to carry it.

Neumann U87

Neumann U87

Paul could be described safely as an audio nut. In his Takoma Park basement, his hand-built home stereo included horns that had been used for early demonstrations of stereo in DAR Constitution Hall in the 1950s.

The horns provided part of his mid-range.

Paul was the official recordist of the world-renown D.C. Youth Orchestra. Soon I would accompany him regularly to the home of the DCYOP, Coolidge High School in D.C., quite often to the Kennedy Center which had opened recently, and to other events to record regional orchestral, chamber groups, choirs, and jazz. Again with Jack Towers, we recorded jazz violinist Joe Venuti at Georgetown’s Blues Alley on his final D.C. visit before a return to Italy, where he died two years later.

I already had a taste for many different types of music. I enjoyed Top 40 radio that was heavy on Motown, and was collecting Aretha Franklin albums. I would listen repeatedly to any song that provided multiple full-body orgasms, wondering how that happened. I convinced my mother to take me to Constitution Hall to see Leonard Bernstein and the N.Y. Philharmonic in August 1967 on Bernstein’s last trip through the area as the NY Phil’s conductor, and Paul took me to Constitution Hall to attend a performance by the great Russian pianist Emil Gilels. Paul was an enthusiastic opera fan and season-ticket-holder for Constitution Hall concerts, and after each piece he would place his open hand next to his mouth and shout “Bravo!” at the stage many times. I was not used to such unashamed enthusiasm.

WPAS ad in 22 Nov 1970 Washington Post, incl. Emil Gilels
WPAS ad in 22 Nov 1970 Washington Post, incl. Emil Gilels

The only pop concert I attended early on was Peter, Paul & Mary at the Carter Barron for my 13th or 14th birthday, but I only wanted to go because John Denver was opening for them. (It had been sparsely attended while afflicted with light showers.) During my mid-teens, I regularly listened to a jazz anthology series on Public Radio which had 180 half-hour episodes; they were played late nights and early mornings, and my nocturnal orientation often allowed me to hear two episodes a day. I heard most of them at least three times before it wasn’t on the schedule any longer. It was like attending my own secret jazz school. The episodes were written with emphasis on each artist’s personal story as related to their music career, and, while often tragic, many of these stories left me with a deep longing for stories of current-day musicians that felt as important and influential.

24 March 1973 found me at my first rock concert. I rode sliding, seated on the wooden floor in the back of a rented yellow Ryder truck with a bunch of hippies from school, to the Spectrum in Philly, to see The Grateful Dead. I had only heard their album American Beauty on a friend’s pitiful portable, so to suddenly experience an eight-minute Tennessee Jed and perfect 19-minute Playing In the Band through their clear-sounding JBL and McIntosh-based sound system, was rich nutriment to my hungry ears. It changed my life. When the Dead came to RFK Stadium that June 9 and 10 for a co-headlining weekend with the Allman Brothers, I had to attend both shows. I slept on the lawn at RFK with my face planted on my bandana after the first day’s show, too.

1973 RFK Dead-Allmans poster
1973 RFK Dead-Allmans poster

Music that was this accessible as it took one through glorious 20-minute dancing tapestries of buoyant harmonic changes, with instrumental solos and multi-layered vocals, to deliver one in a tidy package to a different place quickly seemed the obvious norm. This was what rock music could provide and did provide. Imagine my surprise when I attended a rock concert where a band played its songs more or less like their studio recordings, then were done. I felt ripped off!

For years I played drums with many guitarists and bass players in various band attempts. We rarely got out of the basement, but I took an interest in learning the sound reinforcement gear. Thanks to my grandmother, I attended Omega Recording Studios in Kensington, for basic and advanced recording engineering courses. With my longtime enthusiasm as musical omnivore and in the preservation of sound recordings, when I applied in 1990 to work as a playback technician in the stacks of the largest recorded sound collection in the world at the Library of Congress [LC], I was a natural fit. I’m confident that when my supervisor-to-be asked each candidate what we knew about the preservation of sound recordings, few others provided a 25-minute answer, and none continued for 35 meticulous minutes visiting several continents, when asked what kinds of music they were familiar with.


I had my first serious encounter with the music of Tori Amos at LC. I was becoming good friends with a 120-day temp worker. One day over lunch I asked what she seemed to be listening to all the time on her yellow sports model Walkman as she stood at the great wall of surplus sorting LPs. Upon returning from lunch, I walked several feet over to the Atlantic CD shelves and put up a copy of Little Earthquakes on the UREI main monitors, listening as I sorted baskets of incoming LPs while seated just inside the entrance to the stacks. I didn’t get a clear audition of all of it, so I put it up again the next day. That was it. I bought my own copy. Around this time, awareness of and access to the pre-web, text-based Internet were spreading around LC. I subbed to a command line UNIX shell account for personal Internet access, and managed to join the Really Deep Thoughts discussion mailing list.

Under the Pink finally came out. By this time I was relishing the ability the Internet afforded to communicate with others swept up in this music, then, weeks later, a concert at Lisner. By the time I reached the counter at the Hecht Company’s ticket department in Wheaton Plaza, they only had single tickets left. I had come for six together and bought the last six. Having read so many concert reports from others and knowing how much the music affected me, I was fearful of being too close to the stage, so I kept the ticket farthest from the front for myself, five rows from the back wall. I managed only one more concert that year when she came back in July, but before the 1996 tour began, I knew I wanted to attend as many concerts as I could. I traveled around the East Coast, then helped a friend move to Seattle that July by car, with the agreement to borrow her car when we were on the West Coast to attend more concerts. Then I flew home from SeaTac after attending my concerts numbered 9 – 18 of the tour.

I saved up enough vacation time to be able to travel to the U.K. in May 1998 for the start of the main tour, Tori’s first with a full band. The last song on Boys for Pele, “Twinkle,” had given rise to a curiosity about the Island of Iona and its Abbey, which were mentioned in the lyrics. I took the opportunity of going to the U.K. on a cheaper flight a few days earlier than I needed to for the concerts, and spent four days at Mrs. Black’s B&B at Clachan Corrach on the Isle of Iona. The six concerts I attended in the U.K. helped me set a baseline for the early band shows. This allowed me to apprehend the progress made later in the summer when they developed a serious group-think proficiency. Finer points of this band became real to me by the OLYMPUS DIGITAL CAMERAend of the tour, when I attended 19 of the last 20 concerts. Such satisfying music—each musician and crew member was top-notch, knew why they were there, and all of them did their jobs with personal flair, even the riggers. I felt privileged to be able to experience the full scope of that tour, and to meet many others with so much dedication to the music. A year plus tens of thousands of miles later, all of it in my faded red 1987 Chevy Nova, I wrote something and posted it to the Precious Things mailing list that inspired a friend to ask if I ever considered writing a book on the music.

Thoughts on Providence, 10/30/99

I think he expected I would mainly write a book for fans to buy, but he never said, and in the contract we would sign nearly a year later, I have full control over editorial content. I wanted to write something more meaningful and with broader appeal than that. I kept thinking of something one of my favorite bosses at LC used to tell me was the main thing to convey when writing a book on an artist: “What does it mean?” He always told me to not simply catalog and describe the work. I wanted to know why I’d extended myself so much to attend as many concerts as I had, stretching limits of body, car, wallet, and the comprehension of my non-Tori friends and family. What in the music does this? Is it something in “the music itself” that does it? Is it a combination of the ecological ingredients involved in attending concerts including the travel, venues, conversations, Internet? Is it the knowing looks shared from the stage? While all those things figure into the answer to the question “Why?” the music is clearly the dominant factor. What in the music causes such strong personal emotional responses? How does that work, and what can anyone interested in creating, performing, or experiencing great art of any kind do to foster deep, even primal resonances in themselves?

Tori Amos music is singular, but the aural and psychological landscapes of how her music works aren’t. I intuitively knew that brain science and the nervous system would explain some of this stuff, but not all. I knew the lessons of Carl Jung were important to Tori, and that they must have helped steer her approach to songwriting and performance, so I needed to learn some Jungian theory. I read some canonical books on music and medicine and the brain, then read some which were recently published. I sought guidance on learning Jungian thought from the librarian at the Jung Society of Washington. I still attend lectures and classes they put on, at least I have as recently as 18 months ago. Two years ago I attended an eight-week course at the Jung Society entitled Dreams and Active Imagination. The analyst who taught the course granted me an exemption from bringing a dream into class on which to perform Active Imagination, allowing me to share a song instead. I presented the most mystical Tori Amos song: “Sister Janet.”

Over the years I always let my nose and ears tell me what area or discipline to study next. I felt as if I were in a graduate degree program without any advisors. I had to figure out everything by myself from scratch. I went down a few worthless hallways, but only a couple minor ones. A person here and there could advise me in general ways in their area of expertise, but really, I was almost always entirely on my own. I read more than 200 books for this project. I did genealogy research off and on for many years, including trips to eastern Tennessee where Tori’s beloved grandfather came from, and where her storied ancestor Margaret Little lived and died. I took a music course at Montgomery College, and attended lectures sponsored by the Smithsonian on many topics. I studied music theory, mythology, Joseph Campbell, fairy tales, mermaids, neurology, brain science, memory, charisma, literature, writing, acting methods, the means by which a variety of keyboard instruments operate, slavery in the ivory trade in Africa and New England and how the piano industries were reliant upon it—a literal bloodline of the piano, a great deal on the Cherokee and other First Nations peoples, including trips to the Carolinas, and to the American Philosophical Society Library in Philly where they have major collections on tribal peoples, including many historical sound recordings of the spoken Cherokee language.

( DEEP RIVER HISTORICAL SOCIETY ) Tusks are delivered to Pratt Read Company circa 1920's.

( DEEP RIVER HISTORICAL SOCIETY ) Tusks are delivered to Pratt Read Company circa 1920’s.


My mother developed serious trouble walking and standing in April 2001. Soon she was sleeping in a hospital bed in her living room, and along with home health workers who stopped by several times per week, I was taking care of her. I got her some outpatient appointments at Johns Hopkins in Baltimore, but they weren’t sure what was wrong with her. After six months under this arrangement, the home health nurse said if a woman wasn’t going to take care of my mother day to day, she would have her sent to a nursing home. My mother’s remaining sibling, her older sister, agreed to take charge of my mother. A new tour was about to begin in Florida. 9/11 happened. As agreed, in late September 2001, I took my mother to southwestern Virginia and stayed with her a couple days at my aunt’s, then I picked up a friend near Charlotte and continued to the first tour stop in Florida.

Tori Amos at the Oakdale Theater, 14 October, 2001

Tori Amos at the Oakdale Theater, 14 October 2001

We managed nearly three weeks on the tour and picked up an old tour companion in New York City, but I eventually needed to return home due to circumstances of others. My father had died in a Texas hospital that summer, and although we hadn’t spoken in a few years, I received a posthumous gift from him some weeks later. Having begun the tour and savored its glory, I was spurred to head west to finish the U.S. leg of the tour. An old friend in Philly agreed to come with me. I picked him up and we headed to Oakland. My mother’s health continued to decline slowly at her sister’s, and she was completely bedridden for many years. I came to spend increasing amounts of time there. Coincidences of geography allowed me to continue research from time to time, but I was nearly done with anything I set out to research, and was waiting to be able to get my living environment set up with my research materials where I could easily access them, in my own increasingly mobility-challenged condition.

Days after my mother died nearly three years ago, I went to a long-standing appointment in Baltimore with Johns Hopkins’ Neurology Department. Several Hopkins visits led to my diagnosis of multi-level disk degeneration. I don’t have much control over the muscles in my lower legs. I can only walk short distances even using two canes or a rollator. I began looking for trustable people to help me clean out my mother’s house, move me to a larger house with fewer stairs, and help get my research materials and personal effects organized so I could set about writing my book in earnest. Most of my helper friends could not come to my new house as often as I wanted and the organizing process was lengthy, and now I find myself out of cash.

In addition to having so much experience of the music, I did a ton of research on this book project across many disciplines, and have things to report that are my own. I am a strong Mercury/Hermes Archetype personality, which I came to realize only after Tori told me I was Mercury in Manchester in May of 1998. Perceiving how things are connected when others don’t and changing people’s thinking are major aspects of my personality.Mercury-British-Museum I want to affect the way music is taught with this book, and am planning to market it heavily to music teachers in addition to Tori Amos people. Examples I have gleaned from studying the life and music of Tori Amos have taught me techniques and methods anyone can learn to increase their ability to compose, perform, and listen to music at a soul level. These things embrace the fact that we can simultaneously experience ourselves, and feel more invested in the human community.

I estimate I will need a good six months more to finish the writing-editing process and go to print. My friend and initial investor who suggested a book will cover the various costs of printing when that time comes. I need to raise money for all my living expenses until I finish writing the book. If I am unable to continue living in this house which is set up for me to write even though I have mobility problems, it may be that years of research I’ve done will go to waste. I want to share what I’ve learned, and I’m confident many people want to read it. All I know to do is to throw this project and myself to the tender mercies of the music and Tori Amos communities. I’ve continuously demonstrated my refusal to give up on this project, but my current investors can only support me to a point, as they have their own families and other responsibilities to tend. In 20 active years online, I’ve taken great pains to avoid sharing much of my personal life publicly. This is nothing I would choose to do were it not my only hope for getting this book finished. I’m asking for your support and assistance in promoting this crowdfunding campaign.

Thank you.

Richard Handal

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