It is customary and right simply to extol the virtues of the deceased. Surviving loved ones are in a fragile, grieving state and the deceased is in no position to defend himself or herself.
In a different time his death would bring the MPN community to a hushed halt. A funeral cortege with mourners and friends, powerful leaders and failing patients would follow the long black limousine, a silent parade of automobiles rolling in tribute.
For Robert Tollen may have driven some of us apart but he is the one who brought us all together in the beginning. The very first to create a patient run on-line support group.
A tribute to Robert Tollen who died last month poses a special challenge. I believe he himself would disdain a eulogy that painted him as a plaster saint. Among his many faces, he was a passionate, contentious, brilliant, MPN patient advocate, deeply informed, sometimes insulting, highly opinionated and even contradictory. In many ways, he was like you and me magnified, from time to time, several orders of magnitude.
We have not seen his like in the MPN community before and are not likely to in future.
For his direct personal attacks on patients or his persistent mingling of radical political and medical comments, for petty jealousy at his enormous following, Robert Tollen was banned from several Facebook pages and both “competing” US-based email support lists. In turn, though a strong and vocal supporter of an open internet and free speech, Tollen banned several dozen MPN patients for perceived wrongs. He often repented and always justified his actions,
In the end it was unimportant. Tollen — who created the very first patient run email support List after working with Dr. Harriet Gilbert — aggressively built his own larger email support lists and popular FB pages. Despite his PV and disabling co-morbidities. Robert Tollen relentlessly answered patient questions and daily posted extensive news relevant to MPN healthcare.
He was an institution and a lifeline for thousands of MPN patients, including me.
Five years ago, in the course of a series outlining the birth and development of MPN patient support groups, MPNforum published this profile of Robert Tollen. As he had a chance to review it and contributed substantially to its final form, we include it here.
Farewell, Robert. Rest in peace, fierce warrior, your labors here are done and fruitful.
By Zhenya Senyak
The year was 1995 and I was returning from a long road trip with my son. The world of DOS was about to end as Microsoft labored to get Windows 95 out the door. This is about the same time the first MPN e-mail bulletin boards were organized into daily on-line e-mail groups.
When we returned, and this is the point of telling this story now, I found our membership in the Kaiser Permanente HMO system had lapsed. I reapplied and, on routine physical, discovered I had ET. What followed, after a bone marrow biopsy and testing was a brutal and brief course of Anagrelide and then…nothing. In 2000, I found myself in Florida under the care of a hematologist at the Sylvester Cancer Center who thought it was time we considered treatment options. I went back to my computer and started seriously searching for information – a task technologically hampered in those dark earlier days but now, five years on, much easier.
I found one MPD patient support group, which I joined, briefly. The day after being placed on moderation by that List owner, I received a long, friendly e-mail from Robert Tollen inviting me to join his MPD Support group.
Over the next decade that lifeline he tossed me was sometimes a vitally important part of my life… and sometimes an object I wanted to coil into a noose and wrap around his neck until he promised to behave.
Robert Tollen is a complex, brilliant and frequently compassionate man. He sees himself as a crusader, an educator, and a committed advocate for MPN patient rights. He’s all that but he can also be seen as a bully and a zealot.. As the founding father of MPN patient support lists – and the most prolific and one of the best informed originators of patient background information and advice — his contribution to the MPN community is inestimable.
For nearly a dozen years he and I have exchanged ideas. He refuses to meet in person, refuses even to talk on the phone, and prefers – insists on – e-mail communications. Over time, he has emerged, for me, as a deeply enigmatic figure, one I confess, I am unable to contain in a truly objective frame. And yet he is far too significant a presence in the MPN on-line, patient support world to be omitted from this review. Therefore, with the substantial aid of Tollen’s own words, here is a personal reflection on my Robert.
There is a very old joke about a man shipwrecked on a desert island.
When he is found, his rescuers are surprised to see not one but two houses of worship standing on this tiny island. When asked, he turns to one building and with a look of obvious disgust, shrugs and waves dismissively, “That one, I never go to.”
Unfortunately, it is a story that can be applied to the state of another phenomenon, the MPN e-mail patient support list. Despite our isolated condition in the world sharing an orphan disease, despite our limited resources, we build multiple houses for on-line support…and turn our backs on one or more. Could it be something in our DNA?
The DNA of on-line MPN patient support groups is not hard to trace.
On the maternal side, we can trace its origins to the founder, Dr. Harriet Gilbert (https://mpnforum.com/2011/10/11/harriet/) who, in the early 1990’s, maintained a patient mailing list on AOL, organized a patient-doctor conference, and published a newsletter for patients. On the paternal side, it is Robert Tollen, who organized in 1994 the first patient-run daily e-mail List, thriving today as www.mpdsupport.org.
The next generation started with Joyce Niblack (https://mpnforum.com/?s=Joyce ). A volunteer patient with Dr. Gilbert, she was a member of Tollen’s group before leaving to start her own list, combining elements of Harriet Gilbert’s and Robert Tollen’s model. Her list was the predecessor to today’s MPN-NET.
Significantly, while Joyce Niblack’s work in running the Scottsdale, Arizona conferences led her to establish a foundation, build links to the medical community and drug companies, and establish enduring social bonds with patients and physicians, Robert Tollen’s, from the very beginning, was a solo act. He has impacted the lives of many MPN patients – perhaps thousands — but few have met and interacted with him outside the protected bubble of the Internet.
As a result, it is easy to underestimate his true impact on MPN patient health. Beyond establishing the basic on-line patient support model, Tollen built a list that served a reported 3000+ MPN patients daily, often breaking news of applicable scientific studies long before it appeared in the journals. His deep on-line public archives and his original survey research have been a scientific and clinical resource for all those engaged in the diagnosis and treatment of MPNs.
“The evil that men do lives after them, the good is oft interred with their bones, so let it be with me. I do my part online with mpdsupport.org because it pleases me to help others and gives me a sense of productivity with the limited energy and pervasive fatigue as patients that we all unfortunately experience. ” – Robert Tollen
69 years ago, Robert Tollen was born on a Sunday in 1948, a tense, cold day in Philadelphia. He will celebrate this birthday in Key West, his home of the past 15 years. In between it has been a hell of ride.
The Autobiography of Robert Tollen
There is little in his autobiography that would suggest the path his life would take after his polycythemia vera diagnosis.
“I was born January 9, 1948. I’m 63. I lost my dad to a heart attack at age 46 when I was 14. ….I grew up in the Philadelphia, PA area. I attended Olney Elementary, then Olney High School, during my school years starting from age 12 working after school at a neighborhood drug store doing everything from delivering prescriptions on my bike to eventually actually filling prescriptions. I …graduated from Lincoln Prep School in Philadelphia…and Rider College, Lawrenceville, NJ. I attended South Texas College of Law in Houston for two years…I spent most of my working career in sales and marketing…enjoying important klife experiences s a successful manufacturers representative for over a decade…in the then burgeoning lawn and garden industry during the 80’s.”
“In 1985 I started Kayla Advertising, naming the company after my wife. Originally I sold to travel agents passport holders, luggage tags. My wife joined the business and we expanded to banks, associations, and national companies. I retired from our company in 1998 due to health issues. We are an international company. In 1997 we relocated from Columbia, MD to Key West.”
“I was diagnosed with PV in 1990 but I suffered symptoms for a full eight years prior. I was phlebotomy only from diagnosis in 1990 to Feb 1995.At that time I started interferon due to an enlarging spleen and increasing fatigue, and I have been on it ever since. I will soon switch to Pegasys on Dr. (Richard) Silvers’ advice. I still require phlebotomies.
‘ How MPD Support started..
‘ In 1994 a few patients with MPD including myself started communicating online on the then fledgling Internet, using the predecessor to America Online. We actually wrote to each other and carbon copied the others until we grew to about 40 patients and someone suggested and we applied for and joined the fledgling AOL “Give back to the Net” program. … I started with two subscribers, myself and another patient all the way across the country, as of today we have 3,025 subscribers in 43 countries.* It has been an amazing ride.
* This was written before AOL terminated its program on October 31, 2011. Tollen re-emerged November 1 on MPDSUPPORT@LISTSERV.ICORS.ORG
Despite his prolific writings and on-line interactions with MPN patients and caregivers, Tollen, without partners, without a corporate structure or enduring infrastructure, remains an individual phenomenon. His progeny, the MPN lists that he spawned, have turned their backs on him, perhaps with cause
The next generation
With the death of Joyce Niblack and the emergence of new alliances, new managers and the formation of MPDchat, the third generation of patient support lists emerged in 2007-2009. MPN-NET, followed the general direction set by Joyce, (http://wp.me/P1wOgO-sF ).The break between Joyce and Robert, more than a dozen years along at the time, was simply continued.
The third generation and its progeny shared some founder characteristics. While Tollen thought it essential to maintain an open list, Joyce Niblack, in the interest of keeping member posts focused on myleoproliferative disorders, strictly controlled her list by filtering comments and limiting discourse. In the subsequent generation this inherited trait mutated into a ferocious form of censorship. The result is third generation managers frequently guard their borders by banning simple informational posts from those they consider competitors or unworthy of consideration for any reason. Officially, Robert Tollen was against censorship on principle.
Censorship and the MPDchat Schism
MPDSUPPORT is a patient to patient support group, we have no censorship, and we are not controlled by any physician, group of physicians, nor any pharmaceutical company nor industry or trade group.
From the MPD Support official group description
The origins of MPDchat
Coincident with the election of Barack Obama and the opening of the healthcare debate, Robert Tollen became an outspoken critic of that measure and those embracing it. To me, the nadir of this activity, published on his list at the height of the debate, may have been his open letter requesting the support of conservative commentator Glen Beck. Beck, along with Michael Savage, who is featured on Tollen’s Facebook page, seemed for a time to have replaced the medical luminaries previously gracing the list discourse. Even more abrasive than harsh right wing rhetoric, were Tollen’s personal attacks – he would call them “responses” — on patients who disagreed with him on this or any number of other issues on which he had strong opinions, such as vitamin supplements, organic food, cryogenics.
However, through all the invective, insults and political rants, Tollen never attempted to stifle or dominate debate through censorship.
In open rebellion against politicalization of MPD Support and its pervasive confrontational tone, Judy Cuckston, an English caregiver, started MPDchat in 2009. The first few dozen members of MPDchat were all refugees from Tollen’s MPD Support. Tollen responded by organizing MPDchat USA and reportedly appropriating material from MPDchat for his own list. Judy responded by removing him from the List. The early MPDchat was successful. Judy Cuckston’s blend of English manners, easy humor, chat and disciplined reporting on MPN developments helped membership to swell to over 500 by April, 2011 when she abruptly resigned, passing the day-to-day management of MPDchat to Beverly V.
Beverly, a long-time associate of Tollen and regular contributor to his list before joining MPDchat, immediately initiated stringent controls, briefly prohibiting all mention of any competing List.
The competitive spirit may be universal in the on-line List world, but at MPD Support it just is not expressed in censorship.
Thus, the current situation. The MPN patient support lists are a significant resource for patients even if, statistically, they reach only a small segment of the MPN population. There are three popular English language on-line daily MPN patient support sites with a total worldwide subscription not exceeding 6,500, a figure that includes duplicate and multiple memberships and several hundred names of those who have changed e-mail addresses, died, or simply no longer participate.
In total, only a few hundred subscribers post at all and a handful, including managers, contribute the majority of posts on all lists.
While anyone can post to MPD Support, list managers have barred Tollen from access to the other two sites which, in turn, ignore each other’s existence. To an observer, it is bizarre that this internecine warfare should be so mean-spirited in an undertaking that was after all organized originally by Dr. Harriet Gilbert as a means to support ill and worried MPN patients. However, it is a simple fact.
“The true MPN history can not in honesty be changed a whit. You.. have no idea of the true history and underpinnings of what went right and what went wrong and all the back stabbings, the intrigue, the multitude of patients treated poorly by their peers, and all the lives lost over the years knowing each death personally, with individual lives we have actually known and then lost. It has been a bumpy ride by all, for the doctors, the survivors, and the deceased…Ronald Regan once wrote or said something to the effect that liberals are not ignorant, it is just that what they believe in isn’t true.”
– Robert Tollen
There’s more to the story. The narrow construction placed on their mission by some managers is an essential, if only partial, part of the on-line patient support story. Not sharing reports of breaking news or alarming drug responses might possibly impact the well-being of list subscribers. However it’s a fluid Internet world and while there are deep list loyalties, most patients and caregivers subscribe to multiple lists, and follow the MPN Research Foundation newsletter, various Facebook sites, MPD Voice, MPNforum Magazine and are in direct contact with each other.
There remains a fundamental attraction to the MPN support lists. They provide a home and a support network for patients, a supportive circle of friends familiar with these diseases, a source of practical and sometimes useful advice and a sharing of experience in a world oblivious to myeloproliferative disease. At their best, the lists offer a caring environment to those of us who often have nowhere else to turn.
The dark side
“Robert Tollen is one of the MPN giants…Something in us wants our heroes to be perfect in every way. Robert readily admits that his words and actions have at times been clouded by his disease and by his medication. He remains one of my MPN heroes. My husband, Charles, has been diagnosed with PV now for over 30 years. On his behalf, I have followed three lists dealing with his disease…. When I was diagnosed with early stage breast cancer three years ago, I asked the lists for help finding a list for me. It was because of Robert’s suggestion that I found the right list for me: http://www.bclist.org I feel I owe Robert big time for that one. I owe him for caring and communicating with me when I don’t even have a MPN! I also owe him for staying the course, for maintaining the archives (at his own expense), for helping me with computer stuff, and for lots of things I don’t even begin to know about.”
– Marlyne Rohan, patient
From the very beginning of our relationship, Robert Tollen offered me valuable, friendly advice. I originally followed his list for several months until I decided no longer remind myself daily that I have ET by facing a fresh edition of MPD Support each midnight. I was asymptomatic, my platelets were high but stable and I wanted to plant my head as deep in the sand as I could for awhile.
Five years later, when I had to face my progressing MPN, I went back to MPD Support and Robert was still there at his post. He recommended a course of action and the hematologist he thought I should see.
That’s why I was ill-prepared for the 2008-2009 change in direction. The Robert Tollen waving copies of The Savage Nation over the heads of MPN patients was unrecognizable to me. In some of his past patient responses, I had seen flashes of irritability but nothing like the continual browbeating and expostulating that characterized so many of the MPD Support digests in that period.
I can only speculate as to the causes. In retrospect I see this as a crisis period in his life, perhaps triggered by health or meds, by political developments and fears of social upheaval, or just an idiopathic meltdown the expression of which was opaque to many but possibly familiar to Tollen.
In a recent posting he wrote:
” Our endocrine system is fragile. Imagine the disruption to the balance in the MPNs when the sensitive biofeedback systems of adrenaline,erythropoietien, thrombopoietin and other regulatory hormones get out of balance, ignoring normal. This will often manifest, incorrectly diagnosed, as psychological “panic attacks.” I suffered for years on end. My poor family. Only my wife knew (from the) onset they just had to be organic, my mother and sister thought I was nuts. Never an apology from any of them after the right diagnosis was finally made with PV eight years later.”
Tollen takes a high dose of interferon – 6 Mu, daily – which he considers affects him physically and emotionally. Additionally, he “suffers from diabetes and all the physical and emotional ramifications.” He injects himself from 5-7 times daily.
“The IFN,” he says, “makes my diabetes worse. Like most diabetics, I suffer from heart disease.” He’s had several angioplasties.
The wound and the bow
It is tempting to view Robert Tollen as a hero and tragic figure. The hero that comes to mind is Philoctetes, a Greek warrior with a powerful bow. Philoctetes had a suppurating wound, the smell from which forced him to live up on a mountain, isolated, until the Trojans sailed into the harbor and the Greeks had need of his bow. Most commentators look at the wound not as incidental but the source of Philoctetes power.
Robert Tollen has helped great numbers of MPN patients with his deep knowledge of these diseases and therapeutic options. And despite his daily publishing activities – the MPD Support list, his Robert Tollen Daily Report, his Facebook posts – he seems isolated. Few have actually met him face to face. Many are grateful to him, others are glad he lives up on the mountain.
It is too simplistic to say Tollen’s rants and personal attacks on patients are the wound and the real man is sweetness and light. Yet it is difficult to reconcile someone who calls patients “toxic,” and “bitter fools,” and occasionally uses immoderate language with the man who patiently explores and lays out medical options and his personal recommendations for others in elaborate detail with no hope of reward or compensation (The widely used “I’m no doctor” is, after all, his disclaimer and mantra.)
My Robert, the most colorful and knowledgeable of list owner/managers, may be neither hero nor tragic figure but is clearly a vital part of our history, an MPN patient and caregiving phenomenon and a powerful ally in our struggle with MPNs.
“I play a very small part by accumulating information online that I subjectively feel has importance to our subscribers and I post that information to our list. With technology today, for me, it is for me not that difficult a task, but I understand I have an ability andaffinity to MPN research that has grown by experience to be beyond the online grasp of the average patient. Therefor I do it. It is very rewarding and fulfilling and has been a measure of success in my life by turning a bad thing (polycythemia vera) into something good. I recommend each patient do something similar for themselves, we all have some expertise in one thing or another. When we reach out to others it diminishes the pain we feel when encountering life’s travails.
© 2017MPNforum. All rights reserved under Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. My Robert originally published in 2011)