We are now so close and there are less than two weeks left on the road but the spirits are still high. We have high hopes of reaching our six-figure donation target with the big New York finale coming up next week. Before we started the journey we set ourselves the goal of raising a six figure sum for Project A.L.S., and that is exactly what we intend to do.
Today was a different day because I experienced my first struggle while driving in my very comfortable car. Before I explain, it has actually been much more challenging to drive rather than cycle. It is so much more satisfying to cycle than drive and actually much easier psychologically. In any case, I began driving this morning when I noticed a fly next to my feet that started tickling me. At first I tried to slap it away, move my feet around to make it understand that I did not like to be tickled. Yet she did not want to hear any of it and kept coming back to tickle me some more. I tried pulling over, opening the door to have it fly away but it would just hide behind the pedals, wait for me to close the door to resume driving to come back and tickle me some more. This literally lasted over an hour before I finally had to take deadly action and managed to close the door on her. I do feel bad and never wanted this to happen but in the end she gave me no choice.
We are getting very excited about arriving to see our friends, family and celebrate this wonderful journey. The reason I do not say the “end of this wonderful journey” is because this is the last thing it will be. Saul and I will both stay involved in this movement and more generally in the fight against ALS, and we hope other young men and women will take up the reigns in the coming year. If you are interested in doing so, please contact us so that you can help us keep this journey alive and the fight going. We will assist anyone with the experiences we have gained, the contacts we have built and the use of the wonderful website that Ana and Christina made and helped us to update to this day. If you have other ideas, please do not hesitate, we will listen and are always looking for new partners.
The hills are back. They’re not as massive or as meandering as they were in Oregon or Wyoming, but they’re still hilly, and there’s a lot of them here in northern Pennsylvania. Departing Cleveland on Saturday morning, I rode up to a small town called Conneaut – just a few meters on the Ohio side of the border – thence to Warren, from there on to Coudersport and today on to Mansfield, a small town bang in the middle of Pennsylvania from where I write.
Pennsylvania is more rugged and rural than I had imagined. There was no sensible reason to expect otherwise; but having pedaled across states like Wyoming, where we would often go 90+ miles without finding so much as a gas station, I had managed to indulge in the delusion that Pennsylvania would be an urban fountain – a state-suburb of New York City. I suppose I saw this section as the home stretch. Indeed it is, geographically: as the crow flies we are just 219 miles from NYC. But you don’t feel like it as you pedal through the Allegenhy Forest, stop for a break and have to repeat the word ‘water’ five times just to be able to re-fill your Camelpak. (“What?” .. “Water” .. “Say what?” … Water, you know the stuff you drink, war-tur … “You say waaa-drrrr” … the penny finally dropped, and the bearded gentleman no longer looked at me as if I’d just broken out of The Cuckoo’s Nest.)
Being essentially Auggie-less on the road has changed the experience. It means I can go at my own pace, stop when I want, make a roadside phone call, discuss politics with a pidgeon, curse at trucks, observe bees, hum Simon & Garfunkel ballads … really do anything without having to worry about holding up someone else. It also takes away some of the psychological pressure of cycling 70-odd miles a day, knowing that there is someone in a car never far away. But it’s not what we had planned, and it’s just not quite same cycling along without a fellow cyclist plodding up the hill next to you.
This is not to detract in any way from the seriousness of the effort. We are just a few dollars short of $70,000, and I am determined for us to reach six figures before we bring the curtain down on this part of the campaign. I think it is possible. What is certain is that Move For ALS will have a life (and quite a healthy one I hope) beyond this ride. Cycling across America is fun, epic even, but it’s not what this movement is about. It is about moving people to act, to do something to help those who devote their lives to the fight for treatments and a cure for one of the world’s very worst fatal diseases. I’ve often thought that most people, if given the chance, would like to do something to make a difference. Here you can. Here you go. Every dollar, every word and every person makes a difference. Everyone can do something. Please help us, help Project A.L.S. and help and give hope to the roughly 90,000 people in America (and many more worldwide) currently living with Motor Neuron Disease.
(July 9th, 2010) On Sunday July 25th, Saul Goldberg and Augustin Quancard will complete a 2-month long, coast-to-coast cycle ride across the United States. The ride forms part of Move For ALS, a global ALS-awareness and fundraising campaign inspired by historian, author and Goldberg’s former professor, Tony Judt. To date, Move For ALS has raised nearly $70,000 for Project A.L.S., the non-profit organization that funds and conducts cutting-edge scientific research seeking a cure for ALS, the fatal neurodegenerative disease.
Beginning the ride in the Pacific coastal town of Astoria, Oregon on May 25th, Goldberg and Quancard have ridden over mountains, across lakes and through deserts. On the road they have brought hope to individuals and families affected by ALS; they have been joined by cyclists and hosted by spirited people all across the country – and now they are coming home. America has Moved For ALS: now it’s over to New York.
To bring the curtain down and to show support for the campaign and for Tony Judt, Goldberg and Quancard invite people to join them as they pedal through New York City and on to Brighton Beach on Sunday, July 25th. Cyclists, long-distance runners, disabled athletes and former students of Judt’s are especially welcome.
On the Sunday there will be three meeting points where participants may meet Goldberg and Quancard on their way through New York City. The precise locations, times and distances are listed below. Please be sure to bring adequate supplies of water and food!
Meeting Point A: Project A.L.S. laboratory, 11.30am
Project A.L.S. stem cell research laboratory
3960 Broadway, Manhattan
Nearest Subway: 168th Street (1, A and C trains) Approximately 30 miles from Brighton Beach
Meeting Point B: Underneath the Williamsburg Bridge, 2pm
Underneath the Williamsburg Bridge
Kent Avenue, Brooklyn
Nearest Subway: Marcy Avenue (J, M and Z trains) Approx. 15 miles from Brighton Beach
Meeting Point C: In Front of The Fontbonne Hall, 3pm
In Front of The Fontbonne Hall
Shore Road, Fort Hamilton, Brooklyn
Nearest Subway: 95th Street – Bay Ridge (R train) Approx. 5 miles away from Brighton Beach
Brighton Beach Arrival: 4pm
Precise location TBD
For more information on Move For ALS, and to make a donation, please visit: www.MoveForALS.com, or contact Saul Goldberg at saul@moveforals.com
[Disclaimer: Anyone joining the "Move For ALS - Grand Finale" event does so at their own risk and agrees to hold harmless Move For ALS and its affiliate Project A.L.S. for any accident, injury or harm to their person or property resulting from participating in this event. Move For ALS and its affiliate Project A.L.S. take no responsibility for any injury, illness or harm to person or property resulting from participating in this event. All participants should have medical clearance from their physicians and be healthy and able to participate in such a vigorous undertaking. Move For ALS and its affiliate Project A.L.S. take no responsibility for the safety and well-being of any participants in this event.]
Yesterday was a fabulous day. We drove out to Wooster to visit Jay Kinney and Teresa Canfield, who have both been diagnosed with ALS within the last year. They and their families and friends (including Ellen Pill who kindly organized the brunch) welcomed us with open arms and hearts for brunch and we had a wonderful discussion. This was exactly what we needed to bring us back to the top after everything that has happened in the last couple weeks. It lifted our spirits and reminded us of how great this campaign is – the hope and the reinforcement it gives to people suffering from the devastation of ALS.
It was also a wonderful day because I punished Saul in Ping Pong for the 7th game in a row. [I was having a bad day.] A rivalry has started between us in the last few days because there is a Ping Pong table in Diane’s house and we both love the game.
The night was capped off with a wonderful party that Diane had beautifully organized. There was incredible food, wine and company. Everyone was very enthusiastic about the project, praising our efforts, generously donating and promising to spread the word among their communities. Dianne has been a wonderful host and her enthusiasm for the cause is motivating.
Only five days after leaving Chicago we have arrived in Cleveland – the last major city stop before we reach New York. Here we are staying at the home of Dianne Foley, a leading trial lawyer who has a close connection to ALS: her very good friend passed away from the disease a few years ago. Dianne immediately engaged me with amusing stories of her friend (also called Dianne) whose coping methods with ALS and personality sound very similar to Tony’s. Dianne is passionate and angry about ALS and the urgency of the need for treatments and a cure: it is with more people like her behind us and Project A.L.S. that real, tangible progress will be made.
Dianne learned about us after hearing the interview Tony gave with Terri Gross on NPR Fresh Air. (NPR kindly publicized our campaign on air and on their website.) We will be staying at Dianne’s home in Shaker Heights, just east of Downtown Cleveland, for two days and have a lot of activity to pack in. Tomorrow we will meet Ellen Pill from Wooster, about an hour’s drive south of the city. Ellen’s husband passed away from ALS not long ago and she has a very close friend in the community currently living with the disease. They have invited us to a barbeque brunch tomorrow. And we hope that one of the many newspapers, radio stations and local T.V. networks we have contacted will respond to us and, like NPR, offer their help with some publicity. As Dianne asks: why would anyone not want to help in the search for a cure for this devastating disease? (See video below.)
We’ve reached water. After thousands of miles of dry desert (Chicago notwithstanding) we have finally arrived at a coastline – of sorts. We are in Sandusky, a small town on the shore of Lake Erie. Only a few miles across the lake lies Detroit, and further east is Cleveland. It is not the prettiest part of America, but the water brings a sense of peace and proximity which I have missed throughout the journey.
I rode here from Bowling Green, some sixty miles along Route 6. Hitherto Route 6 had been a pleasant ride along a single-lane highway with ample room on the shoulder for a cyclist to plod along seamlessly. No such luck today: every sixth vehicle would be an ‘Oversized Load’ – typically a truck carrying some family’s motor home on the back. Often these trucks are accompanied by warning vehicles in front and behind: they are so fat they require two extra vehicles to warn the rest of the road’s users of their presence. These are the highway equivalent of obese, and no less disturbing to poor skinny cyclists on the side.
Forgive this tangent: yesterday I was sent a link to a video my girlfriend Ana made together with my Mum. You can see it below. (My Mum is the blonde lady at the beginning; Ana the brunette at the end; in between there is my stepfather Rod, the great photographer Christina Holmes, and Ben Leaver, one of my oldest friends from London.) It is perhaps trite to say, but it really does mean so much to have – and in this case be able to see – the support of your closest allies. This is a great cause and an enormous amount of fun; but it’s also bloody, bloody tough – physically and mentally. I am touched that my Mum thought of doing this and that Ana took the time out of her busy touring schedule in South Africa to make it. I miss them both tremendously, and what they say should inspire others – anyone else reading this – to donate $5 and Move For ALS with us. It is ALS to 27722!
In the last three days we have fled Illinois, muddled across Indiana and – as I write – are steaming through Ohio, the last of the Midwestern states. I still don’t understand why they call this area the Midwest (surely it should be the Mideast?), but it’s a funny old place. There are miles and miles of nothing-ness; just tall green fields interspersed with occasional houses and gas stations. Every thirty miles or so you hit a town – more frequently than in Wyoming, but the towns are still small enough to preserve the sense of having fallen off the face of the Earth.
It is this sense above all, I think, which really marks the experience of cycling across America. Cycling anywhere for 80-odd miles a day for two months would surely put the mind to the test; but there is a particular sense of isolation that accompanies this part of the world – the feeling that you have got stuck in time, that you will never get anywhere no matter how far you travel. I imagine this would remain true of driving across the North American continent as well, but there at least you know that if you really hit the gas you can get from West to East in three days. On a bike the only psychological comfort the mind can provide is that in a few miles you will, if you’re lucky, find a town big enough to find a hamburger and an onion ring.
Apart from Crosby, Stills, Nash and Young and the penchant for naming towns after great places or leaders (we rode through Waterloo and Napoleon today), I can’t see so far what distinguishes Ohio from Indiana or Illinois. The fields remain as green, the roads as flat and the menu choices as basic. (This perhaps explains the over-reliance on cycling footage in the videos.) It will change tomorrow once we hit Lake Erie at the town of Sandusky, and especially when we reach Cleveland the following day. It is much, much hotter here than in Wyoming, but the fatigue from the heat is off-set by the much easier terrain: today I rode 90 miles in about 7 hours, and arrived in a sweaty mess. Onward to the Lake!
After two very long and very boring/painful weeks, we were finally able to get back on the road again. I was cleared by the doctors yesterday to resume my normal activities with the exception of the physical ones and it definitely feels good. The day started off well except when we arrived at the rental car office in Chesterton, Indiana. They told us that no cars were available and that they were not aware of our reservations. After a bit of a scare and a call to the front office, they found our reservation, and gave us a a free upgrade with the only available car: a 2010 ferrari Enzo … not really …a 2010 Chrysler minivan in which I feel like a father of 8 – Auggie + eight (scary). Anyhow, it is great and we were able to get on the road.
It was what we used to call a light day: only 47 miles because Saul is still cycling, and I just film and follow in the comfortable front seat of my mini-van, like a worried French mother. It is definitely frustrating not to be able to cycle along, and it will take some getting used to although I am very thankful that I am still able to finish this journey and for that I must thank Project A.L.S. who have kept faith with us and allowed me to complete this epic journey. We finally arrived in Bremen, Indiana, where Saul brutalized me at mini-golf.
I will definitely try to start cycling a mile or two each day to be able to cycle into New York on July 25th.
After two frustrating weeks of inertia, we finally return to the road tomorrow morning. Auggie’s CPK (muscle protein) levels have returned to 300: the normal level is between 100 and 200, and only ten days ago he was registering 77,000. The rest has made all the difference.
Jeanne will drive us to a town called Chesterton, just over the Illinois/Indiana border. There Auggie will pick up a rental vehicle and follow me as I re-mount Henry VIII in Westville, a few miles south. The route has been slightly amended: instead of sticking further south through the Mid-West, I will pick up Route 6 and ride it straight through Indiana, Ohio and on to Cleveland. We will rest there next Friday, thence travelling along Lake Erie up to the town of Erie and across Pennsylvania also on Route 6. In the light of recent events we have deliberately given ourselves a lighter overall riding schedule – which also lends the virtue of more time to plan the big Finale on July 25th. Details to follow.
Meantime here’s what we’ve been up to in Chicago. We gatecrashed the annual fundraising event of the local ALS Association chapter, called ‘Holla For A Dolla.’ The ALS Association is a non-profit organization divided into different chapters; where Project A.L.S. are devoted exclusively to stem cell research, the ALS Association focuses more on patient support. Both ultimately strive to help the lives of people with ALS and their families. Thanks to the serendipitous co-incidence that we happened to be in town, the Chicago chapter extended very warm hospitality to us: they even gave us both gambling chips to the value of $100 (the party was in a casino.) Following in the footsteps of my great footballing nation, I managed to lose absolutely everything within five to seven minutes. At least we got to go to The Second City.
We’re back, Ladies and Gentlemen, and I’m delighted. For the last two weeks I’ve been like a restless border terrier, but I need chomp no more. On we move: across Indiana and Ohio, through Cleveland and edging ever closer to the Atlantic Coast. Thank you again to all those who have supported us through the testing last two weeks, and especially to Jeanne Follman who has housed us, fed us, watered us, and not incarcerated us. Move With Us, America!
I am more conscious of these considerations now than at any time in the past. In the grip of a neurological disorder, I am fast losing control of words even as my relationship with the world has been reduced to them. They still form with impeccable discipline and unreduced range in the silence of my thoughts—the view from inside is as rich as ever—but I can no longer convey them with ease. Vowel sounds and sibilant consonants slide out of my mouth, shapeless and inchoate even to my close collaborator. The vocal muscle, for sixty years my reliable alter ego, is failing. Communication, performance, assertion: these are now my weakest assets. Translating being into thought, thought into words, and words into communication will soon be beyond me and I shall be confined to the rhetorical landscape of my interior reflections.
This is the penultimate paragraph from Tony’s most recent reflection in The New York Review of Books, entitled “Words”. Like most of Tony’s writings, but especially this time, it stopped me in my tracks. Here is a man, an intellectual Titan, who has manipulated words for his entire life. His home, his car, his children’s educations, his wife’s wedding ring, his student’s adoration, his controversiality: they all come from his domination of language. (Yes, of course he is bloody clever and knows a lot too: but knowledge and intelligence without the ability to communicate them are as useful to a teacher as a fart to the constipated.) And now he is beginning to lose control over the movement of his tongue: perhaps the single remaining instrument with which Tony may remain – to me, if not to himself – unmistakably Tony.
It was only two years ago (or just over) that I graduated following my final semester class with Tony. He was commanding. Like no other teacher he could silence a room just by walking into it; bring it to life just by smiling at it; put the Fear of God into it just by frowning, and so on. The classroom was his army, and like all good Generals Tony ruled it with a firm fist. Earlier that semester I had to miss one of his classes to go on a family skiing holiday in Alberta. Diplomatically I tried to explain this to him – and it was not for any lack of diplomatic skill on my part that I received an extra 5-page paper the next day as a punishment for missing the class. At the time it was a bitter pill to swallow, but in retrospect I am sure I needed it. Missing so much as a minute of Tony’s class was unacceptable, because every minute was filled with value. It was the best class I ever took.
Before I flew out West to embark on this journey I spent some time wondering what physical state I would find Tony in upon our return. To be sure, his e-mails remain as lucid and fluid as ever; but, as anyone familiar with ALS knows, e-mails can belie the real power within the voice of their dictator. Of course I hope that Tony’s voice is at least functional for our Grandstand return to Brighton Beach – not least because he will join us with his family as we pedal onto a very iconic sports stadium in New York to draw the curtain down on the campaign two days later. (I don’t know how much I am allowed to say about this so consider that an appetite whetter.) I hope he may deliver a few words over a microphone. But ALS is a mean old bastard; it leaves uncertainty at every turn. Whatever Tony says or feels able to say, he should know that, cumulatively and qualitatively, his words have meant more to me than anyone else’s. There is value in everything he has ever said to me.
Please help us to reach $70,000 by the time we depart Chicago on Saturday morning and get ourselves back where we belong, on the road. The money goes to the foremost ALS-focused scientific research organization in the world. When treatments and a cure are found, they will come from this work.
