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Doug Sharp and I dream big about the non-profit

February 18, 2012

Two future officers of the Central Pain Syndrome Foundation

Doug Sharp came to visit on Thursday. This was a very big deal, because Doug lives in an isolated cabin way out in Comstock, Wisconsin, and we had never met in person before.  I’d gotten to know Doug a few years ago, when I was researching neuroplasticity after reading Norman Doidge’s book, The Brain That Changes Itself. My hope was that neuroplastic techniques could be used to rewire the brain to eliminate CPS. Imagine my surprise when I googled “neuroplasticity,” “Doidge,” and “CPS,” and found that there was actually a blog entry, written by a man who had already contacted Dr. Doidge about the same topic! This man, Doug Sharp, has actually developed exercises that had reversed his CPS pain. I left him a note on the blog; we befriended each other on Facebook. I got to know a charming, intelligent, gentle, humorous man of wide-ranging interests. Doug had created a very early and successful computer game, “Chipwits“, as well as a hugely successful 1986 cinematic-style videogame, “King of Chicago.” He’d been working for Microsoft in their Virtual Realities division, when he was struck down by a return of his epilepsy. It hit him with all the weight and cleaving power of a claymore. Doug had to stop working, and essentially retire from the world.

I had shared with Doug the idea of forming a CPS non-profit, and he was one of the idea’s most fervent supporters. He, like I, see its creation as a personal vocation, and quite possibly the most important thing that we will ever accomplish in our lives. He also has led large and extremely lucrative projects from conception to pay-off, so he knows how big such an organization can get.  Doug and I are tremendously moved and motivated by the fact that the CPS Foundation can bring help and hope to millions.

Doug had flown out to the Philadelphia region to be with his family for his 60th birthday, and I was extremely fortunate to get to spend a day of his week with him. We both realized that this meeting was the very first time that we’d actually knowingly met someone else with CPS, It was actually a *relief* to be able to just be myself, talking about pain levels, drug regimens, ways we use to relieve pain, and even the pace at which we had to work and how much work we could do in a day. CPS is not a disease that you can see in a person, leading to the “But you look so well!” syndrome that every person with “invisible” disease faces. But CPS also sequesters us from others, keeping us housebound. Traveling is difficult, and requires days of rest afterwards. Very often, changes in humidity, barometric pressure, and altitude cause us immense distress. Even the stress of simply getting somewhere else – dealing with crowds, steps, noises, lights, and bustle, raises our pain levels dramatically. Almost all of us are very sensitive to temperatures outside a very narrow range, from about 65 to 80 degrees. Anything higher or lower, and we are freezing or fainting from the heat. (The medical textbooks refer to this as “temperature disregulation.”) It’s a great sorrow to those of us who are gregarious and love to be active and involved in our communities. I myself cannot express the social changes that it has wrought in my life.  Isolation breeds depression in me. But the pain of isolation that all of us CPSers feel is a topic worthy of its own entry.

Doug and I spent time getting to know each other’s backgrounds, which is odd considering how well we know each other after two or three years of Facebook posts. He, like me, is a prolific “linker,” and I always enjoy seeing what he’s dredged up from his own interests (even if I do not always find tremendous appeal in his more esoteric musical selections.) We also did get a lot of work and discussion done on the organization. I think that all of us agree on its purpose:

  • 1.)     to educate the general public about CPS, its many causes, its current state of treatments, and its need for  a cure;
  • 2.)      to educate the medical profession about CPS, so thatthey recognize it when patients seek them out for help;
  • 3.)     to raise monies from both public and private sources for our educational drives, and to fund the research needed for both treatments and a cure.

Because of Doug’s work in the IT and computer gaming industry for decades before his illness, he has many very wealthy connections on the West Coast . He will be moving to Seattle in the Spring, which will bring him even closer to his sources. He has volunteered to reach out to some of the Microsoft millionaires he knows, to solicit start-up funds for the organization.

Doug is also a writer, He’s written a science fiction novel, “Hel’s Bet,” which is currently being shopped out to agents (after almost being picked up by Angry Robot during their annual New Authors competition). He has volunteered to be “Press Secretary,” with the help of his aide. His first task will be drafting a solicitation letter to raise start-up funds.

 Both Doug and I see that the future of the Foundation could be huge, because of the millions of people that suffer from this. But there is also the fact that the disease itself is “marketable.” It seizes the imagination of those who do NOT have it, because it is so unarguably horrible and, quite frankly,  a worse “monster” than could ever be thought up by Hollywood. (Imagine an alien virus that laid waste to its victims the way that CPS does, for instance.) Neuroscience and the study of brain neuroplasticity also make this disease potentially a *very* popular research subject, once doctors truly begin to know about it.

 What this means is that the Foundation could grow to be in charge of millions of dollars worth of donations in twn years. Any strategic plan that we devise should include this likelihood.

Some of the things that we brainstormed:

  •           family and caretaker “training centers.”One of Doug’s friends developed a very successful program called “Sibshops,”  for training and education of the siblings of special needs children. Doug has volunteered to reach out to the SibShops founder, so that we can get pointers on how to create similar “training programs” for the families and caretakers of CPS patients. I know that there are times that I wish I could have my husband or my son *feel* what I am feeling, even for 15 minutes, if it would give them some understanding. Of course, even that wouldn’t be enough, because they would always know that the pain would be gone at the end of 15 minutes. It’s the endlessness of CPS that they still wouldn’t understand. But it would still be useful for all of our caretakers, no matter how sympathetic they are, to get some training.
  •           Creating a network of regional speakers – actual CPS patients who would be able to go to hospitals or nursing homes or other locations and give presentations about CPS. The Foundation would provide a short script explaining the basic points, a video to show, and then the presenter could open the floor to questions. Presenters in this program could also rely on the Foundation for support for local or regional television or radio  interviews and segments. I know that a lot of us would probably love the chance to speak in public about CPS – I know that I certainly look forward to it. However, traveling long distances is perhaps difficult for a lot of us. A Regional Speakers program would work to give a lot of us a chance to be the “public face” of CPS, while at the same time helping to keep us from feeling dreadful.
  •           Creating a whole series of videos. Aside from the “messages from hell” videos, which are conceived as videos of individuals talking about their conditions, there are plenty of others that we can produce: what CPS is, the present state of treatments, etc. I especially would like to see a video of short clips: first, of our members telling the camera what caused their lesion: a stroke, MS, epilepsy, Parkinson’s, a fall, a surfing accident, a car accident, a tumor, a syrinx, a botched spinal puncture, a botched surgical procedure, electrocution, a closed head injury from an IED explosion, playing football, playing hockey, professional boxing… – then moving into brief snippets of them describing what their pain feels like – and then moving into how doctors responded, and what sort of treatments they have found.
  •           Pairing CPS patients with helpers and aides
  •           Creating CPS meet-ups and retreats so that we can meet others who understand exactly what we are going through.
  •         Besides funding research on direct treatments for CPS, also funding projects that can actually give provable measurements of pain levels. As neuroimaging progresses, there will be techniques that actually let pain levels be “seen.” These sorts of technologies are necessary for us to get proper treatment.

         We both recognize that the Foundation is going to end up with a Board of Trustees who are not involved in the day-to-day operations of the paid staff. It would be wonderful if the Foundation can end up employing CPS patients themselves (at least those who can physically stand a working day, and have the necessary skills.)

Personally, it was tremendously invigorating to spend the day with someone who shares my vision of this organization as a major force in improving the lives of millions of people suffering from the worst pain in the world. Of course, it is by no means a purely philanthropic enterprise for either of us. We both want a cure, and in our lifetimes. For me, of course, the issue is whether I would even be able to afford it, since I have no health insurance, and am unisurable anyway. But then I try to envision a brighter future, of returned health and renewed opportunities to travel, to spend time with friends,to hike in the forests, to swim in the oceans, to go to museums, to cultural events, even to the opera once more. As Verdi wrote in the beautiful duet at the end of La Traviata:

Pleasure shall banish all thought of sorrow, 
While all the future new joys will pour. 
Yes pleasure shall banish all thought of past sorrow,
To my pale cheek, to my pale cheek the bloom restore.

 Of course, I do not intend to keel over at the end of the scene, the way Violetta does.
One Comment leave one →
  1. March 2, 2012 12:44 PM

    Thanks so much for this, Louise. I was too under the weather to even notice it when you wrote it. Glad I looked at your blog to catch up today!

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