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Interview with Nancy Solo, Founder of CSSA,
conducted by Katherine Carrington of CINDA,
September 1999

Q.  When did you initially fall into your role as an activist?

A.  When I was diagnosed in September, 1996.  I was so angry that I had something that I'd never heard of, but I was also angry that none of my doctors had ever considered FMS as a possible diagnosis for me.  At that point, I decided that I wanted to do what I could to make it easier for people who were unaware of these conditions, as I had been, and were going through the same thing.

Q.  So, you’re a PWC?  When did you realize that you were ill and how long did it take to get a diagnosis?

A.  First, if you mean by PWC, 'person with CFS', no.  If you mean 'person with chronic illness', yes.  I have an FMS diagnosis, but I believe many of these chronic illnesses fall under the same umbrella.  I don't believe in the 'labels,’ I think we just manifest differently based on our own unique genetic make-up. 

A bit of history is required here.  I had known for most of my life that something was wrong.  I had been in therapy for over 25 years pre-diagnosis because of lack of self-esteem, phobias, anxiety, depression, etc., but I was pretty much in denial.  Although I knew that I didn't 'fit in', I was incredibly reluctant to admit to anxiety or depression because of the stigma, but also because of my father, who thought he was perfect.  In his opinion, people shouldn't need things like therapy because they should be able to control their own mind and body as he did.  He was part of my problem, because on an unconscious level, I believed it. 

I knew something was really wrong with me in early 1994, when I wasn't getting good sleep and feeling the affects of that.  My PCP and I thought it might be due to depression, so he prescribed a number of different anti-depressants.  I didn't see any benefit.  He suggested I see a psychopharmacologist in 1995.  After trying nine different anti-d's and finally finding one that worked, I was left with the same sleep problem.  That alerted me to the fact that it wasn’t depression that was causing the sleep dysfunction.  I had a sleep study done in May, 1996, which showed severe PLMS and a sleep efficiency of 21%.  I started taking Klonopin, and although it changed my sleep 'pattern', it had no affect on the 'quality'.  No medication seemed to help with the quality, and I tried very many.  In the summer of 1996, I was talking to a neighbor who mentioned the word 'fibromyalgia'.  I had never heard of it, but when she described the symptoms, it sure sounded like me.  I did a lot of research on the net and came to the conclusion that I had FMS.  It took some arm-twisting, but my PCP finally referred me to a rheumatologist who confirmed the diagnoses.

Q.  Some doctors would say that your FMS was/is a product of depression, and still yet another would say that your FMS was a product of some abuse that you received from your father at an early age, and that as you grew older, the depression and subsequent FMS diagnosis was only a manifestation of the early abuse.  How would you respond to that interesting theory?

A.  A really complex question.  It's my belief that there's a genetic predisposition for 'the crud,' and that signs can begin showing up at a very early age, as I believe they did with me.  I think my FMS is a result of many things, the first being the predisposition (I see similar symptoms in so many members of my family).  The emotional abuse, in my humble opinion, was the beginning of the cascade of 'triggers' that brought on changes in my biochemistry (I was always in fight-or-flight mode).  The early symptoms were the depression and anxiety, as well as gastrointestinal problems.  After many more years and many more triggers (which come in different forms, such as viruses, physical trauma, pathogens, toxins, anything that is an 'insult' to the system), I went "full-blown".  But when I got on the right anti-depressant for me, the alteration in my biochemistry lifted the depression and anxiety I'd lived with all of my life.  It turned me around 180 degrees!  After a couple of years, I was foolish enough to think that I didn't need it anymore.  WRONG!! 

After tapering off, I spiraled down into a major crash.  It sure didn't take me long to realize that I truly had a chemical imbalance that the anti-depressant helped correct.  As soon as I got back up to the previous dosage, the depression lifted again. 

So, in answer to your question, I don't believe that FMS is a product of depression or emotional abuse specifically.  I think it's a product of a cascade of triggers, which can be different in each of us.  In my case, I believe emotional abuse was the initial trigger.  In others, it could be a different trigger.  We have to be cognizant of the very many triggers that can start susceptible people on the road to full-blown onset.  We each manifest differently based on how our unique genetic make-up responds to the insults.  Depression is an inevitable by-product of living with 'the crud' due to the lifestyle changes we have to make.  It isn't easy seeing your future as a productive member of society go down the drain.  But to make depression or 'psychological problems' the cause of FMS or any of the other 'labels' is way off-base.  If anything, depression is a by-product of the illness.

Q.  How has your health played a role in your activism, both in a positive and negative way?

A.  In a positive way, I feel that I'm doing something, both for myself and for others, which can only help.  In a way, I guess you could say I've finally found my calling.  I've also found my spirituality and have learned to take each day as it comes, not predicting the future or lamenting the past.  I've learned to pace myself and do only what I think I can do on any given day.  Some days that's nothing, but that's okay.  Because I'm on Social Security Disability Insurance, I can work on advocacy and other issues on my schedule, which is a huge benefit.  I am also much more aware of interconnections, and even though I don't have a medical background, I've gained a lot of insight into the workings of the human brain and body. 

When I talk to people who call CSSA for information or support, the call is usually quite long and can be very draining.  However, these people are so thankful for whatever information I can give them that it gives me a 'rush'.  When I get comments about The Syndrome Sentinel, which have only been positive thus far, I get the same ‘rush'.  It's so rewarding to know that I've helped someone, even if it's only one person at a time.  

There are some negatives.  I've learned so much in the last three years about these conditions — their lack of credibility, visibility, funding, research, ad nauseum.  My energy level doesn't allow me to be more aggressive and beat down the doors of 'the powers that be'.  Having good research data and information sometimes makes me feel like I've got the weight of the world on my shoulders.  Those of us advocating for these illnesses run into brick walls all of the time, since those 'powers' don't (or won't) hear us.  Also, we have to advocate for ourselves, since no one else is doing so.  It's a real ‘Catch-22’ and very frustrating. 

Another side of the 'negative' coin is that I can become overwhelmed by some of the information and research (or lack thereof) I read.  I see an epidemic taking place.  I see a very sick planet.  I see dollar signs driving decisions that impact all of us.  I see Armageddon, and I often feel that there isn't much I can do about it, much as I try.  My passion won't allow me to quit, so I have to step back every once in a while and center myself so that I can maintain my sanity.

Q.  Nancy, you mention that you see a sick planet.  Is it that you think the planet is sick with FMS/CFIDS/MCS/GWS, or are you making reference to a general sickness, while a lack of regard for the earth and her bounties, as well as a lack of regard for humans and other species, take a back seat to greed and politics?

A.  I'm talking about both, and I also want to add that these conditions are not exclusive to the US.  This is a global problem.  More and more people are developing these illnesses at an alarming rate, as the CDC and NIH drag their feet.  Very recently the CDC revised their prevalence numbers on CFS, showing that the numbers are far greater than previously reported.  It's my opinion that the CDC's numbers are still far too low.  Based on the CDC's criteria for CFS, a person has to have had a certain number of the symptoms for six months before they can be diagnosed.  It’s three months for FMS, based on the American College of Rheumatology’s criteria.  What does that tell us?  To me, it says that by the time the criteria are met, people are already in a full-blown state.  How many people are waiting in the wings for that required time period to pass?

I also believe we have played (and continue to play) Russian roulette with our planet.  Since WWII, there's been an explosion of triggers: chemicals, toxins, biochemical warfare, vaccines, societal changes, the stress of instantaneous communication, and an increased focus on the almighty dollar.  People are exposed to things now that were never a part of our world.  We have holes in the ozone layer, smog, air that in many cases isn't fit to breathe, chemical dumps that have seeped toxins into our water, pesticides, antibiotics in animals to promote their growth, genetically engineered food which we aren't even told about, experimental vaccines mandated for our military personnel, and the list goes on and on.  This is all in the name of 'progress', but what is the price we're paying?  I think we're seeing it in the explosion of these illnesses.  The powers that be (government, military, big business, insurance companies) don't want to look at this, because the financial implications are staggering! So they close their eyes, deny their existence and go about business as usual.  There are such powerful lobbies on Capitol Hill that government no longer represents the people.  It's all about money, which is incredibly shortsighted since these illnesses are a drain on the economy now, and it can only get worse.  There will be fewer people paying into the system in the form of taxes and lost productivity, and more people will be taking from the system.  If there's a problem with social security now, hold onto your hats.

Q.  When did you first have the idea of starting your NPO, CSSA?

A.  As soon as I was diagnosed.

Q.  Just boom, it came to you?  Did you ponder it for a while or did you dive right in?

A.  It came to me 'boom', but I did ponder for a while, since I didn't have a total belief that I could make it happen.  That's where a career seminar I took came into play.  I was unemployed as a result of a corporate buy-out when I received the diagnoses, and I knew I couldn't go back to the 9 to 5 world.  How could I work if I couldn't even schedule interviews?  I never knew from one day to the next if I'd even be able to get out of bed!  I was pretty despondent about my situation at the time.  Advocacy was always in the back of my mind, but I knew I had to do something to bring in some income.  Initially I thought that creating CSSA could provide that source of income.  I couldn't have been more off-target.  That's not what it's about anymore — most of the money that's gone into the organization has been from my own savings. 

But there was a moment of discovery during the career seminar when we were asked to imagine a pool of water and focus on what came out of that water.  The image that came to me was a young girl rising out of the water with her arms outstretched toward me, pleading for help.  At that moment, CSSA became my goal and passion.  The leader of the group imbued us with the thought that if you believed in something strongly enough, you could make it happen.  He also taught us to 'expect nothing', because then you couldn't be disappointed.  I've found both of those to be true.  It's been a long and slow process, but I'm in it for the long haul.

Since that seminar, I've been awarded SSDI, which doesn't come close to meeting my expenses.  There have been times when I've thought about shutting down the newsletter, but the passion has kept it going.  If shutting down becomes a necessity, the web site and free pamphlets will continue to be available for as long as financially possible.

Q.  How did you go about getting CSSA up and running?

A.  I went to a workshop on setting up a non-profit, at which an attorney who specializes in non-profits was the main speaker.  After listening to what was involved, I realized that my lack of energy would make this a life-long project.  So I hired the guy.  He did most of the work, but I had to come up with the mission statement, statement of activities . . . . and the money.

Q.  Do you recommend hiring an attorney to everyone who wants to start an NPO?

A.  I think it's dependent on your energy level and your financial resources.  I've been lucky in that while I was working, I planned for my retirement, although I never expected it to come so soon.  If I hadn't had the financial resources to hire the attorney, I don't know that CSSA would have become a reality.  If the resources are there, yes, I'd recommend having a professional do the set-up.

Q.  Why did you think it was important to do?

A.  I wanted to do whatever I could to help those in the same position I had been in.  I also wanted to be a part of the solution, not a part of the problem. 

Q.  The solution being?

A.  Increased awareness, more research funding, and hopefully a cure in my lifetime.

Q.  What are the issues that you want to present in your newsletter?

A.  I want to present good information on research, coping, disability, etc. – the things that people need to know in order to be their own best advocate.  I also want to present stories offered by others in the same or similar conditions so that our readers can understand that they are NOT alone.  If they don't know that, they could well believe the problem is ‘all in their head', which is what so many naysayers want them to believe.  I want to present an alternative.

Q.  I've read several issues of your newsletter and I came away with a sense that you are trying to present the multifaceted face of FMS/CFIDS/MCS/GWS.  Is that your intention?

A.  Absolutely! We need information, we need support.  We also need to understand that, contrary to western medical philosophy, these illnesses are more than a broken bone that can be set and you're all better.  They're systemic and affect both the mind and the body.  In my view, the two can't be separated.  How we see our 'misfortune' directly affects how our bodies feel and how we cope.  That's not to say that western medicine doesn't have its place, as in the case of the anti-depressant that has helped me so much.  I do think, however, that being one's own 'health-care team leader' is extremely important in determining what's right for each of us.  I'm taking the best of both western and eastern medicine and making my own decisions about what's right for me, based on what my body tells me.  Eastern medicine is seen as 'alternative', whereas I believe that it complements western medicine.  It's not an 'either/or' situation.

Q.  Also, you mention that one of your goals is to inform your readers that they are not alone.  Do you remember the day that you realized you were not alone, and would you describe that day for us?

A.  I don't remember the specific day, but I do remember the circumstances.  I was sent for physical therapy, and there were 5 or 6 others in the 'FMS' rehab group.  I didn't really identify with them, but one of them told me of a mailing list on the net called ‘fibrom-l’.  I subbed to the list, and initially I lurked.  That was my awakening that there were many more like me out there, and it was the beginning of my learning curve.  I met so very many good friends on that list, and I still maintain contact with them, even though I'm not reading the list anymore.  I've had the good fortune to meet many of them in person, and it's been such a wonderful experience to spend time with people with a similar condition.  We understand each other's issues like no one else can.  We pace ourselves together.  We develop deep, lasting friendships, which initially were based on our illness, but we find ourselves focusing not so much on the illness but on our lives — the good and the bad.  We develop a new network of friends (not the fair weather kind who have no understanding of or patience with us).  I've been blessed in that I met my new life partner on that list.  There is life after diagnoses, and that's what I want to convey. 

Q.  How difficult was it for you to get your first newsletter published?

A.  Since I had lots of time to plan, it wasn't that difficult.  I have experience in desktop publishing, so that part was easy.  I had also lined up a roster of health-care contributors, which has changed somewhat over time.  However, I was venturing into unknown territory when I began looking for a printer, a mailing house, non-profit postage permit, and things as simple as what kind of paper stock I wanted to use.  It came together pretty well, but I was disappointed with the first issue because of things I didn't foresee: the poor print quality of hard copy from an inkjet rather than a laser printer, the paper stock not being the color I wanted, grayscales not coming out as intended.  I've made some changes since the first issue, the biggest being the purchase of a laser printer.

Q.  Aside from yourself, who has been your greatest ally or helpmate in making your newsletter and Web site a success?

A.  There have been so many!  I feel like I'm at the 'academy awards' and need a cheat sheet.<grin>  Friends I met on fibrom-l helped in brainstorming, building and maintaining the web site, giving advice, writing for the newsletter, distributing copies of the pamphlet and newsletter to their friends across the country, taking them to conferences, and the list goes on and on.  If I had to name just one person, however, it would be my new and future life partner, who has been so supportive and giving of himself, his time and his resources.  He's my current Webmaster, my printer, my sounding board and my soulmate.  This, in spite of blowing him off when he first offered to print the pamphlet over two years ago.  I didn't know him from Adam at that time, but I've come to know and love him.  Our illness doesn't define us.  We're still the people we were before 'the crud' hit.  If we just open ourselves up to the new opportunities we're presented, life can be very good.

Q.  How far have you come, in respect to content, from your first issue of the newsletter to your August 1999 issue?

A.  The content has evolved as I've learned more.  I think, though, that the best judge of content is the readership.  I keep hearing that the latest issue is better than the one before.  That, along with renewals into the third year of production, tells me that I'm doing something right.  I do wonder at times if I'll be able to continue to meet people's expectations.  So far, so good!

Q.  What are the expectations of your readership?

A.  I'm obviously making assumptions here, but I think they want to read about what I'd want to read about – the latest research, political/legal issues and developments, coping techniques, treatments – told in the words of the experts.  I don't presume to interpret the words of the experts, since I have my own biases.  I'd also want to read encouraging stories from other patients and their significant others, see some humor, ask some questions.  I choose articles by how they hit me, as a fellow traveler.

Q.  What are you most proud of?

A.  The fact that I've been able to accomplish as much as I have in order to help others in need.  CSSA is gaining more and more recognition, and health-care professionals are now offering to write for the newsletter.  I've developed quite a network of health-care professionals.

Q.  Would you care to give us a list of the health-care professionals that have contributed to your newsletter?

A.  Sure.  I have to start with Devin Starlanyl, who co-wrote FMS and MPS Complex: A Survival Manual.  I first met Devin via email on fibrom-l, and since then, we've become good friends.  Many people consider her books their bibles.  Others who have contributed are Daniel Clauw, MD; Muhammad Yunus, MD; David Bell, MD; Robert Jamison, PhD; Marcia Bedard, PhD; Joanne Borg-Stein, MD; Wesley Shankland, DDS, MS, PhD; Robert Miller, PhD; David Bander, Esq; Warren Nielson, PhD; Harvey Zarren, MD; Jacob Teitelbaum, MD; Ellen Slawsby, PhD; Professor Garth Nicolson; Barbara Comerford, Esq; Deborah Bier, MEd; Aaron Singleton, LMT/CHt; William Mueller, LicAc; Linda Squires, DC; Sue Hanks Singleton, Medical Intuitive; Kevin Gregg, DC; Joseph Mercola, DO; John Barnes, PT; and quite a few others.

Q.  What other roles do you play as an activist, other than CSSA and the newsletter?

A.  I'm currently collaborating with some of the more prominent advocacy organizations.  Our core group represents different perspectives, and we are working on projects that we hope will advance the cause.

Q.  Would you care to elaborate?

A.  At this time I'd rather not.  There's a lot of politics in the advocacy world, believe it or not, so much is kept confidential until the right time.  It's real world activity, where egos, one-upsmanship, sabotage, glory-seeking all take place.  In my opinion, there's no room for that kind of behavior when we're all looking at a common goal.  Fortunately none of what takes place in the group I work with.

Q.  What do you hope to achieve though both your newsletter and your other activities?

A.  A cure.

Q.  As an activist, how has your participation affected your life?

A.  I am very involved in and dedicated to advocacy.  I reach out to people more than I would have pre-diagnosis.  I've found my passion in what I do.  I've met some of the most wonderful people in the world, mostly via email but some in person.  I feel connected to something very important.  I feel a real purpose in my life.  I wouldn't have said that in my 'previous' life.  I guess I'd say that I've found a whole new life, and it's a good one!

Q.  In a strange way then, your diagnosis gave you the opportunity to find yourself and your place in the world.  Do you suggest that all PWC's try to both find their inner strength and a way to use that strength in a positive way?

A.  An unequivocal YES!  I might still be stuck back in my own dark little corner of the world had I not found out what was wrong with me and done as much as was under my control.  In my humble opinion, PWC's need to find that inner strength and put it to positive use.  Otherwise life has no meaning.  Having moderated fibrom-l, I'm only too aware of PWC's who wallow in pity parties and wait for someone else to do something.  Not only are they not helping themselves, they're not helping anyone else either.

Q.  Would you like to see more PWC's take a part in activism?  What kind of part?

A.  I think that anyone with 'the crud' has a responsibility to do as much as they can to promote more awareness and legitimacy.  Any progress is going to come from the bottom up, since we're getting nowhere from the top down.  Activism comes in many forms:  letter writing, support group activities, community activities, phone calls, and even just talking to other people.  If each person did as much as they could, rather than waiting for others to do it for them, the power in those numbers would be enormous.

Q.  Does one have to have an NPO or a newsletter to be a part of activism?

A.  Absolutely not!  Simple things like talking to others or placing pamphlets in public locations are activism.  We each have different levels of functioning, but everyone can be an advocate in one form or another. 

Q.  What would be your suggestion to a PWC who might be thinking of taking part in activism?

A.  Just do it!

 


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