“Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future.” – Jerome Groopman, The Anatomy of Hope
In April of 1997, when I was a junior in college, I woke up one morning, went to the bathroom, tried to sit down on the toilet, and instead fell on the floor. Later that afternoon, the doctor at the Student Health Center told me I had Vertigo, a viral infection of the inner ear. What I didn’t know then was that I was experiencing the first in more than a decade of symptomatic episodes caused by Multiple Sclerosis. The Vertigo – which gave me the spins as if I were on my third bottle of wine and a dizziness that was nearly unbearable – lasted about two weeks. But even when the spins had subsided, I was still spun. My life, without asking my permission, had just taken an unexpected turn. That morning – though I certainly didn’t know it then – was the beginning of a decade-plug healing journey that has brought me to this sentence, on this blog, today.
I wasn’t diagnosed with MS until July of 2007, exactly a decade later. During that time I would be sick for a while, and then okay for a while, then sick again, then okay, then sick. It was a maddening and mysterious roller coaster for me – perplexing and frustrating for those around me. During those ten years I lost faith in the dogma of doctors and sought healing from places like diet, acupuncture, books, chiropractors, and more. When I was finally diagnosed, though I was in some ways relieved and comforted to have “solved” the mystery, I quickly realized that suddenly belonging to a club called multiple sclerosis didn’t mean I would be healing any faster. In fact, I discovered that the culture of MS wasn’t about healing at all, it was about “managing.” This is not exclusive to multiple sclerosis, of course – it characterizes most of the Western medicine paradigm. Symptoms are managed with drugs, but the root cause of the imbalance is never addressed.
In my visits with various neurologists, not one even mentioned the possibility of healing from this illness. The MS brochure published by my doctor’s office had photos of people smiling in wheelchairs. I was told there were many drugs from which to choose, though none, it seemed, could reliably prevent the progress or even stop flare-ups. At no point was diet discussed with me, except when I brought it up and was told patronizingly that “I could try that for a little while.” The link between stress and symptoms was mentioned as a one-sentence afterthought. Acupuncture wasn’t completely dismissed, but it wasn’t endorsed either, and at best it was seen as complementary to the standard drug regimen. When I suggested to one particular neurologist recently that I was likely going to continue treating my illness with the diet and supplement regimen I had been on, he drew me a picture. It contained three lines, all sloping downward at different trajectories, representing my three potential futures (according to him) depending on at what point I decided to take the medication. On my way home, I marveled at how many patients those three downward-sloping lines had taken hope away from. I wondered how many patients couldn’t even consider the possibility that healing was possible with a picture like that drawn for them by a man of such authority.
I learned that the culture of MS had amazingly low standards and expectations for what was possible, and I would have to travel outside that paradigm if I had any hope of healing.
Fortunately, and poignantly, when I got the call confirming my MS diagnosis in 2007 I was sitting in front of a master reality creator, Dr. Joseph Riggio. Joseph is a cognitive scientist with deep expertise in transformational communication, decision-making and non-ordinary cognition. He is the architect and designer of the Mythogenic Self™ Process and an international figure in the professional NLP™ and hypnosis communities. I had been studying with Joseph for several years, achieving many of my own breakthroughs as well as learning the skills to facilitate others in beginning from how they are when they’re at their best. I had gone for my first MRI several days prior to leaving for the training in California with Joseph.
When the call came, I was extremely distraught, and Joseph brought me outside to speak to me privately. We were sitting on lounge chairs next to the pool in the courtyard of the hotel where the training was being held. I remember watching the small blue ripples in the pool and feeling the warm sun on my shoulders and wondering how the nightmare I was living could be taking place on such a beautiful California afternoon. It was then that Joseph said something that would become the guiding arc for how I dealt with my illness from that moment forward. He said, “You have a crucial choice to make and you need to make it now. You’re either going to be a victim or you’re going to take control. Most people make this choice upon their diagnosis and don’t ever remake it, and the path they’ve chosen will be obvious to anyone who knows them. It will influence how sick you get, and it will determine the quality of the life you lead. So, which is it going to be?”
I will never forget that moment, because it was my own call to adventure. And I did heed the call. I chose to take control, even though, in that moment, I had no idea what that meant. Today, I have a clearer idea, and I’ve made it my life’s work to be a conduit for the wisdom of healers everywhere and anywhere, from various disciplines, with various backgrounds and interests and methodologies. Additionally, I’ve chosen to use my training with Dr. Riggio to work exclusively with those who have Multiple Sclerosis or other chronic illnesses. I feel blessed to bring to my clients a rather unusual and valuable coupling – I have both the first-hand experience of living with a chronic illness AND the skills to consistently operate from a position in which I am at my best and ANYTHING is possible, and the skills necessary to teach others to do the same.
This blog/website is my effort to learn and discover all that I can about what it means to not just be symptom-free, but to be robustly, vibrantly healthy. This site will be a source of content – both audio, video, and written – to support you and give you the resources to take control of your illness and your life, and to learn to operate from a place of possibility…all the time.
Warmly,
Karen Gordon
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Karen Gordon is the founder of www.theselfhealingcoach.com. She is also the founder and President of Karenscape Photography, an award-winning wedding photojournalism studio based in New York and Austin, TX. and The Bump Studio, a newborn, birth, and maternity photography studio.
Hi Karen, I stumbled upon you searching for the hero’s journey of self-healing. Lo and behold you and I both use “self-healing coach” in our online activity.
Do you also use the reference book Messages from the Body by Michael lincoln? I use it frequently. Seven more books exist cross-referencing issues with illnesses. Gift eBook on all of them is called The Meaning of Illness Is Now an Open Book.
If you like what you see at HealingToolbox.org, a fun thing for us to do would be to have a conversation about a telecall or Google+ video chat recorded to YouTube on self-healing. Give me a call if you wish to connect 310-280-1176,
Dear Karen,
I was wondering if you had any experience with or knew people that had recovered from symptoms like muscle stiffness and weakness. This last attack froze my feet and calf up. I think that it might be clearing up, hoping for recovery and doing Anne’s diet.
Sincerely,
Maia Marie
Hi Karen,
I have been a “Silent” follower for about a year now. My husband got me all set up with a Webcam so that I can join the Wednesday evening Support Group, I would like to visit this week but I am not a talker at all I think it would take me a couple of weeks to get to know the group before I would feel comfortable. If it is okay I would like to be a silent supporter for a few weeks.
Thank you
Julie
Hi Karen
Thanks for setting up such an informative and encouraging website. I was diagnosed with MS two years ago and have been on a special diet for about 1.5 years. It is definitely working and when I’m completely disciplined, I feel amazing. I’m hoping that the diet will slow down the progress of the disease and not just work on the symptoms. Do you believe that if you start this way of eating in the early days of MS that you have a far better prognosis for the rest of yor life?
I’m keen to know how you feel about LDN. Do you think that it can really work hand in hand with diet and give you that extra boost to stay well?
Thanks for your time!
Kim
hi kim. thanks for writing! yes, i do absolutely believe that starting on this diet early can lead to a better prognosis in the long run. i believe it can lead to complete recovery. i take LDN and have been taking it since 2008. it’s helped me with my fatigue and i continue to feel good on it, though i did have a major flare-up in 2010. i don’t know if it’s working or not, but i continue to take it as an insurance policy. i have heard people say different things about it – i think its effectiveness varies from person to person. thanks so much for taking the time to comment.
wishing you well,
karen
Hi Karen!
I LOVE your blog!! Your writing is just beautiful. Thank you for not pretending that women with MS are only sick saints suffering with a disabling chronic illness. I find that living life as a vibrant, sensual woman gives me the get-up-and- go I need to stay positive and do what’s necessary.
I’m at an interesting crossroads. I’ve been, happily, without DMD’s for about 5 yrs now. Currently, I’m experiencing a symptom that scares the willies out of me – tremors. So, back to the neuro I go, maybe to consider another IV DMD.
Scared and demoralized,
Jodi
(with a tiny girl crush -via Jenna Marbles- on you)
No worries- totally straight and involved. Mostly a great feeling of admiration!!
haha jodi, i love it! i will gladly receive your girl crush!
i’m so happy you are down with my vibe and enjoying my blog. as for your crossroads, i totally understand your feeling of being scared and demoralized. i’ve been there. in fact, most of my interactions with western medicine leave me feeling that way. remember that healing MS is a roller coaster, not a steady uphill climb. don’t forget that you are still healing, even if you’ve hit a bump in the road. in case you didn’t read these two posts yet, please do, it’s relevant to what you’re going through right now: http://www.theselfhealingcoach.com/2012/08/26/doctors-not-gods-the-danger-of-medical-dogma/ and http://www.theselfhealingcoach.com/2012/09/07/the-black-magic-that-could-be-keeping-you-sick/
i’ve had very dark moments when i’ve considered seriously going on the drugs but never did, and still got better again. get really still with yourself and listen to the answers you get about what is right for you. don’t be swayed by anyone else’s fear or opinion. keep in touch! warmly, karen
Hi Karen,
I love your approach. In 1985 when I was running a national healthcare advertising agency and living in a workaholic stupor, I was diagnosed with MS and told I’d spend the rest of my life in a wheelchair. I was BLOCKED. I had to bust my way out of thoughts and emotions that were killing me. I did that and I’ve been symptom free since 1990. Now I devote my life to helping others become BLOCKBUSTERS. You are a BLOCKBUSTER and I applaud you for that. It’s what we focus on that determines what we get — whether it’s our words, our diet, or our beliefs they become the fuel to run our lives. There is nothing about my life today that is the same as it was in my year of diagnosis. I’m running on HEALING fuel and reprogramming my body to be healthy. Let’s stay in touch.
that’s awesome judith. i love it. it’s nice to meet a fellow warrior on the path.
Hi!
My name is Linda and I got a MS diagnos since 7th december -95. I have managed to be without symtoms 3 times. I did a lot of meditation, got intressted about what to eat, started with kinesiologi, noticed that it was very important which pecple that were around me. Iam working for my assistant company and do a blog about my life. http://www.lunacare.se Please keep in touch!
thanks for adding this lauren. yes, george jelinek’s work is tremendous and his book has been an excellent source of information for me. i definitely recommend that people check out the website, which is full of information and yes, a great community!
I just wanted to add that everyone should visit the website “Overcoming Multiple Sclerosis”. George Jenelik an Australian physician who has MS has written this book and developed this website. Being a doctor, he has researched MS and has access to medical information and journals that we may not have and he understands the terminology. He has done the work for us and has developed a lifestyle plan to help fight MS. Its worth a look and then it will take some determination, but there is a forum on the website and the people there are very intelligent and supportive and will help you every step of the way. GOOD LUCK!!
Hi Karen,
I am so glad to here about your successes in overcoming MS. I was only diagnosed 4 months ago in May and now have two large spinal lesions and one small brain lesion. I’m a 45 year old male and my symptoms have never gone away, just got worse in the 3 attacks. I understand that I am in the higest risk category for prognosis. I suspect I have PRMS.
Anyway, I just started on a vegan diet with omega3 supplements a week ago and already ( possibly a coincidence) but I am walking the best that I have done so in 4 months. The frustating thing is that my doctor, neurologist, MS society didn’t mention anything about diet. They all say there is no cause and no cure – so just take what you’re given and make the best of your life.
I was wondering, now that you’re better, do you still have symptoms? I can imagine that you’ve still got them, just stopped the progression in disability by changing your lifestyle.
Anyway, I like the way you write and look forward to reading more.
Blessings
Alex
Hi all! I’m not sure exactly how this works, but I just wanted to share my story. I am currently 20 and have been diagnosed with m.s. since I was 15. I initially had vertigo and after a long series of testing, the doctor reached a diagnosis. I had no idea what M.S even was I was scared. My parents were amazing and truly got me through the initial challenge. Since then, I have taken Avonex, Avonex in conjunction with IVIG, Tysabri, Copaxone, and now Tysabri again. I’ve had about four relapses in five years, one about a week ago, but I’m honestly doing very well. Some people ask me if I struggle or hate it, but I’m honestly blessed. I have learned so much being diagnosed with something so serious at such a young age. I’m currently seeing Doctor Williams in New York who works under Dr. Sadik. He is fabulous and has helped me far beyond the average responsibility. Through having M.S., I have met so many fabulous people and always have a topic to write about for “choose your own topic” papers at school. I’m majoring in occupational therapy at Alvernia University in Reading, Pennsylvania and am so excited to work with patients and give hope to those who have lost it. If I had to choose a disease, I would choose this one because I have been blessed with the opportunity to still live a normal life!
Just wanted to add that my biggest complaint is I can not be a bone marrow donor!
hi sarah. you have a wonderful attitude, which i am confident will serve you very well during the course of your life, not just in regards to your illness, but everything. thanks so much for taking the time to reach out. wishing you all the best.
karen
Hi Karen,
I happened upon your site through a student of mine. I am an acupuncturist, massage therapist and Chinese herbalist in NY and found your story and site to be extremely encouraging. I have a couple of patients with MS and a handful of friends/family with the disease as well. All are at varying degrees of illness. Thanks for actively getting the word out there that alternative therapies are so important in an integrated medical approach. I will be posting your web info (with your permission, of course) on my facebook and forwarding to family/friends/patients to help them on their road to healing.
Wishing you good health!
Daryl (like Hannah not Strawberry
hi daryl. thank you so much for writing. i am so happy you are finding my site useful. of course feel free to share it with whoever you like. i really appreciate you taking the time to get in touch.
warmly,
karen
Karen, these pictures of you on this site are smokin’!
Whoever took them obviously really sees you.
thank you mike!
I am interested to know if you or any of your colleagues/associates are familiar with the neuro condition called “ataxia”. Some symptoms are similar to MS, some like Parkinsons, some like ALS. Just wondering if any of what you do with MS could have a positive effect on ataxia too. I am also looking to head in the same direction, as my insistance on thinking out of the box is taking me further and further from traditional medicine. I aam already beating odds, and plan to continue doing so.
hi jonas. i don’t know much about ataxia. that said, the lifestyle changes that i endorse are designed to heal the root causes of disease and put the body back in balance. which is to say it would likely benefit you at least to some degree. you may want to contact ann boroch and find out what she can do for you. http://www.annboroch.com. tell her i sent you!
karen
Karen – a patient of mine was recently diagnosed with MS. If you don’t mind, I may forward your blog to her, as she may find some peace in reading about another strong, successful woman sharing in her journey
Stace
I’d be honored. thank you stacey!
Hello Karen
Your story is quite something. I really relate to u/any of us making that choice about being a victim or taking control. I guess I haven’t yet come strongly enough on the latter! But my condition is different to yours: mine is to do with depression & anxiety. So I am wondering how to swing what’s helped u to my situation. I know I don’t exercise enough and eating has dropped off. I’m on antidepressants as I wasn’t successful at managing without (I tried for a long time; and suicidal thoughts made me realise I had to do something). I hope u can make some helpful suggestions. All the best in your work. Shanti in Australia
Hi, Karen. I posted a note to the bit with the cookie monster face on it! Then I remembered that you had replied to my post here. I, too, am doing other things besides the diet. I have a naturopathic doc, among others, that I’ve been seeing since I was diagnosed (20 years ago) He’s fantastic, but for the last 10 years, we’ve been hitting brick walls. I’ve tried lots of other treatments as well, and it seems that when I’m very meticulous about my diet, that’s the only time I see positive results. So here I am, trying it again, hell-bent on making it a lifestyle change for good this time. Quite a challenge to get through the nasty symptom tunnel to see the light at the end. Still dark here, but I’m praying for daylight!
Thanks again for this wonderful website! BTW, the photo of you above is gorgeous!
sally
Hi, Karen. I just typed a great email to you and my computer erased it! Argh!!! Anyway, I was diagnosed with MS 20 years ago when I was 18. I’ve gone the alternative route for a long time with some wonderful results and some not so wonderful. (At this point, I’m walking very poorly with a cane or walker.) I bought Ann Boroch’s book Healing MS a couple of years ago, and it’s just starting to sink in. I’ve had a skin fungus off and on for approx. 25 years, so I KNOW I’ve got a fungal overgrowth going on! I’ve seen some great results on my journey when I’ve paid close attention to my diet for an extended period. I wonder, “How many times will that have to happen before I realize that I need to make this type of diet a lifestyle change?!” So, I’ve been following (ALMOST religiously) Ann’s recommendations for 3 months. In late January, I saw a 24 hour period of a semi-remission that was FABULOUS, but I’ve gone downhill ever since
It’s hard to keep it up without any encouragement (in the form of even just tiny physical improvements) — I’m sure you know what I’m talking about. So I emailed Ann the other day to ask if she knew of some online support that I could utilize. She sent me your web address. I am 100% certain that if I can keep up the “good work” for long enough, I will see some marked differences. I’ve seen it happen in me before! It’s just hard to get to “long enough”… I’m glad that you have this lovely website to act as, if nothing else, a much needed sounding board! Thank you! Keep up the marvelous work. 
–sally
hi sally! thank you so much for your note. i have been on ann’s regimen strictly for almost three years now and i’ve had tremendous results. i can reassure you that after about six months straight, your body will begin to reset to a cleaner and healthier way of being, and from then on, when you go off track you will actually find yourself yearning to return to your diet. eating this way has become my default diet – what my body expects – and when i begin to stray in times of stress or cultural indulgence, like the holidays, my body lets me know exactly how it feels about that (it’s not good!).
i also want you to know that ann’s diet is not the only change i made. it helped tremendously and is an essential part of healing, but i also had thorough food allergy testing done which showed i was severely allergic to butter and eggs (of which i was eating lots). so i stopped that and improved. i also found that i needed to increase my thyroid medication. i also began taking LDN. all these things combined have created massive improvement for me, so make sure you continue to research and experiment. the diet is crucial but not always the only answer.
please let me know how it goes!
warmly,
karen
Gracias.
Hello Karen,
My sister was diagnosed with MS almost 2 years ago. She is 24 now.
Initially, we were told it is incurable and so forth, but we implemented Parasite, kidney, liver, bowel and heavy metal cleanses according to Dr. Hulda Clark and Ann Boroch.She has been symptom free for nearly a year now.But, from what you said I understand that not having symptoms doesn’t necessarily mean that MS might be gone.Or that her health in general is better?How tricky!Let me ask you-did you have any simptoms during that 16 year period during which you started your family?And are you familiar with Hulda Clark’s research?
Sincerely,
Lina
hi lina. just to clarify, the comment above yours by a woman named karen is not the same karen as me. if your sister has the RRMS then yes, it can be remission and come back. however, that should not discourage you at all. as far as i’m concerned working with ann is perhaps the best thing your sister can do. you want to stack as many things in your sister’s favor as possible, so detoxing and strengthening her system are excellent ways to get her body strong and clean and balanced, which makes the likelihood of exacerbations much less. i don’t know any more than you do about the woman’s story above but i know she said she ignored her MS for many years which leads me to believe that she wasn’t on a strict diet as per ann’s recommendation and mine, and that she wasn’t taking supplements and detoxifying. if your sister feels good and is not symptomatic, or only mildly so, that’s great news. MS is a mysterious disease and there are no guarantees, but continuing to learn about how your sister can stay strong and healthy is an excellent strategy. i’m not familiar with hulda clark’s research but i’ve been working with ann for several years. i wish you and your sister excellent health!
warmly,
karen
I think it makes a lot of sense to be positive and to take control of MS. However, I have to say that my experience has been as follows: I had my first symptoms when I was 22 years old. I then spent the next 16 years feeling well, marrying, having a family and generally leading a very happy life. I pretty much ignored the fact that I had MS. Out of the blue one day, I had a massive attack which left me unable to walk for a few days until steroid treatment appeared to give me a ‘magic’ cure. Again I just went on with my life but little by little I gradually got worse and worse going from being able to play tennis, slowing down to play golf, only managing short walks with the dog and now I am still walking but only for very short distances. Any more than 20 yards and I need a scooter or wheelchair. I’m now on a very strict diet and go to the gym to exercise as much as possible within my limitations so am still trying to keep as well as I can. The point of the story is that this horrible illness is getting me despite the fact that I spent most of my adult life ignoring it and being positive. Now I’m 54 and it’s increasingly difficult to see myself leading anything but this limiting life where I can’t scoop my gorgeous grandson up in my arms and walk round the room with him or walk to the train station to go and visit a friend. I have slipped into secondary progressive MS despite all my best efforts. Without being too negative, just because someone with MS feels fit and well, doesn’t mean to say the illness isn’t going to jump up and bite them in the backside in the future.
All the best, Karen
Hi karen, I found your story very interesting. I am 56 and have suspected that I had MS since I was 23. Initially, no testing was done, as there wasn’t much in the 70′s except for a spinal. I have not had a spinal done, so my doctors say that they cannot make a definitive diagnosis. I have had several MRIs though, and the brain MRI’s shows “a couple of white spots” that my neuro said could be due to my age (I was about 47 when I had those done). For all these years, I have tried to eat right, exercise and keep stress away as much as possible (although I don’t think I’ve been very successful with that.) 2 years ago, my 30 yo son experienced optic neurotis and was diagnosed with MS (through MRI) a year ago. Much to my dismay, he started taking Rebif and has done OK so far. However, I wish that I could convince him otherwise. It looks like you are in NY. My son lives in Chicago. Do you have knowledge of any practitioners in Chicago that he might see to help with his MS (even though he doesn’t think he needs help at this time — he’s very scientific minded). Thanks for your thoughts. Pam
I would recommend your son in Chicago look at the website of Dr. Mercola. http://www.drmercola.com I do not know if he sees patients now, he may no longer, however I think he would be a good resource and has articles on his site to support your position.
I am 52, diagnosed with MS in 1995 and after changing my diet and lifestyle, doing a lot for 6 months I have been symptom free and have never taken any drugs suggested. I lead a very active life, have a 10 year old, etc.
Mary C., in Cary, NC