The Continental Divide and The Boomerang

by Maria Theresa Maggi on February 10, 2016

The Continental Divide and The Boomerang by MTM photo 1

Shortly after moving to Portland, I began a quest to get an appointment at Oregon Health and Sciences University Neurology Department. I knew them as the department where Dr. Roy Swank had once been chair and also as the place that had conducted a study of patients with MS on the McDougall Diet. I had corresponded in e-mail briefly with one of the doctors involved in the study while it was ongoing in an effort to tell her about my blog. I called hoping to find a way to see her as a patient.

The process for getting an appointment involved sending my medical records and waiting for a review process to take place. I began that process, and then I waited. After several weeks I called to inquire, only to discover only one page of my records had arrived. The rest had been lost or had not gone through the fax machine and on to the right person.

I started the process over again, with a different fax number. This time I was told the review process would take a couple of weeks and I would be notified. After 3 weeks I called again and it seemed that they were ready to set up an appointment with me, but it wasn’t with the neurologist I had hoped to see. I was told she was no longer accepting new patients.

When the day for my appointment came, Mike drove me to the large off-campus building down near the Southwest waterfront where the MS Center is located. When I got off the elevator, I found myself turning into a reception room with plate glass windows that overlooked a panoramic view of the city. And within that view was the track for the Portland Ariel Tram, which runs about every six minutes nearly every day of the week, providing whoever wishes to ride it with a scenic ride over downtown Portland.

It was a spectacular opening to what I had hoped would be at least a somewhat spectacular appointment. It did turn out to be a rather life-changing appointment, but not in the way I had originally hoped.

First of all, when I checked in at the desk, I discovered there was a very extensive patient intake form that was supposed to have been sent to me in the mail, but which I never received. My head still reeling from finding the elevator and the actual office while Mike looked for parking, I sat down and tried to compose myself to answer many involved questions. But I had hardly been sitting a minute when I was called in to begin my appointment.

I am not good at answering questions on the spot about myself that I haven’t had time to think about. As I fumbled with the paperwork, my coat, and Romeo’s dog leash, I comforted myself with the fact that at least some of my history was now on the record with them.

But when the neurologist came in to see me, she informed me in a tone of almost irritation that there was only one page of medical records for me. This would have been the one appointment I had in 2014 after switching to a family practice in Moscow I could walk to from my new house there, since my long-time doctor had retired a couple of years before that, and the nurse practitioner he had recommended I see had also left. None of the records I had asked for in person over the phone had ever been received on the OHSU end and no one had bothered to tell me. The neurologist basically saw me in a medical record vacuum. There was no record of my original MRI, which is the only one I have ever had, because nearly 20 years ago it wasn’t general practice for patients with MS to have routine MRI’s, and it wasn’t something I could afford regularly anyway. Much of the cost of the original one was not covered by my insurance, and was eventually forgiven. It was a kinder, gentler time.

So without a properly filled out patient intake form or a history of my last 20 years with MS, the rather business like neurologist had to rely on my rather spotty ability to give her a personal narrative. I told her I had wanted to come to see if I could be a patient at a place where plant-based eating was at least known about and encouraged for some people with MS. I asked if she was familiar with the study. She said that she was. She also confirmed what I had seen on the McDougall forums: that although the patients with MS that participated in the study reported feeling better and having more energy, there had been no change in their before and after MRIs and thus no clinical evidence of any halting of the progression of MS. In addition to that, I learned no further studies were planned. This neurologist also volunteered her particular discomfort with the design of the study, which she did not consider rigorous enough.

I went through the physical neurological exam. I did better on all of it than I ever remember having done, and my walking time was considered “within normal range.” The doctor didn’t seem to take into account, however, as my long time doctor had, that Romeo was there the whole time and walked with me.

She didn’t disbelieve that I had been given the diagnosis of MS, but without medical records and original or follow up MRIs, she said she couldn’t be sure the symptoms I described could be attributed solely to MS.

Many people are very happy to hear they have “passed” as normal enough to elude a medical label. But the particular way this happened was actually very disturbing to me. First of all, I felt that OHSU had not done the due diligence they should have in following up with me about whether my records had arrived, especially since I had confirmation that they had been sent twice, and to the numbers I was provided with each time. Instead they just gave me the impression they had. And while the neurologist was not unkind, and I think she did understand I was telling the truth, she was the kind of exacting practitioner that wants to see clinical records as evidence. Regarding the life-long diagnosis of mild cerebral palsy, she didn’t even seem to believe that the decision made when I was 10 that I only needed to wear my brace at night could be accepted anecdotally. The orthopedists I saw who thought so and who are either long dead or retired didn’t seem to matter because she had no clinical record of it. My personal narrative, the pieces of it I could pull up on the spot, didn’t seem that convincing to her.

This appointment occurred right before Thanksgiving. So right after it, once again, I called the family practice where I had been seen for 17 years of my diagnosis to ask for my own copy of my medical records. I needed whatever  clinical history was available to hold in my own two hands, to say it was real, and to figure out how to present it next Fall when I am to be seen again.

Parts of that history are now gone forever, including the initial MRI that provided the diagnosis of MS, because it was all on paper records in the second half of the 90’s and no one seems to have kept the paper records at any of the doctor’s offices or the imaging center where the MRI took place when they went digital in 2000. But I now have a CD of 12 years of office visits and lab work from 2000-2012. The woman in charge of patient records was trying out a new technology to place records on a CD in a more workable format, and mine was the first test of whether the CD would be readable.

Fortunately, I could open the CD, and so I began reading backwards from 2012 what my doctor said about my visits all the way back to 2000. It’s odd to read your medical history backwards; nevertheless I saw documented evidence that I had improved with my way of eating and that the doctor saw it as a causal agent. That awakening in him had been gradual, but it was definitely there. There, too, were things I had struggled with: weakness, fatigue, and then the improvement in walking when Romeo came to me.

Missing is the swallow study that documents problems with my throat tiring or food going back into swallow too soon (I recently found a copy of that in a copy of my original Social Security application). Gone are the times I was so dizzy I had to crawl across the room. And absent are things I never told the doctor much about, because I either didn’t think of them at the time, or didn’t want to have to say them out loud.

February 14 it will be 20 years since I received the diagnosis of MS. I’ve had the diagnosis of mild cerebral palsy nearly all my life. The neurologist wasn’t impressed with a diagnosis of fibromyalgia given to me back in 2009 based on the pressure points, and I saw that my doctor may have not made a note of it at all in my file, though he definitely said to me that I had it.

I’ve never been one to really focus on clinical findings about myself or let them define me, but it was a little like as if I had suddenly found myself on that ariel tram, my legs dangling into the air with nothing to stand on while I looked out over a vast and strange new panorama. (Or maybe it was more like riding the ski lift up to the continental divide in the Rockies with my Dad when I was 17. My Mom and sister were afraid to ride the ski lift with us, but I had wanted to go with my Dad and be at that highest point in the continental United States, as if in so doing, I could see down both sides of the mountain range at once. There was no ground, but somehow the entire vista was the ground. The ride up to the summit is what  makes the summit worth getting to.

And now parts of that vista have gone missing, at least in official form. Along with a copy of the swallow study, I did find a copy of the letters my neurologist wrote dated the Valentine’s Day 20 years ago when he gave me the diagnosis.

“Ms. Maggi returns for follow-up of her new left-sided weakness with recurrent bouts of fatigue. We sent her for an MRI of the brain to look for evidence of multiple sclerosis. The MRI does show white matter lesions along the periventricular frontoparietal area with an orientation that is highly suspicious for multiple sclerosis.”

In a previous letter he writes that although he does see the cerebral palsy on the right side, and is concerned with my report that my left sided symptoms worsened with mild elevations in body temperature, he is ordering an MRI, but expects it to come back normal. So this finding is a bit of a surprise. Perhaps the new neurologist I saw in November would be vindicated by his diagnosis, which reads, “at this point, we would diagnose her as clinically having probable multiple sclerosis.” He goes on to say that given the relatively new onset of symptoms, he does not think I am a candidate for Betaseron, and therefore would hold on a lumbar puncture, since we had decided not to pursue “an aggressive therapy.” He recommends a year off of work, to see if the symptoms will improve. As it turned out, I did not improve enough in a year to return to work.

Neither did I return many more times to see this neurologist, since he was 90 miles from home, and I couldn’t drive. Besides there was also this reason, which I dramatized in my poem “Diagnosis”:

First time a doctor was younger than me.
He had to deliver such huge, hard news.
Second time we ran late for ninety miles.
The extra traffic on the interstate,
my bout of vertigo at the rest stop.
We’ll be there soon. The secretary
was nice on the phone but when we got there
she said he won’t see you today. You’re too late.
We fussed.  They relented. When he came in
the examining room, he started to talk
about the importance of coming on time.
I looked at him and said I’m sorry I’m late.
Do you think you could have a little compassion?
He looked down at his shoes to change his world.

–from If A Sparrow

Whether deemed clinically “probable” or not, the conditions we live with each day are real to us, just as the journey we make to improve those conditions can also come to define who we are.  Instead of focusing on the records to tell me the truth about myself, I had decided long ago to learn to listen to my body and try to follow its truth. Now the records have become so old or obsolete they have been deleted, without my knowledge. Those that remain reveal practices that are no longer considered current or, possibly, rigorous enough. Once again, I need to go to another level of courage to believe in the truth of my own story.

Lots of people have told me I should write a book from the entries in this blog. I’ve thought a lot about that, but silly as it sounds, I just couldn’t conceive of what the book would really be about other than a string of these stories I tell about my slow motion miracle process. But perhaps I am beginning to get a handle on why I’ve written these things down in journals and then here on the blog in the first place. The phrase that first came to me is “to affirm where I am in space,” which, I guess, is  another way of believing in the truth of my own story. Here, now, with my feet hanging over a vista that includes the loss of medical “proof,” a definition which seems to shift with the changing times, that intent seems more important than ever.

My watching of NOVA has helped me understand that space and time are not truly separate, so I guess I would amend that to “affirm where I am in space-time.” That’s especially important now that I know some of these original records will never reappear. Even my plant-based eating cannot be attributed to discovering Dr. McDougall or Dr. Esselstyn or Dr. Gregor or any of the other doctors. I simply decided after reading Dr. Swank’s MS diet book that I would try to do it vegan because it felt like the right thing to do. It was only months afterward that I stumbled on to what these other doctors had to offer, which helped me taylor an eating plan that was right for me.

I’ll never be a Star McDougaller. I need to do things Dr. McDougall discourages or opposes outright, like be sure I have that ounce of two of certain nuts and seeds (especially flax), and take vitamin D, especially in the winter, if I want to keep moving my joints without them becoming as brittle as twigs. And after my appointment at OSHU I know I won’t be part of a study they don’t plan to continue, and that they consider a plant-based diet only one of the many ways for MS patients to eat healthy, and one of the more difficult ones to follow, I might add, so all I’ll get is a general appreciation and encouragement to keep doing what I am doing. That’s the same thing the general practitioners I’ve seen say.

Even though I do not have all the records to prove it, or the exact plan from any one doctor’s advice to engender it, the changes I’ve seen in my slow motion miracle process are real, just as the difficulties are real, and the way they  have improved or the way I bounce back when they flare up are real,  too. Also real is the knowledge that if I did not take care of myself by eating this way I would go right back to being unable to hold a book open,  or the phone up to my ear, or keep my head erect without the support of a pillow. And that’s why I write about them here. To keep a record of what has been real for me in a multi-dimensional healing process as I’ve learned how to manage my serious conditions with food and a slow-paced lifestyle. It’s been my honor to share that record I keep here with such generous and supportive readers. The pieces of history I share here may not be the entire record, but they are the pieces of it that have come forward in my mind’s eye and heart to be remembered by writing them down, because they are the evidence that makes my experience authentic to me. That, it seems to me, is as important a summit as reaching the continental divide, or following up with MRIs that may or may not show what a neurologist sees as evidence.

As is always the case when living with cognitive slowdown, the perfect clarity of answers boomeranged back to me long after this appointment was over. It isn’t that I have foggy thinking, as one of the questions on the intake formed asked. It’s that my thinking about things goes slowly–and the more stimulation there is in the environment, especially surprise stimulation, the slower the cognitive processing goes. This was a great relief to understand at last. It’s all still there–it’s just going very slowly at times along a rather bumpy pathway. I’m not missing anything. I just have to be patient, and eventually whatever I need to know will arrive. That’s why I’ve given myself the weeks/months it’s taken me to articulate this blog post.

The same neurologist who diagnosed me with “probable”  MS 20 years ago left the Northwest a long time ago and practices in the Atlanta area. But I think he would agree with me that this style of cognitive slowdown or motor performance in the face of high stimulation environments is an overload for a damaged nervous system, and is thus a telltale hallmark of MS. In fact he is the one who first explained it to me that way, in addition to saying “I’m 95% sure you have MS.” And now, after 20 years of living with it, I know it’s true in my cells. This is the kind of record that can’t be discarded. This is the kind of record I live by.

I know many of you tell me how inspirational  my posts are for you, and I’m always happy to know that. But it’s also true that this inspiration sometimes springs from righteous anger that the truth of individual experience is not valued as a component of healing or even as a valid record of what has happened. “Patient reports. Patient describes. Patient denies. . .” such odd wording. Answering “no” to having a particular experience comes to mean instead that you “deny” it, as if it is testimony before an invisible grand jury. That denial somehow implies that you may in fact be having it and yet not know you are having it. It’s so sad and un-life-affirming.

So here I go into 2016, my 20th year of living with a condition people call Multiple Sclerosis. The neurologist I saw at OHSU postulated mine might be “benign.” Maybe she is right. But she has never seen me choke, or struggle to get across the room, or not be able to project my voice, or drop something out of my hands all of a sudden, or fall when I legs buckle under me, or lay on the bed while the room spins, or any other number of symptoms that are now more “benign” because of the way I eat, the help I get from my dog, and the pace at which I live. I’m not a person who likes to waste energy on anger, but that makes me mad.

However, I know I am not alone in experiencing this tendency of medical professionals  to invalidate anecdotal history and success with controlling symptoms without medication. For example, in Norman Doidge’s fantastic book on neuroplasticity, The Brain’s Way of Healing, he begins with a chapter about a man with Parkinson’s, John Pepper, who taught himself how to control his motor symptoms with a practice of conscious walking he devised himself. In the course of his story, despite complete medical records from his original doctor and neurologist, other neurologists were engaged by a support group he was part of to discredit his personal method of improvement, despite the fact that he was clear to say it was not a cure, that it didn’t make all his symptoms disappear, and that if he didn’t follow it regularly, the motor symptoms that did improve would come back.  Nor did he advocate patients come off their medication, although he himself had slowly succeeded in doing so over a course of years. They wanted to insist that he could not have had Parkinson’s to begin with. They succeeded in having him and his program and the book he was writing ousted from the group.

But that didn’t stop him. He went on, surmounting yet another misdiagnosis of an auto-immune condition, and the death of his wife by heart attack, coming back to his walking program each time other circumstances in his life have pulled him away from it, and worsened his Parkinson’s motor symptoms. And each time he returns to walking, he improves–again.

Dr. Doidge writes that “Walking, so natural, so ‘pedestrian’ (in the sense of ordinary), may not be a high-tech neuroplastic technique, but it is one of the most powerful neuroplastic interventions. When we walk fast, regardless of our age, we produce new cells in the hippocampus, the brain area that plays a key role in turning short-term memories into long.”

It’s sad that the neurologist I saw didn’t take into account my own regular walking program with Romeo as part of the reason my neurological exam may have gone so well. I had expected more from this place I had thought of as “pioneering” lifestyle treatment for MS.

Now that I think of it, it’s also sad that several years ago, the moderator on the McDougall forums was quick to be a mouthpiece about how nerve damage cannot be healed when a member with MS following the McDougall diet wrote with joyful enthusiasm that she had been able to run after a long time of not being able to. He chose, or maybe was instructed to mimic, Dr. McDougall’s careful party line about whether nerve tissue can heal or regenerate.

Reading Dr. Doidge’s two books, I now know neuroplasticity is much more complex than that, and while it can certainly be helped by what we eat, how we move and many other complex factors are also at play. Yet we still live in a world where most doctors, even ones who advocate healthy lifestyle choices, still rarely see beyond their own area or special agenda, beneficial though it may be. Thinking outside the box all too often simply implies another box has been constructed.

Each time I visit a doctor’s office, I will have to continue to stand up for myself and the individualized lifestyle choices that have helped keep me mobile. It may be true that the spotty medical records have “boomeranged” some potentially problematic consequences my way, that is if I see my story only in terms of what they see. Instead, though, I’ll do my best to think of my story not as the verb “to boomerang,” but the noun, which means, “a thrown tool,” “a curved flat piece of wood to be thrown so as to return to the thrower.” I throw my story as a tool, to hunt the truth, and help it return back to me.

Happy Valentine’s Day, Dear Readers. Just like my favorite song from the musical Damn Yankees, you give me heart.

Maria (moonwatcher)





Leave a Comment

{ 25 comments… read them below or add one }

1 Véronique February 11, 2016 at 8:49 am

Hi Maria,

I am so sorry you had that experience with the neurologist in Oregon! I expected them, just like you did, to be more open minded and maybe kinder. Especially since dr. McDougal speaks highly of them. Quite a disappointment. However, YOU know with or without confirmation from a doctor. Never doubt your own inner guidance. I hope she reads this blog some day, not to shame her but to offer her the opportunity to learn and maybe change.
Coincidentally, I found out 3 weeks ago that my GP threw away my old records. He digitalized what he thought was relevant and destroyed the rest. The rest were my records from past doctors that I had handed over to him when I joined his practice. Unfortunately, now I have no more record of the scans of my hips (which are starting to give me grief again) and my allergic reaction to antibiotics as he did not deamed it important enough to keep!!! I exploded when I found out. I requested a print out of my records and switched to a different gp. So I understand how frustrating it can be to have lost some vital information.
As for writing a book: I would read it!!! But it cannot be a book instead of your blog. I love reading your updates and recipes.
If I may make a request? I would love a short summary of your diet at the moment. I know it has evolved throughout the years. I am trying to find a vegan mix between dr. McDougal and dr. Jelinek’s OMS without oil and am struggling a little with the flaxseeds, omega3’s etc.. I would love to read your take on it.
Yes you are an inspiration. What you share with us matters! When i found your blog, I found hope. So thank you Maria for giving us hope!


2 Maria Theresa Maggi February 11, 2016 at 12:11 pm

Dear Veronique, Thank you for this lovely reply and show of support. I was very sorry to hear about your ow experience with your medical records, but alas, it seems to be a world-wide phenomenon. If I ever do write a book, there would be a lot of material from my blog in it, reordered, reworked for a slightly different audience, added to, etc. As for diet, I really go by feel, and staying within Dr. Swank’s original recommendations for high fatty foods like nuts and seeds to be low in saturated fats and not exceed 50 grams a day, 20 grams being a minimum. The ones that work best for me are ground golden flax, chia, pumpkin seeds, hempl sesame seeds and tahini, almonds and almond butter, hazelnuts. Avocado is small amounts is okay too. These all happen to be a bit lower in saturated fat and flax, chia and hemp all have a good balance of omega 3s. But everyone is different. Right now I’m eating a stir fry scramble thing of greens spices tofu black beans and golden flax sprinkled on top. Them some breakfast oatmeal cookies, made with oats banana,millet, spices vanilla raisins–etc–like in my cookie posts. Hope that helps!xoxo


3 Donna February 12, 2016 at 7:06 am

Hello Maria.,
I too have a benign MS diagnosis. I have been able to notice improvements in my function since I became a McDougall follower. I fall less often and can walk without limping most of the time. My cognitive abilities have definitely improved but at the time I changed my diet I also stopped taking 11 prescription medications. I expect a lot of my health improvement was related to getting off of the pharmaceuticals.
Thank you for confirming that the patients in Dr. McDougall’s study felt better even though their improvement did not meet objective standards. McDougall said that when the patients were randomized, the diet group contained the most disabled people.
My reading of medical and science related articles has convinced me that our nerves do heal though more slowly than other tissues. Improved circulation can take a couple of years or more to bring about it’s healthy benefits. For instance men often find that their ability to get erections improves after a couple of years or so. It does take time for the body to heal itself. I am 3.5 years into my new way of eating and exercising and I continue to see small improvements that have given me relief and more energy to continue to enjoy my life.
Thank you for sharing your experiences with us.


4 Maria Theresa Maggi February 12, 2016 at 8:57 am

Hi Donna, Thank you for your comment and welcome to the Plant-Based Slow Motion Miracle conversation! I so appreciate you sharing some of your own lived experience here. It’s so wonderful you were able to come off so many medications safely with the lifestyle changes you made! I’m glad what I shared about the patients in the study gives you encouragement. I am totally with you from my own reading on the slow healing of nerves over time. It does my heart good to hear of your own small improvements over time. You are on a good road to be well on the way to saying the same thing in many more years! 🙂


5 Nicole O'Shea February 11, 2016 at 10:46 am

Oh Maria, how beyond frustrating and invalidating! The callous negligence you encountered, I wish it were less common or at least different where you went but wishing doesn’t make it so.

All around us there are limitations as to what people will believe. Starting with our own perceptions, that is a huge source of disbelief, and right up to our improvements. The “patient denies” language is such a perfect symbol for what amounts to a war between doctors and patients overall, and the inequities that exist societally seep into interpersonal power dynamics so quietly, with great impact.

A sobering and sad situation. I am sorry to hear that doctor visits will continue to be a battle. I am in a similar situation and am willing to fight but it is tiring.

much love,



6 Maria Theresa Maggi February 11, 2016 at 12:13 pm

Oh Nicole, how I know you know what this is all about, and I so appreciate your words of wisdom and compassion. I think the saddest limitation of all is the limitation on what most people are willing to believe. But, that’s why I put the link to “You Gotta Have Heart” at the end of the post–because no matter what, we just do!! much love back to you–


7 Veronica February 11, 2016 at 11:09 am

I don’t even know where to begin… This post hits so close to home with me. The neurologists I’ve seen have been so closed minded, so hope-slashing, so disbelieving of actual results… It’s angering, and frustrating, and sad, because I know many others who suffer from MS lose hope and believe their doctors when they say how you eat & how you live makes no difference. And the doctors who say it does help, but often don’t even mention it to their patients because they think it’s too difficult to follow (?? I changed overnight, as a deep need to walk overcame my desire for pizza. The whole attitude of most doctors about their patient’s competence and motivations is depressing.)

Luckily I found a doctor who specializes in MS (for the past 15 years). And in Seattle, when I got the diagnosis, is right by Bastyr University where she helps train doctors in alternative methods. She (Dr. Mischley) is doing a few studies on MS patients and how various factors affect symptoms – perhaps you’d be interested? She and her partner (Dr. Marco) have a practice in Seattle, but the study, at least one of them, can be done entirely online (questionnaires every 6 months). A link:

I’m glad you continue to listen to yourself, and advocate for proper care and understanding. It’s so important that we make ourselves heard. As this whole journey is a slow motion miracle, I hope that eventually, slowly, the medical profession opens its eyes and realizes not everything can (and should) be treated with a pill (or remain hopeless).

Much love to you on this anniversary. xoxo


8 Veronica February 11, 2016 at 11:11 am

Oh, and I love (and tear up) at that poem – every time I read it. Compassion is often missing from many interactions.


9 Maria Theresa Maggi February 11, 2016 at 12:19 pm

Thank you for all your lovely wise and understanding words in both comments, Veronica. I know you have lived this too. I, too, changed nearly overnight, and I love how you put that: “I changed overnight, as a deep need to walk overcame my desire for pizza.” Exactly.

The doctors you found in Seattle sound great. There are a few out there. I will take a look at the link, but at this point am pretty “studied out.” Thank you so much for all you say and hope for here. And it really makes my day that you love that poem so much. I am glad we can all be here for one another. What else is there? xoxo


10 Debra Maslov February 11, 2016 at 11:03 pm

Hi Maria. I read your post with intense interest. I actually feel tongue-tied as to how to respond or where to begin. But I want you to know that I could totally relate to how you were treated (or mistreated) at OHSU last November, & how dehumanizing it can feel. From the incompetence of no one letting you know that your records never arrived, no one alerting you to the lengthy intake forms, & to the uber clinical/business-like attitude of your neurologist…… I can see how you felt this was a disturbing experience. I can only imagine your doctor’s tone of irritation or disbelief leaving you to work way too hard to prove things you should not have had to prove. Do we really only exist if records show that we do? Do our personal recollections & histories mean anything? I am so sorry about this total disappointing experience. Thank goodness you know what your truth is & you know what is real. A few years ago I started asking all of my doctors for copies of all tests & even notes if possible. Sure I have lost a lot of important documents over the years before doing this, but it might save me from further loss. I love your poem, “Diagnosis”. If only compassion could be taught in medical school -or better yet, if it was a criteria for who got selected into medical programs to begin with. Thank you for your wise words today, as always.


11 Maria Theresa Maggi February 12, 2016 at 8:52 am

Dear Debra, Thank you for your beautiful heartfelt comment. I worked a long time on this post, letting it sit sometimes for weeks, waiting to know what to say. In the end I felt it was right to go ahead and post it, because as I wrote I surely do know I am not alone in receiving this kind of treatment from the medical establishment. Nevertheless, it makes me sad to read that you and others are verifying this. I like your practice of keeping copies. Thankfully, because I kept copies of the documents submitted with my Social Security application and reviews in the past, I have some things that the doctors no longer have. And thank you for you kind words about the poem. That means a lot to me. There are a few doctors who are truly compassionate–my new family physician here in Portland is one–and she is young–but wow, wouldn’t that be something if compassion were a criteria for being selected into medical programs to begin with!


12 angela February 12, 2016 at 6:01 am

Oh Maria the arrogance of some of these doctors! And the incompetence of others….don’t they realize that it’s people’s lives that they are dealing with? It’s no wonder that some get so horribly ill with depression and anxiety.

Then there are the “invisible” illnesses like FMS and ME where some doctors question the validity of your illness because there are no tests to validate them. After all you are the one who lives with this/these illness/es day in and day out. You are the expert in what ails you not a doctor who has loads of initials after his/her name just because he/she is a clever (maybe) academic and all of his/her knowledge has come from text books.

Never doubt yourself and your successes Maria you are a marvel and an inspiration not to mention a ray of light : ) to us all. Thank you.

Love Angela XXX


13 Maria Theresa Maggi February 12, 2016 at 8:54 am

Dear Angela, thank you so much for this supportive “rant” on the state of medical attention so many of us have to live with. But most of all, thank you for your vote of confidence in me and my successes. I do try to be a conduit for light. It means the world to me you appreciate that. It’s perhaps the most healing practice we can all aspire to. xo


14 Silvia February 12, 2016 at 9:47 am

Dear Maria,
I so hear what you say! Sadly enough it is a common thing. Doctors tend to disregard cases that do not develop as expected. Then it simply cannot be that illness.
Even if there is the evidence of a pathologist they tend to say he must have been mistaken if the outcome is really different from the statistical expectations.
It is very important to believe in our own experience, to know our own truth.
I love your blog and what you so generously share with us!
Greetings from Silvia in Germany


15 Maria Theresa Maggi February 12, 2016 at 1:01 pm

Dear Silvia, Thank you so much. You put it so very well: “doctors tend to disregard cases that do not develop as expected. Then it simply cannot be that illness.” To use an English idiom, you sure hit the nail on the head. I so appreciate all your words here, of truth about medical perception and your generous heartfelt support.


16 Michele February 12, 2016 at 11:44 am

I am so sorry you were treated with such disrespect and that your story was invalidated. What a waste of your time. Beware of doctors, medicines, and their treatments. You know what works! More and more books are coming out about the neuroplasticity of the brain and the changes we can make. Medicine is a big business, about profit and drugs, not about healing. This is clear from your experience.


17 Maria Theresa Maggi February 12, 2016 at 1:04 pm

Thank you for your comment, Michele, and your words of support to know what I know. And yes, sadly, the big business side of medicine can cast a shadow over that knowing all too often, when ideallyt it should work in service of it.


18 Pam February 13, 2016 at 5:00 pm

Maria, I’m sorry to hear about the details of your visit to OHSU. I wish it had gone better. I love Dr. Doidge’s books on neuroplasticity, and John Pepper’s story in the most recent book really resonated with me as well. I also enjoyed your concept of the boomerang. What a wonderful way to describe what you do with your writing. Thanks for continuing to educate us, entertain us, and share your art with us. You are an inspiration.


19 Maria Theresa Maggi February 13, 2016 at 9:26 pm

Hi Pam–I have you to thank for telling me about Dr. Doidge’s amazing books! I am so happy you liked my use of the boomerang image to describe my writing. I so appreciate the mirror my astute readers provide for me. I learn so much from you. Thank you!!


20 Judeen February 13, 2016 at 7:41 pm

The aging process gives us a knowledge of our lives that only we can understand. We have lived, learned, suffered and worked our way to feel the best we can. Keep up your efforts with what works for you. Our doctors are trained to work in a world of medications. Your blog helps many – thank you so much.


21 Maria Theresa Maggi February 13, 2016 at 9:27 pm

Thank you, Judeen, for these wise words about how the aging process and time give us a knowledge of our lives only we can understand. So well said. Thank you for your affirmation and gratitude. It is deeply appreciated.


22 Gena February 17, 2016 at 3:58 am

Hi Maria,

I read this post days ago, but I’ve waited to comment because it is so rich and so heartfelt that I wanted to process and not speak hastily (I realize now that this is an appropriate reaction in the context of “slow processing” that you describe!).

First, I am so sorry for the many ways in which this encounter felt disappointing and frustrating. I think that your response to it has been remarkable: thoughtful, courageous, and critical without being dismissive or lacking in empathy to the doctors you saw at OSHU.

When I was working in hospitals a few years ago, I saw both sides of this issue of doctors relying so much on records and on procedure. On the one hand, in the absolutely chaotic healthcare environment, some sort of systematic approach is vital, and doctors use diagnostic methodology to be sure they’re not using speculation as a guide — which, I understand, is a huge part of their effort to respect the scientific method and not allow bias or personal experience to cloud judgment.

On the other hand, being treated as a medical record, or having one’s very real and life-impacting symptoms reduced to a series of questionnaire inquiries or measures on a diagnostic scale can seem in the moment like an evisceration of one’s experience and even selfhood, as (for better or for worse) our experience of illness becomes a part of who we are. I so badly want there to be a way for doctors to continue working within a systematic framework without treating patients as numbers, or losing their capacity for instinct and judgment (both of which are vital diagnostic tools)–much less their ability to respect and listen to what patients have to say.

I agree fully that your story belongs to you, and it is ultimately the only story that matters, regardless of what a chart might say. I hope you can continue to advocate for yourself within what is a very difficult system, our healthcare system. You are already doing an incredible job of that. And we, as readers, are lucky to bear witness to your story as it continues to evolve.

Sending much love and support (and hope Romeo is feeling better!),



23 Maria Theresa Maggi February 17, 2016 at 1:20 pm

HI Gena, I so appreciate you taking the time to process in the “slow miracle” style–your recognition of that is profoundly affirming and meaningful to me. Since I knew your experience would provide you with perspective from both sides of the “coin” I also really appreciate what you say here about how I accomplished what I had to say. Thank you for that. I agree there are doctors who are able to bridge these contrasts of system and individual, but hopefully there will be more training in the future so it can be more common and thought of as necessary. Dr. Rachel Naomi Remens and her work and books are what comes to mind when I think of a physician who has learned to honor the stories of her patients and also go on to teach other doctors how to do that, as well as trust their own feelings. I love her two books. In part, they have inspired me to find the voice for this blog. And lastly, thank you so much for your kind thoughts for Romeo’s recovery. He’s doing okay. The trick now, as you may know, is finding the right ineffable combination of keeping it dry and keeping it covered, walking some, but not too much, etc. I certainly realize all over again how very much he contributes to an elegant and freeing mobility I enjoy because of him. Had time to reflect on that yesterday as I soldiered on over the the co-op with my walking stick, since it is too far for him right now. And again, reminded me how said it is that the neurologist I saw did not notice or see this connection taht makes my “normal” walking possible. xoxo


24 Lee February 18, 2016 at 7:03 pm

Maria, thank you for sharing your story. I wish it were a surprise to me to hear you were treated so unfairly, but given my own experiences with the medical system, it isn’t. That’s not to say I haven’t had wonderful interactions with healthcare providers–my primary care doc and breast specialist are both wonderful–but I can relate to your infuriating experience.

Anyhow, regardless of what your remaining medical records say, or the opinions of a neurologist with the bedside manner of a DMV clerk, you know your diagnosis, where you’ve been, and the profound healing you’ve experienced. No one can take that away from you. Besides, in a pinch, we can all vouch for you, too. 🙂

Also, a last note: Some congratulations are in order! I can only imagine how hard you’ve worked to heal and continue to stay healthy. The fact that a medical professional now can’t say for certain that you still have MS is nothing short of a (slow-motion) miracle. In the midst of the frustration, this hard-earned victory deserves a moment of celebration. You truly are an inspiration!

PS – I will be at the top of the pre-order list for your book 😉


25 Maria Theresa Maggi February 18, 2016 at 9:06 pm

Lee, thank you so much for such a rich and thoughtful comment. Part of the reason I allowed myself to write this is that I know this kind of treatment is not unusual, but I’m still saddened to know you’ve experienced some of the same. Of course you had me laughing with “the bedside manner of a DMV clerk”–bless you for that sense of humor you share that is all your own! Then you had me tearing up about you being at the top of the pre-order list if my words ever end up forming a book. That seems so far away, but then again, maybe it wil happen some day. Thanks so much for the support and vote of confidence. I love your silver lining observation that the situation I described at my appointment is also nothing short of a slow motion miracle–thanks for articulating it that way! Means a lot to me. 🙂


Previous post:

Next post: