Comments on: The Continental Divide and The Boomerang

By: Maria Theresa Maggi

Maria Theresa Maggi — Fri, 19 Feb 2016 05:06:13 +0000

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. 🙂

By: Lee

Lee — Fri, 19 Feb 2016 03:03:41 +0000

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 😉

By: Maria Theresa Maggi

Maria Theresa Maggi — Wed, 17 Feb 2016 21:20:55 +0000

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

By: Gena

Gena — Wed, 17 Feb 2016 11:58:07 +0000

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!),

Gena XOXO

By: Maria Theresa Maggi

Maria Theresa Maggi — Sun, 14 Feb 2016 05:27:29 +0000

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.

By: Maria Theresa Maggi

Maria Theresa Maggi — Sun, 14 Feb 2016 05:26:03 +0000

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!!

By: Judeen

Judeen — Sun, 14 Feb 2016 03:41:09 +0000

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.

By: Pam

Pam — Sun, 14 Feb 2016 01:00:59 +0000

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.

By: Maria Theresa Maggi

Maria Theresa Maggi — Fri, 12 Feb 2016 21:04:32 +0000

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.

By: Maria Theresa Maggi

Maria Theresa Maggi — Fri, 12 Feb 2016 21:01:05 +0000

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.