Massage Tales, MLD

Diet and Exercise is Not the Answer

Roberta* has been to several doctors. She is the patient that makes a doctor takes a big calming breath before walking in the room to consult with her. Roberta is relentless, opinionated, and she has articles from websites to go over with the doctor. Lots of them. These aren’t links that the doctor can look at later. Roberta has printed every one out on actual paper, and she puts them into the doctor’s hands. She will not be ignored.

Not this time. Not again.

Roberta woke up one morning and her trousers were all too small. Everything from her hips to her ankles ached, and even a gentle push on her leg was enough to make her gasp. Roberta has stopped wearing trousers. She has a closet full of dresses with loose, flowing skirts. She wears pantyhose, even in summer, because it calms the ache and it keeps her skin from chafing when her thighs rub together.

Roberta’s doctor wants to talk to her about diet and exercise. The doctor wonders if Roberta is being honest about her food intake and suggests that maybe Roberta is overeating due to stress.

And Roberta is stressed. She has been going to this doctor a few times a year for a couple of years with a similar complaint every time, and a handful of internet research. When Roberta got access to her medical records for the year, she sees that every visit, the doctor noted, “counseled about diet and exercise.”

Finally, Roberta broke through and got someone to say the diagnosis she suspected already: Roberta has lipedema.

According to the Lipedema Foundation:

Lipedema is a chronic condition that manifests as a symmetrical buildup of painful fat and swelling in

the arms and legs, sparing the hands and feet. It occurs almost exclusively in women and is poorly understood.

lipedema.org

Lipedema is a disorder of the fat cells, or adipocytes, which commonly affects women. The fat cells swell to an unusual size, and the disorder may be accompanied by lymphatic swelling of the extremities as well. Lipedema most commonly affects the legs and arms bilaterally. Women who have the disorder often have heavy or thick hips and thighs which do not change with diet and/or exercise. It is estimated that about 11% of adult women worldwide have lipedema.

The diagnosis of lipedema can be tricky, as Roberta learned. Many general practitioners may not have heard of the disorder, and their well-meaning advice can have the unintended effect of making a patient feel unheard, confused, and mistrustful. This is the state Roberta was in when I met her.

Many of the suggested treatments for lipedema have to do with managing two of the major symptoms: swelling and pain. Manual Lymphatic Drainage (MLD) is recommended for the management of both these symptoms. Roberta, and others, have come to me for MLD as part of lipedema management.

I find that I am also holding space for the stories that come with lipedema. The healthcare professionals who dismissed, and the ones who listened. The hours of solitary research and the daily life in a body that would not be how it was supposed to be. The aching relief to know that other people know what they are going through. The tearful gratitude for every healthcare professional who listened without judgement, said “I don’t know” when necessary, and helped when it was possible.

About 1 in 9 women may be living with lipedema in some form. Many of them don’t know, they just understand their bodies as problematic, aching, maybe even “deformed.” I urge all of you to have patience, and

believe deep in your soul that you are the expert on your body.

Keep reaching out — there are many healthcare professionals who will validate and support you.

I hope to be one of them.

*– Like all the clients mentioned on this blog, “Roberta” is a composite of several individuals. Identifying details have been changed.

Massage Tales, Oncology Massage, Thoughts on the profession

What Did You Notice?

She’s a climber, a dancer, a multi-sport athlete.* She biked to the clinic and will most likely go to a yoga class on her way home. She eats clean, but she’s not obsessed about it or anything. She will eat a piece of birthday cake or a cookie when she wants to.

She is healthy, and she is doing everything right. I say that every client is the expert on their own body. She is the expert-archetype. She knows her body so well, takes such excellent care of it, that she found her melanoma before it was much more than a spot just beginning to touch the dermis, the layer underneath the top layer of skin.

After the massage, as I hand her a cup of water, she stretches her shoulders and looks at me, earnestly. “What did you notice?” she says.

I stammer for a moment, surprised. What did I notice? She lives so fully and attentively in her body, I wonder why she even wants to know what I might have noticed. It seems more appropriate that she tells me what she noticed, that she educate me on how best to support and care for her.

She looks at me, that direct gaze, with the question still in her eyes. She wants something from me, something that I am not sure I even know how to give. She wants the report card.

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The report card is the after-appointment summary, where the massage therapist lists all the spots of tension, adhesions, tightness, or just plain wrong-ness that they felt in the client’s body. Supposedly, it is a tool to encourage repeat visits and to begin documenting the effectiveness of massage for this person.

I was trained to give the report card after a massage, even though it always felt wrong to me. First of all, every client will have extensive direct experience of their body and how it feels and functions. Even if I work with someone for years, I will only have a fraction of the embodied information each client has about themselves. Secondly, as the provider of the massage, it is my job to receive a report card, not to give one. I’m not here to rank or rate any human body. I’m here to support, to love, and to learn.

She won’t give up, though, this client of mine. It is a quality which makes her an excellent athlete. I suspect she was also a good student, since she seems to be following the same massage training book I was given years ago. That book includes the report card. This box must be checked before we can call the massage complete.

So, what did I notice?

I spread my hands wide. “I noticed your breathing, the rhythm of it. I noticed your pulse as I massaged your hand. I noticed that you move with ease.”

She raises her eyebrows, just a bit, then draws them close together. The vertical line between her eyes quivers a bit as she tilts her head to one side. There will be no demerits, no suggestions for improvement on this report card.

She keeps her quizzical expression as she leaves. I peek out my office door and I see her pause and shake her head at the bottom of the stairs.

I’ll be honest — I’m tired of the assumption that any interaction with a health care provider or wellness professional ends in a list of instructions on how to be a better, more complete human. I’m tired of leaving every doctor visit, massage appointment, or acupuncture treatment with a list of where I went wrong and how to correct it. I think some clients might be tired of that too.

What would happen if we started with the assumption that the human in our care is already complete? What if we also acknowledged that they are the expert on their own experience? And what if, maybe, we led with humility and curiosity, keeping expertise for later, after our client has had a chance to educate us?

What would happen if we threw out the report cards? I hope that on the other side of report cards is a land of real conversation and exchange of information, as equal partners working towards the same goal.

*- This client is a composite of several different individuals. All identifying information has been removed.

Inner World, Massage Tales

Semicolon

Sometimes when I am working with someone, I see that they have a semicolon tattoo. Tattoos aren’t all that unusual, of course. I have three myself. Most of the time when I see a tattoo, I use it mainly as a handy marker to remember where I felt something notable in someone’s tissue.

The semicolon tattoo is different, though. Every time I see some version of it on a client, it reminds me to pause, to take in this human who has trusted me with their body for a time, and to respect the whole person, just as they are, right in this moment.

As you may know, the semicolon tattoo is a quiet message of acceptance and affirmation about suicide, depression, and other mental health issues. Even now, there is often fear and stigma around these topics, or around anything that’s not in the very narrow range of “normal.” When was the last time you had a real and open conversation about the times when you are not feeling all the way okay?

Photo by Dominika Roseclay on Pexels.com

One day, I was working with a new client at the spa. She came in for a “couples” massage with her sister-in-law. It was her first massage. This is not so unusual. Some times friends booked the couples massage because they felt more comfortable with more people in the room – especially if one of them had never had a massage before.

Normally, I dislike couples’ massages. The room is almost always not quite big enough for two therapists and two tables. There is always a point where the room temperature switches from comfortable to barely-able-to-breathe. And, in my experience, most of the people who get couples’ massages have no interest in considering regular massage to support their health. I only did them rarely at the spa.

This client, however, felt different to me. I’ll call her Kelly -*. Kelly answered my questions so quietly that I had to lean in and ask her to repeat herself several times. Her smile was warm and her eyes were on the edge of apprehensive. As the other therapist and I left the room, we heard Kelly’s sister-in-law give her detailed instructions on how to get on the table and where to put her clothes (something I had just done.)

I don’t know the exact thing that made me tune in with more attention when I met Kelly. For lack of a better word, I’ll call it tenderness. There was something tender and lightly shielded about her. Plus, I always feel a little protective of clients who are getting their first massage. It’s a vulnerable experience.

Kelly’s sister-in-law and her therapist chatted for most of the massage. Normally, this would have distracted me for the whole hour, but as I cradled Kelly’s feet, I noticed she had a small semicolon tattooed on her ankle. It caught my attention and helped me tune out everything in the room except Kelly and me. This human. Right now. Who deserves my time, my attention, and, yes, my caring love.

I am grateful for the semicolon tattoo, and for what it represents. I am grateful for the way it reminds me to come back to the present moment and just be with this person. I am grateful that there is a quiet way to acknowledge that some of us (all of us, if we’re honest) will struggle to maintain this life sometimes. I am grateful that Kelly did.

*- “Kelly” is a composite character based on several different client interactions.

Inner World, Thoughts on the profession

Interoception

I am committed to making this blog, this website, a safe, neutral space, free of partisan ranting. I have plenty of safe places to rant in my life, and I need all of you to feel welcome in my space.

I also don’t think having agency over all aspects of my body is a partisan issue. That seems like common sense to me. So here we go:

Today I am thinking about what happens when we give over (or have taken from us) full control of our bodies. What, from a physiological perspective, happens when we are not able (or allowed) to fully sense what is going on inside ourselves? And (because the mind and body and spirit are all connected) what happens to our emotional life?

Interoception is our sense of what is going on inside our bodies. This is one of the senses we use to interact with and interpret the world. Interoception is the sense that tells us when we maybe should not have eaten at the sketchy buffet, or that we’ve probably had enough caffeine for the day.

In addition to physiology, interoception helps us associate bodily reactions with emotions. This is the sense that helps you associate your racing heart with either the terrifying new boss or the delightful new love.

Interoception can be so easily interrupted by outside forces, and by the workings of our own minds. How many times have you ignored that prickle at the back of your neck because it seemed “silly”?

Photo by meo on Pexels.com

Every time this happens, our sense of interoception takes a hit. It may not seems like much, but this sense plays a key role in identifying and regulating emotions. According to research published in Frontiers in Psychology, “There is compelling evidence demonstrating links between poor or disrupted awareness of sensory information, or interoceptive awareness, and difficulties with emotion regulation.”

Meaning, if we keep denying the evidence of our own bodies, we run the risk of losing it. More or less.

There’s a lot of talk lately (still, for as long as I can remember) about the proper use and care of bodies like mine. Uterus-having bodies, specifically. I am fortunate to have the support and practice to hear this talk and let it fade away. I have over a decade of massage therapy training and work that taught me to trust the evidence of my own body.

Today I’m thinking about those who don’t have that good fortune. Those whose bodies have relentlessly been under attack — wrong size, wrong color, wrong shape, wrong place, etc. I see you navigating through the world that wants to transplant your interoception with someone else’s, and I am in awe of your resilience.

Today, I just want to say that if you need a safe space to listen to and make peace with the wisdom of your own body, I am here. My office is quiet and my door is open.

Thoughts on the profession

The Other 40%

I recently got back home from the International Massage Therapy Research Conference in Alexandria. If you’re not familiar, basically this is a nerd conference where massage therapy nerds can nerd out together. It is exactly up my alley, and I left feeling mostly inspired, energized, and just a little bit smarter.

On the surface, most of the conference was about pain. Chronic pain, the opioid epidemic that grows from (mis)treatment of chronic pain, the efficacy of massage as a treatment for all kinds of pain. For me, however, one other theme emerged from the conference, and that theme was: Health Equity.

During the first panel, three presenters talked about integrating massage therapy as a way to address the opioid epidemic. The first presenter threw out a sentence or two about cost, and quickly moved on to other things. The second presenter talked about integrating massage therapy and other integrative practices into the VA healthcare system, and the positive results that followed.

Yay, massage, right?

But as I sat there, I grew more and more uncomfortable. What about people who didn’t have access to either money or the VA healthcare system? What about the many (many) people in chronic pain who don’t have the extra income to spend on massage therapy, or other integrative practices that are not included in health insurance? What about the many (many) people in chronic pain who have no health insurance?

I struggle with this at some level almost every day. I am a sole practitioner, trying to make my living with a private massage practice. I do not take insurance, for a number of reasons. My services are out of reach for some people. I have an uneasy compromise, in that I offer a sliding scale to anyone who tells me they need it. But still, just the location of my office puts me out of reach for some people who don’t have access to a care.

Photo by Inzmam Khan on Pexels.com

And, being a human, I do not want to suffer this dilemma alone. I want the entire massage therapy profession to spend more time thinking about equity, about creative ways to make our services available to more people.

Let me clear: I am not talking about volunteering. The truth is that we live in a world that often equates value with money. The things we value are the things we pay for, and in order for massage therapy to be valued, it needs to be paid for. We are healthcare professionals who should be compensated, just as a physician, physical therapist, or nurse practitioner would be compensated.

Later in the conference, one of the speakers put up a colorful pie chart which showed the factors that really influence health outcomes. In her chart (and others I have looked up since,) clinical care (doctor visits, etc.) accounts for only about 10% of health outcomes. The largest pieces of the pie chart were health/lifestyle behaviors (30%) and socioeconomic factors (40%.)

Socioeconomic factors. 40%.

The speaker completely ignored this part of the chart. It sat there on the giant slide projected over her shoulder, and she didn’t mention it. Instead, she spent about a third of her presentation talking about health behaviors, and the influence we could have on these behaviors.

I get it. It feels good, and doable, to talk about influencing smoking cessation or encouraging movement. We can wrap our heads around health behaviors.

Socioeconomic factors are big and tough and scary. To really look at these things, we have confront things like institutionalized racism, housing disparities, and a long American history of devaluing humans based on their perceived otherness. We may even have to confront our own unconscious biases and prejudices. It will get messy, and there will be no such thing as uncomplicated success.

But we ignore that 40% of the pie at our peril, and the peril of our fellow humans. As several of the speakers at the conference said, we don’t just have an opioid epidemic in this country. We have an epidemic of epidemics. Pain. Opioids. Dysfunction. So many ways that people are suffering, often needlessly.

I have been reviewing the Health Equity Report for Louisville. In most of the report, the maps for different diseases are darkest in areas of economic disparity. We can not, must not, ignore this. It is inspiring to talk about integrating massage into total care, to research the effects of integrated care, but if we do not also consider how to bring integrated care to those darkly shaded areas of the health equity map, we are just watching ourselves move around a mirrored funhouse.

I don’t have an answer. Right now, what I have is frustration and emerging awareness of my own blind spots. Also, a resolve to never unsee what I am seeing now. I am seeking to educate myself, to listen, to work even more with groups who are trying to address health inequity in my own city.

I have no answers, just open eyes and ears willing to listen. So, tell me, what do you think we can do to address health inequity in our neighborhood?

Oncology Massage

The Woman on the Plane: a short, “true” story

She and her husband were in the last boarding group for the early morning flight on Southwest. They rushed onto the plane just before the doors closed. The husband came down the aisle first, squinting towards the back of the plane, his unzipped jacket lightly brushing the elbows of everyone in the aisle seats. He strode past my row, near the back of the plane and found a seat.

She stomped behind him, lips pressed together and breathing in sharp little exhales. She wore a black scarf wound artfully around her head, eyelashes too long to be real, and perfectly arranged black leggings under a voluminous, colorful sweater.

Photo by Bashir Olawoyin on Pexels.com

Only middle seats were left on the plane. In my row, a quiet older woman had the window seat and I had the aisle. The woman in the black scarf carried a half-unzipped backpack in front of her. She stumbled over the emergency light strip just before my row and a tumble of makeup, brushes and lotions spilled from her bag. She blew a forceful gust of air through her lips and crouched down in the aisle to pick everything up.

She mumbled to herself as she filled her hands with the debris from her backpack. When a man on the aisle leaned in to help, she waved a hand at him and shook her head. Finally, she scooped everything from the floor back into her pack, pulled the zipper mostly closed and shoved it into the bin right above my head.

She stood in the aisle then, right next to my elbow, scanning the back rows. “Stan!” she whispered, “How could you do me like — ” and she sighed deeply. She looked down at the empty seat in the middle of my row and started to climb over me to reach it.

“Please let me stand,” I said. I got up to stand in the aisle, brushing heavily against her as I did. She did not move from her position right against my seat. Her gaze hovered somewhere behind me and her brows knit together ever more tightly.

She took her seat, crossed her legs and arms and started bouncing her foot. “. . . so stressed out . . ” she said, then pushed her scarf-covered head into the headrest and closed her eyes.

Up close, I could see that the eyelashes were, indeed, fake. Also, her perfect brows were drawn on. Underneath the expertly applied foundation, her skin hovered at a shade between pale and gray. Her nails were acrylic and the fingertips underneath were chapped and red.

You never know what someone is going through, but in this case, I had an inkling. I put aside my book (The Cancer Chronicles) and spent the flight focused on loving kindness meditation for her, and for everyone on the plane.

May you be well.

May you be free from suffering.

May you live with ease.

Near the end of the flight, as she and the other woman in the row started talking, I learned she was on her way to a treatment center for a recurrence of her cancer. She named the type and the diagnosis. It was familiar to me, as was the typical prognosis. (May you be free from suffering.)

She mentioned neuropathy and I asked if I could show her something that helped my clients sometimes. She agreed and as the plane landed, all three of us in the row held our left hands with our right hands and gently, mindfully, lovingly paid attention to every part of our fingers and hands.

In the moments before boarding, we learned that I had worked at the center where she would be getting treatment, and the woman in the window seat was also suffering from neuropathy — hers related to an auto-immune condition.

“See –” the woman in the scarf said, “We’re all family and we didn’t even know it until now.”

Except that if we are paying attention, we know it all the time.

MLD, Modalities, Oncology Massage, Thoughts on the profession

Absolutely Maybe

I have spent the weekend at a conference doing one of my favorite things — talking to other nerds about nerd things. The weekend started with discussion of the adaptations of lymphatic drainage protocols for specific types of plastic surgery, and ended with speculation on the titles of our future TED talks.

Mine is: “The Metaphor is Everything.”

But that’s not what I wanted to talk about today. Today I want to talk about certainty. Or, more accurately, capital-C Certainty.

Photo by Pixabay on Pexels.com

The end of the first day of the conference featured a panel of super smart guests, ready to talk about their particular view of oncology massage. It was a house tour of the neighborhood where you’ve always wanted to live — a chance to peek into the day-to-day lives, the medicine cabinets, and the private closets. (Metaphor. See what I mean?)

The first speaker made an entrance. She strode out from the wings of the stage and solemnly said her name and her specialty, then went on to spend her allotted time sharing images and stories of her work. I found the images and stories fascinating. I found her approach challenging.

After she introduced herself, she talked about the specific training she received, similar to mine, as it turns out, and talked about the danger of deviating in any way from the tenets and protocols of that training.

Here is where I admit that I have been deviating from the tenets and protocols of that training pretty regularly. I have a whole new kind of clientele — young, healthy people recovering from plastic surgery. For them, the exact protocol is often not as effective as some critically reasoned deviations.

I found myself becoming more and more uncomfortable as she spoke. She has been doing this a long time. She has gotten great results with some really challenging cases. She knows what she is doing. She is certain of it.

That is what made me uncomfortable. The certainty of it.

There are so many things in this profession that we were “certain” of — that massage increases systemic circulation, that mechanical pressure can change certain body tissues from solid to a more pliable gel, that we should never touch people who have cancer. Thank goodness enough open-minded, curious, smart people have challenged these and other certainties and proven them mistaken. Because of these people, who were uncertain, we can reach more people and provide much better care and education about these bodies we live in.

Certainty is a hard stop. It is the period at the end of a sentence and “The End” written at the bottom of the page. Certainty freezes us in time. I don’t want massage therapy to become dusty and desiccated like those life-size dioramas that used to terrify me at the Natural History Museum.

Photo by Pixabay on Pexels.com

We are, like the bodies we work with, living and growing. We may be educated, we may be experienced, we may be confident — but I hope, for own future growth and the benefit of our clients, we never become certain.