Tuesday, November 13, 2018

I'm going on hiatus for a while, and will be back in 2019. . .

Greetings, readers! It’s been a while. In case you’ve been wondering why, I wanted to tell you what’s going on, and forecast what’s next for this blog.

I’ve actually been quite ill this year, starting with a baffling back issue that turned out to be a problem with my rib joints, to an acute lung infection, which then triggered a massive flare-up of previously-more-subtle health issues I’ve had my entire life and never understood why.

Finding out and coming to terms with why has been a difficult and time-consuming struggle, and through it I’ve learned a lot that I foresee will enable me to help other suffering people deal with their own hard-to-understand (and thus hard to come to terms with) health challenges.

It’s been a fascinating journey, and I look forward to sharing with you about it in 2019. In the meantime, I likely won’t write any more here in 2018, and will instead use the next several weeks to continue working on stabilizing my health, and also deciding what my new writing priorities are.

All the same things are still important to me; over the past several months, however, I have drastically changed the amount of physical presence and energy I devote to them, and thus my writing priorities have shifted accordingly.

For years now I have focused primarily on diversity and inclusion, from a variety of angles—including interfaith relations, race relations, and sharing cultural and religious spotlights from the Metro Detroit area that are overlooked by the mainstream.

I went from being a spiritual free-agent, to looking at all these topics through a Buddhist perspective, and even periodically turning my focus on integrating Buddhism with a more holistic view of health and wellness—meaning, mind/body/spirit/emotion as an interconnected system rather than looking at any one of these primarily in isolation.

Of these four components of health and wellness, the one I realized I have done the least service to in my own life has been the physical, and thus arose this long, drawn-out opportunity to create value for myself and other people by correcting this situation.

This is the largest personal turning-point I have reached since my Granddaddy died at end of 2014, which brought me to a spiritual impasse; and now, four years later, I’m seeing the need to completely recast my life again.

The primary difference this time is I’m carrying the same religion—SGI Nichiren Buddhism—with me into this new phase of my life, and I look forward to finding different ways of applying it to my life and to helping other people.

There are two ways I’m considering doing this. One is that I may decide to alternate among posting about different topics each week per month—such as health and wellness in week one, interfaith relations in week two, relationships in week three, and so on.

The second option is alternating topics each month—such as health and wellness in month one, general spiritual reflections through a Buddhist lens in month two, local culture spotlights in month three, and so on.

Until then, thank you for reading, have a great holiday season, and I look forward to infiltrating your screen-time again in the near future.


Image: "November Clouds" by Karla Joy Huber, 2011; oil pastel

Monday, October 8, 2018

Where to find your answers to questions about Native Americans--Just in time for Indigenous People's Day (which hopefully one day will officially replace "Columbus Day" on the calendar)

Native American traditions and stories are a challenge for outsiders to learn in detail because most of them have been passed down orally within the Native community, primarily through storytelling by elders to the youthnot written down in books or on Web pages that can be Googled.

That being said, there are a few good books and articles I’ve come across that give some authentic narratives about Native American experience, if not a complete picture.

Two particular books I recommend are Donald Fixico’s The Urban Indian Experience in America and the Michigan State University School of Journalism’s guide 100 Questions, 500 Nations: A Guide to Native America, both of which provide authentic accounts of contemporary Native American experience.

Fixico’s book focuses primarily on the experience and challenges of Native people who have left the reservations to try and “make it” in the wild world of the mainstream United States. The MSU’s guide, published by Read the Spirit Books, features common questionsparticularly those based on common misconceptionswith answers that the student-journalists got from Native Americans themselves.

Whatever books you decide to read, I do highly recommend you stay away from encyclopedia-style compilations and coffee-table books about Native Americans. Such books tend to be written by outsiders with little first-hand input from the people they are observing, and who don’t bother to submit their work to any cultural insiders for fact-checking and verification of if their presentation leaves the writer’s own cultural biases out of it.

A book about Native Americans as viewed and interpreted by, for example, a Catholic missionary or a mainstream white anthropologist who doesn’t even have so much as a single Native American friend, would be essentially useless, unless what you really want to know is how Catholic missionaries or white anthropologists view and think about Native Americans.

In addition to books, I’ve also come across some local news articles that are worth reading, such as this one and this one, both of which feature local Native community leader Sue Franklin as an interviewee. And, of course, no discussion of Native American contemporary experience is complete without the authoritative national powwow listing at www.Powwows.com.

Regardless of how authentic a book’s or article’s voices, however, the best way to develop a better understanding of people who are still alive and readily accessible to us in our communities—after all, the majority of Native Americans today live in the mainstream society, not on reservations—is to actually interact with them in person. The community-education programming of local intercultural and interfaith organizations such as the Interfaith Leadership Council, as well as local Native American organizations (some of which I list in my post here) are great resources for finding out where and how you can find opportunities for connecting with Native people.

I was fortunate to have one such opportunity last April at the IFLC’s “Ask A Native American” presentation at Unity of Royal Oak in April, where I learned some basics from presenters Sue and Chris Franklin from their specific tribes, as well as in general some of what makes Native religions and cultures distinctive from what the mainstream usually limits those two concepts to.

During the question-and-answer period following the Franklins’ presentations, Ric Beattie, Spiritual Leader & Pastor of Unity of Royal Oak, asked them for the most important lesson that mainstream (i.e., “white”) people need to learn to become better allies to Native American people.

Sue responded that her tribe’s Teachings of the Seven Grandfathers are a great place to start—particularly “respect,” she said.

The teachings of the Seven Grandfathers are bravery, humility, love, respect, wisdom, truth, and honesty—universal truths that are embedded in all religious traditions (regardless of the degree to which they are or are not currently practiced by people following those traditions).

Despite these ideas being common to all the major world religions, how individual cultures conceptualize and practice these virtues can vary, and sometimes may not even be recognizable as such from one culture to the next. For example, a lot of what people think is suitably “respectful,” “brave,” “wise,” “humble,” or “loving” in their own culture’s current practice can be perceived as less than or even opposite of that to another culture.

We see plenty of examples of this every day, from the mainstream news to private conversations in which some “good-intentioned” person asks a question that is just so ignorant or high-handed that it is incredibly offensive to the listener, when the speaker thought she or he was just being “honest” or that they were being “brave” in daring to ask such a question, and then is too defensive when called out on it to really be receptive to learning a more respectful, loving, or brave way to communicate with people whose ways are unlike their own.

Our concepts of virtues and what is socially and morally acceptable also varies when we take into account that some Native tribes are matriarchal (led by women), some patriarchal (led by men), and some more egalitarian (now if not historically). As we are all so painfully aware, what is considered good or just or moral in a misogynistically male-dominated, materialistic, militaristic culture like what the United States is struggling with so much right now is very different from what would be considered virtuous by a community in which women have half or most of the say in passing legal and moral judgment, and in determining how the society responds to threats of violence from outside its borders.

Speaking of militarism, I found it particularly fascinating that even military service has a different connotation and purpose for Native men than it does for mainstream North American men. Native Americans have always been heavily represented in the U.S. military, which for them more or less equates with the role of “warrior” in centuries past. To Native people, however, a “warrior” (or “soldier” in today’s language) is not someone who finds glory in being deployed on domestic or foreign soil to conquer some other people who are perceived as a threat or who have resources that they should be made to feel obligated to make available to the more powerful and high-maintenance nations. In Native custom, a warrior’s role, then as now, is to protect women and children, not to fight nation to nation for the sake of one side winning and the other side losing.

There is so much more I could say based on not just this presentation but on the years I was actively engaged with southeastern Michigan’s urban Native American community, and I may yet present more of this in the future. For now, I’m going to turn my spotlight next onto the contemporary Jewish community, based on my reading of Debra Darvick’s book This Jewish Life.

Image: Native Dancer from Cirque du Soleil's "Totem," by Karla Joy Huber, 2012; Prismacolor marker, Sharpie marker, white gel pen

Tuesday, September 18, 2018

Please do not assume anything about the Native experience -- Even innocent assumptions can be incredibly harmful to disenfranchised communities that are struggling to have their real voices heard

Most of the mainstream attention on issues of race today revolves around immigrants and the African-American experience. While this is obviously understandable and necessary, there is still a great need for bringing the concerns, history, and voices of Native Americans into the current public discourse about race-related social justice in North America.

Previously, I explained what I learned from Sue and Chris Franklin about why Native people are still for the most part under the mainstream radar. After that, I described in more detail some of what these two community leaders shared about the contemporary traumatic experiences of Native people, as well as some basics regarding Native American culture, spirituality and worldviews.

Following up on that, the logical next point to make is that the plight of contemporary Native people is not as simple as just “blaming” mainstream North American society for what it did to them.

For twenty years, in many if not most of the social, faith, and work groups I’ve been part of, I have been the most Native person in the entire group. I thus became the “token” who was looked to for any answer I could give to their questions about Native Americans—ranging from the most respectfully innocent to the most stereotypically insulting.

While I appreciate that people want to know answers about Native people, and obviously not all such people are bigots who intentionally keep Native people out of their communities, I’ve always found this situation uncomfortable. It really says a lot about the social disenfranchisement of Native people that an ethnically mostly-white person, who was raised white, and who has ancestry and an affinity for Native culture that she has to date only explored through connection with the local Native community consisting of tribes that her ancestors did not come from, is the most exposure that these people have had to anything or anyone with any direct and authentic Native American influence in their life.

For anything other than the most basic inquiries, I have been transparent with such people that I am not actually the best or most appropriate person to answer such questions. That being the case, they then naturally ask, What about books?

There are a lot of books out there about Native Americans, most of which are written from outsider perspectives. One of the biggest challenges for learning about Native American teachings from authentic sources is that most of the social, cultural, and spiritual wisdom has been passed down orally, not compiled into books that would serve as the Native American equivalents of Scripture. The languages, too, are oral: most of them have never been written down in any form. 

This being the case, I tell people that the best way to learn about Native Americans and their cultures is and always has been from Native Americans themselves—through forming authentic friendships with Native people, through attending events hosted by tribal members that are open to visitors, and through programming such as the Interfaith Leadership Council’s “Ask A…” series event that Sue and Chris Franklin presented at in April.

In the absence of any immediate opportunities for such first-hand experiences, my advice to such information-seekers is to please not assume anything about the Native experience. Even innocent misconceptions can be incredibly harmful to disenfranchised communities that are struggling to have their real voices heard, and whose attempts are frequently strangled by people who think they are being inclusive or helpful simply because their “intentions are good.”

I wrote previously that, when it comes to removing obstacles to true diversity-and-inclusion-supporting dialogue, our intentions are often irrelevant compared with the impact our words and actions have on the people we think we are accommodating

Previously I stated that this was going to be a three-post series, and now I realize I do still have one more. Now that I’ve shared with you about some of the biggest challenges to social justice that Native Americans still face today, in my fourth and final post I’ll describe some examples of how Native culture is still very much alive and thriving today in many ways that predate (or have only been somewhat altered since) the influence of the dominant society that evolved out of the cultures of European settlers. 

Image: "Fancy Shawl Dancer #9" by Karla Joy Huber, early 2000s; Marker, crayon, colored pencil

Monday, August 27, 2018

If we really think about what we usually mean when we say "primitive," Native Americans are far less primitive than what passes for normal in today's mainstream

Last week I wrote about some of the biggest challenges facing contemporary Native Americans, especially those living in urban communities in the midst of the larger North American mainstream.

At their “Ask a Native American” talk hosted by the Interfaith Leadership Council, Sue and Chris Franklin also gave some personal narratives and basic teachings of their tribes that help demonstrate why the heritage of Native people is worth fighting for and preserving despite these heartbreaking challenges.

One of the many fascinating takeaways I got from their presentation was the idea of “blood memory.” As Sue described it, tribal members inherit memory passed down through the generations, which can still be seen in the intuitive behaviors of youth in the Native community who do certain things without having to be taught—such as respecting and assisting elders.

Outside the Native community, any kind of blood memory has long since been bred out of most people. If a person represents two or more ethnicities, as I do, whose blood memory would we have? Probably no one’s, because there’s no way for potentially-conflicting teachings to not cancel each other out at some point.

This is why mainstream North Americans can’t relate to (and many have trouble believing) in this phenomenon, and why they don’t understand why trying to forcibly mainstream Native children is so traumatic. (Imagine a psychic, emotional, and spiritual equivalent of cutting off their feet and telling them to learn how to walk as well as before on just the bare ends of their ankles. Yes, it really is that bad; I’m not just being overly dramatic.)

There are a lot of “romantic” stereotypes about Native Americans, most of which include depictions of them as “primitive” and worshiping trees and animals as some form of nature-based paganism.

The truth is that Native people are monotheist, just in a different way than Christians, Muslims, and Jews are. Native people’s reverence for different aspects of the One Creator, by different names, is more comparable to how Hindus (another group often misunderstood to be pagan) worship. The traditional Anishinabek greeting “Boojoo”—which loosely translates as “Are you here?”—is even reminiscent of the concept of “Namaste,” which is acknowledging the presence of the divine in others we meet.

Native people view Creator more as The Ancestor, and humanity as Creator’s grandchildren. As I've always seen it, Native people's parental view of Creator seems to foster a more familial and love-based spirituality than the king-god of European monotheism that I've always been so ambivalent about.

Native traditions vary by tribe, and have always been far more sophisticated than history books and mainstream North American thinking have ever given them credit for. By comparison, in fact, much of our mainstream is actually far more primitive. While our modern society is based on profit, greed, getting ahead at the expense of other people, ruthless competition, the exploitation and derision of women, and having a sort of love-hate ambivalence toward the next generation, Native people start with a concept of power that equates with responsibility, not with stand-alone status or advantage over other people.

Wealth is also viewed as a source of great responsibility, not something to be hoarded and used to make us feel more important as human beings than those who have less material resources.

If you’d come to this continent “5,000 years ago,” Sue said, “children were the most precious resources, and women were held in very high regard,” compared with what we see now“and you [mainstream society] have the nerve to call us savages.”

The subject of North America’s indigenous people is so dear to my heart that I want to do one more post on what I learned at this presentation, rather than try to cram it all in this one or cut a lot out. Thus, I’ll do a third post within the next week or two. This next post will go into more detail about spirituality, how the plight of contemporary Native people is not as simple as just “blaming” white people, and helping to clear up some more of the dumb misconceptions we amazingly still need to put effort into refuting even today.

Stay tuned, and thanks for reading.

Image: "Bracelet from John," by Karla Joy Huber, early 2000s; colored pencil

Wednesday, August 8, 2018

Want to know more about Native Americans? Instead of asking “Who were they?,” the correct question to ask is “Who are they?”

When people want to know more about Native Americans, the question usually goes something like, “Who were they?”

While sounding like an honorable inquiry, this question itself demonstrates a huge part of the problem—by referring to indigenous Americans in the past tense.

The truth is that there are twelve alive and active federally-recognized tribes and reservations in Michigan alone, according to Sue Franklin, Executive Director of South Eastern Michigan Indians, Inc. (SEMII). At the invitation of the Interfaith Leadership Council’s “Ask a...” series, Sue Franklin and her husband Chris Franklin, Chair of the American Indian Veterans of Michigan, gave a great presentation about some basics of both the contemporary and historical context of Michigan’s indigenous people.

Hosted by Unity of Royal Oak, the purpose of the presentation was to answer the questions that people are actually asking, rather than give a cookie-cutter historical lesson about tribal customs or beliefs. While Sue and Chris Franklin speak from their tribal perspectives of Anishinaabe and Oneida, respectively, their biographical anecdotes and answers to our questions gave valuable insight into many of the shared aspects of the contemporary Native American experience, which too few people actually know or understand.

For starters, there is the misconception that Native Americans are either extinct, or too few in numbers to justify any cultural accommodations for them in current society and public policy.

The challenge, Sue pointed out, is that Native people aren’t accurately reflected in the census records because Native people have very valid historical reasons for not self-identifying on the census.

While these reasons are about self-protection, the downside is that since so many Native people have made themselves “invisible” to the government, the government sees no need to provide more funding or public policy consideration than it does to them and the organizations that serve them, such as SEMII, AIHFS, American Indian Services, and NAIA.

So why exactly are Native people still so secretive and so “angry”? I’ve heard many people ask—just as they do about black and brown people—why Native people don’t just “get over it” already and get with the mainstream times. The reason is that the historical trauma of Native people is not old history at all—The institutionalization of violence and cultural oppression against Native Americans didn’t even officially end until 1980, with the discontinuation of the government-sanctioned program of abducting Native children from their parents and sending them to “Indian Schools” designed to forcibly remove their culture (click here for an excellent documentary on the subject) and language and make them like mainstream white children.

(For an excellent personal narrative that touches on this dark period of American history from a Michigan Native perspective, I highly recommend Warren Petoskey’s Dancing My Dream, which I blogged about here.)

When you think about it that the last group of those children are in their 40s and 50s now, and still dealing with the PTSD of their traumatic early experiences, the Native community has a long way to go before such trauma can be considered healed and no longer an active part of the present generation.

According to Sue Franklin, such historical trauma takes seven generations to heal. Thus, Native people are still only one or two generations in, not several like people assume because they’re thinking only of what Native people endured hundreds of years ago.

Complicating the recovery process for people directly affected by the institutionalized violence and brainwashing attempts is the fact that, until 1978, Native spiritual practices were not even legal in the United States. Native people did not have the freedom to use their religious faith to help them heal, which is something that no Christian or “spiritual but not religious” person in this nation ever had to worry about, and thus can’t even adequately imagine.

(This is why I get so furious when I read about conservative Christians' calls for what they inappropriately call religious liberty reformFor a great critical analysis of that travesty of justice, click here.)

Since we can’t even imagine such experiences, or the time frames such healing takes, no one outside the Native community has any right to assume, suggest, or otherwise impose their ideas on Native people.

Just like I spent much of this year writing about black and brown people not wanting the white-dominated society around them telling them what their experience should be, Native Americans need to be allowed to do their healing and tell their stories how they see fit.

Next week, I’ll give more details from what Sue and Chris Franklin shared about their experiences of doing just that.

Image: “Archetypal Dreams” by Karla Joy Huber, 2008; Sumi ink, Prismacolor marker, Sharpie marker, metallic silver Sharpie marker, highlighter marker

Wednesday, August 1, 2018

Dialoguing with people unlike us doesn’t have to be so hard—Which Debra Darvick and the MSU School of Journalism are proving in unique ways

For the past several months, I’ve written about intercultural and interracial reconciliation, particularly regarding open and honest dialogue about these sensitive topics. Not only do we struggle with dialogue about sensitive topics, we struggle with open and honest dialogue, period.

At one of the most recent Michigan Professional Communicators interfaith networking meetings I attended, blogger and self-proclaimed “conversation catalyst” Debra Darvick pointed out that this has a lot to do with our electronic culture. “The cell phones are taking over,” she said, and pointed out that there has been a proliferation about “kids growing up with screens” within the past half decade.

Rather than just complain about this like a lot of us do, Darvick decided to try some innovative ideas to get people connecting more in person again. “Scientists are finding when you talk face-to-face, you feel better,” she said; and to help facilitate that benefit, she and her husband decided to create the “Picture a Conversation” cards.

With the tagline “Text less. Talk more,” the conversation cards are not a game such as the Un-Game or Cards Against Humanity. Instead, they are designed to help people in situations where conversation tends to stall, or never gets started in the first place.

The cards each feature a beautiful picture on the front, and conversation-starting questions on the back. Darvick and her husband have also hosted “conversation events” using the cards.

Darvick has also shared her unique approach to dialogue with social workers and businesspeople. She seeks to “give people the experience of looking face-to-face, talking about things that matter,” while “putting away cell phones.” Aiming to “help people reconnect in conversation,” she starts the events by speaking for about twenty minutes, then turns the conversations over to participants. People feel awkward at the very start, but then they open up, laugh, talk, and hold hands, “and remember what it was like before cell phones.”

Another great new resource for starting conversations, especially with people we feel are very different from us, is the abbreviated hand-outs the MSU School of Journalism is creating based on their 100 Questions and Answers cultural literacy series, which includes books that each concisely answer the 100 most common questions asked about a heavily-stereotyped cultural group, such as African Americans, Arab Americans, Indian Immigrants, Latin American and Hispanic people, East Asians, and American Jews.

At the time of that MPC meeting, the team had produced an 8 1/2” x 11” two-page handout featuring ten questions and answers from the book about Muslim-Americans. The plan is for this to be the first of many such handouts, which can be excellent resources for helping us feel comfortable starting conversations with people of a group we would otherwise worry about offending or appearing ignorant in front of, because we just don’t know where to start getting answers to their basic questions.

When I learn more about the availability of this new resource and which books have a two-page quick sheet so far, I’ll share that with you. In the meantime, I encourage you to check out the books themselves, which you can find links to and read more about by clicking here and here.

MSU School of Journalism professor Joe Grimm reported that the team wants to focus for a few years on doing 100 Questions and Answers books about different religions, starting with Chaldean-Americans. Read the Spirit founder and MPC meeting facilitator David Crumm suggested a book about Sikhs.

In addition to giving stereotype-busting exposure to certain religions, also in the team’s queue is a guide about gender-identity, then one about sexual orientation—which, though they have similar challenges, are actually two different things, Grimm pointed out. After that, “Millennials,” “Generation X,” the police, and human trafficking are up for consideration.

Grimm reported that the team is always open to suggestions, which they prioritize based on the timeliness of concerns facing particular groups (such as groups currently experiencing an uptick in negative media depictions or hate crimes).

I personally would like to see a guide about Buddhism, and be one of the contributing panelists so I can make sure it gets in there that Buddhism is indeed a religion (which even some people in the interfaith circle don’t acknowledge unless I correct them), and that there are as many different forms of Buddhism as there are of Christianity—which are as varied and even potentially contradictory as the various versions of Christianity. 

Image: Detail from “Nothing Without Love” by Karla Joy Huber, 2016; Prismacolor marker, Sharpie marker, white gel pen, gold gel pen

My experience is the most important thing, regardless of whatever clinical names best match it...

When people have asked me why it’s been so rare that they’ve seen me this year, I’ve replied that I’ve been sick all year. Naturally they’re alarmed, and ask me with what and why.

Responding to this question has posed quite a challenge. I’ve always been private about my own health, and am reluctant to engage in discussions about intensely personal medical struggles, sometimes even with close, intimate friends.

This being the case, I decided that concerned friends, acquaintances, family-members, or coworkers may be better served by reading at their leisure, as much or as little as they want to, about my experience here. Also, some of the most helpful online resources I’ve found to introduce people who’ve never heard of Ehlers Danlos Syndrome Hypermobility Type (hEDS) or Postural Orthostatic Tachycardia Syndrome (POTS) to the clinical particulars of my situation are here, here, here, and here. Additionally, while the writer of the post at this link has lupus and not hEDS, what she says about social and energetic self-management applies just as well to me in my situation.

There are probably many others out there who, like me, have struggled to share their experiences about the hard-to-describe health issues that for years have slowly been eroding their quality of life, because they didn’t know what to say without leaving themselves open to misunderstandings and bombardment by people’s judgment, revulsion, or uninformed and unwanted advice.

Our social conditioning is that if we don’t have answers—and, in my case, clear-cut medical justification—to explain our situations, then the validity of our situations, and our personal credibility, is doubted. So, rather than subject ourselves to more distress and embarrassment because we ourselves are still struggling to understand why we are the way we are, we keep silent, until our distress and lifestyle modifications become conspicuous enough to other people that we must say something.

Regarding my reference to clear-cut medical justification, I have not yet received a formal diagnosis of what I know I have, and likely won’t for some time (if ever) because, with or without medical insurance, it could cost thousands of dollars over months or even years just to confirm for me what I already know about myself. Thus, until further notice, I’ve chosen to spend my money instead on taking action that does help me feel and function better: Nutritional supplementation for my identified deficiencies, massage therapy, and flotation therapy, for starters.

All that being said, I’ll give you some particulars about my experience to put all this in context. The physical characteristics included under the diagnosis hEDS represent a body type, with certain functional deficiencies built in to it. There is a huge difference between a medical disorder or disease, and a body type. These characteristics cannot be “cured” or reversed—because they are part of how my body itself is made, from the beginning—not issues that developed over time in response to what I was doing or not doing.

The physiological common denominator of all my health quirks is my connective tissue, particularly its essential protein collagen, which is not produced and managed properly by my body. Since there is connective tissue all throughout the human body (not just that which connects soft tissues to bone), the particular symptoms and deficiencies stemming from this root problem are literally all over my physiological and neurological map—my tendons, joints, veins, nerves, digestive system, and so on. Since my connective tissue for all these components is more rubbery than supportive, all kinds of systemic issues occur, sometimes without any prior warning even if I had been feeling stable just moments before.

These characteristics are “defects” only as much as they lead to troubling symptoms, which for me are as severe as they are because I went well over thirty years of my life trying to follow “one size fits all” conventional guidance about exercise, lifestyle, healthcare treatment, and nutrition, and worked many years at physically-demanding jobs, because I did not know any better—and neither did anyone else around me. 

After all these years of trying to comply with conventional guidance—particularly regarding high-impact exercise, not shying away from hard physical labor, and ever-changing dietary recommendations—instead of being physically stronger and healthier for all the effort I put in to being so up until my mid-thirties, on my worst days I now feel like I have the joints and equilibrium of an 80-year-old.

Now, the more I try to do what I did even a couple years ago, and keep up with the people I was keeping up with back then, the harder it gets for me to bounce back, to have longer periods between symptom flare-ups, and the lower my tolerance for such external factors as hot and cold extremes, crowds, loud noises, sleep deficits, flashing lights, day-long activities, consecutive days of intense social activities, very low pain tolerance, skin hypersensitivity, and so on.

If you are wondering what those factors have to do with connective tissue, the answer is that the nervous system too consists of connective tissue. Thus, my nervous system has a harder time buffering any extremes and it takes very little to make me trip into overload and have to exit the situation immediately lest I have a panic attack or have to stay home like a hermit for the next two or three days.

In addition to all that, I have episodes of chronic inflammation due to my body's inflammatory response mechanism not self-regulating properly, as well as trouble regulating blood pressure, heartrate, and breathing when transitioning from sitting or lying down to getting up. My body has to work a lot harder to do these supposed-to-be completely automatic functions, so on my low days that means I have that much less energy for what I really want to use it for, like getting things done, being more involved with other people, exercising, and so on.

Now, a brief word about digestive sensitivities: My reluctance to be adventurous in trying new foods is not because I am simply a creature of habit or do not want to step out of my comfort zone; I eat what I know works for me, and I stick with that. Period. If I decline to try a delicious dish you just made or a great new restaurant, please leave me be.

Because of all this, I do naturally need more rest and time away from intense stimuli than most people I know, because my nervous system has a lower maximum tolerance than theirs before it short-circuits and leaves me unable to think, keep up a social interaction, stay focused long enough to accomplish a task, or ward off an overload-induced panic attack. Therefore, while it can be inconvenient for other people, I must opt out of participating with them more often than I (or they) would like. It is not that I do not want to attend Kosen-Rufu Gongyo, or go to a Sunday afternoon bazaar, a dinner party, or make more than a cameo appearance. On the contrary, my absence or premature exit is because I know that the energetic price I would have to pay is too high considering what I already did that day or week, or need enough energy to do next.

As I said earlier, my situation is as challenging as it is largely because of mainstream lifestyle and health guidance backfiring on me—thus, trying to follow more mainstream guidance that works for “most” people will certainly not improve any of this for me. Trust me, I have heard it before, and it does not work for me. While yes, regular (low-impact) exercise and healthy eating patterns help, and my lifestyle modifications, massage and flotation treatments, and gradually nutritional changes are gradually making as much improvement as any course of treatment can for me, there are always inevitably times when even these efforts cannot bridge every gap and I end up crashing for a while.

The reason I am telling you all this is not because I want your sympathy, or advice, or strong reactions. Please do not strongly react. Please do NOT offer me advice. If you would like to know more about my experience, I am open to questions, as long as they do not start with “Have you tried…”, or “You should,” or “What if you…” I have done extensive research, a lot of trial and error to prove to myself what helps and what doesn’t, and am now attending a support group for people with connective tissue disorders who are providing me with resources and tips that are specific to my condition. Thus, I am simply not open to any unsolicited suggestions. Period.

What I do want from you is your respect and trust that I am managing my situation as I need to already, and your acceptance of me as I am (quirks included). I will do the same for you.

Thank you for taking the time to read this. 

Image: “A Ship to Cross the Sea of Suffering” by Karla Joy Huber, 2016; Prismacolor marker, Sharpie marker, and silver Sharpie on marker paper