Photo from noonmeasure9.com
The year was 1992; I was a Senior at Canby Union High School, in the outer burbs of Portland, Oregon. The desire to escape all that was high school and the town of Canby tore at me, like a gust of wind rips the leaves from the branches of a tree, on a cool fall day. As a queer teenage girl, I was fighting an internalized storm of grand proportion, while the LGBTQ community was at war with Ballot Measure 9, authored by Lon Mabon of the Oregon Citizen Alliance.
The friends I had in high school were a diverse group of people, and not one of them had come out openly as being queer. In fact, the word “queer” was a hateful slur used by homophobes to degrade teenage males who showed any feminine qualities and didn’t quite fit in. It often was followed by the words “faggot” or “pansy” or “pussy”, which was a male’s way of telling another male that they believed they were “weak” like a girl. The word queer also had the unfortunate luck of being ascribed to socially accepted elementary school playground games, such as “smear the queer”.
I told myself many times that fall of high school that this was not the time to “come out of the closet” to my devoutly Catholic parents. However, I certainly didn’t want to sit around and not declare my support for the No on 9 campaign. The question was, how to do so without giving up my queer identity to the wrath of haters coming out of the woodwork.
I was never a rule follower, so going against the wishes of my parents wasn’t the issue as much as fearing for my safety was. It only took a trip to Portland with my friends to find that little pin for my backpack that wasn’t entirely truthful, but was as close as I could get while keeping my sexual orientation hidden from others.
Ballot Measure 9 was a hateful measure that would have demonized the entire LGBTQ community in a government sanctioned way, blending religious belief and law. It would have made it legal to tell someone who identified as LGBTQ that they were perverse, unnatural, and wrong. They also grouped together anyone who was labeled a homosexual, pedophile, sadist, and masochist and said the government could not promote or sanction such behavior.
There is a huge difference between a person’s sexual orientation and being a pedophile, sadist, or masochist. When the word homosexual is included with identities like pedophiles, for example, it sends the message to people that if you are a homosexual, then you are also a pedophile or deemed as having the same social status as someone who is attracted to children. Reading the contents of Measure No. 9 all these years later still feels like someone just punched me in the gut. There was so much hatred pointed towards a group of people that were simply trying to honor their authentic self.
Although my parents still do not know that I am queer, many fights occurred between my father and I that permanently damaged my relationship with him (that was already destroyed for the most part). On one particular day, I remember having an argument with him, and him telling me that being anything but a heterosexual was an act against God and the Catholic religion. I don’t remember responding to him other than to tell him that he was narrow minded, that I hated him and then I left the room. It was difficult enough being a teenager, and the thought of coming out to anyone was terrifying for me.
I know that trauma occurred across the LGBTQ community, and had lasting effects on many people from that campaign. However, there were a lot of people who stood up to fight against the passing of a measure that would hurt so many people. To me this shows the power that people can have when they band together to condemn hatred and work towards a more just world. There were protests, Nirvana put on a concert at Portland Meadows to show solidarity and fight against ballot measure 9, and people began to see the LGBTQ community as people and not the threat that the Oregon Citizen Alliance and Lon Mabon wanted them to believe.
Top left: No on 9 protesters – collectiveeye.org
Middle left: No on 9 protesters – Basic Rights Oregon
Bottom Left: Rural Organizing Project flyer – ruralorganizingvoices.org
Top Right: Article about Nirvana concert – The Oregonian
Bottom Right: Nirvana at the 1993 MTV Music Awards with RuPaul – from left to right – Dave Grohl, RuPaul, Krist Novoselic and Curt Cobain – Hornet.com
I have always felt like the 90’s were a time of contradictions. Grunge music was growing in popularity, punk was still firmly planted in the culture of young adults, and Generation X people, myself included, were no longer willing to ascribe to the ideals our parents had shoved down our throats during our childhood.
It was a time of rebellion, which is probably why there was also so much push back by people with conservative religious values and ideals. In their eyes, our rebellious behavior was a threat to their way of life. This was also when our government began funding the police and prisons to a degree never seen before and when redlining began to force entire communities of color out of their neighborhoods.
I am grateful that Ballot Measure 9 did not pass. Yet, I am sad to say that it wasn’t by a landslide.
Table at right from Blue Book Oregon
Much has changed over the past 28 years; I have come out to my children, my friends, my therapist, my doctors, my professors and even some of my family members with overwhelmingly positive responses of love and kindness from all of them. I hid that part of myself from the world until I began to work with my therapist 6 years ago. It wasn’t until 2018, in the fall term at PSU in my Race, Class, Gender, and Sexuality course that I openly shared with the entire classroom, on the first day of class, during introductions, that I am queer.
This was a big step for me and that evening, as I wrote in my journal, I thought a lot about why it had taken me so long to come out to the world. Yes, there is still discrimination that occurs against the LGBTQ community in Portland and across the US; yet, I know that it is much safer now than it ever has been to be open about my identity.
I now understand that my hesitancy stemmed from fear, a fear that led all the way back to the year 1992 when people were being vilified because they weren’t a heterosexual person. It took me 24 years to find the courage to push that fear away; one that was planted all those years ago by hate. Imagine how many other people are still living in fear from the trauma that campaign caused, a community wide inflicted trauma.
As a social worker, and an empath, it’s not easy to watch the people in my life and those in my community become so divided on an issue, that on the most basic level is about honoring people, celebrating diversity and believing that people, regardless of where they were born, what race they are, or how much money they make, deserve a life of dignity.
I can’t begin to fully understand the reasoning behind the divisive and hurtful behavior happening across the United States. That’s not to say that I don’t know why it’s happening, because I have a good idea; the behavior just doesn’t align with my values and who I am as a person, so wrapping my head around it feels difficult.
That being said, I also recognize and want to acknowledge that a person’s lived experiences greatly shape the lens they view the world through and the assumptions they make about the people around them. Often times those ways of thinking and being are also shaped by the media, geographic location, and the people they spend time with. This can create a singular story about entire groups of people and their communities. The inability to see the world from many perspectives can divide people and create an “us versus them” mentality. This way of thinking leaves no room for nuance.
Right now, in the United States, an “us versus them” mentality is bleeding though society in a way that many white people have never experienced before. The murder of George Floyd was the tipping point in a fight that has been going on for longer than many of the young people protesting have been alive. Black, Indigenous, and people of color (BIPOC) have been living the fight across generations.
From time to time something happens to a person of color that infuriates enough white people to draw attention to the inequities that the BIPOC community experiences every day. Conversations are happening that have long been swept under the carpet within the white community, exposing their privilege, which produces shame, and sometimes defensive behaviors.
“Thousands of people lay down on June 2 on the Burnside Bridge for 8 minutes and 46 seconds in remembrance of George Floyd, who was killed by a Minneapolis police officer”. The Oregonian. Ariel photo by Andrew Wallner.
The Black Lives Matter protests that followed the death of George Floyd at the hands of police occurred around the world, as demonstrated in the collage I put together, showing solidarity in the belief that the recognition of Black lives having value is long overdue. Protests happened, some in small numbers, while others contained thousands of people; they were overwhelmingly peaceful, powerful, and often awe inspiring.
I began to wonder if this time around the Black Lives Matter movement would open people’s eyes to the intimidation, fear, violence, and death that Black people experience in the hands of the police every day. I can honestly say that many white people I know have started listening to learn and began acknowledging that they have advantages because of the color of their skin that is totally foreign to BIPOC.
On the other side of the spectrum, I know that many people, even some in my own family, have done everything in their power not to sit with the discomfort or acknowledge that what is happening around them is factual and cannot be explained away regardless of the many judgments they place upon BIPOC. They see the protesters in Portland in one way; they are rioters destroying “their” city, one that not even a single family member of mine lives in (other than me).
I hear statements such as “ya know, I saw a Black man on YouTube denouncing the protests, saying that Black people can no longer use slavery as an excuse” or “they are criminals because they riot, steal, and deface property” or “the protests are bullshit” or “the protests should stop because not everyone agrees with them”. They see videos on television and photo’s on the internet that depict the side of the story they seek out, or the side of the story that the news channel they watch highlights. They only see one side of the story and for them that story is the truth and the only truth.
Top: Getty Images; middle left: Dave Killen/The Oregonian via AP; middle right top: KPTV; middle right bottom: John Rudoff/AP; bottom: Stephanie Keith/Getty Images
This singular story, the one that white people who hold power want to tell, is creating divisions that may never heal. At first I fought tirelessly to create a bridge between the divide, offering perspectives that some may not have thought of before; but no more. I can put my energy into trying to break down the singular story one person at a time, or I can let it go, and use my abilities to stand alongside people of color, asking them what they need and how I can support them to get there.
For me, engaging in never ending battles with people who refuse to accept that people are more than a singular story simply isn’t worth my time. Community means a lot to me, just like family does; sometimes our families and communities are ones we create or become a part of, not the ones we are born into.
Collage Photo Credits:
– Nairobi, Kenya (Fredrik Lerneryd / Getty Images)
– Rio de Janeiro, Brazil (Mauro Pimentel/AFP/Getty Images)
– Maastricht, Netherlands (Reuters)
– Sudan (Ashraf Shazley/AFP/Getty Images)
– Dakar, Senegal (Sylvain Cherkaoui/AP)
– Krakow, Poland (Reuters)
– Nairobi, Kenya (Baz Ratner/Reuters)
– March on Washington (Hulton Archives/Getty Images) & Harlem, New York (David “Dee” Delgado/Getty Images)
– Tunisia (Getty Images)
– Idlib, Syria – Artists Aziz Asmar & Anis Handoun (Reuters)
– Piazza del Popolo in Rome, Italy (Reuters)
– Mexico City, Mexico (Reuters)
– Berlin, Germany (Sean Gallup)
The world feels very dangerous right now; people in power are doing everything they can to create hate in an attempt to divide us, perpetuate fear, and ultimately induce a sense of hopelessness. This is the perfect mix of ingredients necessary to drive my depression into a dark space and produce an intense state of tribulation. It is not a secret that I struggle with my mental health, because I want it that way. I made a conscious choice five years ago to no longer be ashamed of what years of other people’s abuse brought into my life.
It wasn’t until four years ago that I first learned about intersectionality in a Women’s Studies course. My intersecting identities create a different life experience for me than for the person sitting next to me in class; this is true for each of us even without considering intersectionality, because perception also has much to do with the truth of our reality.
When my feelings become more than I can bear, I find that art, music, writing, and meditation are effective in at least subduing the distorted thoughts that are ruminating in my brain. I typically start with writing, then turn on some tunes, and then move on to meditation if neither of those work to quell the thoughts. If all else fails, I pull something out of my wide array of art supplies and begin the work of letting my hands guide what they create.
When I am in the darkest of spaces, the medium of choice is always clay. There is something about feeling the coldness of the earth pass through my fingers, press into my palms, and then mold into an unplanned object reflective of the feelings that calms me. All those feelings that are sitting deep in my soul, stuck there, trying desperately not to creep to the surface and emerge as anger, slowly begin to let go.
I know my pattern; I discovered two years ago that the secondary emotion of anger sits deep in the pit of my belly, and takes the form of anxiety on the outside, often in obsessive compulsive patterns of behavior that give me the illusion of control and ease the discomfort. For me, anger is not a safe emotion. When my ex-husband was behaving abusively, I initially fought back, which only enraged him more. I learned that forcing the hurt I felt deep down was a much safer way of dealing with his rage.
Working with clay has helped me to allow those deep-seated emotions to rise towards the surface, so that I can address them with my therapist. In many ways, clay has helped me express myself when I couldn’t find the words, or when something was blocking me from accessing my emotions. It has been quite awhile since I had to pull out my clay.
This past week though I have experienced an overwhelming sense of doom when I am still and not distracted by my obligations in life, though I know that they are contributors to what I am feeling. The clay figure posed next to my guitar that hangs from my wall, sits head lowered, arms wrapped around their legs, facing away from the music that typically fills my soul and brings so much peace and joy to my life. Right now, the struggle to find the light feels gravely difficult, if not impossible and this piece I created directly reflects those feelings.
The intersections of my life and how they play out greatly contribute to that sense of doom. I am a white, cis gendered, queer female who is middle aged, divorced, has disabilities, lives with mental illness, is poverty stricken (yet passes for middle class), and finds my spiritual practice through Buddhism. I am tattoo covered, outspoken, free-spirited, open-minded, resilient, and a lover of all that lives free. I have a family that is challenging, often alienating, and includes some members that I have created distance from.
However, I have much to be grateful for: my children that I love; a service dog, a cat, and a kitten that bring laughter into my life; a competent and caring support network of providers; and some very amazing friends that love me and accept me for me, the authentic me, even when I’m depressed, and struggle to find a reason to live. They all hold hope for me when I am unable to find even a sliver. They lift me up and help me to rise when I have fallen. They wash away the darkness with a hefty dose of empathy and love that destroys that overwhelming sense of doom, doing all it can to drag me down into the darkest of spaces.
The darkest thoughts are no match for the love of others that I have chosen to be in my life. Many of those I am closest to came into my life through happenstance when I least expected it. They stomp out the doom and shine light into every crevice of my soul. Love of others, love of myself, and love of the earth that I inhabit fill me with joy, move my feet to the beat of music, and help me to appreciate the importance that each moment of simply being is.
There are many people in this world that have a complex array of intersecting identities, life experiences, and trauma that greatly affect the way they walk through their life. As a social worker, my hope is to be able to support people as they work though their darkest of moments, helping them to find the light and hold hope for them when they cannot find it, just as the most important people in my life have done for me. I feel prepared and also know this will come with many challenges; acknowledging the importance of a person’s identities and listening to learn will be crucial to my work as a therapist and helping people find their path towards healing.
The wonder that I experience while watching a butterfly effortlessly glide through the sky escapes words. I’ve been drawn to these magnificent creatures since I was a young child, and would often chase them through my yard, hoping that one would find me desirable and land gracefully upon my finger. Butterflies are free, and the arduous journey they take on their quest to emerge from their chrysalis, having transformed into a butterfly, is quite remarkable. Maybe that’s why I am so drawn to them, because they’re not only beautiful, but they’re also survivors; their freedom is their reward.
My journey has taken me many years and the path towards self-actualization and transcendence will take as long as is necessary. There are no guarantees, but I do hope that one day I will truly find that space. My life rarely moves in a linear fashion, as the universe has taken me on many wondrous adventures, planting me in the space I fill now. People have come in and out of my life, time has moved more quickly than I desire, I’ve fought more battles than I care to think about, and I have survived; every single moment over the past forty-five years has helped to mold me into the person I am today.
Not long ago I had a conversation with my therapist, about the person I was when I walked into his office the first time on July 1, just over 6 years ago. I was doing work related to trauma and my body, and where I feel different emotions; as I sat there struggling with my emotions, I suddenly remembered that when I began my work, I was entirely numb, physically and emotionally. I asked him if he remembered that version of me sitting across from him, scared to feel anything, not knowing what it may do to the empty shell of a person that years of interpersonal violence left me walking in.
He acknowledged that experience and how much work I have done growing into the person I am now. That is true, and I know that I would not be where I am today had I not been fortunate in this world to have done that work with him walking along side me, supporting me, holding me accountable, re-framing my negative self-talk, pushing me to believe that I had worth, and helping me find my way back to my emotions. His ability to come from a place that lacks judgement cultivated a sense of trust that I didn’t know existed. He saved my life and helped me to find that free-spirited, queer, intelligent and outspoken woman that I am today.
I know that the work I do as a social worker will absolutely be shaped by the experience I have had in therapy; without even knowing it, he has been my mentor and someone that I admire professionally for many years. The material that I continue to acquire in my master’s courses deepens my knowledge and strengthens what I have learned through my life experiences as a survivor of extensive trauma and managing chronic health conditions. I have been told by my therapist, and the medical providers in my life that I am an excellent advocate for myself, because I insist that I know myself better than they do and don’t let up when I don’t feel heard.
This is what I know for myself, and also know will be true of every person I work with in the future. I know that I hold privilege, which makes it easier for me than for people in oppressed communities to have their voice heard. The importance of acknowledging that, learning and also unlearning will be crucial to the work I want to do and to build trust with people who’s identities I don’t share.
We are all experts on our own lives, regardless of whether the system tells us that the ways we survived where healthy or maladaptive; believing that we are all doing the best we can with what we have in this world makes me a better person and will support me as a social worker.
Every soul on this planet deserves a life as free as that of a butterfly…
Zebra Longwing Butterfly
It was a sunny afternoon, perfect for a walk to go get lunch at some nearby food carts with my close friend. As we walked, we discussed what was going on in our lives and our mutual struggle with wrapping our heads around what was happening in Portland related to the protests and the Black Lives Matter movement. It is not unusual for us to discuss something that I had learned in class that week, applying it to our own lived experiences as queer individuals, or the lives of others that hold oppressed identities, and that day was no different.
We were specifically talking about how shame kills people, some people’s unwillingness to own past behaviors that they are not proud of, so that they can make reparations, and how so many people hold positions in the top of the bottom 80% that perpetuate systemic oppression without realizing it. All three conversations are highly intertwined because it takes vulnerability to own our past mistakes and admit we were wrong or that we are a part of the systems of oppression that we have gone to school to dismantle; if we cannot muster up the courage to own it, learn about the construction of it, so we can work to eradicate it, then many of us feel an immense amount of shame.
On the walk back after eating the most delicious Pad Thai burrito I’ve ever had the pleasure of consuming, we came upon the wall of a building painted with the words, “HEY! YOU’RE PART OF IT”. Those words stopped me in my tracks. The artist had painted wallpaper on the building that looked as though it was being peeled away from the brick, but the words still covered the entire side of the building. Immediately, I looked at him and said, “even though the wallpaper is being peeled away, the words still remain. To me that represents the fact that even when we try to remove the image of us being part of the problem, by doing work in jobs that help oppressed people, at the root of it all, we are still part of it; we are part of those oppressive systems that keep people exactly where they are”.
Unless we move outside of what the systems are asking us to do, we will never be able to truly dismantle the oppressive and patriarchal systems that are in place. We have to have the courage to acknowledge that removing the “wallpaper” only gives us the illusion that we are part of change. If we want change, real long lasting change, we have to tear down the whole building and start over again. For me, that means checking my privilege and biases, owning that I am not perfect and have done harm to others (implicitly or explicitly), make reparations for my choices, and then work hard outside the system to obliterate them.
I will never forget the impact that wall of words had on me that sunny afternoon. I don’t know who the artist is, or their intended message, but that doesn’t matter. What matters is what I do with those words. Do I use the impact they had on me to move forward and create change, or do I let them slowly fade from my memory, by taking the easy path, and maintain the status quo? I choose option number 1; now I just have to decide how to be an agent of change, rather than a passive accomplice.
A mason jar sits, bursting at the rim with a rainbow of marbles
Each marble has been earned through small acts of kindness across time
The glass is thick, built to withstand criticism and missteps
Just so long as those hurtful acts are greatly outnumbered by kindness
Each poke, prod, tease, judgement, or dismissal weakens the glass
The glass tries defection, it tries to become stronger, it even armors-up
But slowly and surely a small crack begins to form, not noticeable at first
Another insult, assumption, judgement, or hurtful act knocks against its already weakened shell
The time has come, those jabs grow the crack enough that it begins to break open
At first the rounded edge of a sunshine yellow marble peaks ever so slightly from its edges
It wants to stay, be surrounded by all the other rainbow marbles earned through kindness
The hatred is so strong though – the pressure is just too much – nothing can stop what’s begun
In the silence a small creaking noise can be heard, the crack opens just a bit more
The sunshine yellow marble crashes to the floor and shatters to dust
The rainbow marbles follow suit, tumbling out, fracturing, bouncing, and rolling on the floor
There stands an empty mason jar, covered with cracks and abrasions
No more rainbows, no more sunshine, utterly alone
When I think of people, I often think of a puzzle, with many pieces encompassing diverse shapes and sizes, which ultimately come together and create complexity and beauty. Each puzzle piece is unique, just as much as each person is. So why is it that the systems in place treat people like they should all fit in a Jell-O mold, which may hold contents of a different color, but must still stay within the confines of that mold? The answer is simple and complex: power, control, and the almighty dollar are the foundation of the Jell-O mold.
Those that hold power in this world often use it to get what they want and to control the people around them. Our education system is a great example of keeping children oppressed by providing a subpar education and placing them in classrooms with high student to teacher ratios. Often, it isn’t until a child attends a university that they receive a quality education, but that comes at a price that many simply cannot afford. Some children are fortunate enough to attend a school in an affluent neighborhood or get a private education, but those children often already hold privilege, because their parents are wealthy.
Our education system is only one example because the list goes on and on if you take the time to look around and think critically about what’s happening around the world, and especially in the United States. The barriers put in place are extensive and often impermeable for those that hold marginalized identities. Even for people that hold privilege, as I do because I am white, the threat of being shoved back into that Jell-O mold is very real.
The health care system in the United States is wrought with barriers to quality healthcare, no matter how much a provider wants to offer equitable care to their patients. The requirement of putting patients into a mold that “works” well for everyone begins in medical school. Physicians are taught a specific way to provide care, which isn’t necessarily negative.
For instance, when we go in for an appendectomy we certainly hope that our surgeon has been trained properly and that they will remove our appendix and not our kidney. However, when providers care for a patient that doesn’t fit into the typical mold, what happens then? From personal experience, I can tell you that some physicians do everything they can to put you back into that rigid mold because that is where they feel comfortable
I work with an entire team of providers, ranging from mental health to neurology, to primary care, to immunology, because I have multiple chronic medical conditions that require follow-up, tweaking of medications and treatment plans, and communication between my various providers. I have a unique relationship with each of them, that has been developed over time and works well for both of us. That doesn’t mean that there aren’t frustrating times, which is natural for any relationship. For the most part, my physicians provide me with the level of care that I want and need, and we discuss what that looks like collaboratively.
I acknowledge that my care is complex and often skirts along the edges of what my providers existing knowledge base is. This can make my physicians uncomfortable even when they work in collaboration with other physicians. When this happens, most of my providers can refer me to a specialist within their specialty. That has not been the case within one specialty, psychiatry.
A prior psychiatrist I was treated by works in private practice and had been an asset to me over the past year and a half. He listened to me when I had concerns and we worked collaboratively to create treatment plans and trial medications. Because I take so many medications to manage my severe migraines and postural orthostatic tachycardia syndrome (POTS), my psychiatric care is more complex and difficult to manage. Most recently my psychiatrist acknowledged that we were reaching the edge of his comfort zone and asked me to reach out to another psychiatrist to for further consult and get another perspective.
This led to multiple email exchanges where he laid out a plan moving forward that included aligning my care more so with his other patients, creating reoccurring appointments at regular intervals, regardless of what level of care I needed, and proposing that if there are not a lot of medication changes, that we could work on other areas, such as the way I think, feel, and communicate about illness. He also suggested that this may improve my relationships with my other providers; the ones that I identified no communication issues with, but clearly, he felt otherwise.
Ultimately, the conversations went downhill fast, partially because he did not follow the boundaries that he personally set, and he felt an urgency in determining a treatment plan because he was leaving for vacation the next day. During the e-mail exchange, he decided to communicate his desire for me to begin the process of looking for a new psychiatrist through an email message, rather than in person, as I believe I deserved. This felt dehumanizing and like I wasn’t worthy of the courtesy of telling me in person.
Furthermore, the suggestion of working to improve communication with my providers created a lot of second-guessing, causing doubt about the effectiveness of my communication with my physicians.The e-mail exchange ended with him stating that my neurologist was confident in moving forward with a treatment plan that he wasn’t and that I should go forward with it.
Even though I trust my neurologist completely, it didn’t feel good to me that I was doing something that my trusted psychiatrist felt was not in my best interest. When I get that knot in my stomach, it’s an indicator to me that further action must be taken on my part. In this case, I messaged my neurologist and asked if I could take one of the medications in the morning and the other at night, skipping the night dose of the first medication so they would not interact. He concurred and said that it felt like a solid starting point. I was so relieved and quite annoyed.
Why did it take the patient, the one without the medical degree to propose a solution that might work for both physicians, to get the level of care I deserved? What if this happened to a different patient, one without as much medical knowledge, or one that spoke a language other than English as their primary language? Would they have received the proper care needed in this instance? Certainly, the answer would be a resounding no.
I had the opportunity to speak with my prior psychiatrist at my last appointment before transferring care to another provider. I knew it was going to be awkward going in because he knew I was quite unhappy with his behavior and professionalism, yet I was determined to make this a learning experience rather than a complaint session. I owed it to all his other patients and to every other person that doesn’t fit in the proverbial Jell-O mold. I was able to calmly and professionally tell him how his behavior affected my ability to care for myself, and further unpack the Jell-O mold.
What I appreciate most about my previous psychiatrist is that he was receptive to the feedback, thanked me for offering it, and told me that he was grateful that our professional relationship was parting as it was. I know that just because my care was out of his comfort zone does not mean that he is a poor psychiatrist; he just wasn’t the right one for me. Even though change is difficult, and I honestly hate it, when that door closed a new one opened; in the end, although stressful, the change has been positive.
Life, for many people, is a daily struggle, whether that’s because they don’t have enough food to eat, live in an unsafe neighborhood, are a person of color, or have a disabling condition. Some people’s struggles are outwardly obvious to the greater society, and others are not. The difference in the way a person experiences daily life based on the visibility of their disability can be vastly different, yet both often suffer from stigma and discrimination. As a person that has invisible disabilities, and sometimes must use a cane to help my brain know where I am in the world, I can attest to the fact that the cane changes everything.
Some mornings the simple act of rolling over in bed is so painful that it takes a great deal of effort and determination to change positions; when I finally get out of bed, my body feels like it has aged 40 years overnight and I can hardly move. I’ve lived with Fibromyalgia for 20 years, and for the majority of that time, I had no idea what was causing the debilitating pain and other unexplained symptoms.
In 2017, I started having headaches, and a feeling that the world around me wasn’t entirely steady. The migraines I had in my 20’s and 30’s had returned but in an entirely different way. In early 2018, after two surgeries complicated by severe infections, my body systems started going haywire and malfunctioning. The migraines had intensified, I had severe vertigo, Irritable Bowel Syndrome (IBS), unexplained chest pain, tachycardia, exhaustion, fatigue, ataxia, widespread body pain, brain fog, and much more. Suddenly I found myself in a world I had never imagined, using a cane to get around, and experiencing what’s it’s like to walk through the world with a visible disability.
During this time, the severity of my major depression intensified, as did my anxiety and other mental health challenges. The not knowing why was challenging, and I was going to school full time taking 16 credit hours, working as a peer mentor/teaching college freshman 15-20 hours per week, practically living at Oregon Health & Science University, and attending therapy twice per week just to keep my mental health partially in check. Looking back I have no idea how I managed, other than to say that I am fortunate to have an amazing support system at the university I attend, fantastic doctors, a talented therapist, and friends that lifted me and gave me hope when I couldn’t find any.
It took one year and four months for my primary neurologist to determine that I have Postural Orthostatic Tachycardia Syndrome (POTS), adding to the Fibromyalgia, and severe, treatment-resistant daily migraines with aura’s that my physician had already diagnosed me with (I was told my headache neurologist that I have every type of migraine there is). Some people might be shocked that it took over a year for my doctors to figure it out when it’s honestly a miracle that he did so that quickly. The average time it takes a person with POTS to get a diagnosis is 5-6 years, and during that time people often feel like they are losing their mind, not just because of what’s happening to them, but also because others around them are often conveying that sentiment.
Did getting a POTS diagnosis change anything? I would say that in some ways it did, and in others, it absolutely did not. First off, POTS is not easy to treat, as it affects every major organ system in a person’s body; it mostly affects females (95% in fact) and causes such a wide variety of symptoms that when one seems to be getting better, it’s not unusual for me to have a flare in another. Taking care of yourself when you have POTS is extremely important, and is unequally supported by society, just like mental disorders and every other disability are. Something unique about POTS is that it’s not all that rare, and it’s very unknown by the greater community and physicians alike, which is problematic.
So, what is it like to walk through the world when you have visible and invisible disabilities? Not easy. I have a service dog, Nico, that helps me with my PTSD symptoms and creates space for me in crowded areas. He is a 75lb Labradoodle and the sweetest boy in the world. He is well behaved and was trained for 3 years before I got him. He is a real service dog and acts accordingly. If I am using my cane, which is most of the time because of severe vertigo that accompanies the migraines, then I am not questioned about why I have Nico. If I don’t have my cane, then I am questioned, and often asked if I am training him for someone. I have no idea what my cane has to do with having a service dog, but to the public having a physical disability is associated with the validity of a service dog.
POTS makes it very difficult to be physically active, so walking up flights of stairs is not an option, nor is walking for long distances or standing for long periods. Getting into buildings is often very challenging for me if stairs are the only option, or if the ramp is in an inconvenient location (as they often are). What makes it so much harder though is when people use the ramp to ride their bikes on or groups of people crowd into them rather than taking the stairs adjacent to them.
Furthermore, when a person has a disability parking permit and gets out of the car without an assistance device, like a cane or wheelchair, that does NOT mean that they do not have a disability. There are times when I need my cane, and days when I don’t, but that does not mean that I don’t tire easily and struggle walking long distances. It simply means that I don’t have a migraine yet, so I’m taking advantage of the opportunity to walk through the world without the cane; sometimes I just want to feel “normal” again, or in other words, as I did before POTS.
Giving a person a dirty look or staring them down because they park in a disability space legally, with their permit, is inexcusable. Remember, it’s impossible to know what’s happening in someone’s life; they may have a heart condition or other invisible disability that requires them to use the permit. I know for me; I’d much rather have my old body back and park my car a 10-minute walk away than to experience the physical impact that comes along with POTS. Practicing the art of not judging others is one way to connect with people who may bring more joy to your life than you ever thought possible. Just let it go, it’s not serving you or anyone else well.
Making my way through the world facing what was previously mentioned isn’t easy, and I wish it were different, however, there is one piece that hurts more than any other. When a person looks at me, they see a disability, someone who is less than or damaged; it is a rare day when someone who I don’t already know treats me like the capable, intelligent, strong, and authentic individual I am. I live with a disability, and my disabling conditions do not define me; I am not POTS, I am not Fibro, I am not Depression, nor PTSD, nor anxiety, nor a migraine. I am a human being that has been inflicted by syndromes and disorders, mostly attributed to an extensive trauma history.
All the adversity I have traversed makes me a complex human being, an empath, and someone who is choosing to dedicate her life to supporting others on their life path, through the struggle, and the turmoil. It’s messy for sure, but a beautiful kind of a mess. If life were all about rainbows and lollipops, how would we know we were experiencing a moment of unprecedented joy? As humans, we find the rain so easily, but when we can find the rainbow in the rain and celebrate it, that is when we know we are truly LIVING.
The day began like any other Friday; however, the world was entrenched in the COVID-19 pandemic, people had already endured months of isolation, and the mental health impact was taking hold. With the world collapsing around me, knowing that today was my weekly “social distancing” coffee date with one of my closest friends, brought light to an otherwise arduous day.
This time we decided to shake things up a bit, as we typically meet in the park blocks near Portland State, by going to a coffee shop on the South Waterfront that he likes. He said that the area lends itself perfectly for taking in the essence of the city while we walk along, sip our coffee, and shared what life had presented us with that past week.
As my car pulled up alongside the curb, I immediately saw my friend’s beautiful smile, one that fills me with joy even on the most devastating of days. As he approached my car to help me get my dog out, I collected my things and we began walking towards the coffee shop. From a not so distant place a man could be heard shouting in the background; we looked at each other, and shrugged, as it was not uncommon for us to have such an experience during our coffee dates. As we approached the shop, it became obvious to us that the coffee shop was closed, so we would need to change our plans.
As I looked towards my friend, over his shoulder I could see where the once distant yelling had originated; a man, probably in his 30’s was walking down the middle of the street screaming that he needed help and for someone to get him some milk. As he gained ground, I could see that he was stumbling around with his eyes closed, looking disheveled and quite distraught.
Psychologically, our brains are wired to create a story about what we don’t understand, and mine struggled to do so. This situation felt different than the ones he and I typically encounter on our coffee dates, so I watched curiously for a minute as I attempted to determine if this man was a safe person for me to help. I looked over at my friend, told him that I knew it was going to cut into our coffee time, but something about this situation was different, and I had to help him.
My friend seemed to know that was going to be the case before I even finished my sentence, as he took my dog’s leash from me, and reminded me to be careful as I approached the man. Immediately, I noticed that he was carrying a battery-powered drill and charger in one of his hands, which I found curious and knew could be dangerous, intentionally, or not.
When I was about 8 feet away, I loudly asked him if he needed help. After he confirmed that was the case, I asked him if he minded handing me the drill so that I could put it on the curb. I gently took it from him as I led him towards the sidewalk, giving him verbal directions along the way, knowing that touching a person to guide them could be triggering for some. I guided him to a sitting position, and he immediately began yelling again, not in an angry way; he was terrified.
I crouched down to his level, and after asking him what his name was, I told Nathan that I was there to help him, but he could make it much easier if he was calmer and talked to me in a lower voice. He didn’t protest. I told him my name and proceeded to ask him if he minded taking some deep breaths with me, which we did; this helped to calm him down almost immediately. A calm person is a much more rational person, so I knew it was essential to help him get to a place where his mental capacity enabled him to tell me what had happened.
Nathan proceeded to tell me that he had been sprayed in the face with mace by someone and that his girlfriend was on a white and blue sailboat down by the water. He told me that he didn’t care about himself but was worried because he knew that if the sailboat left, his girlfriend was going to be sold in the sex trade; he needed someone to go and save her. His subsequent question to me was if I was the police. I told him, no, and he replied that he wanted me to call them right then.
I dialed 911 on my cell phone and told the dispatcher where I was and that I needed the police to come because a man had been sprayed with mace and was especially concerned about his girlfriend that was on a sailboat docked nearby. I informed her that he had told me that if they left he knew she would be sold in the sex trade.
The dispatcher asked me approximately 10 questions about various things, and the more times I had to ask Nathan for the answer the more upset he got. At that point, I told the dispatcher that was enough questions. She annoyingly responded by telling me that the police needed more information so that they would know what they were coming to help for. I kindly told her that they had enough information and that I must now focus on helping Nathan.
After I got off the phone, many people came to ask me if I needed any help, which I found immensely interesting, as they had completely ignored Nathan as he was yelling for help earlier. Nevertheless, they were kind gestures. A man offered a plastic folder so that he could fan his eyes, probably because he was watching me give him all sorts of my things to try, none of which were successful. Then a younger woman came down and asked me if she could get me anything to help him. I asked if she had milk to rinse his eyes; she came back 5 minutes later with a gallon of milk and a cup.
My friend and the young woman stood 10 or so feet behind me to my left. The young woman told me that she and some other people had been watching from the balcony; she thought that I must be a nurse or something because it was obvious that I knew exactly what I was doing. I chuckled a little, told her that I was in school for psych and social work, and then thanked her for the compliment.
Additionally, the man that was working as a groundskeeper, who witnessed Nathan running towards the area, waited to see if the police wanted more information. Nathan had been chased up the hill by a man with a 3-4 ft long stick in his hand. Nathan never mentioned that to me, so I don’t believe he knew he was being chased after he had been sprayed with mace.
It wasn’t a minute later that the police finally arrived (took them 20 minutes) with the fire department closely behind. The policewoman approached, with her male partner following; she stood about 12 feet away as she asked questions. When I told her what Nathan said about his concern for his girlfriend’s safety, she low waved me off, which infuriated me. It appeared that it was not so much that I was talking, but more that what I had to say was irrelevant to the situation, in her opinion. Nathan reiterated what I said and told her that he wanted his girlfriend checked on first. I then asked the man that was working the grounds if he could tell her what he saw.
While all this was happening, a fireman approached with some water, and began to tell me that they don’t have much on the truck to help him, but then looked down and said that what I had was much better anyways. They never checked Nathan for any injuries or assessed him specifically.
After Nathan requested again that they check on his girlfriend, and did not receive a response from the police, he started to get very upset and began to yell. Immediately, the policewoman and the other officer started to yell, “Ma’am, Ma’am, Ma’am”, very loudly toward me. I raised my head, looked the female officer directly in the eyes, and said, “I am fine, I don’t feel scared, and I am a social worker!”. Boy did that feel good rolling off my tongue! In a soft voice I reminded Nathan that when he is calm it is easier for all of us to help him. That was all it took, a simple and compassionate reminder while treating him as a human rather than a burden.
Then, the strangest thing occurred; the fire department and police left at the same time saying nothing to anyone. My friend, the young woman, the groundskeeper, and I all just stared at one another in bewilderment; why would they leave and not say a word to us? The groundskeeper then noticed that the police car was still parked and that they had headed down towards the docks. It was discovered that only one of the two police cars had left the scene.
I continued to help Nathan until the police were back. This time they came up to us and began to talk with Nathan directly about the situation. Nathan stood up to talk to them and told the policeman that he liked him because he was giving him tips on the best way to manage the pain from the mace. I stood a couple of feet away watching the situation, because the policewoman had not made a positive impression on me, and I didn’t trust that she wanted what was in Nathan’s best interest.
Nathan was pleading with them to take him to talk to his girlfriend, and the policewoman responded that his girlfriend did not want to talk to him. After more pleading, she told him that his girlfriend told them she is no longer his girlfriend and that she had broken up with him. At that moment, my heart sank for Nathan just as quickly as my hatred for the policewoman grew. There was absolutely no reason that she had to confront him with that reality then; that topic could easily have been danced around in conversation to avoid escalation.
Not surprisingly, Nathan began screaming her name, took off his cross necklace and asked them to take it to her; when they refused he asked me. I kept the same soft voice and told him that I was sorry but that I couldn’t do that for him. He then began to run (as best as a person can with their eyes closed) towards the river and sailboat. The police followed and he didn’t get very far before they stopped him near some rose bushes. I felt helpless at that moment.
I looked over at my friend and told him that I didn’t want to interfere with the police but…which is where he interrupted me and said that sometimes it is not about whether we want to or not, but rather that we must. This is one of the reasons why I love him; he knows me so well that he can identify what is in my heart before I can find the words to tell him. I told him that I would stand and watch and that if things escalated in the slightest, I would then approach and advocate for Nathan.
I could see the policewoman watching me, watching her. She was not the one talking to Nathan, as each of them had one of his wrists in their hand and slowly walked him back to where I was standing. I had gathered all his things, cleaned up, and put mine off to the side while they walked him back.
When they arrived, Nathan was calm, and they were trying to figure out where they could take him. The policewoman addressed me, this time in a much more respectful fashion, asking where his things were. I showed her, told her I had no explanation for the drill, but he was not trying to hurt anyone with it, and then asked her if we could leave. I told Nathan that I hoped he felt better soon. My friend and I walked back towards the car, in total disbelief of what just occurred.
When we got back to the car, my friend told me that it was amazing to watch me work and de-escalate the situation so quickly. He said it all happened in less than a minute. He also said that it was clear to him that by me treating Nathan with dignity and kindness, he was able to calm down much quicker and trust that I was there to help him, not hurt him.
I responded by telling him that I didn’t even have to think about it; the way I responded to him felt completely natural and that what I had learned in school became a part of my words and actions instinctively. That was the moment that solidified my own belief that I am a social worker.
Yes, in a few weeks I will have a piece of paper to prove that I earned my BS in psychology and social work, but it’s not that piece of paper that truly makes a person a social worker. That requires us all, as social workers, to offer ourselves and our hearts to people who need it and want our help, without hesitation, and any thought of personal gain.