Author Archives: admin

Healing

Posted on by

Warning: Possible TMI moment.

I feel comfortable sharing here. While it’s still a “public” space on the Internet, it is highly unlikely that you’ve reached this blog without looking for it. I don’t like posting too much personal info in social media spaces; it feels ego-driven and disingenuous every time I start to draft a post implying that the details of my experiences warrant the immediate awareness of others. Social media also makes things feel less real to me. That feeling is personal and I don’t knock anyone else who feels differently; it’s just my personal preference. This space is different for me.

I know very little about most things, and surely the things I know a lot about are a total snooze fest. Today, I feel like sharing my experience might help me better understand my situation and it might help others. I welcome thoughtful dialogue and suggestions, but not pity. I am not a poor thing; I am a strong woman who tackled a problem with the help of my favorite human, Joe Hall, my loving family and friends, and an amazing, badass named Dr. Amy Broach. So, here it is . . .

A week ago, I had surgery; left oopherectomy, bilateral salpingectomy, endometrial ablation and a progesterone implant inserted for hormone regulation. I am healing. I am at peace with my decision. There are so many women who have shared their experiences with these diseases/disorders and there’s something I’ve noticed underscoring all of them, a lack of information and understanding. 

Since 2015, so much has happened to/inside my body. The journey has made me painfully (literally) aware of the black hole that is the institutional understanding of female organ health. Fertility? They’ve got that bit carved out into its own lucrative bucket of “healthcare options,” but the fundamental understanding, the why, still seems elusive. I did not get an answer for why an otherwise healthy 30-something-year-old female would present with persistent complex-cell cyst growth and severe endometriosis. Hormone imbalance. Why? Nothing. I was offered a solution to help me get pregnant before I was offered treatment options to address the two disorders, because they don’t exist. Symptoms can be managed and the disease “kept at bay.” There is no cure other than removing the growths and the organs they grow on. Seems extreme. 

I get that my body is designed to create life, that’s pretty radin the grand scheme of things, but something went wonky along the way and I believe there should be treatment that doesn’t involve cutting entire organs out of our bodies that will ultimately lead to other health issues down the road. Throughout my experience, the question always came back to pregnancy; “Do you want to have babies?” Even if I had tried some of the more advanced and expensive options, my environment was not conducive to growing another life. It’s important to note that I could use “we” here in place of “I.” It would be factual, but Joe is not the kind of man to ever imply that he should have any control whatsoever over decisions about my health unless I am unconscious and he has to make them for me. His endless support has been invaluable. 

A year ago, I spent the night in the ER with an episode of ovarian torsion. It’s super painful and can present like appendicitis, at least it did for me. This incident helped Joe and I realize the need for immediacy in dealing with my condition. Endometriosis, by the way, can only be diagnosed by diagnostic laparoscopy or MRI, as I understand. The symptoms are well documented, however, so my doctor worked up my treatment options without a definitive diagnosis. We jumped into a treatment protocol, which involved forced menopause to keep the cysts on my ovary from growing and the endometriosis from spreading. 

The Mayo Clinic defines Endometriosis as an “often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs.”

Winner, winner. The endometriosis has grown around my large intestine (colon) all the way down to my rectum. I can’t help but wonder, how rare is this really? The solution? Another surgery. The plan? Wait and see. The progesterone should keep it from growing/spreading, but we’ll have to see how bad the symptoms end up being. It feels like the world is saying your disease is “just a side effect of being a woman.” 

There are no answers. I found the following recommendation in a report published by NIH in 2017: 

“Two topics summarize the new recommendations: (1) a need for our field to thoughtfully and actively determine what data are needed to quantify endometriosis disease burden and to facilitate discovery that takes into account phenotypic variation and (2) endometriosis must be addressed and consistent data must be collected for research and clinical needs across the life course, in adolescence, pregnancy, and throughout adulthood. Adolescents in particular are an underserved group with high morbidity and social impact, and yet this age is likely the critical window for disease etiologic discovery and intervention.” 

My career involves a lot of boots-on-the-ground advocacy. As immersed in that world as I am, it’s often difficult for me to think about advocacy as it applies to my own circumstances. I’m good about advocating for myself in the moment, asking for exactly what I need. But I’m struggling to see the path for a movement on this issue, or I’m missing it. I’m frustrated by the lack of research being done, that the most basic questions remain unanswered. I’m saddened by the stories of my friends living in pain and the women unable to accommodate the growth of a fetus or bring a baby to term. 

I believe it, still.

Posted on by

Since I can remember, I’ve been granted the privilege of bearing witness to individuals regain mobility after suffering limb loss or gain mobility after being born with limb difference. I never had to be introduced to the concept of limb loss; I’ve never known a world without people living with limb difference. My Dad gifted me this perspective by taking me to work with him when I was a little girl. It seems like it was often. Occasionally, I’ll walk into an older building and the scent will remind me of that old Hanger clinic on Poole Rd.

The facility was in a poor part of town. Dad provided care to an underserved population in an underserved community. Most people living with limb loss are underserved, due to the condition of our healthcare system, but this was a particularly underserved area. I remember the layout of the building; canes sat in a round holder to the left and a walker to the right of the front door. I remember the reception counter spanned three-quarters the front of the waiting room; my Dad’s office was on the right. A long hallway down the left side of the building opened up into a big (I was quite small) lab in the back, with sand boxes and machines and my friends, Mike and Tony.

The gait room was my playground, and Dad’s patients, my playmates. I am aware that it could be viewed as insensitive to have a small able-bodied child running around a prosthetist’s office, swinging on the parallel bars while someone tried to walk in them for the first time after an amputation, but the way Dad tells the stories, no one was offended. In fact, my Dad took care of many of those patients through the end of their lives, and still provides prosthetic care to a few of them today.

I was obviously too young to appreciate the role those experiences would play later in my life. My memories of time and space are likely skewed, as is the case with all recreations of the mind, but my sense of it all hasn’t changed a bit.

I’ve been in countless O&P facilities since my youth. I’ve done a little bit of everything I could do in O&P without credentials, from transcribing notes and helping in the lab in my teens, to opening new facilities and helping grow our company in my twenties, and ultimately running and helping sell our family-owned business in my thirties. There are several generations of people with similar stories to tell.

My Dad has been a prosthetist all my life, my mother a nurse. They were volunteer rescue workers in the small town where I grew up and took me on a “call or two” when the pagers went off in the middle of the night. Their dedication to their careers, to taking care of their patients, undoubtedly influenced and shaped my own identity. And though I do not work directly in healthcare, it is central to my personal/professional motivation and mission.

Even during my short photojournalism career, one of the most meaningful stories I ever covered was a year-long piece about a courageous survivor of breast cancer. I met her and her family the day she was diagnosed. Soon after, I scrubbed into her double mastectomy surgery. I documented the toughest moments of her experience, but also the hope. I spent countless hours in her home and with her family. I sat beside her during treatments, and I rushed to be there when she decided to shave her head because she was tired of losing her hair.

In some ways, that experience would prepare me for David. Though, nothing can really prepare us for those magical people that come along and change our lives. And in referencing my hero, I bring this rambling full circle. David is probably the reason I made my employment more permanent at Beacon after I moved back to North Carolina. Even after he was gone, after I finished graduate school, I couldn’t convince myself that there would ever be anything more rewarding than a career in O&P.

I believe it, still.

We’ve made encouraging advancements in this profession, but we can do more, we can be better. We have to push the boundaries to better serve those who rely on our services to maintain mobile, functional lives.

This is my starting point, every day. I ask myself, what can we do today to make things better for people living with limb loss and mobility challenges and the clinicians providing their care. From there, it is easy for me to work tirelessly on projects and initiatives that will improve the O&P profession.

I feel so fortunate to work for AOPA, an organization that literally includes my professional goals and ambitions in its mission statement.

Writing for Blanko

Posted on by

When I married Joe, I knew I was marrying a man who had already found his first love. That we can share an experience in the creative process that consumes so much space in his world is one of the most enjoyable aspects of our relationship. (Note: this is the least naïve statement in this entire post.)

I was not gifted with a musical talent, but my love for music has been a central part of my life for a long time. I believe that creatives build their communities in ways that are both translucent and panchromatic. This isn’t a contradiction, but rather a description of the complexity I see underlining the essence of art.

I believe artists are naturally drawn to one another. No matter my city of residence, I’ve always found a group of people who inspired me to create. Long before Joe and I dated, a community of musicians in the Triangle took me in and encouraged me to be my most creative self. Whether through photography, curating projects, or lyric-writing, I’ve always found a canvas for my inspiration.

My attachments to this stimulus and productive energy increased my desire to be around people that challenge my own way of looking at the world. Many of the incredible humans responsible for expanding my creative mind are now my closest friends. I choose to surround myself with people who choose to contribute beauty to our world; and, on occasion, I am inspired to make my own offering. My contributions have been acute, miniature really, but the efforts continue to feed my soul.

No purely creative endeavor has ever been more rewarding than writing lyrics with Joe. Stories and sentiments form meaning, inspired by vocal melodies and chord progressions. Our process is simple and collaborative. We started writing together five years ago on the first Blanko record, but Ocean Meets the Animal offered an entirely different opportunity. While I contributed to a spattering of lines across the album, two songs feel like part of me.

Berry represents a deeply personal story for me; and though I know no one will ever hear what I hear when the song is played, I hope the sentiment will seep out and inform the listener’s impression. The foundation of the song, the instrumentation, existed long before the words were written. It was on a hike that Joe and I finished them together. It was the mood and form that created the canvas for the story, which was inspired by a complicated love, the inability to rely on truth, and the desperation for respite in a relationship burdened by loss.

While the lyrics for Berry are written about a specific experience, All We Are was written from a place of reaction to a movement, and the desperate need to be better. We were sitting in a window seat on Main St. eating sandwiches. It was after the election and our hearts were heavy. We discussed the importance of the role of lifting up those who have less access to a platform and amplifying voices not as easily heard, that we both felt we should be embracing as allies. We talked about Black Lives Matter and our privilege, and how we wanted/needed to do better.

It is with a humble and honest hope for reprieve 
Deserving not a moment in this serenity
You were looking for higher ground
We lead you to the sea
In hand with humanity
A gesture incomplete

Break free from our founded form deny immunity
Keep peace in an open forum a silent form of speech
We are looking for higher ground
And there in thought we meet
In hand with humanity
A gesture incomplete

I will continue to write. Even when it’s not very good, I can’t help but put words on a page; most will never make it out of my journals. More than anything, I hope to continue writing with Joe. It is one of my favorite exercises in creative expression.

Stumble, recover

Posted on by

There are moments when I lose focus. This is less often than it used to be, as I’ve found strong purpose in almost all my present endeavors. This purpose works like a current beneath me, carrying me in a certain direction. And though I believe it is the right direction, it is not always easy to swim to the side. I’m not the best at resetting or stepping back as a form of self-preservation.

I stumbled last week. On stage, in front of a room full of colleagues I respect and admire, I stumbled. It was not the best seven minutes of my career. No matter the situational attributes of the moment, the fact is this, I lost focus because I ignored my purpose.

Here’s why. It was personal. In the moment, I made it about me, about what was happening to me, and not about the importance of delivering the message I was up there to deliver. I was on stage to educate the people in that room about a topic I know, a topic I talk about every single day.

Instead of looking at my colleagues and thinking about the importance of their assessment of the information I was providing, I focused on their assessment of me. I stumbled.

There were so many in that room who wanted me to succeed, and still, I could not catch my breath. A few of those people offered advice, teaching moments to influence the process of growth this will become. They are my champions, and are responsible for the current under me in more ways than they know.

Big picture, this is not that big of a deal, but it has allowed me to realign directly with that strong sense of purpose that has been guiding me so successfully. My dedication to our profession and the patients we serve is real and substantial. It is not a talking point or starting line, it is everything.

Flower and Fruit

Posted on by

For most of my adult life, I’ve sought more than superficial acquaintance. That I may truly know a friend (woman or man), with all her vulnerability, is a gift; but it is a gift I seek with intention. Grant me the pleasure of knowing you with such depth, and I promise to protect it, to hold it dear to my heart. If you so desire, I will return the favor.

I am purposeful in my approach to relationships, as I need not bother another with the noise of my existence, and I care not indulge in less than all of someone. For some, this is exhausting; I am exhausting.

I recognize my tendency to collect those around me. I make space for love, in any moment. I feed on sentiment and praise, but only in the hope that I may return the favor in some near future.

In recent months, I’ve noticed that I find myself pondering my existence, my purpose, more often. Perhaps it is because I am not at capacity and need the wonderings and philosophizing to fill the void.

I am writing this post both as a reflection on recent experiences, and as a hope that I might further explore my own understanding of the appropriateness of my desire for the “flower and fruit.”

At the same time, I have noticed an unsettling trend in the judgement of good, or good enough. While the cloak of good ideas, thought alignment, and at times, vocal outcry, may serve well enough as good deed, (one that might mask the worst of our sins), I am not interested in the false equivalencies and unfounded narratives that underline much of our moral expectations. I am still shocked to see the level of hypocrisy that has become commonplace in our ideologies.

I’ve noticed a pattern in our social discourse, one of prescription and forced placement. While we are all screaming about standing up and fighting for fundamental changes, changes in the root and stem of our society, I also see a lashing out at individual thought.

We are caught in a wave of marketed truth, which feels shallow. There is often a lack of nuance and depth in our discourse. We forget that the problems are complicated, and the solutions, more so.

This is all to say that it is becoming harder to both offer and receive the fruit.

_______________________________________

“I want the flower and fruit of a man; that some fragrance be wafted over from him to me, and some ripeness flavor our intercourse. His goodness must not be a partial and transitory act, but a constant superfluity, which cost him nothing and of which he is unconscious.” -HDT