“It takes a special kind of person to go what you are going through.”
Except, not really. I hear this phrase quite often, and frequently I have argued against it. Mainly because disease is happening to everyone. And just like you, I fear death, the unknown, and threats to my life. I may have a fatal disease, but that doesn’t make me any less a human coping with a very terrible thing.
You see, our sympathy for someone who is freshly diagnosed is outpouring. We send all our facebook prayers, and instagram good wishes and like I have typed many times before, thats about where it ends. When the disease starts to impact the patients mental health and well being – everyone else is turned off. “They’re so angry” “They’ve changed so much” “I cant stand them because they way they act.” People said these things about me to me…even family. I look back on that time period to a very confused, angry, hurt, and alienated version of myself. I woke up one day to someone I didn’t even know, my past writings in which I didn’t even agree with anymore, and I had no idea why? My brain was physically, actually changing – the organ that controls the entire body. Two years later being diagnosed with PTSD was the missing puzzle piece to why exactly I felt so charged up, on alert, and all kinds of other terms I used to describe myself.
What blows my mind is that while trying to have a mental health revolution in America – we are forgetting that our mentally affected friends are not the easiest to deal with. I’m not saying let your friends abuse you even verbally – but I am saying that they will have special needs, triggers, rants, random mood changes that they cannot control. Can the person with a bad heart control the beating, the non beating, and the errors? No? Neither can the person who’s brain is telling them that there is danger all around. It’s a tough concept, until you remember that the brain is an organ and the most powerful one in the body.
Nevertheless, only in this world is it unacceptable to have a serious disease, but to speak your mind truthfully about your situation and healthcare? How dare you! Man, oh man people, really? I hear the “you’re so strong” “you have my prayers” on the daily but the minute I speak strongly about the injustice that is our healthcare system in America – is the minute I am a crazy, liberal, and loud mouthed nut. It cracks me up that apparently fighting a disease is limited to quoting the bible, smiling, posting insprational thoughts about how wonderful life is. Bascially, the minute we get real is the minute people can’t accept your disease. Welcome to how people who work in the medical field feel when the see the injustice of death creep in to normal peoples life. You don’t have the power to say the pain or experiences are not real because they are not comforting.
While you are campaigning for acceptance of mental health – please remember what it looks, sounds, and feels like. Maybe the friend or family member that can’t shut up isn’t attacking you – maybe her brain is attacking itself.
Social expectations quickly became the first part in my awakening when living with a chronic illness. Diagnosed at eighteen was to be altered at such a crucial part in human progression; graduating high school and going off to college. It stared me directly in the face everyday because I was diagnosed almost directly after my high school graduation, barely living through it in the first place. In fact, the conversation about not being able to walk, or climb the steps necessary at the ceremony sparked a bigger discussion that something serious was happening in body. After my diagnosis in July of 2010, I was on bed rest and only half listening to what doctors were saying. “This is not curable” ” you will probably need a transplant” and “you will never have children” were nonsense to me…until school resumed and I watched everyone I knew pick up their responsibilities, and truck forward on the good path of societal expectations while I waved “bye.”
I would eventually go back to school a year later, and keep myself busy for a good chunk of time. Dissecting cats in Anatomy and Physiology, standing with pitting edema in my feet – too swollen for my own shoes. Walking so far to get to classes that I was counting my blessings the whole way there in hopes I didn’t blackout.The horror I felt within learning that I was actually sick, and an instructor one day yelling at me for using my handicap plaque in a handicapped space because he too along with many others questioned my sickness.
When I started working in an elementary school I noticed how refreshing it can be to spend your day instructing kids, and to be actually taking care of them. Social expectations rocked my core once again because I knew I could never have this outside of the classroom. As I transferred into my early twenties and witnessed a vast group of friends having children, I struggled to hush my bitterness. The more I met men who wanted to talk kids, or expected that they could do what their best friends brother’s cousin was doing, which was having kids – the more dating felt like a minefield of “he’s not down with the sickness.”
The reality was finally washing over me that my life was always going to be a lot different – no matter how normal I could force myself to appear. My lungs and heart were going to do their best, but ultimately they are flawed. After attending the 2014 PHA Conference, my meltdown was past due. It was a strong stare into the reality of my affliction, and while it was empowering to be there with everyone – the trip home was the big drop ending in a roller coaster. I couldn’t return to function in such a society that had unrealistic expectations for me. Financial expectations of college degrees, buying cars, and buying homes. I had medical bills, and from what I was discovering peering over my Dad’s shoulder was disturbing of what it would cost to keep me alive. The social expectations of relationships, marriages, children – oh and as a woman the BODILY expectations of just having children; just being pregnant actually because the doctors were now using the word abortion – if pregnancy did happen.
Financial, social, and bodily expectations set my world distinctly apart from my age group. Isolation became a friend versus humans because of how I was taught to think about myself, and where I was expected to be with my life. I realized that I couldn’t live up to these social expectations, mentally or physically. So disturbed by the effects of how my body betrayed me, I could never see the world through the same frames of the people around me – it had vastly changed down to the functions in my brain. Life could no longer continue when I digested the fatal blow that my existence had endured and would endure with an incurable illness. Just to be breathing in this moment was lucky.
And I write today still on the road to acceptance of myself. Acceptance of my weight, my teeth, my mental health, my flaws, my tubing, the machine on the other end of it, my leopard spots, my extreme limits of living thanks to SSDI and all of it’s flawed glory, and my lungs. Those damn lungs.
Then I take a look around again, and I am aghast at my home, Rocco, my Polaroids, stash of MASH dvd’s, my collection of vinyl, my art that even some wonderful friends have sent, the fact that I am breathing right now, and it becomes an easier pill to swallow.
Society convinced me for a long time that I didn’t have the correct ingredients for happiness and success. Sometimes I will still catch my mind observing and critiquing myself in comparison to others with the conclusion that I have failed somehow. But through people’s empathy, and honesty about who they really are, and how different life can be for all of us, I have learned that there is no correct list for the makeup of happiness or success. That it is each so deeply personal to us, like fingerprints and DNA that my happiness could certainly never quite be yours. So what do your expectations of others mean? Quite frankly nothing. Expectations should only include health – mental and physical health.
My journey and life looks quite different from those around me – yet it fits like a glove. Other’s have made their own decisions for their happiness and it may seem strange to us but they are discovering what is in their makeup for happiness.
The key to accepting our disease is ultimately in accepting ourselves – through our own lens.
When I was diagnosed at eighteen my concept of my own mortality was extremely limited. I had been what society has deemed as an “adult” for not even a month, and incurable illness with a side effect of death was the furthest thing from my understanding. It was 2010 – there had to be a cure for this thing I had? My body had to adapt? I could probably still have my own children and live a “normal” life, right? Why is dad freaking out about insurance, and money? While these types of questions swirled inside of me, doctors were telling me to go “here” and “take these pills” which not surprisingly did absolutely nothing in helping me actually understand and cope with my terminal diagnosis.
I wouldn’t be living quite the image our world projects into our mind. In the beginning being extremely young and newly diagnosed, non-comprehension and denial was the happy fortress I had built for myself including this blog. I really convinced myself I had some sort of grasp on this disease. By fall of 2014, an extreme change to the inner workings of my system slowly consumed my entirety. I remember it clearly – waking up one day into a new darker world where nothing made sense, and life could not continue as it always had. Substance abuse, addiction, anger, paranoia, personality change, and even hair change (hahaha.) You could say denial was no longer comfortable. Suddenly I became so aware of my thinking, my surroundings, and of course my disease that societal expectations had convinced me was so irreparable, horrible, and straight up baggage. “You can’t have kids?” “How will you ever get married?” “How will you afford this?” “You know diseases in America are really expensive right?” “How will you ever live a normal life?”
This was my daily life, and I had prepared myself like a prospect at an interview; I possessed graceful answers to combat all of these intrusive questions perfectly…until my smile cracked, I actually began to really hear them, and wonder why exactly I was being told and asked such disturbing things? Why is my healthcare so expensive? Why does it matter if I get don’t get married? Why why why? The doctor appointments began to weigh heavily, the expectations to pile on top were soul crushing, and I was cracking up a little more everyday. I began to put on M*A*S*H daily to quietly sedate my toxic and self abusive mindset while weaning myself off of Xanax which at this point was keeping me sedated and goalless. My dad began to voice his concerns about a facility stay that would help get me back on track. I had been derailing since July of 2014 and it was now May 2015. This is when the Land of Enchantment silently urged me to migrate and surround myself with healing views of earth and not people.
New Mexico was a miracle – it helped me discover my passions, inner magic, and I also got the correct diagnosis of PTSD – a strong answer into why M*A*S*H is a mere static playing on a screen near me all the time keeping intrusive thoughts under control. If you’re wondering, “Why M*A*S*H?” then click here. New Mexico also put me with an incredibly advanced Pulmonary Hypertension team that combat the progression of my disease and near death with steps in not only medicine but mental health. My new doctor took time from day one to clearly explain my illness, organs, how my team works, what they do, expectations of me, and made an active choice to hear where I was struggling and responded with social care. Communication was a key ingredient within my new healthcare team.
“Communication doesn’t take place because you tell somebody something. It takes place when you observe them closely and track their ability to follow you. Communication is a group experience.”
Alan Alda, if i understood you would i have this look on my face 2017
This was the first facility where I was fully explained what disease inhabits my body, and genuinely heard when it came to my opinions – whether I could voice them or not.My compliance, arguments, fears, and body language were enough communication for professionals that were open minded and skilled in seeing them.This was the first facility where I was given a social worker as a part of my specialty team.
Because of these facts listed above, these doctors helped turn a very combative, non compliant patient into someone who listens, follows directions, is given choices clearly, and is actively working with doctors to save her own life which yes, took time. While that seems like a given and something every patient does, it is in fact NOT among a large portion of us patients for various reasons; addiction, anger, grief, denial, poverty or simple confusion. My belief is that reason lies at the hands of our mental health, awareness of trauma, healthcare system, and what Alan Alda has brought to my attention – our communication or lack there of. The sooner we start addressing the power of our own brains, and the pure power of real communication between doctors and their patients then we will begin to see a vast improvement in patients lives – as well as our medical providers.
As we all know – my love for Alan Alda extends far beyond M*A*S*H and I became a listener of his podcast, Clear and Vivid, because of it’s wonderful guests and in depth conversation that genuinely helps kick start my day. His three part series in season two on empathy and science grabbed my attention enough to start taking notes. My experiences first hand as a patient tossed around in a vast healthcare system had me taken aback in these mind bending episodes.
“Sympathy is feeling for someone – empathy is feeling with someone”
dr. helen riess
In episode five – Empathy and the Doctor Patient Relationship with Dr. Karl Vandevender, he discusses what he learned to be the four factors in attempting to help a human with an illness.
the idea of dignity
the concept of suffering
the patient’s independence
· the patient’s feeling of being a burden
Did your mind just spin a bit? Because if these factors were to be brought into context when communicating with someone about their life altering illness, I strongly feel that the patient would have a firmer grasp in trying to cope with the truth that is disease and how it impedes your life in boundless ways. I’ve always preached on disease does not just exist in the confines of your doctors office or hospital room; It bleeds into every area of your life. When a new therapy was added to my treatment plan that required a monthly pregnancy test (I lived an hour away from a facility that could do that) I protested heavily that I would have to do this every month before receiving my prescription. My doctor called to discuss the reasons why we have to do this, and ended with “I know, you feel as though this disease is taking over your life.” That’s all it took in that moment for me to be quiet because my doctor could hear exactly what I was struggling with, and voiced it with me. I was understood. Beginning steps were in place of becoming a patient that would actually follow through on orders. These four factors are such a main and hidden focus of disease without our realization. We are so focused on pure survival (as well as the whole team) that we can’t see how we are struggling in other aspects. We do desire independence, dignity, and worrying about being a burden is a constant threat. Imagine if this was openly discussed when you were diagnosed? Would it have been helpful in fighting this disease mentally?
In episode four they dive into empathy and the science of emotion with Dr. Helen Riess in which they discuss how doctors have lost concern in patient’s emotions. They are worried about emotional empathy because they don’t want to be burdened by others emotions. When in fact how can you treat humans by trying to ignore and remove a very real part of the human experience – emotions? How do you expect Jane Doe to be a patient who follows through on treatment and appointments when she doesn’t value her own life, and doesn’t want to live anymore – therefore doesn’t want to help fight her disease? How do you approach this without emotion and empathy?
Diving further into empathy, we learn from Dr. Riess that empathy has cognitive (thinking) components and feeling (emotional) components. Doctors need self regulation skills (much like we all do and should be working on everyday!!) The key to self regulation is awareness; when to know you’ve been dis-regulated (feeling helpless, patient refusal, patient anger.) Knowing your triggers, and your responses – being aware with cognitive empathy. Dr. Riess concluded that doctors are not here to cry with you, but there to understand and learn more with you. A dis-regulated doctor and patient are not likely to be open to learning with each other. Doctors cannot remove the validating of their patient’s grief, anger, questions, or emotions and skip straight into treating only the disease. The brain is the most powerful and dominating organ. Treating the brain is a part of understanding your patient for a better outcome.
“This interplay of the emotional and the rational, I believe, is happening in the other persons mind when we try to explain something difficult, like science, or something that’s just difficult to absorb, like bad medical news. For someone to understand us, their mind and heart have to work together to resolve that inner conflict.”
alan alda, if i understood you would i have this look on my face 2017
After discussing so much of what doctors can do to help us – what can we do to help ourselves? While it seems easy to put all responsibility on our medical teams, we of course have to assume responsibility for our own brains and lives. Self care is a daily task whether it’s treating yourself or identifying triggers in a therapy session. Maybe it’s seeking out therapy to begin with, and realizing that it is often a painful drawn out process – not an instant cure after one session. Finding yourself angry, depressed, anxiety ridden is a beginning to realizing that your tank is not full, and professional help is needed. If you are confused at your appointments by the process, your insurance, medical information from your doctor – keep a notebook full of your questions and their answers. Communication is a two way street, and explaining to them that you are not understanding is OKAY! You are just as much in control because you are the patient!! A doctor that cares for you will want you to know what is happening, and wants you to help them help you.
I let my heart function drop, and came days within dying because I chose to take the anger I had towards my failing body out on my myself, my family, and my medical team. I had yet to come to grasps that my brain was severely traumatized, and communication and effort were beyond limited on my part. My extremely patient, clear, persistent, and emotionally aware team worked with me to save my life, and they were extremely successful, as my presence to write this article today is nothing short of a miracle; communication, and empathy saves lives. Open empathy, and communication within yourself is where your healing starts.
It seems lately that the light exposing mom shaming has become increasingly brighter showing exactly how ruthless and critical women choose to be. Having a child is one hell of a rough job as it is, and to have a group of women that you just want to connect and chat with turning on you to chew your hide I would imagine only adds to the daily stress of wondering if you are in fact a good parent. And then there is an underlying population that is overlooked, made fun of, cast aside, and haunted even further with “no mom” shaming; the women that cannot or choose not to have children.
You would think the doctors diagnosing you with a terminal disease, and doing everything in their power to keep your heart beating would be traumatic enough. You would think your appearance and life being permanently altered by the tube in your chest and the machine attached to it would be the thing that did you in mentally. However – a lot of chronic illness patients, or women who just can’t have children are just as traumatized with how they are treated by women who yes – have children.
“there is nothing more powerful than being a mom” – “there is nothing more amazing than creating a life inside of you” – “nothing is more satisfying, gratifying, more important than being a mom”
I could go on and on with these cheesy, ignorant, and ridiculous quotes. Don’t get me wrong, being a mom I’m sure is very rewarding, amazing, life changing, lalalalalalalalala. But quite frankly there are a lot of important, amazing, life altering and changing things happening on earth. For instance, the people who are on the brink of death and brought back to life through dedication of their doctors and medical science.
Without even knowing, or quite frankly caring, women continuously choose to be hurtful to those who’s womb will never grow life. We’re just as fascinated by life as you, and we probably fantasized about what our own children would be like – just like you. We thought our life would direct itself onto the normal path, and we would be searching for elementary schools and arguing over happy meals too. But our body and cellular make up had something different brewing, something we had absolutely no choosing in.
I’m glad you’re a mom. I’m glad you’re dedicated to taking care of a small being, and I’m so glad your womb grew life. Stop reminding us though, and stop acting like we are not ever capable of being powerful as well. You make us feel as though our life is truly not livable – that we should just disconnected from our machines and treatments, and just die alone with our animals. Your blind no mom shaming is a crucial stab into our mental and emotional health. You make us feel like the life you can grow makes our life not worth living because we will never be able to equate to this womanly power.
Not all moms follow this path, but so many ignorantly spout off about their blessings to the point that they don’t realize how damaging their words are. We are not worthless, our animal children are not worthless, and our life is just as powerful. Empower us with your words, stories, and children in other ways than “Nothing is more powerful than my abilities.” Choose your words wisely.
Compliance has been the center of attention when it comes to my healthcare. Big shocker here – but I wasn’t the most compliant patient until about a year ago. I ignored instructions, medications, phone calls, and ultimately hurt myself because of my refusal to accept my illness as it was.
A non compliant patient is usually an individual wrapped in denial, rage, sorrow and unresolved trauma. That entire package and more became my existence for at least seven years putting extra strain on my body, brain, and my healthcare team. I’m not quite sure if it was growing up, being paired with a perfectly matched specialty team, or receiving adequate therapy, but now I can proudly say that I am finally a patient that actually follows what the doctors want – and the proof is on paper.
Not wanting to listen to doctors, and follow through with orders for your well being will ultimately hurt you and damage your potential in opening new doors – like transplantation for example. “That’s crazy!” might be your reaction, but would you want to give precious organs to someone who might not take care of them versus another patient who will? That is just a glimpse into some of the tough decisions healthcare professionals have to make.
Being non-compliant might be your way of exerting control on a situation that you have absolutely no control over. I get it; you can decide yes or no, and ultimately you are the patient and in control. However, what is the point of suffering even more than you probably already are? Whats the point of self abuse – you didn’t ask for a terrible disease and I promise your doctors understand this…they are just trying to carry you across the finish line.
About three years ago when we decided to add Opsumit to my treatment plan, my doctor called to let me know that I would have to sit down with a specialty Gynecologist to get an approved for PH birth control plan, and I would have to be submitting a monthly pregnancy test. I protested heavily, and her response, “I know – you feel like this disease is completely taking over your life.” I could not have asked for a better reply to settle my mouth, and to hear my doctor vocalize what internally I was screaming.
My specialty team is complete with a social worker who works with nothing but Pulmonary Hypertension and Cystic Fibrosis patients. This made a lot of difference when it came to actually becoming healthy – mentally. I have always said your mental health will dominate your physical health – and I became that proof. My mental health was virtually ignored, I lived life within denial, and I almost died because of it. If you feel anger bubbling up as a reaction to orders, and find yourself in situations where it’s hard to follow through with what your doctor says – vocalize this to them. Your brain is an organ, and it needs it’s own upkeep just like your lungs and heart. Seeking out therapy to understand what’s keeping you from accepting your disease is a beginning step which will ultimately affect your overall health. I can’t stress it’s importance.
Doctors – if you have a non compliant patient, stop reacting in frustration and approach with solutions to get down to the bottom of the behavior. We often don’t even realize we’re non-compliant – we’re just humans who are tired of seeing the doctor and probably reacting in anger. Mental. Health. Professional. Find one, help them find one, make suggestions, and follow up. My social worker was emailing and calling to make sure I was seeking a therapist. It’s a lot, but we’re talking about life or death here.
This fight isn’t yours alone even when our experiences and stories are as personal as our fingerprints. Help yourself out of this hole of anger, and self abuse. Its a tough situation – choose relief.
I am tired of guilt – plain and simple. It swallows me in it’s endless depths of mind racking torture. My life equates to a lot of piling of medical bills, and collection calls sound the phone alarms daily. Every month of every year I am flooded with useless, and quite frankly confusing information about health insurance polices, what people won’t cover, what I owe, copays, and debt. My credit score is lower than the dirt we walk on, and why? Because I was born with a flawed set of lungs that are making things extremely hard on the rest of my body. I need life supporting therapy; without permanent medical assistance I will die. Therefore, I am a perfect candidate to be made millions off of.
I believe the people making this life saving medication deserve to be paid. I believe that the doctors who dedicate their entire lives saving and studying people who fight a terminal disease deserve financial security without comprising their patient’s care. Marking up medical care and drugs that save lives beyond what any sane person would determine a reasonable amount does not have any room or reason within these beliefs, and does not belong in medical care. That is as simple as I can type it through the teeth gritting rage pumping through my body.
This isn’t just a pharmaceutical problem, but much of the blame lies on our countries shoulders for allowing insurance companies to ultimately let victims of chronic disease die. I am covered under private insurance, and state medicaid and yet still for only one of three of my medications has a monthly copay of over six hundred dollars. I don’t understand why having insurance in America basically means nothing is ever “approved” (no matter if a doctor decides it life or death) and absolutely nothing on the medical menu will ever be affordable for your dollar menu earnings.
Someone who receives financial assistance from the Government, has earning restrictions from work, and who lives dollar to dollar – doctor appointment to appointment – how in the world is it reasonable to think I could ever afford six hundred dollars on a thirty count pill bottle that is just one puzzle piece in my massive treatment plan? How in the world is it okay for “out of network” and “deductible” to exist in the medical world? I have Pulmonary Hypertension which means I need a specialty pharmacy for my medications which of course is considered out of network which means they have reason to charge me more. Is this making sense yet?
The minute we decided the sick were a business to profit from is the minute our lives were put into danger. Yep, it totally sucks because it’s the truth. We feel the fear monthly of seeing our credit score drop, the mailbox jammed with bills from doctors or pharmacies, or the mad scramble of trying to figure out a game plan because now they are saying they can’t ship your medications…which remember you can not go without. Diabetics have been feeling this pressure, and countless of young people in America have died recently from rationing their insulin. This is our country; the richest country in the world where there is plenty to go around but apparently only for a top healthy percentile. I am terrified that if I don’t die from my disease itself, I will die from not being able to afford my therapy anymore. I will die knowing that my family will never recover from burying their daughter and sister, and that I will join just one of many dusted over online articles about why healthcare is shit and nothing is changing it. I will die knowing I was too costly to keep alive.
This is the overwhelming guilt I spiral into when I add to my pile of bills, or hear people talk about how the sick are merely money money money…money to be made off these goldmine of lungs and oversized heart.
You do not need permission to exist. You are not your credit score. You did not choose this, or your debt they label you with. You are not the body you are contained within. You are not your disease.
…just a reminder the next time you are endlessly fighting for life in the hospitals and over the phone.
Paranoia thrives at the very core of my disease. We endure what seem like endless nightmare episodes of treatment failures, hospital stays, surgeries, and unfortunately glimpses of death. It is only natural that after venturing to the so called dark side and back, paranoia is a lingering side effect.
This often can be warnings signs of post traumatic stress disorder – a mental “injury” if you will – with many other symptoms and paranoia right there with them. When I was finally admitted to the ICU to start on IV therapy, my paranoia was so out of control nurses had to move my monitor (so I would stop watching the numbers) and finally they decided to push some drugs to forcibly calm me down. It took weeks of getting it under control, and when it seemed as though my life was finally somewhat steady in the PH realm of things – I lost three friends all within six months. This doesn’t include the most recent passing of the lovely Haley Ann Willow. It was completely unexpected, the grief and anger are overwhelming, and so is the mental meltdown of thinking the grim reaper has you in mind next. It has been a process of sensing when I have been triggered, staying calm while I know what my brain is doing, and how to exert control over it. Sorting the real danger that I am in from what I feel I am in is key. It has literally taken years to even acknowledge PTSD, and each day has it’s own special struggle.
After moving closer to Albuquerque where I receive treatment, I’ve changed my life significantly and yes, it’s been rough but necessary. Now I have time – something I have never allowed for myself. I have kept busy before, during, and way after my diagnosis with a full workload. However, I’m finally dedicating time to be a patient that is in compliance, and actually following through with treatment requirements instead of scattering it among a ridiculous work life, and then crashing into complete and total exhaustion. The roller coaster has finally ended – and now I have time to really find out who I am currently, continue to shed layers, and discover new ways to stay somewhat sane. I dug back into a character I hadn’t thought of since before relocating to New Mexico, and this past summer I spent a lot of time in Taos, New Mexico which was her haven – Ms. Millicent Rogers. I read books about her, drove out to her museum, studied her belongings up close, and most importantly – finally saw her for who she actually was rather than who she is widely portrayed to be.
Millicent is known for being a socialite and art collector in the 1920’s up until her death in 1953. She was an oil heiress, and therefore had a lavish lifestyle from the moment she came into this world. As a young child she contracted Rheumatic fever in which the doctors thought she would not live past age ten. Millicent however lived, and lived a phenomenal life. She married twice, and had many fabulous men in between including Ian Fleming (writer of the James Bond books), and Clark Gabel. After a painful split from Gabel (who actually made it known that he wasn’t okay with dating a sick chick – surrrrprise) and realizing she was terminally ill, Millicent up and moved to Taos after becoming enchanted by nothing other than the Land of Enchantment.
“Millicent was energized immediately by the old Spanish town’s architecture and sights at possibly the most beautiful time of year along the Sangre De Cristo mountain range. The cottonwoods lining the creeks and valleys turn yellow and gold in the fall and late summer, and afternoon thundershowers deepened the hue of the red soil and the purple ting of the sage, creating an effect that can only be called enchanted. Millicent, they knew, would respond to such beauty.” -Searching for Beauty by Cherie Burns
The striking woman carved a special place for herself in Taos. She was always in Navajo dress and completely saturated in turquoise and silver. Millicent successfully fought for Native rights, as it was these New Mexico tribes that captured her attention and love. Featured in Harper’s Bazaar and Vogue, Millicent collected more than two thousand Native American artifacts, and hosted ceremonial dances in her adobe home named Turtlewalk. A woman who knew her body was failing her, and lived a fascinating life before her end. She never allowed her illness to become bigger than herself even when she was at her worst. Millicent was always creating, writing, and keeping her innovative mind occupied with her next fascination.
“Her illness and the long spells of seeming inactivity took their toll on her physical stamina, but they didn’t touch her spirit. If anything, they incubated her newest creative enterprise.”
As I have looked closer into Millicent – past her social life – I saw the “sick chick” I truly needed to discover. We have developed unhealthy habits like letting our government, societal views, and medical equipment weigh our attitudes down to a point that we lose ourselves within our illness. We have become so focused on body perfection that we see ourselves as one big mistake. It’s an easy trap to fall into – one that often leads to trauma, isolation, and paranoia. Studying Millicent’s attitude, illness, and fashion has brought together all kinds of oxymorons for what current day has labeled “sick” and especially the era Millicent was existing in. It is of no surprise that Millicent fell in love with traditional native and Pueblo life. As I have blogged before – “The idea of wholeness is paramount in understanding Native-American perception of disability. Unlike many cultures that shun people with disabilities, Native Americans honor and respect them. They believe that a person weak in body is often blessed by the Creator as being especially strong in mind and spirit. By reducing our emphasis on the physical, which promotes our view of separation from our fellow man and all that is, a greater sense of connection with the whole is created, the ultimate source of strength.” -Laurance Johnston
Millicent was known for her quiet yet opinionated strength, and it didn’t take but a moment for people to notice her striking yet calming presence. She was known for truly living inside the body she had been given – she opened up early doors that anyone who is ill can in fact live their life while looking how they want, and feeling their best mentally despite what their bodies are choosing to do. Millicent coped with her enlarged and failing heart by taking her days slow (she was never ready to go until at least noon), appreciating daily beauty, creating jewelry that actually helped her paralysis in her right arm, and surrounding herself with culture and life even though her body was zapping her of it.
“The next day, Christmas, Brett drove Millicent out to the Pubelo to see the splendid pageant of the Deer Dance, an annual event at which the Indian dancers wear a full deer hide, the head and antlers eerily high above them, as they pay homage to the deer as a source of food and clothing by reenacting the hunt to the rhythmic chant of singing and drums. When Brett arrived at Turtlewalk to pick her up, Millicent was sitting in the bathroom with her woolly winter boots on, too weak to zip them up herself. But when they reached the pueblo to Brett’s amazement, Millicent managed to walk unassisted across the outdoor plaza of the pueblo and stand watching the ritualized dance underneath the wide winter sky, Taos mountain as always bulking over them.”
Obviously Millicent’s lavish life and opportunities are not relatable or quite realistic in today’s society especially among many of us who are chronically ill. However, Millicent’s attitude and determination are refreshers for those of us who feel held captive within our own bodies, and situations in which we had no choosing in. Millicent set examples, and blasted through stereotypical rich and sick girl expectations. She believed in providing, listening to those who were living in hardship, and giving back to communities.
“If one is healthy how can one understand the sick? Sympathize yes, help yes, care yes. But not understanding, and that we will have to face somehow because the world is sick, and the world is facing it” – Millicent Rogers
Death is absolutely unavoidable, and I am trying to come to grips with it in attempts to lay my paranoia to rest. I tend to spin out when I think of my friends who have passed on who were just like me, and Pulmonary Hypertension also inhabited their bodies. Quite frankly – I’m tired of being terrified of death. I’m so sick of obsessively watching my tubing, checking my oxygen saturation, blood pressure, and basically just waiting for my turn. Therapy is helping to take the edge off, but the true work develops in the home daily, and making active changes to improve your quality of life. Discovering this letter of Millicent’s to her son was beyond needed in understanding that death as uncontrollable as it is – is natural. My hope in general for all of us who are continuously fighting a battle to keep our life is that we simply find acceptance, and most of all peace within our bodies and minds as much as Millicent was determined to find and did. That we simply find our tranquility.
Did I ever tell you about the feeling I had a little while ago? Suddenly passing Taos Mountain I felt that I was part of the earth, so that I felt the sun on my surface and the rain. I felt the stars and the growth of the moon, under me, rivers ran. And against me were the tides. The waters of rain sank into me. And I thought if I stretched out my hands they would be Earth and green would grow from me. And I knew that there was no reason to be lonely that one was everything, and death was as easy as the rising sun and as calm and natural -that to be enfolded in earth was not an end but part of oneself, part of every day and night that we lived, so that being part of the Earth one was never alone. And all the fear went out of me- with a great, good stillness and strength.
If anything should happen to me now, ever, just remember all this. I want to be buried in Taos with the wide sky-life has been marvelous, all the experiences good and bad I have enjoyed, even pain and illness because out of it so many things were discovered. One has so little time to be still, to lie still and look at the earth and the changing colours and the forest- and the voices of people and clouds and light on water, smells and sound and music and the taste of wood smoke in the air.
Life is absolutely beautiful if one will disassociate oneself from noise and talk and live according to one’s inner light. Don’t fool yourself more than you can help. Do what you want-do what you want knowingly. Anger is a curtain that people pull down over life so that they can only see through it dimly-missing all the savor, the instincts-the delight-they feel safe only when they can down someone. And if one does that they end by being to many, more than one person, and life is dimmed-blotted and blurred! I’ve had a most lovely life to myself – I’ve enjoyed it as thoroughly as it could be enjoyed. And when my time comes, no one is to feel that I have lost anything of it-or be too sorry-I’ve been in all of you- and will go on being. So remember it peacefully- take all the good things that your life put there in your eyes- and they, your family, children, will see through your eyes. My love to all of you.
The holidays are approaching and with that being said the simple goal for me is to stay out of the hospital! All chronic illness peeps understand this scare especially if you have celebrated your holidays among a sterile, lifeless and turkeyless environment. Last Thanksgiving I spent the night in the hospital, and the next day I had a PICC line inserted. After I was discharged (and very doped up) I chose to stop by Starbucks (cue the magic) to grab my holiday drink and their holiday turkey stuffing sandwich. It was an amazing duet with my high at the time, but it doesn’t replace all the holiday plans I had. With all this being said – hospital visits are out of our control, and it is never your fault you have landed on a gurney.
Anyone who has a central line has probably been through all the lectures about preventative infection care. A central line, PICC line, any kind of anything placed into your body is an open wound and should be treated as such. This is where you can hold up your end of the deal and hopefully work with your body and medical providers to limit risks and hospital visits. The longer we have these lines in, the more likely we are to become used to the exposure and risk. We flat out become lazy in our routines – this is how a lost my first line in less than a year. We all do it. Mixing our meds is endless, line care is just the norm and sometimes a slip up can lead to complications which can ultimately land us in the funhouse. Yes, I know there are some people who have chronic infections which can be out of their control. If this is you keep reading along and tell me your story! Here are some quick tips to re-establish a routine, and keep your life line healthy this flu season so that maybe just maybe you can spend the holidays shopping in your PJ’s while drinking hot coco. Cue the snowflakes!
Keep Everything Covered
When you clean your line, change your tubing, mix your meds – anything – always keep your hands and face covered. If someone is peeking at your line or helping with a dressing they need to wear a mask as well. Limit your germs – washing your hands isn’t enough -YOU NEED ALL THE GLOVES! And breathing on your line? UM no. Cover up!
2. Those Nails Tho
I’m a female, and just as tempted to treat myself at the salon and get some flashy fake nails. Nails are a breeding ground for bacteria. There is nothing wrong with your salon treat – however – invest in a nail scrub brush and always cover your hands when mixing, changing tubing, and handling the cleaning of your line.
3. Bleach Everything
Really though, clean surfaces are everything – especially your shower head if you sometimes shower without a dressing. Bleach your shower head – anything that can come into contact with your line.
4. The Air too yo
This is already a good idea for us PH’ers but invest in an air purifier. You can pick one up at Walmart and the correct filters! They are great white noise and fans as well. When changing tubing, or changing a dressing it is also a good idea to stop your fans five minutes before to let debris and particles settle instead of flying right into what you are doing.
5. Yo – Hair is Nasty
In patient care the infection control chapter was enough to turn me into someone who doesn’t even want to touch door handles. Hair though, HAIR!! There is a reason you have to cover yours in surgery and often it’s the first thing pulled up for anyone in the operating room. Hair is loaded with all the nasty. Pull it back when changing dressings! Do not let it get all up by your line.
6. Clean Your Pump and Your Phone
Your pump has probably been all over the place just like your phone. We end up setting it on so many surfaces which touch our hands again. Take your alcohol prep pads and wipe your pump and phone down a couple of times a week! Especially during Flu season!!
7. You Do You
I’m not going to give you advice on your actual dressing. Dressings are so personal to a patient depending on our skin and it’s always changing! What worked for me six months ago doesn’t work for me today because I developed an allergy out of no where. What you are cleaning with, what you are covering with is up to you and consulting your doctor. My only advice however is to give yourself a loop within your dressing or tape. If your line gets tugged you don’t need to feel it, and put your line at further risk. Tape down more line to give yourself tug room because it will happen.
The loop and some Veletri blood leopard rash
…And cue the speech about infection! Only you know how your line usually feels, and if it feels questionably “off” then call your doctor! My early signs are a soreness at the line and a swollen “puff” around my line entry. The infection I was hospitalized for on my first line (pictured below) happened within hours. I saw my doctor the day before and drove home happy as a clam with a healthy line. The next day I awoke to a sore line. While getting ready, my chest around the line felt sore and hot. I kept watching too as I applied my make up, and noticed a red tint around the opening. Three hours later the red was huge then tracking perfectly up the line. My doctor responded with – “I just saw this line yesterday I cant believe it! You have to come to the hospital now!” I was a textbook example of infection. By the time we made it to the hospital my entire chest on the right side was extremely sore and painful. The faster you act the faster you will help yourself, and the longer you may be able to keep your line!
All of these extra precautions (and probably even more!) to make you feel like you are working in a lab…I know, I get how sucky it feels to be extra. But this is your life line, and should be treated as such. You are high maintenance and it’s worth ittttttt.
If you have some tips or an infection story please comment below to help us all out! Also have you seen what products are up?! Check it out under the SHOP tab!
“What would you tell a recently diagnosed person?” is a question I received not too long ago, and one that resurfaces quite frequently. My mind quickly flashes over tubing scars, hospitalizations, horrible separations, and intense moments that left you almost searching for hidden Grey’s Anatomy cameras. How do you even sum all of these experiences up into a limited word count that could possibly help anyone who is about to be sent over the edge of that same waterfall?
Your mental health is not an accessory to your routine healthcare. It is your routine healthcare. That’s what I came up with.
With all of the changes we endure and that I have especially endured, it is known that this is the underlying highlight of all my current work. My art, my writings, and my rants. The beginning of this blog is sometimes a stark contrast into the person I developed into today, and I am working on becoming okay with that. A lot of times it is hard to not feel like I am failing on the inner workings and my attitude. About four years ago, I was at my worst and I literally could not help it. I felt as if I wanted someone to keep me sedated daily so I would stop thinking, and verbalizing exactly what I was experiencing. But as stated a million times before – years later I would find out that this was far from my control.
It is common knowledge that mental health has been on the back burner for a very long time – globally. Mainly – in my opinion – because it is not seen and it is perceived as scary. We fear what we do not understand and for too long we have refused to truly comprehend how mental illness can actually change you. The brain is the most powerful organ in the body. Let me repeat; It is an organ, and just like any other in the body it deserves its own upkeep. With other organs failing in our bodies, and especially chronically ill patients, it becomes extremely hard to upkeep other parts of our life because we already spend so much time and money on mandatory doctors. The thing about it is that eventually your mental health will become mandatory, and by that point patients are usually suffering an exponential amount to be pushed to reaching out. I want this to stop for everyone – I want us to stop reaching a point to where we can’t take it anymore then we decide we need help. Some don’t even make it to help, and instead end their suffering and life.
Why? Because we are taught that mental health is “extra.” Literally. Extra money, extra time, boujee healthcare that we don’t make time for. Instead, from the beginning of your diagnosis this should be tagged along to all of your main appointments and requests. It is your healthcare. Take care of your most powerful organ…sounds pretty simple doesn’t it? That is my simple request, and verbalization not only for the newly diagnosed but for any of you who are progressed in your disease process. Find someone today, and it may take a couple of someones until you find the right fit. Mental healthcare is necessary healthcare.
“Mental illness is the only disease that can make you deny its own existence. Certainly the idea that the brain can deny its own illness is a frightening thought.” -Natasha Tracy