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.
-haley.
“Dear Paulie,
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.
haley ann 