In Patagonia: Life with Virginia

Here's what I had to say on the night of February 14th:

"Well, it´s my last night at ¨la Chacra¨ in El Huecu, and I´m feeling a lot of things. Two feelings compete most heavily for my attention, however: sadness and fear. Sadness to be leaving what has felt like a temporary family, a group of people who have shown to genuinely care for my well being. Sadness to be leaving these horses, this town, and the freedom to explore, empty handed, in these raw, unforgiving hills.

And then there´s fear. First and foremost, my fear of surrendering this small haven of safety that has developed around me here. Fear of setting out on my own, unprotected, with few solidified plans or people to meet me along the way. Fear of uncomfortable bus rides, prolonged by anxiety driven by a lack of familiarity, missed connections, and the possibility of feeling truly alone. Fears of theft, assault, or an inability to access money. Panic attacks, injury, or sickness.

But, you know Mom, I´m going to be ok. I´ve got Millie Cumming´s voice in my head, as it often is, telling me to trust that things will work out. And so I breathe, and try to take it one step at a time. Step, by step, by step. I´m deconstructing my next month and half, compartmentalizing my time, where I will sleep, what I want to see. A few days at a time. Well, that´s the idea at least.

I´ve been here for 1 month and 4 days, 3 weeks shorter than I had expected to stay, but 3 weeks longer than I thought I would last after my first week here. It´s been a ride, sometimes wild and other times a tad monotonous. I have had moments of great doubt, and dissapointment, but also pure happiness. "

And now back to the present:

I realize I have never properly explained how I ended up in Patagonia in the first place. So, for a moment, let's pretend this blog is popular beyond my closest friends and family (all of whom are familiar with the underwhelming story) and go back in time a little.

In early summer of last year, while Dylan and I were attempting to find work in Campbell River, we made a visit to my aunt Catherine and uncle Colin's place near French Beach. It was here that I was introduced to the Caretaker Gazette, an online publication advertising (primarily) house-sitting positions worldwide. I took interest as I had decided to take a year off school and wanted to have some travelling experience. I wanted something more than a backpacking trip, something with a focus, something more affordable, and something that would give me the chance to practice another language. With this in mind, I came across a post by Virginia Neary Carrithers which caught my interest. This post was unusual in that it was calling for more of a caregiver, rather than caretaker. Virginia herself has Multiple Sclerosis and regularly has volunteers to help with the various challenges in her life. I pictured myself as her companion, spending quality time on a ranch in Northern Patagonia. Horses. Art. Summer in February. A chance to practice Spanish. A chance to see what a career in nursing might entail. It sounded perfect, and so I wrote.

It's funny how time just passes, and what was once a future plan becomes a present reality. And all of a sudden you're half way across the world and you have no idea how in gods name you got there.

Virginia Neary Carrithers embodies a dichotomy of priveledge and hardship. She has had great wealth, raised in the US in a rich household. She has been a member of the elite, bred and trained race horses in the United States, been internationally recognized for her art in the equestrian world. She has lived a fairy tale of rich husbands, private planes, galas, meetings with Frank Sinatra. She was a stunt driver in James Bond movie, a cosmetics model, the creator and head spokeperson for a massive campaign, "the Race Against MS". She was la Patrona of a hundred thousand acre ranch in Patagonia (a few hours ride from her current home), a queen of a kingdom. She has also endured the suicide of her father and other friends, her broher's full paralysis from an accident, her mother's toils with severe mental illness. She has been married and divorced twice, paralyzed for months by Multiple Schlerosis on a couple of accounts (beginning in her late twenties). Over thirty years with an MS diagnosis has left her body progressively worse, with periods of remission growing less and less likely. She looks back on her life with few memories of prolonged happiness, just one thread of joy: her daughter.

Ginny's physical condition is the worse it has ever been, having deteriorated rapidly over the last number of months. She is unable to walk, rarely able to stand on her own, with minimal strength remaining in only 1 leg. She little control of her hands and struggles to move them quickly or with great precision. Her eyes are extremely sensitive and prevent her from being able to stand any bright light or prolonged periods of time in front of a screen. She is incontinent, living in diapers, always travelling with a porta potty and bed pan. She suffers from chronic back pain as a result of her broken back, a product of her osteoporosis. If it is not her chronic fatigue, it is her back pain which beckons her to bed after short stints in her wheelchair. When she tires, she is unable to hold herself upright and slurs her speech, causing her to grow increasingly frustrated with our inability to understand her. She sleeps in short stints, working away at emails during the wee hours.
While her body tires, however, her mind does not. She always has one more thing to add to the list.
As her caregiver it was always a great challenge to move her body while taking care with her fragile bones. She has been known to break a rib yearly as a result of being moved by others. I had no idea her physical condition had deteriorated to such an extent until I arrived. Needless to say, I was a bit shocked.

So what is it like to work with Ginny? Well, there is perhaps no better example than the first half hour I spent with her. Picture this:

When I meet Ginny, she is in bed. She greets me with a hug and kiss and speaks to me in the familiar tone from our interactions on skype. It's a brief introduction, she calls me honey, explains that Barb will be my tour guide, and tells me not to worry, I will be given a day or two to recuperate before being put to work. As testament to Ginny's true style, however, within 10 minutes she has got me pushing her around in her wheelchair outside. We are visiting the horses. One needs grain. Another needs its forelock groomed. 5 minutes later I am trimming prints of Ginny's art and finding them frames. The requests continue and I oblige, carrying out each with just enough post-25-hour-bus-ride-nausea to remind me that I am really here, not dreaming. One activity leads to another, rarely focussing long enough on one to realize any sense of completion. There is an underlying sense of urgency with each of Ginny's requests, a heirarchy of importance building merely from the order in which things pop into her head. Its quickly apparent that my needs are lost to her competing agendas. Its like playing with a child.

My position with Ginny included everything from writing emails to scrubbing fecal matter from the cracks in the bedroom floor. I shopped, and cooked, and painted the barn door. I moved her from place to place, from bed to wheelchair and back to bed, supported her to stand, to dance, to swim courageously in her pool. I scanned, saved, and sorted over 500 photos from Ginny's multiple lives in preoparation for her 65th birthday. I slept close to tend to any needs she had during the night.
On to the bed pan.
Off the bed pan.
2am and we're reorganizing her medicine basket.
I had the honor of being her eyes, her hands, a witness to both her manic highs and darker moments of depression. Some days I felt I was left without a moments rest, while others I felt I accomplished nothing. I felt I needed to always be on the ready, always on call. At times I was left empty, sucked dry.

Given my interest in nursing, I was thankful to have the opportunity to aid with Ginny's personal care. I was pleasantly surprised to find that I was never squeemish or bothered by tasks relating to her incontinence, but contrarily found my greatest confidence and sense of purpose during these times. I found it natural to resort to humour in the hopes of easing any embarrassment or awkwardness that any one of us might be feeling. Ginny was always quick to laugh at her situation. I always admired that.

My experiences have been so varied that I find it quite impossible to identify any overriding feeling or impression of it all. Somedays, Ginny's demands would greet me with the same unabiding cruelty as the Patagonian winds. On others, I would feel liberated by the kindness she shows. One hour she would have me in tears, sprinting up a nearby mountain in order to relieve my anger. The next she would have me laughing, racing one another in her swimming pool, feeling like I could happily stay for months.
Sometimes I could sit with Ginny with the ease of an old, loving friend. Her quirky humour and refreshingly honest accounts of past lives, friends, and lovers would bring us to equal ground. It was like she could knowingly gift me with a key to unlock a barrier between her and I - without which I had a unrestricted access to her true person, her past, like a true friend.

It was Ginny in her rawest state that I appreciated most. Her moments of anger and frustration, tears, a few days of depression near the end of my time with her. Perhaps a result of her many years in the public eye, Ginny always seems to wear a mask. She desires so much to be an example of positivity, an inspiration for those who must overcome challenges as extreme as hers. For me, she was most inspiring when she surrendered to the injustice of her situation. I wanted it to be ok for her to be angry.

I feel like I entered Ginny's life at a critical time. Over our month together, I observed her coming to terms with the seriousness of her situation. She had to learn that she could get very little done. She had to stop underestimating the amount of help she needed. She had to learn to accept the prospect of never getting any better, never again entering a time of remission, sinking closer and closer to the end of her life.

By remaining at the chacra, the entrance to her kingdom, I believe Ginny is continually reminded of what MS has robbed her of. A place which used to epitomize her powerful role as 'la patrona' is now a tease, a reminder of what she once had. She seems lost, not knowing what priorities will give her the best chance at health. With life in a bigger center, she could have access to more facilities and a vibrant, meaningful social life. She will also lose her proximity to her daughter, however. In El Huecu, she has her daughter, but also total isolation.

It is no secret that Ginny is a difficult person - she will readily admit to being a pain. At first I left it at that, growing increasingly frustrated with the sense of entitlement she seemed to exhibit with all of her help. For the first 3 or so weeks, I struggled immensely with my interactions with her and internalized everything. I felt undervalued, unappreciated, and even disrespected. I had created a vision in which Ginny and I would collaborate to give her the best care possible. I wanted to work with her, not for her. This is not how it felt. While I thought I was a 'bonus', it felt more like she saw me as a burden. She was quick to point out mine and Barb's short comings and seemed to assume we should require no instruction in all aspects of our 'job', including personal care. We were assumed to be infinitely adaptable. Plans were ever changing and rarely made with consultation. Woops, sorry, there's no more room in the house... guess you'll just have to pitch a tent in the yard!

As time went on, I found the confidence to call her out on her insensitive acts. At first she was quick to use her own situation to undermine my own feelings. The more I learned to assert myself, however, the more she seemed to own her actions, apologize for her harmful words or behavior. Even though her actions did not always reflect it, she was always very apologetic. I came to know that things would never really change with Ginny, however. There was no way that one short-term, 22-year-old volunteer could change 65 years of habbit. And it was upon realizing this that I decided I must leave, for the sake of my health and happiness.

I have had a significant amount of time to consider Ginny, her situation, and how she chooses to interact with others. What I have come to know best is that Ginny's life is one big power struggle. Its a battle for power between her and MS. A battle for control in her life, and consequently control in her relationships. She is always compensating. Her interactions with others have become a vehicle through she compensates for the loss of her health. Her mind races to compensate for her physical inabilities. She is trapped, more and more so, in a body which fails to support her cognitive capacity, her love for art, for horses, and life.

At least this is my impression - I could be totally wrong.

So, would I do it all over again? Knowing how I would be treated? No. Knowing everything else that I would get from this experience (as I will describe in my next post)? Probably. Overall, maybe. Maybe if I could come equipped with more internal resources. Maybe if I could assert myself better from the start. Maybe if I could figure out a way to stay longer, to truly become a part of Patagonian life.

To finish, I am not sure what kind of picture I have painted for you here. I have had such highs and lows that I am left with indecision. I deliberated for a long time as to whether I should share such an honest account of my experience publically. I know now however, that Ginny would not be hurt by my words, for I am not the first to be so bold. Should she read this, she will laugh and nod and acknowledge that her love is an impossible love, shaped by her history and at the mercy of her illness.

Ultimately, i admire Ginny for her relentless positivity and perseverence in life. She shows a strength beyond what I can imagine finding in her position and I feel lucky to have occupied a tiny blip on her crazy life's timeline.

For better or worse, we are all her puppets. And somehow, sometimes this is ok.