You get up, get dressed, do treatments, down a coffee and you get to The Metropolitan Museum of Art. What an amazing gift to have this at your doorstep! This is going to be a great day. Suddenly, you feel overwhelmed with exhaustion. You need to sit down. You want to curl up on the cold tiles of The Sackler Wing in front of the Pharaoh and sleep. You need to re-evaluate the plan for the day. The truth is : there is no plan. This is the world of end-stage CF. A world with no real plan. It’s unpredictable and it cuts you off at random intervals. And we’re only talking about something luxurious like going to a museum. Because in end-stage CF going to a museum is the ultimate in luxury. Walking around without the need to actually go somewhere directly – expending energy for leisure’s sake – is the ultimate luxury. It became clear that to execute the museum trip we – my Mom and I – would need to borrow one of the many wheelchairs available to visitors but it would need to be one with a holder for my giant tank of o2. (A note on wheelchairs: I absolutely refused to get into them my entire life until the last trip to the museum with my Dad when I took one with my smaller o2 backpack tank. One of my constant battles with insurance the past five months has been to get a small portable o2 machine that will make my life easier. It can be plugged in and charged up and so does not run out in the way tanks do. Any time it is low you can just plug it in. But they won’t supply the one I need so because I have a higher o2 requirement now I need to carry the giant sized tanks. They have to be rolled which is why popping them in a backpack or rolling a tank and a wheelchair together are not possible.) Unfortunately, the wheelchair that carries o2 was rented out by someone else that – according to the security guy – didn’t actually have o2 to carry and so I hung out a while in the hopes they might come back. Eventually, I had to make the decision: Do I go home or do I stay and soak up a small visit? That’s end stage CF. There are days when walking half a block to sit in Starbucks chatting over coffee a half hour is the goal of the day. There are days when two hours supervised pulmonary rehab work out is the goal of the day. Sometimes, it’s getting to the kitchen and back to the bed. Today at the museum, in lieu of any adequate wheelchairs, we chose to sit down and eat soaking up the amazing sculpture garden. On the way to the cafe we met one of my favourite inhabitants of the museum. It’s the Wounded Amazon figure.
“In Greek art, the Amazons, a mythical race of warrior women from Asia Minor, were often depicted battling such heroes as Herakles, Achilles, and Theseus. This statue represents a refugee from battle who has lost her weapons and bleeds from a wound under her right breast. Her chiton is unfastened at one shoulder and belted at the waist with a makeshift bit of bridle from her horse. Despite her plight, her face shows no sign of pain or fatigue.” says The Met website. I am and have always been hugely inspired by these warrior women and feel a kinship with their tribe. I like to say things like “Amazon Power!” to my female friends to give them a boost or to cheer myself along if I’m going into something difficult.
Just after my 30th birthday last March my father wheeled me around the Met during a tour where the guide stopped at that very statue and noted the wound beneath her left arm accompanied by the Amazon’s naked breasts and strong face made her a vulnerable and sexy character. This shocked me. This weird male gaze on the ultimate powerful warrior woman was claiming her dying experience as sexy because of a naked breast and an open wound. I told him perhaps her naked breast had to do with her being in battle and not giving a hell about something ridiculous like covering up her body while literally slaying. His analysis reminded me of how sometimes people project onto those battling hard without having any real perception of their fight. I would bet the Amazon wasn’t concerned with being sexy or his viewpoint probably given she was one of the most badass warriors in the world. (Ok, I know history puts them down as mythological but I can’t help feeling they were out there somewhere. )That Amazon was fighting for her life and maintaining strength and dignity in her darkest hour despite everything. I’m pretty certain of that.
This whole scenario made me realise I should blog more. I have thought about it often the past while and then resorted to microblogging on Instagram. D’oh. Perhaps it’s easier because darting off a short note about the day is less imposing than staring at a blank page when so many factors and emotions are involved daily. Another, more clear cut, reason I felt I needed to blog was that my friend recently asked me what being listed for transplant meant. He said he was trying to piece it together from my social media. It never occurred to me that he would be interested. Perhaps more people are interested. Since transplant became real for me I have read many blogs on the subject and those women blogging have made me feel more secure and comforted by sharing their experiences. Hopefully, I will be able to share mine and help others too.