Stacie Amelia

"In transitions, we must learn to be still. Being still is, in part, about learning to be comfortable with ambiguity" —Janet Rebhan,

Finally today I began my treatment (a form of chemotherapy). It has been a long time in the waiting, many hurdles none of my own making however the day has been and gone the first two pills taken. I have not been one for medicines as previously mentioned but I just have to believe this will make a difference. I had been coping with my illness rather well and had been accepting and adapting along with it, even in times of needing to use a wheelchair. Lately however it has been a different story. I learned I had a small window before progressing into a Secondary Progressive diagnosis. It seems my immune system has been attacking me a little harder than initially anticipated. Adaptations have had to be made and considered so this treatment has been very important in the coming. It is the best treatment to date which should (all going well) halt any progression for at least four years and by that time there will be other more advanced stem cell therapy treatments available. It's also quite a commitment to make. Not only is the medication very targeted in shutting down my auto-immune T & B cells—it is also altering my DNA repair structure and I'm committing 18 months of my life to alteration and healing. It's no big deal really, it's just 18 months and soon enough I should be able to travel which I very much look forward to. It just holds off other potentials. This evening I just took a moment and swallowed both pills with the intention of them being a positive influence towards any future possibilities.

This process between heart and mind can be pretty messy. I have always struggled with uncertainty and have needed things to make sense. But I have been learning these past few years that things mostly do not make sense, that there isn't always visible or easily detectable rhyme or reason. There is logic there, however, if we look deeper, but it won't stand out or fit easily into the perception of the world that we each create. It won't always feel nice or comfortable either. Life isn't fairytales. It doesn't work out (mostly) the way in which we imagine it to. I have learned that courage is choosing to face and understand it anyway. When we are suffering, we benefit most by feeling it so that we can then know times of joy when they arise. There is no answer or fairy godmother, just realness in its rawest form. Each moment has the potential for learning.

Arrived in Drumnadrochit last night to find I was invited to share a very special birthday moment with someone I had just met. The backpackers lodge has just been taken over by new management (and their adorable baby), they had prepared a birthday cake for a member of the staff, and just as I arrived in the kitchen, they came in to light the candles. I was asked to join in the celebration with the other staff singing "Happy Birthday." I felt uncomfortable, out of place, and yet it felt nice to be celebrating for someone and nice to be singing, brining a feeling of value to a complete stranger. From the moment I arrived, I felt related; like I was an old friend. Sometimes, life has a synchronicity that is unexplainable, filled with genuine connection and pricelessness. We find ourselves in a significant moment at the most unexpected of times or places. Last week I happened to be in a shop making sounds with a singing bowl to be met with a return ting. Doubting myself, I made the sound again; and sure enough, there was another ting in response. Looking around, I couldn't see anyone. Baffled but curious, I began to play a short tune with the different bowls and a responding tune followed. Finally, I saw a younger man, hidden behind some merchandise, smiling at me and holding tiny bells. We continued to play our shared music for a while. It was a wonderful moment. At the backpackers lodge yesterday evening, the theme was connection, be it mother to baby, manager to staff, staff to guests, stranger to stranger... the real human to human moments that touch the soul and remain lasting memories.

Part of my life turning upside down was learning I have both a rare health condition called Transverse Myelitis as well as Multiple Sclerosis. Neither condition can be cured, the Multiple Sclerosis may or may not get worse, and I now need to help sustain my current health by injecting medication. Having been someone who has never relied on chemicals to heal my ails, has anxiety over not feeling in control of my body, and has a strong phobia of needles, it has been quite a personal challenge. The process of finding the right medication has been trial and error, and the first brand of medication, unbeknownst to me, was progressively making me very unwell. I was not aware until it hit acute crisis in July. I had to be immediately taken off the drug (and another) to bring me back to safety. It was quite a shocking experience, especially to learn that the medicine I was being asked to trust was more harmful than the illness I was doing my best to manage. I had been asked in consultation how things were going and did not know at the time that the medication was making me so unwell. In the process of the change, I also discovered that the medicine had been hugely limiting my physical capacity each day. My quality of life had been reducing. It has taken a couple of months of very tough struggle to pull myself back from the brink, it was an incredibly awful experience. I've changed to a different drug (albeit taken more frequently), but I have begun recuperating and cannot quite believe the remarkable difference. This first stage of the travel (aside from the art project) was to support my recuperation and also to learn my natural capacity now that I was no longer affected by the previous medication. It has been a gift, widened my awareness; and in the end, I am so fortunate and grateful to still be here in this life to experience it. It brought me to reflecting on how much we as humans are vulnerable on our own. When we are born, we need to rely on something external to be nurtured, nourished, and safe, else we are easy prey to the indiscriminate. Unlike other mammals and animals, we are born incapable of looking after ourselves in a self-protective way and this continues for "years" as opposed to weeks or months. We are truly at the mercy of our environment. As we grow, we need guidance to learn what is safe and what is not, how to conduct ourselves in order to survive (and during this time, we need those who are doing the guiding to be in good standing themselves, else we may not get all of what we need to grow, survive, and thrive). We are vulnerable to misinformation, projected fears, emotions of others, mistakes, manipulation, to being attacked, and to neglect and other forms of abuse without having the ability to stop it, walk away, and keep ourselves safe. Most of the time, we don't even know that we are not safe. As we age, we have to use our experiential knowledge and natural instinct to keep us safe. If we become sick, there are many forms of treatment from holistic to pharmaceutical, but we need to rely on information given to us by others to tell us what is best; we can't just innately know... We can try and see for ourselves, but sometimes that's safe and sometimes it isn't, sometimes we don't know something has affected us dangerously until much later. As we become older and less able to understand and discern what is supportive for us, we need to rely on others yet again to keep surviving because we are vulnerable. We need to rely on others.

I woke up one morning to find my life upside down and scattered across the floor; and as I experienced my emotional response, I have become curious about how different people make sense of their lives. After the Growing Older exhibition in 2015, I have felt struck by the heartfelt stories shared.