Through the process of art making, I am able to discover, understand and define myself. My current body of work is a reflection of my very personal journey with HAE, or Hereditary Angioedema, which is a rare genetic disease. My body does not make enough of the protein C1-INH that is found in blood. HAE can cause considerable swelling in many parts of the body including but not limited to: the face, larynx, GI tract, hands, feet and joints. People have died and suffered greatly from this disease. I have a long history with this disease and have suffered more than I'd like to admit. I also have a long history of denial, repression and other defense mechanisms all which have kept me from fully coming to terms with my disease. It is a daily struggle to prevent an attack. Even when every precaution is taken, a HAE attack may happen suddenly and quickly. Any number of things can trigger an attack including but not limited to stress, illness, menstration, mild trauma, traveling, strenuous exercise, and eating dairy or gluten. Imagine being so swollen it hurts to walk, use your hands, or eat and drink for days because your intestines are o swollen. These are the things I try to prevent from happening. HAE doesn't stop at the physical level, it is much more complex then that.
Along with the physical pain there are also many complicated feelings, thoughts and emotions I must work through everyday. In contemplating these feelings, I have come to liken them to the five stages of grief and loss which are 1. Denial and isolation; 2. Anger; 3. Bargaining; 4. Depression; 5 Acceptance. Instead of taking these feelings to a dark place I wish to accept them so I can properly deal with them. I am doing so by way of art making.
Historically, adornment was meant to show one's social status; a proud symbol of wealth and abundance. Creating something and adorning one's self with it is to claim importance. From my medical history comes a tension between attraction and repulsion. I aim to turn the repulsive into something beautiful with my work. Conversely, my own bodily experience is wrought with pain, misery, setbacks, guilt. resentment and depression. Some of this comes from the fact that I must use needles and syringes to inject m y medicine intravenously to prevent and treat HAE attacks. The ring I created features a green plastic protective top that comes from my medication vials. A major process featured on the ring is etching. Etching corrodes part of the metal to produce a design, image, or text. The medication name, "Frazyer," is etched within the biohazard design. The chemical name is subtly etched into the silver band. The use of needles and the biohazard symbol are repeated imagery in my work. I modified the biohazard symbols to appear as if they were swollen as edema throughout the body is a common complication of my condition. The cuff, scepter, and crown were all made to symbolize that I can wear my condition proudly.
Social convention dictates that we are expected to follow a certain timeline and guideline to fit in and be "normal." My life experiences paired with HAE has caused me to question these "rules." At the beginning of my journey I denied HAE. I hid my pain so that I would feel "normal." My work especially my body piece entitled, My Venerated Sacred Goddess, is abut my journey in finding my own "normal" and finding my inner venerated sacred goddess. She is the one I call on when hopelessness and despair fill my head with negative thoughts. This body piece uses jewelry to transform the body into something more powerful especially for me as a women. Keeping in mind that in life not everyone starts at the same starting line, women could use some encouragement and inspiration from others. It also uses the biohazard symbol which was first made into a pattern. I am interested in using the pattern to change the biohazard symbol into something visually appealing. I chose to use feathers because they are soft and strong, as am I. Water does not soak and weigh down feathers, it repels it. When I have an attack, I must not let it drown me.
All of these design choices are a parallel to how I deal with my condition. I must stand up strong despite this disease. I cannot take it to a dark placed allow it to ruin my life. The transformation of something "bad" into something "good" is essential or I am defeated. It is suggestive of acceptance and hope. In this way, my work is very cathartic, helping to relieve and cleanse my emotional tensions. My medical history is not something I would normally be open about, but I wish to grow and fully accept my condition. This must happen first so I am able to cope with all of the complicated emotions that come with HAE. If I can cope with HAE then I can help others with the condition as well.
We humans designed to avoid things that are uncomfortable, difficult, scary, or that which poses a threat to us in anyway. In the past, I would have done anything to avoid sharing my medical history and showing my pain, guilt, resentment and shame. In sharing my story, my hope is that I will inspire someone to share and work through their secret pain, whatever that might be, so they may relieve their suffering and have a better quality of life. Through my artwork I wish to start conversations with others to gain understanding of their pain. These stories are a way of spreading compassion for ourselves and others. It is also a way learning and understanding myself and others in a much deeper and meaningful way. Many beautiful Souls come from tumultuous times or tragedy in their lives. I wish to have the pleasure of meeting these beautiful souls and having open and honest conversations with them.
Related objectMy HAE Scepter