Update: After several months of having your incredible support, my surgery is less that 24 hours away. Depending on what I feel like counting, this is either surgery #9 or #10. This morning sitting with a friend, I was going over the many possible discoveries that this exploratory surgery might reveal and I found myself listing things I hadn't thought of for months -- tumors, ulcerations, chronic obstructive diverticulitis, Esophageal Cancer, Gastroparesis, Ulcerative Colitis, nerve damage, polyps, peritonitis -- I know I am forgetting something! Needless to say, it is inevitable this is not going to be my last surgery. Living with Common variable immune deficiency (CVID) -- a disorder that impairs the immune system -- keeps me highly susceptible to infection from foreign invaders such as bacteria, viruses and often develop recurrent infections, particularly in the lungs, sinuses, and ears. Blood and gastric cancers are particularly frequent as are increased incidence of autoimmune or inflammatory manifestations, granulomata and an increased susceptibility to other cancers. Tomorrow we find out more information about the progression of the CVID fallout.
Many people with CVID don't live until adulthood and I am grateful for every day I do have and that I get to make art along the way. However, being out of the studio for much of the last year and paying for SO MANY out of pocket medical expenses has depleted my energy and the very last drops of financial stability. Once I recover from tomorrows procedure, I may be having to look for a new place to live due to eviction. I have been homeless several times before -- never with this level of illness -- and it scares me. I know my immune system will not hold with much more stress. Thankfully a secret santa has agreed to pay for me to have an art studio for as long as I need it in 2019.
PLEASE if you can, continue to help as I recover from #9 and try to find long term solutions to the stark realities facing a disabled woman who is doing the best she can with limited time left. I am aware every day I have here is limited. It is inevitable I will develop tumors that are no longer benign and my lungs further fail. Please help me make what time I have to create art and change lives as stress reduced and as positive as possible. THANK YOU.
I will let you know how tomorrow goes!
As many of you know, I've been battling severe illness the last few years, and have been sick off and on since childhood. Last year my doctors and I discovered - after 3 years filled with countless immunology tests - I have a congenital primary immunodeficiency that leaves me ridiculously susceptible to germs (bacterial & viral infections) and cancers. I've been fighting through all of these - including some known (and still present) benign tumors - one on my adrenal gland and two in my spine.
Last may, I fell ill with my fourth case of bronchitis in six months and it quickly developed into pneumonia. I've never fully recovered from this illness and it exacerbated a long standing battle I've been fighting with my gut - including surgery and life threatening infections. I've spent the bulk of the last year "in bed" -- exhaustion and illness causing me to have entire weeks of which I can't recall. One year ago, I'd just finished two large exhibition projects in NYC and was in the studio full-time and on a fantastic upwards career swing. Its been a long year since that momentous apex.
I'm a resilient, tough woman who has consistently persevered through many many health issues and I don't give up. Last month I realized I might not be able to recover from this latest health onslaught -- and that maybe the best case scenario for me will be finding a modified way of living my life to the fullest with disability adaptations and acceptance of limitations and create new artwork that is aligned with these limitations -- as some of you know I've already constructed a bed easel where I can draw and paint from bed. On the days I can, I go into the art studio for about 2-3 hours before I must retire to home, exhausted.
I have been a life long advocate for folks with disabilities and for equity for everyone in underserved and underrepresented, marginalized groups. I've masked the true severity of my health situation because while I am a huge social activist for others, I am a proud woman and am afraid to show vulnerability regarding the true tenuous frailty of my health. I live every day knowing that THIS may be the today I catch the infection I can't fight off, THIS could be the day I fall and develop an injury that sparks a series of events I can't control.
Please help and share this fundme if you can. Community, my Sangha, thank you.
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