Posted by: The Sumaira Foundation in NMO, Proche-aidant.e, Voices of NMO
Neuromyelitis Optica – a rare disease that appeared out of the blue and had a mission to suck the life out of my dear sister. At first we thought that it was Multiple Sclerosis, at least that’s what the doctors said. NMO was and still is a new phenomenon. This is why many, including my sister have been misdiagnosed. My sister, Tanishia Tramble, was diagnosed with Multiple Sclerosis when she was 15 years old and was treated with MS medications.
The first clue I remember was wetting the bed. We both had that same problem when we were little but I remember she started getting tested shortly after that for something else. I didn’t think anything of it until we got pulled out of school one day and had to go to the hospital. There were many visits to the hospital after that. The seizures pop up in my mind a lot because even then I thought I had lost my sister. I thank God for giving her to us for 33 years.
We used to play in the backyard at our house on 26th and Jackson in Seattle, Washington. I remember it like yesterday. We had our sleeping bags, we made mud pies and were always waiting in the spring for the tulips to rise. She used to take care of me and then the tables turned after I graduated from Howard University and found myself taking care of her. In 2008, after numerous tests, the doctors mentioned something new they found. It turned out that she was suffering from a disease similar to MS. It was described as a rare disease that affects the spinal cord and the optic nerve. After that things seemed to make a little more sense but the disease is so rare that a lot of doctors don’t even know the first thing to do when people have an attack or “episode.”
In 2010 she was still able to walk and do things for herself and even had her own place. In 2011, I decided to go back to Howard University to pursue my Masters in Film, a dreamand passion I’ve held onto for many years. My sister was still in the hospital when I left that day and I made a promise to her that I would come back if and when she needed me.
It was not long after that things took a very rough turn back in Washington, DC. The main problem was financial aid which caused me to lose focus on my studies because I was working a couple of jobs. In undergrad I was blessed with the Gates Millennium Scholarship which was a full academic Scholarship that allowed me to attend whatever school I wanted to and I chose Howard University. Later in the semester of 2011 I got word that my sister wasn’t doing so well. I prayed on it. I then had a vision that she was in a casket and that really persuaded me to head back home to Seattle for a visit. When I returned I was met with a crossroads. Which way would I turn? On the one hand I wanted to stay in DC where I felt free on the other hand I really wantedto keep my promise to my sister and be there for her. So I took the road less traveled by and put my Masters on the back burner because of love. I never expected what was to come for my sis and I but I’m glad that I was able to be there with her for what would be the last years of her life.
While in Seattle I never lost my passion for film and found myself deeply connected in the community serving as artist in residence at Langston Hughes Performing Arts Institute. My company, Purple Reels Productions received a leadership award September 20, 2013 from Women of Color Empowered for excellence in the community. This award I dedicated to my sister who was always my number one cheerleader and best friend.
She was a fighter until the very end. It was back in 2010 that my sister agreed to let me make a film about her life. For the initial interview I set up her living room with the lights and two cameras and let her tell her story. I look back on it now and see that it was no coincidence. I even had the chance to be in the presence of hund reds of people who were also battling NMO at NMO Patient Day 2012. This is an effort by The Guthy Jackson Charitable Foundation “A Rare Approach to a Rare Disease.” After that conference I was very moved and decided to become an NMO Advocate. December 17, 2014, I decided to stay home that day and didn’t know why. While laying down on the bed I started to think about my sister and just then my mother called me and told me my sister died. After that moment everything became more urgent and real than ever before! I use the #hashtag #FilmisLife + #FilmisJustice + #NMOAwareness + #NMOMustGo
My goal now is to use my company, Purple Reels Productions as a tool to preserve my sister’s legacy by spreading NMO Awareness. I would like to produce a narrative film but right now the focus is on “The Purpose Of IT All – My Sister’s Story: 18 Year Battle With Rare Disease Neuromyelitis Optica.” My ultimate goal is to attend New York University to pursue my Masters in Film. In order to do that I must pay off a debt to Howard University in order to obtain access to my transcript a mandatory requirement to be included in my application. Pleasevisit gofundme.com/PTCollegeFund to donate and/or share within your networks. Press Contact [email protected]. For all other questions concerning the documentary contact [email protected].
