By Tony Karanja
Jambonewspot.com
“I was fortunate to have access to a car and a wheelchair but what about the millions of people afflicted with autoimmune diseases- arthritis, rheumatoid arthrits, lupus, scleroderma? Surely they couldn’t be confined just to their homes?”—Rhoda Maina wrote in her letter to Oprah
As Rhoda went through the devastating effects of Lupus, she did not just sit around worrying about herself. Rhoda’s thoughts were also in Kenya thinking about those who also needed help. She was determined to do something about it even as she ailed.
According to her childhood and longtime friend, Tanya Ranguma, Rhoda was writing a letter to Oprah seeking help for an initiative she had in mind. Even in her trials, Rhoda thought about those people in Kenya who suffered from autoimmune diseases and had nowhere or no one to turn toto turn to.
Rhoda sought to start the Rhoda Maina Foundation which would be a vehicle for raising awareness to the plight of patients with conditions like hers in Kenya.
Rhoda was aware of how fortunate she was to have access to basic needs for her in her fight against this disease. She had access to a car and a wheelchair and she could not help but think of the patients in Kenya who would not be able to afford the same. She vowed to do something about it. She sought to write to Oprah Winfrey to seek assistance for her project.
Sadly, she never got to live long enough to see it get to Oprah. This powerful and inspiring letter posted below is a reflection of who Rhoda was. Her big heart never failed her despite her failing health. Maybe somehow this letter can still get to Oprah…someway..somehow and eventally we shall get to see the launch of the Rhoda Maina Foundation. Her dream lives on and may it come to fruitation.
RHODA MAINA’S LETTER TO OPRAH
Lately I find myself dwelling on this notion of living my best life more than ever. My name is Rhoda, I am young by all accounts you see I’m 26 years old and iv just gone through the toughest, hardest, most gruesome month of my life. I’d say in the last 2 years I have had my ups and downs but August of 2009 was a new down for me. I’ve been living and at times even thriving, with a diagnosis of Mixed Connective Tissue Disease for the last 8 years. When it finally hit me about 4 years ago that I had a serious chronic illness, I decided that it was not going to stop me from doing any of the things that I wanted to do that I still could do. I changed my major is school from business to psychology because I knew that in my new capacity- living well with a chronic illness, the emotional and mental tools available to me through psychology would be priceless. I also felt deep in an inner space I can’t quite articulate that I need to encourage other people. I find myself being a pillar of strength and hope to my friends, loved ones and lately even to strangers. I was always hesitant to be this person. I just wanted to blend in and assimilate and I was ashamed and embarrassed because I felt that my body was a poor representation of who I really was. How could one tell by looking at my frail weak body that I was smart, funny, strong and beautiful? I felt like a failure for needing help to get off of the chair. It killed me to have my younger sister help me get dressed up. Who I truly was and the person that people see when they look at me just did not add me in my mind and when I looked in the mirror. What changed this for me was when I went back home for my grandfathers funeral in 2003. I was born and raised in Nairobi Kenya. The love , kindness and support I received from my family and friends not only touched me but it also shocked me. These people who I feared might reject me not only accepted me and treated me like the same person I knew I was, but they were also impressed and awed by me for some reason. I was the one holding myself back. I was the one ashamed of myself when other people were proud of me! A shift transpired in my soul and mind…
While I was back home for the first time as a person with a disability I was taken aback by the lack of sensitivity and basic human decency extended to this group of persons. People would stop dead in their tracks to stare at me holding on to my brother to negotiate a step. The number of buildings that were handicap accessible were less than the number of fingers in one hand. I was fortunate to have the access of a car and wheelchair but what about the millions of people afflicted with autoimmune diseases- arthritis, rheumatoid arthritis, lupus, scleroderma? Surely they couldn’t be confined just to their homes? I left Kenya feeling happy, renewed, with a peace and joy deep within my being that I cannot begin to explain to you. On the flip side, I also felt a deep sense of responsibility to highlight the plight of other people suffering from these horrible diseases and have nowhere to turn to. Even at my most desperate times as a non insured person with a chronic pre-existing condition, I knew that I could go to the ER and get basic help. But these people in my home, the country I was born in and love so much have nothing. No wheelchairs, no crutches, no information, no medicine. It broke my heart but I didn’t feel helpless.
I decided that I would start the Rhoda W Maina foundation whose aim was to create awareness and support people living with autoimmune conditions in Kenya.
I sit here, weaker than I have ever been after the worst month of my life. I spent 3 weeks out of the month of August in hospital with the prospects of heart surgery & a colostomy looming over my head. Both procedures were ruled out after my team of doctors decided that I was a poor candidate to operate on. My body would not be able to heal itself afterwards. One of the options I was offered was hospice care to help manage my pain and keep me comfortable. I accepted it even though I know that I am not dying, but I need to be comfortable as I figure out what to do next. I feel the guiding hand of a higher being over my life and I know…I just know that this which seems like is the thing that has come to finish me, will be the very thing that will build me up and elevate me to my best life.
If I was chosen to receive the 100,000 $ (plus 10,000), I would not only be able to seek the medical help I so desperately need, but I would also get the Rhoda W Maina foundation up and running and help others like myself. I imagine how happy it would make an old disfigured woman with arthritis in a village in Kenya to attend a church service on Sunday because she finally has a wheelchair. Or the dignity it would give a bed ridden person to have a bedside commode to relieve themselves. I know, because I am that person.
Many a time we cannot answer questions about the pain we go through in life, but perhaps my pain was so that I could be a voice for others like me. As I try to complete my undergraduate degree in psychology, I would also carry out my charity work and pay for treatment for my failing digestive system. I know without a doubt that there is help for me out there-if I could just find it and pay for it.
Oprah, help me live my best life. I have realized that one cannot go through what I have been through and remain the same. As my soul and mind have elevated, so have my dreams and ambitions. I want to give the same strength and courage I have received from family and friends to those who might not be as fortunate as I have been.
I thank you for taking the time to read my story and I look forward to hearing from you.
With best wishes,
Rhoda Maina.
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