In a recent post on Faceboook, KTN Senior anchor Yvonne Okwara wrote about her older brother. She opened up about her personal life, unlike her usual self. In the heartfelt message, she talks about her deafblind brother and the journey her family has gone through in her care-giving.
Deafblindness is a combination of sight and hearing loss that affects a person’s ability to communicate, to access all kinds of information, and to get around.
It is not just a deaf person who cannot see, or a blind person who cannot hear. The two impairments together increase the effects of each. Imagine how hard that would be on a person and family?
Yvonne Okwara explains her journey below:
“MY JOURNEY WITH ALBERT OKWARA
2 years ago, True Love magazine asked me to be on their cover. Because, I tend keep my life private, I was a bit hesitant but went ahead anyway. Judith Mwobobia was quite the interviewer. It was her questions on my background, however, that I was not ready to deal with. Not that it has ever been a big secret, but everytime I have talked about it, I have earned pity, shame, endless questions about religion and traditional curses, and finally isolation. You see, my brother has a disability. Allow me to introduce you to him. Albert Okwara was born close to 50 years ago. He is deafblind. And yes, it is one word. Not deaf and blind! I talked to the True Love writer about this with no hesitation at all. It was refreshing and scary to say this on such a public platform. Had never been this open about it. What followed was great support from readers and also lots of people just thankful that someone else was living with this in the family and was speaking up about it. However, I wasn’t ready. Perhaps, selfishly so, based on past experience. I have grown a lot since then and appreciate the platform I have to speak up, share my (and my family’s) journey, if only to give someone hope.
Let me start at the beginning. In the 60s, while expectant, my mother contracted German Measles. It has no symptoms. By the time she was giving birth to her first born son, there were complications. Mental retardation, and deafblindness started to set in. She tried everything, no door was unknocked, multiple surgeries, consultations. She talked to every doctor in the country. All of them, including, the professors, told her they had travelled far and wide and had NEVER seen anyone like my brother. That he would not live beyond his 5th birthday. Or his 10th. Nor his 12th. Albert Okwara is still here! 50 years later! What a journey it has been. Friends have fallen along the way, those that could make the choice did so and exited our lives. Called it a curse. To the entire community! I won’t name names but he knows himself!
The world of disability is a lonely one! The road has been lined with tears, pain, dashed hopes. But it has also had wonderful lessons that have made me who I am today! Let me explain, Albert is deafblind. He does not see, speak or hear. His perception of the world has been through his primary caregiver, his mother. My mother! We have cared for him, fed him, clothed him and bathed him for close to 5 decades now. Today the round-the-clock care continues. Many times I have asked myself how different life would be if he had just one of the senses. What would he say to me? About my work? Life choices? Wish he could have been the big brother to shield me from the bullies. Stand behind him when those people in my neighbourhood where I grew up said nasty things (you know who you are). Wished he could have walked me down the aisle. Instead, it was the other way around. I had to grow up fast. Be the ‘big sister’. I bathed him, clothed him and fed him and protected him from the world that has such high levels of ‘perfection’ that it shuns anyone who seems ‘less than perfect’. Sometimes I mourn my lost childhood but it was for a good cause. For a man who is a pure. For that is what Albert is. He has seen no evil, heard no evil and uttered no evil. Literally! His soul is pure. No ill will. No malice. And that is why I will fight to the death for him. Sacrifice everything for him. It is my mother to whom I am forever grateful. She could have abandoned him. As some have done. She stayed with him. Nurtured him. Paid the price, sacrificed good jobs in the private sector, opting for a job in the civil service that had flexible hours to allow her care for ‘my son’ That is how she lovingly refers to him. She put all relationships aside because she did not want distractions from the job she believes was given to her by God! Through her I have seen the true meaning of unconditional love.
You see it is hard to love someone who can’t show you the love in return. Hard to care for someone who can’t say thank you. But it is a most rewarding experience. My mother has done it without ever tiring! Ever complaining.
So why am I speaking now? Because I hope my story will help someone. I don’t have a plan yet for how I am going to use my voice to speak for those who can’t but I am finally brave enough to start with this one step.
To parents, siblings of persons with disability, stay the course. We have done it for 50 years. You can too. For those that judge mothers, walk a mile in their shoes first. To fathers who stand by their children with disability, I applaud you! For anyone who just wants to talk, I am here, if for nothing else, just to listen to you. I have been there, I know!
For a start, in this new phase of my outreach, I have reached out to friends to help me. One such person is Daddy Owen. So join us on Saturday for the Malaika Awards that celebrates and honours those who are making a difference in-spite of their challenges. It will be a celebration! Not a pity party!”
These amazing people have been able to love and care for Albert for 5 whole decades without quitting, and are still taking care of him. It just goes to show how big their hearts are, and should be an encouragement to those out there that bear the “burden” of taking care of persons with disability. They are in your life for a reason and may help mould you into a better individual and teach you a thing or two about life. God bless the Okwara family.