Eva Achoch Olala

EvaMy name is Eva Achoch Olala, a proud daughter of my parents and the seventh born in a family of four boys and five girls. I live in a beautiful country in East Africa called Kenya. I was born a healthy and heavy baby girl 28 years ago. Two weeks later, my mother noticed my feet were abnormally facing each other, and I had to be taken to the Kenyatta National Hospital in Nairobi, Kenya for further examination. The report wasn’t that bad, though my legs had to be plastered for six months to make them straight. I still don’t know if that had anything to do with my condition now.

When I was in third grade at the age of eight, I started feeling weak. Although it wasn’t showing much, I had a problem relaxing my muscles. I remember I could stand still, but my body wouldn’t relax. My parents took me to the Aga Khan Hospital in Nairobi and after, the doctor said I could not go back home so I was admitted. It was a difficult moment for my parents and me because we were not prepared for the aftermath. The following day the doctor came for routine checkups and after the injections, I was given a pen and paper to write on. The doctor told me to write my name and I managed to scribble something down that obviously wasn’t my name. I was not sick according to me, because my body wasn’t in any pain, and I kept on wondering why I couldn’t write my own name. It’s not that I didn’t know how to write. My fingers just refused to respond and the nurses were not helping either; they kept on saying the disease does not affect people from our region and the news kept shocking us the more.

After a month, when the shaking stopped and my muscles were more relaxed and I could write my name and anything the doctor told me to write down, I was discharged from hospital. After that, I used to go every month for injections. It was a painful experience, but I thank God that after two years, the doctor said I was okay, meaning no more injections. I started feeling weak again at the age of 12, but there was no cause of alarm yet. The weakness finally manifested when I finished primary school. My legs just couldn’t move as fast as I wanted and anything, including a missed step or a simple push, could make me fall.

This condition started as a joke. I remember my sisters and I joked about it, cause for them, they thought it was my way of escaping house chores. I still thank God for them because when we all saw it was something serious and the progression much faster, they have been by my side, and ever since I have always felt protected and loved.

My parents finally decided it was time for me to take the trip back to hospital. We first went to Dr. Anthony Were, our family doctor a Consultant Physician and kidney specialist, who later referred us to Nairobi Hospital to see Dr. Adam (I can only remember the first name).

I was diagnosed at the age of 14 with Limb Girdle Muscular Dystrophy after first undergoing physical exam at the Nairobi Hospital and then being referred to the Aga Khan Hospital for further blood tests and physical exams. It was after these tests that I was told that I had an inherited condition. The news was shocking, especially when the doctor said the condition had no cure; I got mad at the doctor because he was so straight forward with his prognosis. It’s only recently after 14 years that I got to know more about muscular dystrophy.

I used to be an active child, I remember in primary school I used to play soccer and I was the team captain and goal keeper. Although I was not that good in athletics, I did some running too, but always gave up even before reaching halfway. I played a little bit of basketball, table tennis, and soccer in my first year of high school, but stopped because I couldn’t keep up with the other students. They were too fast for me.

In 2005, I used to go for laser therapy and it was very expensive. Every half hour session cost kshs 12,000, approximately $150, and I had to go thrice a week. I stopped going because of the fees. I don’t know if there’s anyone with MD who has ever gone for laser therapy and had good results.

My pelvic muscles have also been affected, making it difficult for me to walk fast and stairs are a no for me. Every time I’m invited to go out of the house, I have to ask about accessibility of where we will be going, and if the building has stairs and no ramps or an elevator, I normally turn down the offer. I used to have no friends, but after I joined the social network sites my list of friends has been growing by the day, one of them being Jessica (from the Speak Foundation) whom I’ve been talking to and her life gives me more to look forward to every other day. Although I only use my mobile phone to communicate, I have learnt a lot from the Speak foundation, MDA-USA, muscular dystrophy campaign UK, and Beyond Labels and Limitations. I have lost my muscle bulk, hence making my body to be unusually heavy. I just hate it when I trip and fall because getting up will require at least three people, and it will only be easy for them if there is a chair nearby, so that they can lift me up on the chair due to excess weight gained overtime. Apart from the general weakness, I don’t feel any pain and that is one thing I always thank God for.

About a month ago, I fell at the church compound simply because I wanted to reach the parking lot faster, so I told my husband that I wanted the short cut and we left the smooth pathway and just as I was going down the step, I tripped and fell. It was embarrassing. Luckily, three gentlemen helped me to stand up. I vowed never to use that route ever. My shoulder muscles have also weakened and raising my hand above the waist has become a nightmare. Although I used to feel bad when all the weakness began, I thank God for He has surrounded me with caring, loving, and understanding people. Imagine waking up one morning and you find all the simple things you used to do and always forgot to thank God for became so hard and almost impossible to do, things like dressing up, brushing your teeth, stretching, combing your hair, etc. Before all these, I used to wake up every morning, do everything by myself, and just hit the road.

I do believe in miracles because I know nothing is impossible with God. He is the God of possibilities and I trust that my time will come. Maybe it’s here with me already, who knows?

Standing from a sitting and lying position is another struggle. Once I sit down, I must be assisted to get up and if it doesn’t come, I’ll have to sit there until it arrives. I have to announce every time I go to the toilet because someone has to be there to lift me up when I’m done. In Kenya, it’s hard to get houses and social places that are dis-ability friendly. I have yet to see one accessible bus and taxi. I was hit by a mini bus one day while going home from school. This man stopped for us to cross and as we were crossing, he thought we were taking our sweet time and just decided to step on the gas. My classmates jumped and ran, but since I could not do that, he hit me, luckily I wasn’t hurt. I had rough days while going to or from school. Another time, my sister Emma pleaded with the bus driver not to step on the gas until we alight and she really pleaded, but the driver refused to listen and as I was on my last step going down, he stepped on the gas and I fell, and this time I really got hurt and that’s when he started apologizing. That was my last time to ever board a public vehicle. Sometimes when I read on the internet of how people with dis-abilities are doing great things abroad and living comfortable, normal lives, I’m left wondering when God will open the floodgates of heaven and give me the opportunity of tasting the life of dis-ability independence.

My parents and siblings have been very supportive. Never in my life have I ever felt unwanted, unloved, or unappreciated. I received the same love, attention, and education just like my siblings. Although when muscle weakness progressed from bad to worse, I must admit I received plenty of pampering and I’m forever grateful to my family. They made me who I am today. I received plenty of love from my former classmates, teachers, lecturers; they made my school years easy and smooth. God bless the Carmelite Nuns. They were very supportive and understanding. I was in a mission school, Apostolic Carmel Girls’ in Buru Buru, Nairobi. After high school, I was privileged to go to College and I graduated with a Law diploma at the Kenya School of Professional Studies now known as Inoorero University. I’ve had the privilege to meet great people in my life. In high school, I was the leader of Catholic Action and immediately after my O-Levels, I had the desire to join a prayer group. In June 2003, I was invited to a popular mission at the Dandora Holy Cross Catholic Church and from that day on, I have never looked back. I joined the Charismatic Prayer Group. The entire Holy Cross family (priests, nuns, worshippers) have given me encouragement, love, and prayers, which makes my heart want to sing and dance like King David for the glory and honor of His (God’s) holy name. The whole of Nairobi’s garbage is dumped in the Dandora area. The garbage is a huge mountain now and many people fear going to that estate, but I’m happy to say my personal relationship with Jesus Christ started there.

I got married on the 8th of May, 2010, to my boyfriend and best friend Fanuel Oyuga Olala. After six long years of prayer, we finally decided to take that step of faith and say “I DO” before God, family, and friends. Honestly, when he proposed, I thought he was kidding. It took me two years to realize he wasn’t joking. You know if you have dis-ability and you are a woman, the challenge is even greater. I’m happy to say my husband is a fast learner. He is adjusting and more so understanding. His love brings sunshine in my life. I never thought someone could love me this much, someone whose not my immediate family. To God be the glory. I have adapted the new lifestyle. I’m now a married woman living a married life and I love my new life and calling. I just love the way God works. He can never give you a partner who is not a bone of your bone and flesh of your flesh; my husband is a “sickler” (meaning he has sickle cell anemia) and he understands life better than myself, having undergone gastric bypass as a teenager due to sickle cell complications, and suffering from pain crisis. He is my inspiration. He makes me see my situation as nothing major and I thank God for bringing him my way.

Just before I got married, my dad bought me a wheelchair. Although I’ve had difficulty accepting that I need the wheelchair because my muscles have weakened overtime, making it difficult for me to walk, I finally swallowed my pride and let the Holy Spirit take control over my thoughts and take away the pride out of my heart. I used the wheelchair on the 27th of June for the first time. It wasn’t as bad as I thought. I’m glad I did because it showed me how important the wheelchair is to me right now. As I use my wheelchair now, I also pray for someone to bless me with a powered wheelchair. It’s sad to note that I only go out on Sundays while going to church because my husband works the whole week apart from Saturdays, and to go out, I must call my parents to send someone with the car to drop us.

For the past few years, I’ve been yearning to start a nonprofit organization to create awareness to the general public on muscular dystrophy and neuromuscular disorders. I’m happy the dream has finally come to pass. In Kenya, we have so many organizations for dis-abled people and none of them specifically deals with neuromuscular conditions. My family members have been urging me on to start one and I’m happy to say with the help of my husband and their continuous prayers, I will be able to help others who are in need and afraid to come out. I want the general public to stop stigmatizing, know more about neuromuscular conditions, and for them to realize it’s offensive to stare at someone just because they have dis-ability. The name of our organization is the Muscular Dystrophy Awareness of Kenya – musculardystrophy.musculardyst@gmail.com is our email address. Anyone with muscular dystrophy, other related neuromuscular, any physical conditions are free to join us, or if you feel you want to help us in our journey to fight the challenge, welcome aboard.

It’s hurting whenever people talk about you and instead of asking you a question about and concerning you, they ask the person next to you or the one accompanying you. I would like to say that, unless someone has intellectual dis-ability and cannot respond to your questions, please do not assume anything. Like I said before, it’s hurting and furthermore from the lips of Jesus Christ himself, “why remove the speck from your brother’s eye yet you have a log in your own eye?” According to John Graybill of Beyond Labels and Limitations, limb girdle muscular dystrophy approximately affects 1 out of 100,000 people in the world; I think this is why for the last 14 years since I was diagnosed, I have never met someone with the same condition as mine. Muscular dystrophy affects one of the most important tissues (muscular) that impact two of the virtues most appreciated by humans- life and independence.

We as human beings should live beyond labels and limitations, and this specifically goes out to employers who look at your dis-ability before they look at your credentials. “Remember I’m not that wheelchair; the wheels are just a tool to make me move from one place to another, the wheels have got nothing to do with my intellectual capabilities.” If I’m qualified for the job and I have passed the interview and you have a vacancy, why look at the wheelchair or my dis-ability first? I have a new calling and I’m going to use all my energy on it.

I would like to quote the words of Jamie Parker, an American who suffers from Congenital Muscular Dystrophy. Her advice to any one suffering from any kind of dis-ability is: “No matter what your dis-ability, there is always a way to attain your goals and dreams. When there seems to be road block after road block, in your way, with no answer in sight, continue to push on because there is always a way to achieve what you want.”

As the doctors all over the world continue to research and try to come up with a cure, we should put them in prayer. There is no cure for muscular dystrophy yet; but with the grace of God, a cure is almost here. I can smell it.

I thank God He gave me a cheerful heart. Even when my spirits are down and self esteem low, His word is there to lift me up, and moreover He gave us His only begotten son, the one whom He loved dearly, to suffer for our own sake, therefore, I do believe I can do all things through Christ who strengthens me. God gave us power through our minds, and if your feet can’t take you places; you should use your mind to take you places. Do not be afraid to ask for help, keep hope alive, believe in miracles, and don’t let your bodily limitations dictate who you are.

I choose to live beyond labels and if anyone has a problem with the way I walk, how I stand up from a sitting position (because that is the funniest and tongue tying style I have ever seen), or how I do my things, well I’m sorry, I’m just trying to fight the challenge and any outsider who thinks I’m just being lazy, think again. “Cast your burdens unto Jesus for He cares for you”.

Eva Achoch Olala can be reached at sweeteva82@gmail.com

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