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Amputation | Zikoko!
  • What She Said: I Hate the Word “Disabled”

    What She Said: I Hate the Word “Disabled”

    Navigating life as a woman in the world today is interesting. From Nigeria to Timbuktu, it’ll amaze you how similar all our experiences are. Every Wednesday, women the world over will share their experiences on everything from sex to politics right here. 

    Photo by cottonbro studio

    This week’s #ZikokoWhatSheSaid subject is a 49-year-old Nigerian woman who lost a leg after an okada accident. She talks about waking up to find a stump where her leg used to be, what it’s like to lose a limb and what she thinks about how people treat amputees.

    Where should we begin?

    In 1991. My mum had sent me on some errand to the market. As usual, I flagged an okada and jumped on. More so than now, we used okadas to go everywhere. They were fast, one was always outside your gate, and they don’t call price like now. They were quite affordable. I didn’t even think about it twice. 

    It couldn’t have been up to five minutes later that a private car almost ran into us, and the okada had to swerve out of the way. That’s the last thing I remember until I woke up in the hospital. They said I fell off the okada, and it ran over my leg while the rider was trying to brake. He must’ve accelerated instead. I thank God because he saved me from being conscious and experiencing the trauma and pain. Newspapers ran my story. 

    You didn’t feel the pain?

    Oh, I did. But when I woke up days after, they’d already done all the surgeries and pumped me with painkillers. I can only imagine how painful it would’ve been when the machine actually crushed my legs.

    Both legs?

    Yes, but my left leg was salvaged through some bone restructuring at Igbobi. My right leg took the direct impact, and unfortunately, my knee was crushed. One of my greatest regrets is that it wasn’t somewhere lower. I would’ve been able to use a prosthesis right away.

    How did your knee affect that? 

    The knee is a major joint that helps you move your legs properly — sit, stand, walk, anything really. It’s hard to replicate with prostheses, and in the 90s, it was hard and expensive to get such advanced ones.

    I’m so sorry

    Yep. So I was stuck in a wheelchair, which back then, wasn’t very lightweight. 

    Let’s circle back to when you woke up for the first time at the hospital

    When I woke up, no one told me my leg had been cut off. Although I sensed everyone was behaving weird, I honestly didn’t feel anything amiss for some days. I was heavily drugged and barely sentient.

    Why didn’t your family or the doctors tell you, and didn’t they need your prior permission?

    I was unconscious for about four days, and according to them, they needed to amputate to save my life. The giant wound had gotten infected. My bones were unsalvagable anyway, and I was a minor, so my parents could make the decision on my behalf. They chose to save my life despite the costs.

    How did you find out then?

    One day, my missing leg started throbbing — what I now know as phantom leg pain.

    I started feeling small pain in the knee that was no longer there, and the ghost of my toes was twitching. The sensations were barely there, but they were uncomfortable, so I tried to move the leg. There was nothing there. I think I almost fainted when I touched it and felt… nothing.

    Damn

    It was just a slight aching discomfort at first. Over the next few weeks, it progressed to severe pain, intermittent tremors and muscle spasms. The doctors said it was mixed signals from my brain and leg nerves trying to get used to the missing section. It was also another consequence of an above-the-knee amputation.

    Tell me about readjusting

    The story gets a bit darker. I stayed a month under close observation at the hospital because amputations, especially large ones like mine caused by an accident, are high-risk. The list of possible complications was endless; one of them being that my body, helped by my brain, could decide to attack me from within because they’re confused about the missing set of muscles and nerves.

    I also bled more than expected during the surgery and had an infection on the incision, so they couldn’t stitch the stump immediately. I had tubes in my skin to drain the infected fluids, which had to be changed regularly.

    They told me I could get a blood clot in any of my limbs which might break loose and travel to my lungs or brain. If it went to my lungs, I’d have trouble breathing; if it went to my brain, it’d cause a stroke. Thankfully, none of those happened. The infection eventually went away. They stitched and bandaged me up then added a cast.

    What happened next?

    Two months of aggressive physical therapy in a nursing facility. I had to learn things like how to breathe differently and cough regularly, to prevent lung infection, and there were a lot of sleeping instructions to keep my arteries from hardening. Then the massages and wearing a compression sock. It was the most painful experience I’ve ever had to date. 

    The hospital bills, and everything that came after, including buying a wheelchair, put my parents in a debt they never recovered from — they both died before they could even finish repaying. We went from being safely middle class to lower class. We had to squat with different family members because we could no longer pay rent and barely afford to eat, after paying for the monthly therapy. I moved with my parents into my paternal aunt’s house — my mum was miserable there — and my older siblings had to stay with my grandparents until they moved out on their own.

    But my family thought it was important that I learn to be as mobile as I could at that early stage. They were very vocal about me not growing up to be a liability, and I’m grateful to them for that now, even though I wasn’t so much then.

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    Why not?

    I was a teenager. I was angry and frustrated. My secondary education was delayed for a year because of the accident, but I didn’t even want to return. To be honest, I wonder why I never considered suicide — probably because they’d banged it in our heads that I’d go straight to hell — because that’s how sad I was. Even though my schoolmates did their best to be nice when I returned to school, I was filled with bitterness and resentment. 

    The student body and PTA contributed money to pay for my SS 3 fees and WAEC registration, a total of about ₦600, and I had all my classes in the principal’s office. In hindsight, that was such a heartwarming show of humanity, and I’m grateful for that kindness.

    That’s really sweet. What happened after school? 

    I got an average result but didn’t continue school until three years later, in 1995. My self-esteem was completely gone. I stayed home, mostly in bed, and only went out when the family forced me to go with them to church or my mum made me assist her in selling biscuits and drinks in front of my aunty’s house. I hated selling with her the most because people would always stop to say something pitiful to me.

    What are some of the things you hate people saying to you?

    There’s nothing I hate more than being referred to as “disabled”. I honestly don’t know why, but the word sounds derogatory. I suppose it’s better than “crippled”, but still, can’t I just be identified by my given name. What’s the point of names if we’re so obsessed with labels? 

    I also wish people wouldn’t immediately judge my abilities. “But you can’t do that”, just because they can’t imagine someone missing a leg doing certain activities. 

    Or when people just want to help you with EVERYTHING. At least, ask me if I need help first. But I think what makes me feel bad the most is when people say stuff like, “You inspire me” or “You’re so brave” because it’s really like they’re saying, “How could you live with yourself like this?” and it can get depressing quickly.

    I hear you. So you went back to school after three years?

    I started volunteering at an NGO for people with disabilities, to get away from my aunt’s house during the day. A centre opened two streets away, and I just started going there. It was hard because I had to wheel myself along the main road, enduring stares, ignorant comments and bullying. People gave me alms I didn’t ask for on some occasions. I also practically had to sneak out of the house at first. But I just wanted to be somewhere with people who looked like me. 

    It was an informal school, where they had classes for people aged 10 to 20, doing everything from reading and writing to art and crafts. They also tutored the beneficiaries on normal school subjects. I worked as a sort of teacher’s assistant, mostly running errands, for free. 

    After some weeks, they started giving me lunch — a simple plate of jollof rice and meat. And some months in, they helped me get a small scholarship to take computer courses and Microsoft certification exams. That’s all the formal education I’ve had since then. Most of the work I do today is advocacy within social organisations like that one.

    Did you make friends?

    I had friends from before the accident who drifted away because of my self-sabotaging behaviour. Now, my strongest relationships are the ones I make at work. I have many fellow amputee friends, and constantly surrounding myself with them boosted my sense of self. However, I married a non-amputee when I was 36 — a man I met in church — but we separated six years ago. Even though it wasn’t on good terms, we’re friends today, and we support each other in raising our 11-year-old daughter.

    You prefer the terms “amputee” and “non-amputee”. Why?

    These are medical terms — I had an amputation, so I’m an amputee; you didn’t, so you’re not an amputee. If you had to use a label, use those instead of saying someone is disabled vs ablebodied, which are ableist terms. I’m still ablebodied because I run, bike, swim — things I couldn’t do before the amputation.

    How do you feel now? Do you still get sad?

    Finally getting a prosthetic leg when I turned 30 helped. It was exciting that I could finally wear matching shoes again.

    I’ve learnt that life is a constant struggle with depression regardless of what lemons it throws. Nigerians don’t know what it means to be sensitive and discreet, so it’s not enough that they point out every time I gain weight, they must also have something to say about my prosthetic leg. Children are especially direct and inquisitive about it. Today, I feel happy most of the time. I have a better perspective on life, so I don’t think too much about things I can’t help — except late at night, when I can’t help the thoughts flying in. 

    I’m glad you got a prosthesis! 

    I’m not sure I’d have ever got better mentally without it because it changed my life and was a giant boost to my self-esteem. It came with it’s own struggles, of course. I had to work for a long time to find one that’s not only comfortable but can also do everything I want to do. It cost as much as a good car, so I also had to spend months applying for a grant to get it. And I’ve had to replace it a couple of times since then because, like any gadget, they get faulty.

    Even though I lost my leg 32 years ago, I still have phantom sensations to this day. Before I go to bed at night, I get a pins-and-needles feeling, like my leg is asleep, and I can feel my foot. It’s annoying because I know my leg isn’t there, and I don’t want to feel it. But I’d rather have that sensation than pain. Some people who’ve lost a limb are in pain their entire lives. I’m grateful for small mercies.

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  • What She Said: I Lost A Leg At 19, But That Hasn’t Stopped Me

    What She Said: I Lost A Leg At 19, But That Hasn’t Stopped Me

    For this week’s What She Said, I spoke to Chioma, who had a life-changing experience at 19. She talks about what it felt like losing her leg to an accident at 19, how she has adapted to the change and getting a first-class in law school. 

    Tell me about the accident.

    I remember it like it was yesterday. I was going to visit friends at Babcock, Ogun State. I had left Ajah, where my parents lived, without telling anyone where I was off to. I got there at about 2 p.m., hung with friends and was on my way back, three hours later, when the accident happened. I was heading to the taxi park, and a car hit the bike I was on. I thought, okay, I only fell down, but apparently the impact was on my foot. The car had hit my foot, then pushed us down.

    Oh shit. That sounds painful. What happened after?

    It was. The pain was at 120, at least. I remember being confused. There was a patrol van around, so I was rushed to Teaching Hospital, Sagamu, and they did rubbish there. What got crushed was my foot, but I wasn’t given proper primary care at the teaching hospital. They used very dirty needles and equipment. During the initial surgery to fix the foot together — because it was dangling — they used regular needle and thread, then the anaesthesia wore off, so I could feel all the pain. The next day, my dad got an ambulance to take me to Lagos, and that was when we found out an infection had set in because of the poor care. 

    What the hell?

    Everyone thought I was going to die because the infection was spreading fast, and we had to make a decision to amputate the leg. My mum didn’t want to think about it; she was asking for other options. But the more time we spent trying to make a decision, the more the infection spread. My sister and dad decided for me. All I wanted was for the pain to stop, so I didn’t have an issue with their decision. Right now, I’m amputated from my foot to below my knee.

    Oh wow. How many days after the accident did the amputation occur?

    About three days after.

    I know you said you just wanted the pain to stop. Once it did, how did you feel?

    The first thing I felt was relief. I went through the procedure twice. For the first amputation, they took out a lower part of the leg, and I was still in pain. I was told I’d feel relief once it was done, but that didn’t happen. I was still falling in and out of consciousness.

    When the doctors told me it was still infected, I wasn’t surprised. Immediately I had another amputation, to below my knee, I felt total relief. I could tell I was recovering. I stopped falling in and out of consciousness, I was responding to my drugs and treatment. I was so much better. But this was physically.

    Emotionally, I had been preparing myself, but nothing prepares you, no matter how much you hype yourself. I was so afraid of my leg. When the nurses came in to dress the limb, I would avert my gaze. It was in POP, so that worked for a week. After one week, I had to stand up. When I did, I wanted to cry but couldn’t because my mum was there. I didn’t want her to cry too. I said, “Wow, this is how I look!”

    It got better. I knew I had a long journey ahead of me, so I started preparing myself for that.

    Tell me about the journey.

    Ah. On one hand, I can say I’m doing well; on the other hand, ah. When my prosthetic leg is good, I’m living my best life given the situation, but when it is bad, even being around me is horrifying.

    I’ve had to change both my leg and foot three times. I don’t have a car, but I am very active. I walk all over the place. When it’s raining, even though it’s not water-resistant, I have to put my prosthetic leg in water to go to work or church or just go out. It once broke in the first term of law school and I went back to my crutches. 

    When it’s bad, it’s really hard to use. It’s like when your phone is faulty, and you have to keep hitting the back to make it work. You can imagine how frustrating that is. When it’s bad, I  have to use all of my  body to lift it — It is metal. Without a car, it’s a discomforting period for me. I still have to go to work and do regular stuff. Though, If the reason is not important, I don’t go. Managing a prosthetic leg is not a pleasant experience.

    I changed my foot in March, so I’ve been balling. It has a two-year warranty, and this is the first year. I’m trying to use it well, so it’ll last three years. By that time, I would have saved enough for a new one. October to March last year was not great. For me, my journey is dependent on how my foot is.

    I know I’ve faced discrimination in a few places, but not work-wise. For work, I don’t really need my leg. And I’m one of the privileged disabled people because I can walk, so no one counts my disability against me.

    Sometimes I use my disability as an advantage, like to jump queues or seek favours. I appreciate balance, I can do most things, but where I struggle, I like that people give me leeway. They say, “You know what, you’re disabled. You don’t need to prove yourself to anybody.” There’s a balance I’ve been able to curate with my friends and family.

    I’m more independent because I live alone, which makes my parents panic from time to time like, “Oh, you’re living alone. Hope nothing will happen to you.” But that’s like 20%. They know I can take care of myself because I’ve been living alone since the amputation — I was in Abakaliki for chrissakes.

    Abaka why?

    I schooled in Ebonyi state, Abakaliki.

    Ah. Go on.

    I went back to school after the accident, but now I work and live in Lagos.

    Okay. Tell me about finding balance.

    When you go into uncertain situations, you can find your strengths, weaknesses, things that make you tire out and the rest. It took me about a year to figure out what I could and couldn’t do. Some days after I could stand, I tried to carry a bucket of water. Then I was like, what was I trying to do? I hadn’t even learnt to stand properly or use my crutches. I was even still in the hospital. My mum nearly lost her mind.

    I had to reconfigure everything about me. I knew I couldn’t stand for long and walk as fast — I’m tall and my legs are were long, so I was a fast and impatient walker. Two months after the amputation, I noticed I felt pain in my limb when I walked really fast. So I studied and set a pace for how fast I could go and how long I could stand. At concerts, I stay close to the exit in case of a stampede — my prosthetic leg doesn’t allow me to run; it’s not that sophisticated. I can stand for about two hours, so I’d go to the concert when it’s at the hottest. My wardrobe used to consist of skinny jeans. I had to change the entire thing. Every day is a new lesson, so I’m constantly learning. 

    How did your parents find balance?

    Ah, for them it was a terrible time. My dad is like an O.G. He doesn’t shake. When the accident occurred, I called him at work, which was in Ikeja. Imagine the distance to Shagamu. He went home to Ajah, picked my mum — against evening traffic. He sounded calm because everyone initially thought it was something POP would fix, and I would get better. My mum was saying this girl does not like to stay in one place, she’s always walking up and down. When they saw the extent of the damage, my mum broke down. My dad and elder sister were trying to save face. But I could see the fear. I felt bad because I thought if I had just stayed at home, I wouldn’t have caused them this kind of pain.

    My mum was always crying. So even when I wanted to, I didn’t, or I cried quietly so I wouldn’t upset her. I could hear her crying or muttering prayers even with the drugs.

    My dad ran around trying to foot the bill, while my mum was constantly with me at the hospital. Guests were not even allowed, but she told my dad to bring a chair for her and didn’t leave my side. She slept on that chair for weeks. No matter what she does to me now, I cannot be angry with her.

    It was a trying time for everyone. My sister would tell me that my dad cried in the shower. He would be strong-faced at the hospital, but cried when he was taking his bath.

    Did you ever consider therapy?

    I refused therapy because we had already spent so much money, and I didn’t want to add to that. For the first year, everyone was careful around me. Any little thing, I’ll be applauded. But now, I’m old school. My family still ask about my leg because they know that If I were going through the worst, I wouldn’t want to stress them about it. They already spent millions. I got my last prosthetic with contributions from my friends and a little from my mum.

    Now I need adult therapy because Nigeria has done me strong thing.

    Same sis, same. You finished with a first-class from law school. What advice do you have for other law students who want to try for a first class?

    Wahala for who no study day and night oh. I partied as much as I read, but I studied a lot. My sister, who is also a lawyer, advised me to study and also have fun. I wasn’t even aiming for a first-class; I was okay with 2:1. 

    Everything about me is balance. If I decide to party at Muri Okunola tonight, I’ll study from morning to 5 p.m., then I bounce and pick it up at 3 a.m. If you don’t have balance in law school, you’ll lose your mind because it’s a very tough environment. Right now, because I found time to play, I have memories from law school. Just try to strike a balance.

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