20-year-old has failed to sit for half her life

Proscovia Nakanwagi does not know what it is like to sit or bend because of a spinal cord problem. She has to do all her chores while standing, a condition she has had for 12 years.

My name is Proscovia Nakanwagi. I am 20 years old and the ninth of 10 children. I stay with my mother in Busunju, Mityana District. We are all from one biological mother but different fathers, although father left after realising that my medical condition would involve a lot of financial input.
My mother told me that I was born a relatively normal child although I had three protruding born like particles at the back of my neck on the spinal cord, which according to doctors would not hinder my growth in anyway.

I loved playing football with my friends and many people in the village called me a boy because I always fought and argued with them [boys] about anything that concerned the sport. My mother did not like me playing football – a sport mistakably known for only males and often screeched that “Women in this world did not have a place in football.” I never took her seriously because my dream was to take my football career to an advanced level and may be some day play for the national women soccer team. But I have lived to see all dreams melt away.

When it started
At about the age of six in 1998, while I was playing football with the boys as usual, an opponent cut me with his nail on my right leg. Such encounters are common in football, especially if you don’t have any protective gear like shoes and socks.

That small cut I sustained that day later changed my life. I went back home and cleaned up as usual but neglected the cut because it was very minor and barely visible. But as the days went by, it increased in size and attracted the attention of my mother. She tried all sorts of medicine and took me to all the nearby clinics where every possible medication was prescribed but none was helpful. Eventually, I gave up on football as the wound grew deeper, closer to the bone and was by now growing abnormally large.

In the following year, other subsidiary wounds continued developing around it and as a result, I stopped going to school for some time because the wounds produced a very repulsive smell that made every one uncomfortable. I later resumed school but had to first tightly dress the infected leg.

I battled the wounds for five years until one day in 2002, when a miracle happened and they started drying up. However, the healing did not come alone. The leg muscles started stiffening, a process doctors told me was irreversible, as I was virtually becoming lame because the leg could no longer function well. It was a relief, that the wounds were gone except for the muscle stiffening, but the bubble burst in 2003. I developed a reeling back pain whose cause I could not explain. Every time I sat, the spinal cord would make a cracking sound and it would result into an ache which later became constant back pain.

One doctor at a clinic told me that wounds had strained most of my muscles from the feet up to the pelvis, where the spinal code is attached to the head. This pain, whenever I sat, grew worse every day until I gave up sitting and I started standing most of the time.

By the now, the muscles in the leg were as hard as a stone and could not be folded while my back continued to stiffen. Both my arms, from the ball and socket joints were thinning and eventually became stretched – as if I was breathing deeply all the time. My mother’s friends told her my condition was “traditional” so we had to seek help from traditional healers. We spent ridiculous sums of money on traditional doctors before we turned back to the medical physicians.

Condition worsens
By the time we did so, I could no longer sit, bend, run or even use my body freely. We were recommended to Namutamba Rehabilitation Centre, where I got some treatment, but my sickness could not be detected so I was referred to Katalemwa Cheshire Home.

In 2008, at Katalemwa, I was diagnosed with muscle atrophy, multiple joint stiffness and other skeleton related diseases I don’t understand that doctors told me are irreparable. The worst thing is that my spinal cord could no longer function normally, so I was told I would spend the rest of my life standing. I was told though that it was possible for the arms to be lowered and returned to their normal positions. This would cost Shs1.5m each – which money we didn’t have.

I last sat down in my life at the age of 10 while in Primary Six in 2005 and had to write while standing at school until I completed my Primary Seven. At first children mocked me. People looked at me strangely and my mum couldn’t just stop wondering how I would survive in this world.

Luckily, I found a local Catholic organisation that sponsored my education from my Senior One to when I completed my Senior Six, in a school where they improvised and got me a stool-relatively elevated in height, which I could use for writing in class.

As an oddball in the society, I occasionally used to feel uncomfortable until I joined the born-again faith. I still wish that someday a miracle will happen and I will sit again. I used to but no longer regret any more about my condition after people got used to seeing me like this.

I can do most light chores as long as they are on a raised platform. I cannot sit, bend, twist or run among other activities, but that doesn’t mean life cannot go on. My friends and family help me do what I can’t do myself with and I’m grateful for that. I still love football though as a spectator and have been a fervent Arsenal FC fan since the time I used to play. After the shattering of my football dreams, I shifted goal posts to reading and studying hard. May be one day I can become a social worker to help people like me.

However, I am skeptical about my chances of joining any higher institution of learning to further my dreams because my sponsors were only aiding me until I completed Senior Six yet my family is quite impoverished.
In my situation, all I do is read and study hard, something I actually do most of my free time. To avoid thinking much of what the world is or would be like, I use that time to read, particularly Christian literature, books and novels. I have learnt that God has a purpose for me in this world.