The sickness I’m suffering from, takes between six months to two years to heal depending on someone’s age. If I were a baby, I would perhaps take six months, but I’m making 50 years next year, so I could take a longer time to heal. That is if I do not get hurt again in-between.
My friend, Dr Kizza Besigye, has counselled me to be patient with this condition, so I have learnt to befriend my condition. In the first year, the other September , when I got this problem, I took up a number of short courses online. I have a certificate from Leeds University on social media management and development.
Confined to a wheelchair
I have shifted my office from parliament to my home. I facilitate my assistants to come and we work from here (home). About colleagues with whom we do politics, I encourage them to have their meetings from here, so that I’m not left out.
So it is all about befriending the situation.
To do otherwise, would have meant to invite depression. One of the problems that come with spine injury is depression. When I went for treatment, the doctors warned me about it and advised me on how I could avoid it.
I had a colleague who did not make his sickness public. He had a spine injury, his was a result of natural conditions. One day, he drove and threw his phones in the lake.
You can feel isolated and then depend on others for survival. My husband had to leave work to stay home to manage my personal administration. I do not feel shy to invite my youngest daughter to take me to the toilet or dress me up.
Having to depend on your young daughter to wear knickers just because Mr Bakileke is not here, is painful. All the same, the doctors advised me to remain positive.
Mourning my doctor
The unfortunate bit of this is that I lost my doctor, Dr Margaret Mungherera. All along, since I joined politics, I have suffered different forms of torture. With torture victims, doctors treat the physical part of the body but there are also the psychiatrists who treat the mind.
Dr Mungherera was my doctor and she managed me after the Bundibugyo incidents. Unfortunately, she passed on and it is not easy to get a replacement who I can trust but I have successfully found myself a physiotherapist.
I have to go to another clinic daily. My physiotherapist has become my sister. She comes here. She talks to me a lot. She does both counselling and takes me through physiotherapy.
Even if I became sad, I would not change anything. I have a permanent spine injury with permanent implants in my back. With time, I will improve and be able to do a few things such as walking, but I will never be the normal (energetic) Nambooze again.
Genesis of spine damage, the pain
When I was arrested and taken to Nagalama in June, I got an accident. Originally, my problem was with the back but the cartilage in my left knee (the patellae) got shattered.
The doctors cannot give me an artificial one. I had to have a transplant of the bone marrow from the right hip to the left knee and to allow the process of allowing the cartilage grow back on its own. The process is to allow it grow back.
At first, I did not use a wheelchair but now I’m in one. It is a new experience to move around in a wheelchair. My house had not been built to accommodate a person with disability.
I rarely go downstairs because that means lifting me like a baby, which is painful, and psychologically torturing. I have turned the balcony into my sitting room. I am not sure how my husband is coping in his new role as my caretaker because he no longer goes to work. He stays home to assist me and we have involved everyone.
Counselling for me and family
For some of my counselling, I had to involve my children, especially my son who is my great friend. He was traumatised because of my condition. When I was in hospital, he almost failed to go back to school.
It took Namilyango College School a lot of innovation to get him back to class environment to study. What hurts me most are people who pretend to console me yet they do not mean it.
Also, I have to take a lot of painkillers all the time. Dr Besigye told me that pain sometimes makes people mentally disturbed and that I have to find ways of dealing with it. I take an assortment of medicine, such as the neural tablets because my nerves are sick and then use an electric chair with a nerve stimulator.
Surviving on powered machines 24/7
I’m required to use electricity 24 hours. My car has been fitted with a new sitting cushion to accommodate the nerve stimulator. We sleep on a powered bed and I pity my husband who has to share that bed with me, on advice of doctors.
The nerves need to be stimulated every other time to be active. According to the doctor, with time I will not need it, but I do not know when that will be. Then, I have to deal with the wounds resulting from the famous Kiruddu injections.
I am not insinuating anything against the doctor of Kiruddu Hospital. In any case, I am highly indebted to them.
They handled me so well. By the time government took me to Kiruddu, I did not know I would meet professional and ethical people there, but I am so grateful that by and large, they exercised professionalism, especially when I requested them to send away the security people who were everywhere in the ward.
They stood their ground and referred me to India. That was professional and ethical of them. But the nurses feared me and by the time I reached Kiruddu, my veins had collapsed, so they were struggling to get veins so that they could give me painkillers through the veins because I was in a lot of pain.
Cry for poor healthcare sector
When you are suffering from a spine problem in Uganda, the only treatment you can get are painkillers. You have to go to Mulago hospital and look at the Spinal Ward. The doctors are good, whatever they diagnosed and I took to India, the Indian doctors did not change much.
But the doctors here do not have the equipment and the drugs, so in that struggle to look for veins, the nurses desperately went for a vein on my foot and we lost it together. The points of injection eventually turned into wounds which have failed to heal. I am also treating that.
At the moment, I am no longer taking injections in the usual places but on my arms just because I have wounds behind. All in all, I am happy because I feel my pain will not be in vain. I’m happy to pay the price of political liberation. We have to pay the price without complaining and I do not want to present myself as a victim of Museveni’s misrule. In future, people will look at me and say I was one of the survivors.
We do not need to fear to pay this price. Whenever I pray to God, I do not pray to Him to get me out of this pain. My prayer is that my pain does not go in vain. However, I have lost a lot. I no longer go visiting. I cannot go around my constituency but my assistants do. My husband represents me on some of the occasions such as at burials and wedding ceremonies. I have land in Buvuma but for so long, we have not been able to go there. We were planting a forest there.
We have had our losses. I love the Kabaka (Ronald Muwenda Mutebi) so much I fear to go before him. I can’t imagine myself greeting the Kabaka without kneeling.
When my in-laws come here, I find it very difficult to greet them because naturally, for the last 48 years I was raised knowing that a woman kneels for in-laws and the Kabaka.
Loss of my womanhood
I cannot lift and cuddle my grandchildren. A woman is as good as her back. I say this without fear that as a woman, I was destroyed but again, there is Wangari Maathai of Kenya.
If you read about her and see what she went through, when she was fighting for freedom, then you see that Betty Nambooze has not suffered even a quarter of what she went through. And she is one of the people I look up to.
The Winnie Mandelas. These are people who paid the price, so at the end of the day, it is not what we go through but what can be achieved for our countries, for humanity through our suffering.