At one moment during the course of treatment for MDR-TB I thought there was no meaning to my life anymore. Waking up everyday in pain, spending the night in pain was the order of my life for at least four months. Today I wear the biggest smile on my face.
I was diagnosed with strain of MDR- TB when I came to work in Norway for the Norwegian Peace Corps. I was so happy in the beginning to have an opportunity to experience a different community far much different from where I belong, I will call them two extremes. I made quite a number of friends, they made me very comfortable in the new environment. I worked along a team of extra five colleagues, they were wonderful.
In Norway, TB test is mandatory for foreigners who intend to spend more than three months in the country. I too was obliged to undergo a test. The first test was negative (skin test) and for sure that was not a surprise to me. However, I was also subjected to an X-ray examination. This was disturbing as some spots were noted on my right lung.
I travelled from my little town to meet a doctor and find out more about the X-ray results. Completely unexpected I was assigned to an isolation room. That was the worst thing that had ever happened to my life. I tried to talk to my doctor about the possibility of letting me travel back and get myself ready for the stay in the hospital, little did I know then the rules in TB treatment, it didn’t workout.
For the next ten days, I was confined in my small room, with almost nobody visiting me save for the same faces from the different nurses in the department. It was also sad that no one came to talk to me about TB and what was being done in my case. With luck on my side, I was discharged on grounds that I didn’t have active TB, thus I was of no danger to society and I could continue working. However, this was only limited to the small town where I lived. I could no longer travel overnight with my team and it was a blow to my work since the coverage area was so wide and necessitated many days and nights away. The entire team was affected by my absence.
I was started on ordinary TB medication and this went on for about six weeks. It was close to Christmas time. I was due to travel for the festive season to my country Uganda and had packed medication given to me by the hospital for at least four months.
As we had gathered for a party with colleagues and friends, a phone call came from my doctor. She had a simple message; “you can’t leave the country because it has been noted that you have MDRTB”. I honestly had no idea what that was all about! As I woke in the morning, there was an ambulance outside waiting for me. As the rest of team was on their way to the airport, I was on my way to the hospital, two extremes again. That was marking the beginning of another chapter in my life.
For the next couple of weeks, everything seemed to be ok, I didn’t expect the worst. Then I started getting ill every other day. With life in another ‘solitary confinement’ in another hospital, new faces appearing every time, it became very disturbing. I lay on my bed the whole day and night mostly watching TV. The nurses tried to give company and taught me a couple of games as well. The days and nights seemed very long in this land of the ‘midnight sun’ as it’s referred to sometimes. I fell gravely ill after I started treatment. I had a tough war to fight. I changed medication about three different times as most didn’t have any positive impact on the MDR-TB. My ‘behind’ hurt a lot after taking in more injections than it could handle, yet I couldn’t say no. It was tough. At one moment I couldn’t eat because I would vomit everything in a matter of minutes so I had to feed on a tube, and I couldn’t get a good nights sleep for many months, even after I was out of isolation. I lost more than forty pounds in weeks. I looked terrible My life had lost its meaning, I didn’t want to live neither did I want to die, I just didn’t want to be there.
Both my doctor and the TB coordinator visited me daily and kept me updated on the situation, they inspired me quite a lot. They availed me a lot of material about TB and different sites I could visit to learn more about TB. This was very inspiring indeed. With this all, my knowledge on TB started growing. In my room, I spent many hours of the day and night reading and I also tried to write a lot about TB though I never had an opportunity to publish anything, that didn’t set me back at all, the fight was going on. For a long time, I thought of what I would do to recover from the situation I was in but had no answer.
Going through all these tough times was a huge challenge and it has taught me one important thing that many should know, ‘its important to be sick with some dignity’. If you know that you are sick, then you should focus on how to get better, this is what I would call ‘positive thinking’. This was the most helpful tool that I invented in my life with MDR-TB and as long as I live, I will always share this.
I learnt that more than 50% of what worsened my health was psychological and the only weapon against it was a positive mind. Smiling boosts your health, true indeed. Now, with treatment finished save for observation, I still have to bear the after effects of the medication. I lost sensation from my knees to the feet, this is getting better everyday. I developed a hearing problem and this might be permanent, my eye sight too is getting weaker. Save for the above, my life has gained total meaning.
Today, I am documenting my life with MDR-TB to share with others. I have also had an opportunity to speak with some former MDR-TB patients about their experiences. The DVD will be ready by September this year (2008) hopefully. Lately, I have been actively engaged in developing booklets for TB patients with LHL( Norwegian organisation for heart and lung patients). A copy of the DVD will be inserted in each of these booklets.
‘A life lived for others is a life worthwhile’
Benjamin Ocaya
Norway
