I have always equated optimism to perspective. As I met more people whilst attending numerous events, I became aware of how much worse other people have had it. All of us had our own suffering. Hard is hard, but there isn’t harder or less hard with TB
I hope that when you read my story you’ll feel inspired to contribute and help others.
I beat TB
TB is quite an abstract disease for many. It’s reduced to “numbers” to frequently. The public needs to be reminded about the stories of the “real” people who become sick and survive. PEOPLE JUST LIKE EVERYBODY ELSE. This includes exceptional achievers and athletes. People like : The Late Nelson Mandela-Archbishop Desmond Tutu-Beatles drummer Ringo Starr-Female singer Tina Turner-Guitarist Carlos Santana-Welsh born Singer Tom Jones-Male Singer Cat Stevens
My name is Neal Anthony Stacey and I am a TB Survivor.
I was first misdiagnosed with Allergies-Asthma-Bronchitis-Common Cold-Man Flu-Pneumonia-Meningitis
Inhalers-antibiotics-bronchial cough syrups-painkillers a nebulizer – You name it – were prescribed. A vast amount of medication I could of opened up a pharmacy.
This is MY STORY
Between 1989-1990 I became ill and just didn’t recover. I Visited GP’s with regular monotony. Surgeries became my second home. I experienced Unexplained symptoms. My immune system was down I developed a productive cough that did not improve. An Increase of mucus, Respiratory tract infections, Weight loss, Night sweats and a general feeling of tiredness & weakness
These are classic symptoms of TB
The coughing became quite radical. I would often wake up from my coughing. It was worse in the mornings as I could be coughing for up to 15 minutes before my day had started. Soon I could barely swallow because my throat was always so sore from coughing.
I used to suffer with Chills-Shivering and Perspiring through the night along with a high fever. Doctors suspected meningitis and I had to endure a lumbar puncture. One of the doctors prognosis was that I was developing a re-occurrence of an innocent murmur of the heart I had when I was a young boy. Doctors totally misdiagnosed me.
In hindsight, I think the doctors all saw a healthy and fit white 36 year male. As I didn’t fit any of the stereotypes or the TB demographics so a diagnosis of TB never crossed their minds.
The stereotype of a TB patient looks something like this.
Impoverished, Black, Malnourished probably HIV positive and living in overcrowded, unsanitary conditions.
Difficult times / Warning signs
Not knowing what was wrong with me was the absolute worst. You can’t help but ask yourself questions. Will I ever get better ? Will they ever find out what’s actually wrong with me.
The sicker I felt, the harder it became for me to take care of my family and home. Being an avid sportsman I was so frustrated as it became increasingly difficult to participate in my Sports, being Cricket Badminton but more so the running. [I only started cycling in 2006] Training in all three sporting codes became such a chore. My training runs started to drop in frequency. During this time I was virtually sofa bound and a recluse in my own home. My chest would burn, there was such a dramatic change in my stringent breathing patterns as it now became so difficult to breath, my legs felt like lead, my body always sore. I wasn’t able to go for a run without stopping regularly to “catch” my breath. They say runners get a “second wind” mine was non-existent.
But just like typical runners, I pushed through, persevered as if nothing was wrong. Runners run like there’s no tomorrow, Always saying to ourselves that the next run will be better. “No Pain No Gain” Its actually called Domkrag.
It’s like being on an emotional roller coaster ride. One day you up the next day you are down, way way down.
I always felt incredibly fatigued, it was like having the flu but with none of the pain. The conditions worsened as I started losing strength, stamina and feeling oh so miserable. I was seldom hungry or even thirsty. It wasn’t long before I was passing blood, had lost a lot of weight and I was starting to black out.
A few days before my half marathon the tell tale signs were all there. But ! We all know the story. We just turn a blind eye put on the blinkers and ignore them. Runners are a totally different breed. So in denial. We all need to listen to our body as it’s our best trainer.
The day my world changed
You just know that from the moment you open your eyes that it’s going to be one of those days and that the “spaghetti” is about to hit the fan.
On that fateful Saturday morning 11th August 1990 I participated in a half marathon (John Korasie) Back in the day the race was held at the Faure Cape Corps Army Base near Elsies River. [The Cape Corps were the main military organizations in which Coloured Members of South Africa served] Today it’s a 30km and is held at the Naval base in Simonstown.
I remember it still so clearly. I felt cold and shivery, despite sweating profusely. My breathing was erratic, heart was racing my body felt like it was on fire Yet ! It was raining and extremely cold that day. From when the starters Cannon was fired I was walking more than running, plodded along, felt like an eternity finally crossing the finish line. Thankfully I finished but with a huge struggle much pain duress and a bucket load of mental strength. My Guardian Angel was obviously with me every step of the way. In retrospect, We just think that it’s another bad day at the office. When the going gets tough ~The tough get going.
After the race I went round to my mother and step dad (The late John Brown) for a traditional post-race breakfast. Your sixth sense tells you that something is not Kosher. Whilst showering I was so “wobbly” on my legs. My eyes felt like they were at the back of my head. I went to go and lie down to see if these feelings would subside. When I was called to come and have breakfast my family asked if I was ok as they said I looked so flushed pale and white around the gills.
Whilst eating I started to feel light-headed, blacked out and collapsed. I remember hearing voices but they were so distant. I was rushed to the doctor and after examining me, he dropped a bombshell. His prognosis was that the symptoms looked like TB. My mother was extremely angry. How dare the doctor say her son could have TB She thought, like many others, that TB is a disease that exists only in poor communities. Sadly this misconception still exists today
Breaking the news
Telling your children you may have TB can be a very difficult moment. They’re likely to be worried for you and you have to explain that they may have to undergo screening to ensure they do not have TB themselves. My son was doing his compulsory National Service, part of the then Government conscription for “Males”. My daughters were 15 and 11 years old respectively.
Questions – No Answers
My mind was swirling
What is TB
How did I get it?
Could I have given this to someone else?
Is it fatal?
Was I going to be able to get rid of it?
Was this something I was going to have to deal with for the rest of my life ?
How was it going to affect my body
The shocking results
And then came the results – POSITIVE
It hits you like a Sledgehammer, felt like I was just found guilty of having TB and about to be incarcerated. I was actually relieved to finally find out what was finally wrong with me.
The recovery and side effects
So began the long journey to recovery. It took a further Three weeks from the referral by my GP to the “State” Public Health TB Program until I was started on anti-TB medication.
My first appointment was at Brooklyn Chest hospital. The doctor sat me down explaining what I should expect over the next Six months I was told that I would be on medication for that period. He gave me a “paper” which contained information, but I felt so sick I didn’t fully read and understand the information I was given that explained the side effects from TB medications.
More x-rays, more tests.
They assigned a sister who would visit every morning to apply the DOT Therapy System (Direct Observation Treatment), but my mom insisted that she would take care of me. True to her word, she did. Every morning, as regular as clockwork, breakfast then medication. I can still clearly remember her words : My child, You must take your tablets. You do want to get better Don’t You !
I could read all the relevant information that was presented on this pamphlet but I never fully understood it. Even though they sort of answered my questions, I would of preferred to be told a little bit more about it than I actually was.
There was just no way for anybody to really tell me what the effect of the medications was going to have on me.
The treatment was difficult in the beginning as I still felt ill and lethargic. I can remember just how weak I was. I could barely work, always so drowsy and tired, had lost my appetite.
The tablets made me feel so nauseous. A strict regime of Six tablets daily, the size of suppositories, so difficult to swallow (Surely they were not meant to be taken orally)
At times I couldn’t “stomach them. Even getting dressed became a chore. I had become weak, in fact, very weak. I could not go to the bathroom etc without it feeling like a hardcore workout. Most of the time I felt like I was going to vomit. I was mostly in sleep mode but my mother used to wake me up for meals as per the medicinal nutritional needs. From the moment I woke up to the time I went to bed, I remember just always feeling so tired. I could sleep for up to Twelve hours a night, and would still need a nap in the afternoon. Sleep became my favourite pastime.
When looking in the mirror you are horrified as you start looking like a skeleton.
My running, yet alone my other sporting activities became non-existent. I could barely tie my shoelaces yet alone run around the “block. I was even too tired to stand for even short periods of time. I went to the funeral of a dear friend and collapsed in the church.
Dealing with the stigma and misconceptions surrounding TB
When so called “friends”, acquaintances, colleagues, members of the public heard that I had TB they avoided me, looked at me so very differently. Some even shunned me. Unfortunately that is the stigma attached to the disease. If a person knows you have it they tend to avoid you immediately. I didn’t want to be shunned from my family and friends, from my job. People start looking at you oddly because I had TB
You feel as if you are isolated from the outside world both physically and emotionally — It starts taking a serious toll on you.
One of the biggest challenges I had was convincing people that the myths about TB simply aren’t true, People really believe you can catch TB through spitting or sharing cutlery. Also, they don’t realize that TB is curable. It was difficult to explain to many that I was no longer contagious once I was on the treatment.
Every time I went to a TB clinic, everybody looked at me Shocked. It’s as if they were thinking : What is this white man doing here ? Often approached by patients mistaking me for a doctor.
I recall sitting next to a homeless person at one of the clinics, possibly in Tableview. He kept on staring at me – eventually plucked up the courage and asked me in Afrikaans
Meneer : Wag jy vir iemand?
Me : Nee ! Ek kom vir my ondersoek
Him : is Meneer dan siek? Wat is fout?
Me : Ja ! Ek het TB
Him : (with a look of astonishment) Kan nie wees nie – Meneer is dan wit.
One should never judge people, We don’t know what they are going through inside. Be kind to people, your quietness might just be the motivation they are seeking.
Effects Of TB
TB seems to bring out the “hysterical” in people. My life had to put completely on hold, there was no ability to plan for anything. I had no idea of how it was going to turn out. I often had to tell myself that I still have so much to live for, so much to look forward to and still so such I wanted to achieve.
I also wanted to see my children grow up and that I wanted to get better for them.
TB doesn’t only affect you, but also your family. It places a huge burden on daily family life. Sometimes I felt having TB was harder on my parents and family than it was on me. They had full-time jobs and my children were still at school. My Stepdad was driving to come to my appointments with me.
It is physically, emotionally, and financially draining. You are totally reliant on them. It is difficult for them to accept the illness, adjust to the fact that despite their efforts to care for you, the condition of their loved ones might become worse.
TB doesn’t discriminate based on race socioeconomic status. The only demographic that matters is that we all breath
Another challenge was going to the clinic for follow up tests. I had to wake up early, never going to the same clinic every month. It involved Six months of waiting for hours in long queues and sitting in cold waiting rooms at the TB clinic for monthly check ups. I may have needed another chest x-ray or a test of the phlegm I had coughed up. These tests show whether the medicine is working and if you can still give the TB bacteria to others.
Even if i was first in line, there was no guarantee that I would go home early. There were times when you were sent to another clinic as they did not have your medication or your file was sent elsewhere. I became accustomed to go to the public health clinics on a monthly basis.
Some of the staff were unfriendly, impatient, not very helpful. I got the impression that they were doing you a favour. It was as if you had the “dreaded lurgy” It was like you were in a concentration camp.
The medical staff were predominantly white and i always felt that they looked down on me because I had TB. They made me feel very uncomfortable as if i had done something wrong (I’ll leave that to your imagination) I stuck out like a sore thumb for obvious reasons
Live with and after TB
Misdiagnosis by doctors, incorrect treatment, stigma, and the side-effects of medicines has its psychological effect and can potentially destroy lives.
Having TB is not just a quick fix It’s a long process 180 pain staking days.
There was a stage after about 4 months when I just had enough of taking medication everyday that I wanted to stop. Fortunately my family persisted saying you don’t want to default and start all over again. It’s like been prescribed anti-biotics You have to complete the course.
There were struggles and challenges that I faced that few knew about. The road to recovery is long with many a winding turn However !! There is however light at the end of the tunnel.
When you are declared “TB Free” the journey doesn’t end there.
It takes months, if not years to regain your strength and re-start living a normal active lifestyle. TB will live with you for the rest of your life. It will always comes back to haunt you and you have the battle scars to prove your ordeal that you’ve just been through.
Towards the end of 1992, I was able to start running, played Cricket and Badminton again. Such an amazing feeling, true bliss.
In 1993 I successfully completed the Peninsula Marathon Two Oceans Ultra and the Comrades Ultra Marathon.
To this day I have no idea how i “picked” up TB You can be standing in a supermarket queue and if you are unlucky someone coughs, that’ll be enough to get infected. Don’t forget it’s airborne and that 30 percent of the worlds population has Latent TB
TB has affected every strand of my life. Not knowing what was wrong with me was the hardest thing. You can’t help but question whether it is all in your head. Looking back it was a physical and psychological battle that I had to fight. It’s that thing of not knowing and if you don’t know then you can’t accept it, can’t fight it.
The mental challenge of having TB is equally exhausting. TB still haunts me on a daily basis. Every time I feel ill, get any of the symptoms it sends shivers down my spine I say to myself – Please don’t let me have TB again.
Writing this now, almost 3 decades later, I am extremely emotional. So many unpleasant flashbacks. It’s impact still remains strong. I just had no clue of the severity of the disease. I realize just how fortunate and privileged I was. Had a great support system, transport to regular appointments, financially able to sustain my nutritional needs essential to support recovery. It is also now clear to me that I was given preferential treatment at the clinics. We can be in denial as much as we want, but being WHITE during the “I was very fortunate era” sure had its advantages and privileges.
Every day was a fight, every day I won! Of all my achievements and learning in life, winning over tuberculosis was my best win and the best lesson of life. I know that, too often, TB’s physical and emotional impacts can be lifelong.
How to survive TB
You know those times in life when things really feel rough ? You feel overwhelmed, alone, start doubting yourself and wonder whether or not you’re strong enough to handle it.
Trust me !!! YOU’RE MUCH STRONGER THAN YOU THINK!!!
You need a Positive attitude-Healthy diet-Strong will-Good support system.
Be diligent for 180 days and most importantly a religious regime of taking your medication daily. That is the ultimate Key to Success.
What ever you do. DON’T DEFAULT Stick with your medication even if you are feeling better because it’s the only way that you’re going to be cured.
And Yes ! It is going to take you through some rough patches. Become aware and make others aware as much as you possible can.
Here are some Guidelines for TB patients
- Take your medicine every day
- Eat something before taking your medication
- Complete the 180 day course
- Eat 5 or more smaller meals per day and make an effort to follow a balanced diet.
- Always cover your mouth with a tissue when you cough, sneeze, or laugh. Put the tissue in a closed bag and throw it away.
- Do not go to work or school until you have been cleared to do so. Usually after 2 weeks on medication you should no longer be infectious.
- Separate yourself from others and avoid close contact with anyone until you are no longer infectious.
- Sleep in a bedroom away from other family members.
- Air out your room often to the outside of the building. Open windows regularly to let fresh air in.
- Do regular exercises and go for walks in sunny weather.
- Use vitamin C supplement to boost your immune system.
- Join a support group if such exists in your area.
TB is not a voluntary illness
You cannot just decide to stop breathing.
Anyone can contract TB even YOU
I CAN ATTEST TO THAT
For me, it is not something that affects only “other” people. If you think TB won’t pick you because you’re “not the type” – Think Again
I CAN ATTEST TO THAT
TB IS CURABLE
Fit and healthy people can get and overcome TB
I CAN ATTEST TO THAT
Surviving an infectious disease like TB is both an individual and a social experience.
I CAN ATTEST TO THAT
The battle against TB for those contract it, is long and lonely.
I CAN ATTEST TO THAT
If you or your loved ones ever come down with this frightening disease there is help available from Doctors and others in the State Public Health Program.
I CAN ATTEST TO THAT
TB treatment is free for everyone
I CAN ATTEST TO THAT
There is life after TB. However, Once you’ve had TB, you never forget it.
I CAN ATTEST TO THAT
A MESSAGE TO TB SURVIVORS
Congratulations !! You opened up a large can of you know what and can proudly Say I BEAT TB
Now is the time to stand up, raise your hand and say –
I’m going to help the plight of others who are currently going through the same ordeal.
Becoming an advocate can be as easy as opening up about your illness, sharing your story, educating the public about the misconceptions and terrible stigma attached to Tb and in the process help others with the same condition together with creating much needed awareness of the disease and the potential devastation it can cause.
Being an Advocate for TB will change the disease from a silent epidemic to one with many voices
A message to TB patients
The 2Feet4TB initiative – TB Awareness
TB has changed my life in many ways. In some ways it has ended up being a enriching experience because I am now able to use the experience to connect with others. I also know first hand that experiencing TB can inspire a lifelong commitment to stopping the disease.
This is why I work tirelessly, burning the midnight oil to raise public and professional awareness of the illness, as early diagnosis and treatment limits the harm that TB can do. It is important to bring TB out of the closet. I started talking about my story and wanted to do something for people affected by TB so that no one suffered the way I did.
As I met more people while attending numerous events, I became aware of how much worse other people have had it.
Since the start of the 2FEET4TB initiative in March 2017 I have received significant stories from individuals whose TB journey started almost a decade ago.
I feel I can now relate to the suffering of so many in South Africa who have TB and hope more will be done to not just treat the disease, but also providing nutritional, economical, practical emotional and physiological support. I strongly believe that would give people with TB the hope they so richly deserve
I strongly believe that our Creator has chosen me to spearhead a campaign to help TB patients, giving them hope that we do care, are doing something about it and that You’ll Never Walk Alone
Everyone needs to be pro-active and know the various warning signs of any disease.
We need to be constantly reminded of the things others face in there daily lives which we take for granted. Early detection and research to make detection easier at earlier stages, along with the treatments needs, is still a must.
There is always going to be our ‘Struggle Hill’ on the way to the finish line and the sooner we comprehend this, the better for our sanity.
I salute all those winning the battle and those who have SURVIVED
ALONE we can do so little – TOGETHER we can do so much.
Let us ALL stand up and TOGETHER fight our common enemy TUBERCULOSIS
The SILENT Killer