Peres was afraid of the dark. Whenever the sky turned from a grey velvet to black, her body would feel as if it was constricted by a torniquet. Then the pain would begin. A constant pricking pain as if someone was hammering nails onto her skin all at once. No matter what she did, the cycle repeated itself and would only recede when the morning sun was toasty warm.
Before this, she was a sporty lady who loved kids. A love that led her to a career as a kindergarten teacher. The school where she taught, was a spitting distance from her house so she would walk to and from work. A typical day for her would begin at 7:15 am. By 8, she would be seated with the kids on the floor playing legos or colouring. Afterward, she would call out the register which involved moving each childs passport photo from a drawn house to a drawn school; then accompany each child to the bathroom. After that, there would be singing and dancing and then learning would begin. During tea time, she had to make sure each child had eaten so sometimes she would find herself feeding three or four of them at once.
A lot of interaction with the children in class required her to be on her knees. Then there were outdoor activities where she would run, jump rope, crawl or play football with them. After lunch she had to arrange sleeping mattresses for them and while they slept prepare the following day’s activities.
She would then wake them up, put the mattresses in the store, take them to the bathroom, give them each a snack, check their bags to ensure they had everything, accompany them to the school bus then lift them into the bus. The day would end after she had sharpened pencils and colours and arranged the class for the next day. This was what she did everyday from the inception of the school in 2001. And she enjoyed every minute of it until November 2011 when things changed.
On that day, Peres and her workmates had a team building event where they spent the entire day hiking, jumping running and rolling on the ground. She was in her element having played netball and basketball while in high school. But the following morning when she got up to clean the house, she felt a dull ache in her right knee. She attributed it to the previous day’s activities until she undressed to take a shower. The knee looked like a baseball was lodged in the joint. Shocked by the sight, she applied an ointment hoping to rub the baseball away. It stayed.
Because the pain was not constant, she didn’t seek medical advice immediately. But when it persisted, she visited a private hospital in Nairobi where an Orthopedic specialist said, “we will need to take you to theatre to drain the fluid and take a biopsy.”
“Surgery? Is there no alternative? I have a three year old and a two year old at home who cannot be contained. I am also a Kindergarten teacher. What will surgery to my knee do?” Because surgery to her meant immobility, pain, a wound, she declined and opted for a second opinion.
Meanwhile, because misfortune is a conjoined twin, her nanny also just up and left. And it was not a first. They would arrive at her house on a conveyor belt and drop off never to be seen again. The turnover became so high, she decided to do away with them altogether. Her plan was to go with one child to school and drop off the other one at a friends place. In the evenings she would burn the candle at the other end, cooking, feeding, bathing the kids and putting them to bed. Then she would end the night washing and hanging their clothes.
This was her routine for several months. And then one day she felt like an electric current was passing through her hands. This sensation quickly turned to pain and then stiffness. Her fingers would be so taut she would hold a hot sufuria to warm them up and relax the muscles. By now her right leg had forgotten its use. She would drag it along like you would, a suitcase without wheels. The pain that was initially on her right knee progressed to involve her other joints. One day it would be her wrists, the next her elbows, then her shoulders and her fingers.
Once, when she got home from work with the kids — who were four and three years old by now — she got a sharp pain that started on her toes and shot up to her hip rendering her immobile. The only comfortable position was to lie flat on her belly. She was in so much agony she told the kids, “Guys, mom can’t move so I can’t cook. Get a plastic cup, put in some water and warm it in the microwave.”
“Ok.” The older one — a boy — responded, happy to be allowed to use the microwave. The younger one, her daughter, was too confused to leave her side. After he was done he came back to her room and said, “and then what else?”
“Put the warm water in cups. Add some sugar and cocoa and stir with a spoon.”
They were gone before she could specify what size of spoon to use and how many scoops to add. Any attempt to lift herself off the bed was met by a ripping pain that sent her right back down.
“Then what mommy?”
“Get some bread and eat it with the cocoa. After you guys are done, change into your pyjamas, put down your nets and sleep.”
She did not know this then but that was their induction into independence 101. A practice, that would last for a while.
After they were out, she tried to call her husband but he was still at work three hours away. In the end, she took some painkillers and somehow sleep dragged her into another world. The following morning, because the pain was gone, she swiped the incident as a one off and carried on with her day.
Then things went downhill gunshot quick. One morning, she tried to comb her hair and couldn’t lift her hands above her neck. While showering, she was unable to grip the soap to lather her body or bend to clean her feet. The bar of soap would fall to the floor and that would be the end of her bath. She had managed to get a nanny but they would still leave faster than they came for being ‘overworked.’ “You are not like your neighbour Mama Nani who is so active and helps with housework.” They didn’t say it to her face but she knows they thought she was lazy. Why else would a 31 year old kindergarten teacher just sit in one position all evening giving instructions? Her level of disability got so bad that wherever she placed herself after she got home from work, was where she would sit until someone carried her to bed.
When she tried to move her right leg, the left one would complain. If she turned her neck, her shoulder would throw a tantrum. The pain would be awakened by darkness, reach a crescendo and plague her the whole night until the following day. During the day the symptoms would somewhat abate only to torment her again at night. It was a cycle she didn’t understand.
At school, she stopped going early. Even the 15 minute trek to school from her house became an arduous task. She started to take the bus but even that was torture. She could not get on and off on her own. It’s like someone had nailed her joints together causing her to have robotic movements. She also took up the class for older kids so that once she sat on her desk, they could come to her and not the other way round. She once overheard a child say, “Nowadays Teacher Peres always looks sad,” and it poured cold water on her spirit. That the kids she loved to teach and engage could pick on her emotions.
Once or twice a colleague would say, “Peres you are always complaining about those joints of yours. Today it’s your leg, tomorrow your hands.” And the kitchen staff labelled her the person who broke the most cups. Tea time would end before she had a chance to take tea because she was unable to open her thermos and she got tired of asking someone to do it. Eventually she told the cook, “please just pour my tea directly into my cup,” but even lifting the cup to her lips felt like lifting a boulder with your fingers. Soon even holding a spoon was a gymnastic sport. Because of this she became rail thin.
It was only until later in the year, that her Priest introduced her to an Italian doctor whose family was visiting the country. “Peres, you have not been yourself for a while; and the way you drag your leg around concerns me. Why not go over and see Dr Tomaso?”
When she did, he examined her and recommended certain tests. When the results came out two weeks later, Peres did not roll out the welcoming mat.
Rheumatoid Arthritis.
Before an illness has a name, one tends to label their symptoms for peace of mind. ‘Oh it’s the cold,’ she would tell herself, or, ‘it’s because I don’t have a nanny,’ or, ‘it must be because I was so active as a child.’ But once it is named, it’s like a newborn. No matter what you do, it stays, staring at you. It turns your world inside out. Acceptance is a slow boil. And it took her some time to get there. “Peres, be encouraged. At least we have found out what is ailing you and can manage it.” Dr Tomaso told her.
He started her on high dose steroids and some painkillers. After a while her skin tone changed from an even chocolate brown to egg yolk yellow. Her cheeks looked like she always had water in her mouth. The remnant of her body fat migrated to her thighs and mid section and she had excess energy that gave her sleepless nights. Even so, these side effects were not unexpected and paled in comparison to the pain, so she took it in stride.
Then Dr Tomaso went back to his country and she had to get another doctor.
This is when she met Prof Oyoo. A Rheumatologist.
The first time she walked into his waiting room she felt lost. The room was full of senior citizens; some on wheelchairs, others looking frail. But when she met Prof, the picture of the waiting room fled her mind. He had a witty personality and spoke to her in her native tongue to put her at ease. Never mind that she barely understood some of the things he said. But he was so animated she opened a valve and relaxed in his presence. After she described her symptoms and handed him her test results, he said to her, “Peres. I want you to know I am not the solution to your problem. I will give you direction but you will also need to learn to manage it. Rheumatoid arthritis is a chronic disease. There is no cure.” Instead of feeling bad, she felt relieved. Because he had given her the raw truth. He did not stop at that, he gave her websites to visit and said, “you must know everything about this disease.” And at her next visit, his first question after ‘how are you’ would be, “So what new thing did you learn about rheumatoid arthritis?” And they would talk about the illness until Peres felt she was in a medical class.
It is this knowledge that helped her discard all the remedies that friends kept advising her to take. “Here Perry, take this powdered avocado seed,’ another would say, ‘these herbal concotions from Maasai land worked for my mum,’ or ‘try this special porridge from Meru,’ ‘how about camel bones.’ Even her mum bought her special tea and coffee for her ailments.
It was only when Prof added more meds for her to take, that she saw a difference. Previously, she used to wear winter coats and gloves, thermal stockings and even a marvin, but she no longer needed to. The only thing he cautioned against was a pregnancy. “Some of these drugs are harmful to a fetus so if you ever want to conceive, let me know first.”
“That’s not anywhere in my plan for now. I just want to get better.”
But then she took out her contraceptive after its time had elapsed and while wondering what to use next, she conceived.
Walking to Prof’s office felt like walking the plank. Even as she sat across from him, she felt as if she was about to confess a crime. “I am pregnant.”
And the look on his face was nothing short of the reaction she expected. His witty look was deleted from his face and replaced by the look of a headmaster whose best student had failed an exam. “Peres, remember what we discussed?What the drugs you are taking could do?” His voice was firm and she realised he wore his patients care on his sleeve. So much so that he referred her to the gynecologists office to confirm the pregnancy and like a father followed her there — to see for himself. “We have to stop the drugs because of the pregnancy,” he said when the test turned positive.
The pregnancy was difficult. Her pain came back and her joints became swollen in addition to the water retention of pregnancy. Still, in the end both she and the baby turned out ok.
However, due to her symptoms, she couldn’t bathe the baby for fear of dropping her. Thank God for a new nanny who accepted to wash the baby from the day she was born. Breastfeeding was near impossible because she couldn’t pick or hold her long enough. She had to scoop her with her elbows if no one was nearby to help.
When Perry decided to resume her clinic, Prof Oyoo had moved. So she self medicated on painkillers and low dose steroids that helped a bit. When she finally found him, she was too lethargic to continue. She was weary of the visits and the endless meds so she just never went back.
Perry lived like this for a while. Took meds that could keep the pain at bay but not far enough that she could forget. She still dragged her wayward leg around and one day a clinician who worked at the hospital in her church asked her, “Why do you drag your leg around?”
“Because it’s fashionable,” she answered. She had grown weary of that question.
But the clinician did not relent, he kept on asking until after two months she went to see him and gave him her history.
He told her, “You know, there was a doctor who used to give injections to people with your condition where I worked. I learned how to give them by observation.”
She hesitated but because a drowning man will clutch at a straw, she gave it a chance. So he infiltrated her joints with steroids and they started with her right knee which was the worst.
After a few weeks, Perry ran for the first time in a long time. She was then able to cross her legs and sit on the grass, then crawl and even squat. It had been years since she had made such movements, it felt novel to her. Folding her legs while asleep was a forgotten skill, now she could. She went back to walking to work and now even walks longer distances for exercise. She is able to cook and has taken up baking which she has even turned into a business.
Whenever she bumps into her Priest, he asks her, “How are your junctions?”
“They feel smoother.” She says.
He has since introduced her to another lady her age with the same condition. And they were able to meet more women with similar struggles and together they have formed a support group. Her family, especially her husband have been of great support. She has hit their car several times but he has never raised his voice at her. She has also broken several phones and it has become a running joke that, ‘we will buy you a phone made of steel.’
“I have been labelled many things in this journey. That I am lazy and like to complain. So I stopped talking about my pain. Previously it bothered me almost to the point of depression. Now, it doesn’t. I don’t blame myself. Neither do I feel guilty. I know there is nothing I did wrong to get diagnosed with rheumatoid arthritis. I also don’t blame those who don’t understand. That is why I have chosen to speak out. To create awareness.” She said when she meets people and they ask about her limp — which is still slightly present — she confidently says, I have Rheumatoid Arthritis and this is what it is about.
As Narrated to me by Peres Adhiambo Atieno
Perry now with her students at school
Perry now with her daughter at home
Perry with her children
Rheumatoid arthritis is a disease that causes pain, swelling, and stiffness in the joints.
It is one of many different types of arthritis.
It is still not known what causes it. But it occurs when the body’s immune system, “attacks” the joints.
Rheumatoid arthritis usually starts by affecting the small joints in the fingers the balls of the feet, and the wrists.
It usually affects both the left and the right side at the same time.
*Other types of arthritis tend to first affect larger joints, like the knees or hips. And might affect one side much more than the other.
Even though it might start in the fingers and toes, rheumatoid arthritis can affect any of the joints. Sometimes it damages the joints forever.
It can also cause problems in other parts of the body, e.g the heart, lungs, or eyes.
If your health care giver diagnoses you with rheumatoid arthritis, start treatment right away. Do not wait until your symptoms get worse. Prompt treatment can help prevent a lot of the damage the disease can do to your body.
Treatment options include:
●Nonsteroidal antiinflammatory drugs, also known as NSAIDs
●Steroids
●Disease modifying antirheumatic drugs, also known as “DMARDs”
What can I do on my own to feel better?
It is very important that you stay active. Most people want to avoid being active because of the pain. But that can make things worse. It will make your muscles weak and your joints stiffer than they already are.
A physical therapist can help you figure out which exercises will do the most good. An occupational therapist can help you figure out how to keep doing the everyday tasks you need to do − even with arthritis.
Another thing you can do to on your own is to eat a healthy diet. People with rheumatoid arthritis are at risk for heart disease, so avoid fatty foods. Instead, eats lots of fruits and vegetables.
If you want to get pregnant, talk to your healthcare provider about it before you start trying.
Some of the medicines used to treat rheumatoid arthritis are not safe for a baby, so you might need to switch medicines before you get pregnant.