I'm Going Nowhere

By Mary Oketcho-Dicks

This book, I’m Going Nowhere, is fiction based on the true story of an African woman, Miriam Ateko, who currently resides in Europe. Shortly when she relocated here, she was diagnosed HIV positive and told she would die in eighteen months without treatment.

It was extremely distressing for Miriam. She felt anxious, was in denial and almost went into depression. She had to figure out how to deal with the diagnosis. The process was not easy as she faced obstacles along the way, like stigma, discrimination, rejection, among others from the very people she thought would have supported her to deal with the trauma of being diagnosed HIV positive.

Despite the struggles she encountered, Miriam never gave up. With the right treatment and help from two organisations and some friends, her health improved, though not cured yet. She is now living her life to the fullest. She forgave people who wronged her but will not forget how she was treated.

Miriam’s story is sad, but inspiring. The story encourages HIV positive people not to give up life easily. When you follow ART exactly as prescribed you can achieve an undetected virus load and continue to live a healthy life.

• Language: English
• Publisher: Austin Macauley Publishers
• Release date: Mar 28, 2024
• ISBN: 9781035837502

Mary Oketcho-Dicks

Mary Oketcho-Dicks was born in Uganda, Africa, in 1954 and moved to the United Kingdom in 1999. She has lived there since and is now a British citizen. Mary is an enthusiastic woman who has a strong feeling of eagerness to do something. She works with passion, even when in a difficult situation. Soon, she will be publishing a book titled I Became Speechless and Immobile based on her experience with stroke, and her second book, titled I Am Going Nowhere, is a fiction based on a true story and has just been approved for publication.

Book preview

Introduction

This book is based on a true story about one woman called Miriam Ateko (not her real name), and all the characters too are imaginary. She is an African-born and bred woman, but now living in one of the European countries.

In the late 1990s, Miriam travelled to this European country on a government mission to attend an event. Luckily enough, she was given a six-month visa and she had three of her brothers, Kevin, Jimmy and James (now all late) with their families already living in the country.

Among the brothers, James was living alone and so the three brothers perhaps agreed that when Miriam came, she would stay with him. Sadly, just a few weeks into her arrival, she felt pain in one of her legs. At first, she thought the pain would go away with painkillers, but it didn’t.

For some people, chronic pain could be due to a health condition such as arthritis, but Miriam didn’t have arthritis. It must have been something else. She was feeling so bad that her brother, Kevin, took her to his personal doctor for treatment. But not sure of the cause of the pain, the doctor declined to treat her and instead referred her to one of the hospitals to be investigated before any treatment could be given.

Chapter One

Each time Miriam recalled the excitement of the trip, she felt a sudden unpleasant urge to turn back the clock and begin it all over again. Anyway, when she arrived at the hospital she was referred to, she was seen by Dr Chris, who suggested several tests to be conducted. In the meantime, she was advised to continue with the painkillers she was taking as she waited for the test results.

In the hospital, Miriam was referred to, several tests were carried out and after two weeks, Kevin received a phone call from the hospital that the results were back and Miriam was urgently needed to go and get them. He then phoned her and said, ‘Miriam, your blood test results are back. The hospital phoned me that I should take you back to get them.’

Miriam asked, ‘When do you think you’ll be available to take me?’

Actually, when Kevin received the phone call and was told it was urgent, he made an appointment for the following day. He said, ‘I was told it’s urgent, so I have already made the appointment. It is tomorrow at 11 am.’

Excited that the root cause of her pain could have been established, the following day, Miriam was back in the hospital. Not did she know that within a few minutes one of the results would turn her life upside down.

Miriam said, ‘That’s wonderful. Thank you, Kevin. In that case,’ Miriam said, ‘I’ll make sure I’m ready in time for you to pick me up tomorrow.’

As she promised, the following day, Miriam got herself ready and waited for Kevin to come and pick her up. While she was excited to get the results, she never ever expected anything upsetting. The trouble with not knowing any results is that you can spend time pacing up and down hoping for the best. But a few hours later, one of the results would turn her life upside down.

Anyway, Miriam didn’t have to wait long before Kevin arrived to pick her up. Just a short drive away, they arrived at the hospital. She registered her arrival and waited at the reception for her turn to be called.

Miriam had sat there, her eyes busy wandering around, looking at pictures on the walls, when she suddenly heard her name. ‘Miriam, please go to Dr Chris’ room,’ the voice said.

Quickly, Miriam got up, leaving Kevin at the reception, and hurried to Dr Chris’ examination room. On entering the room, Dr Chris was there sitting at his desk waiting for her. He asked her to sit down and she sat on a chair by his desk on the opposite side, facing him.

Miriam sat with both her hands on the desk. Dr Chris then stretched and held one of her hands, and talking calmly, he asked, ‘How are you feeling, Miriam?’

Responding swiftly, Miriam said, ‘If it wasn’t for the constant pain in my leg, I would be okay.’

At that point, Dr Chris looked Miriam in the eyes and still holding her hand, said, ‘I understand. I’m glad you came. Last time you were here, your blood was drawn and taken away for testing…’ Miriam nodded and he continued, ‘eight tests were conducted and we have got back the results for them all. Would you like to hear them?’

‘Yes, please,’ Miriam said.

Still holding Miriam’s hand, Dr Chris calmly said, ‘Seven of them came back negative, but one of them…’

There was a pause for a few minutes and Dr Chris continued, ‘I’m afraid one is positive.’

Not expecting anything serious, Miriam was quite excited that at least the positive result would be the cause of her pain. Quietly she listened, thinking that at least her problem was about to be solved…and soon she would be okay, free from pain. Squeezing her eyes, she curiously asked, ‘Dr Chris, what do you mean…the eighth one is positive?’

Still not prepared for what she was about to hear, Miriam leaned forward and patiently waited as Dr Chris paused. It was painful to wait, especially as she didn’t know what to expect. She was becoming impatient, but at the same time eager to know what the doctor was talking about. In spite of that, she put on a brave face and calmly asked, ‘What’s it, Dr Chris?’

Still holding Miriam’s hand, at last Dr Chris softly and clearly said, ‘Miriam, I’m afraid the positive result is that you’ve…you’ve been found to have human immunodeficiency virus (HIV) in your blood. I mean, you’re HIV positive.’

Alarmed, Miriam asked aloud, ‘What? That can’t be, Dr Chris. No. It can’t be.’

Dr Chris nodded his head a few times and said, ‘Miriam, it’s true; you’re HIV positive.’

The word HIV instantly made Miriam’s world turn upside down. She literally knew her life had ended. Little did she know that it was the beginning of her other side of life. She went through shock, numbness, denial, anger, sadness and frustration, which is absolutely normal and comprehensible to feel any of them.

It was not possible to accept the news. Miriam began to cry and it was hysterical, causing Dr Chris to become concerned. Though she had family around, at that moment she got the bad news, she felt alone. She wasn’t sure how they (her family) would react if they learnt of her diagnosis. She felt confused and there was a worried frown on her face.

What frightened Miriam most was when Dr Chris said, ‘HIV is a life-limiting condition that is likely to cause anyone, regardless of their age, to die within days, weeks, months or sometimes more than a year. Sadly, it is predicted that you have only eighteen months to live without treatment.’

Through her tears, Miriam asked, ‘What? Eighteen months to live… No. That’s not true… It can’t be… How can it be when I’m not only a heterosexual, but have only ever had one partner?’

Given the shock, Miriam couldn’t stop crying, not knowing what to do. She had a misconception that the disease was for gay people, and there was a perception among some people that it affects immoral people and is a punishment from God. She was in neither of such groups, making herself wonder how she could have contracted it.

During the time Miriam was diagnosed HIV positive, there was not much known about it. The disease was first diagnosed in the USA in the 1980s, and according to scholarly articles of Muoghalu and Jegede, 2013, some people formed positive ideas based on either their knowledge or education or upbringing and formed negative perceptions due to ignorance, awareness and cultural belief system.

A perception in most cases, impacts on prejudicial attitudes towards people living with HIV (PLHIV), intensifying their problems and accelerating the deterioration of the disease from HIV to AIDS. Given this perception, Miriam was worried sick.

Dr Chris was concerned as Miriam was crying hysterically. Speaking slowly and calmly, asked, ‘Miriam, did you come to the hospital by yourself?’

Shaking her head, through her tears and hoarsely, Miriam said, ‘No. My brother, Kevin drove me here. He is waiting for me at the reception.’

Hoping Kevin would offer Miriam emotional support and reassurance, Dr Chris asked, ‘Do you mind if I call Kevin in?’

Miriam looked at Dr Chris, shook her and hoarsely said, ‘No. You can ask him to come in.’

Chapter Two

Miriam was very devastated by the sad news of being diagnosed HIV positive. She hoped if Kevin was to come in, perhaps that would give her some comfort. She expected him to have a few moments with her as at that time, she was feeling vulnerable and craving for reassurance to enable her thoughts to diminish. However, she didn’t know at that time that she was making the biggest mistake in her life…to allow Kevin in.

In an ideal world, most people who require reassurance, like Miriam needed at that time, are very anxious and need someone to help them stop fretting by saying kind or helpful things. Actually, she was very disappointed when she never got what she had hoped for.

While Miriam’s fears of Kevin knowing her diagnosis played in her mind, she gave him the benefit of doubt because she was desperate for reassurance. Sadly, he was unconcerned because when he entered and noticed her in a miserable state, very emotional, instead of going to her, he just stood there and stared at her. A few minutes later, he looked at Dr Chris and asked, ‘Dr Chris, why is Miriam crying?’

Dr Chris said, ‘That’s a good question, Kevin.’

As a general rule, medical records of patients are confidential, Dr Chris had to seek permission from Miriam before he could tell Kevin anything. And although the Department of Health and Human Services, the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule, permits healthcare professionals to share their patients’ details, Dr Chris was obliged to seek Miriam’s consent first before disclosing anything to her brother.

To show her agreement, Miriam nodded her head up and down. ‘Yes, you can,’ she said softly.

With that permission, Dr Chris informed Kevin of the sad news. At the same time, when the two men chatted, Miriam kept shaking her head in disbelief. She was silently sobbing and staring at the floor. At that moment, she was paralysed with fear and sadness.

Hoping that after Kevin had been informed of the sad news, he would walk up to Miriam and at least say kind words, Dr Chris was shocked at his non-reaction. Instead, he (Kevin) remained silent, sat down and just stared blankly at him (Dr Chris) then at the ceiling for a few moments. Then he slowly lowered his head to his chest and stared at the floor.

It was very embarrassing for Miriam as it was not how she had expected her brother to react. His lack of support, especially him being a family member, made her feel so disoriented that Dr Chris had to step in and say some kind words to her. He softly said, ‘Don’t worry, Miriam. I’ll do what I can to help you.’

By failing to react to Miriam’s depressed news, Kevin seemed to have denied her having feelings about her diagnosis. He did not believe that feelings of betrayal, hurt, anger and devastation of being diagnosed HIV positive was a big thing. He must have heard everything Dr Chris said, but perhaps every word seemed to have frightened him.

Miriam shook her head in disbelief as she watched Kevin just sitting there, saying nothing. She was so upset that she wanted to scream at him, but then swallowed and softly through her tears said, ‘Kevin, you’re an embarrassment to yourself and to us all. I wish I had not agreed with Dr Chris to call you in…I don’t think you understand what I’m going through now!… Well, it’s okay because this is my problem and not yours.’

Even with those remarks Miriam made, Kevin still said nothing. It was disappointing and humiliating to her. It would have been more helpful for him to, at least, just acknowledge her sickness, and lovingly encourage her to seek treatment for it.

From experience, a patient who has a family member or friend around, tends to provide him/her with security and confidence. According to Conway, former chief operating officer at Dana-Farber Cancer Institute in Boston, regarding patient-centred care that involves families, claims, ‘It is not ours to decide. Our patients and families are taking us there.’

In line with Conway’s claim above, we must remember that living in the extreme uncertainty of not knowing whether someone will survive or what the future holds, affects people in many different ways as well as their relationships with others. Miriam had been predicted she would die in eighteen months, so when Kevin was informed of it, that might have freaked him out, contributing to how he must have behaved. Nevertheless, this was his blood sister… At least, he would have just put his arm around her.

Feeling embarrassed and irritated due to lack of reaction from Kevin, Dr Chris looked at Miriam and kindly said, ‘Miriam, I know it must be shocking, but don’t worry, I have some good news for you.’

The moment Miriam heard Dr Chris say he had good news, she with her teary eyes, looked at him and asked, ‘Dr Chris, what good news?’

Dr Chris calmly said, ‘The good news is that there are medications here. They don’t cure, but can prolong someone’s life. If you were a resident here, you would definitely be provided with them without doubt.’

Still sobbing, Miriam asked, ‘What do you mean by that?’

Dr Chris continued, ‘The medications are only offered to residents, of which you’re not…but I leave it up to you to make a decision on what you want to do.’

There was a pause then Dr Chris added, ‘I totally understand, but I want you to take your time, think about it before you make any decision.’

Miriam nodded her head in agreement then Dr Chris added, ‘For the meantime, please first go back home and think about it. No matter what decision you make, I’ll respect it.’

Through her tears, Miriam again nodded her head in agreement, but she was unable to stop sobbing with tears welling up from her eyes. Then a few minutes later, she angrily wiped them off and hoarsely said, ‘It’s unfair…this to happen to me. When…when did I contract it and how?’

Swiftly, Dr Chris could tell that Miriam was in denial, but made no comment. In the meantime, Miriam continued, ‘I came to this country with a good amount of hope to learn more about what other people do so I could take the idea back to my country. And now…now my world has been turned upside down with this diagnosis… Why me? Why has this happened to me?’

Dr Chris, still holding Miriam’s hand, quickly said, ‘Stop, Miriam. Please stop crying and stop asking such questions. You should know that everyone has a different life, you or your family. In your life, things might happen for a reason.’

Wiping off the tears from her face, Miriam hoarsely said, ‘Okay.’

But a few minutes later, as her eyes filled again, Miriam whispered with tear-filled eyes, ‘I wish my children were grown up…it wouldn’t hurt me much. I can’t imagine them wondering what to do in case I am to die.’

But Dr Chris told Miriam again and again, ‘Miriam, I understand what you’re going through. There are people who are experiencing the exact same illness as you. With time…you might meet them and listen to their experience, aspects of their identity, the specific things they miss about wellness. You still don’t know. When that time comes, please have nothing to offer except presence. Just be you and listen.’

Dr Chris’ comforting words never convinced Miriam. With the thoughts of her children’s well-being if she died, still lingered in her mind. She began to cry again, but immediately wiped off her tears, paused for a few seconds and added, ‘Dr Chris, as you suggested, I need time to think. Right now, I’m too nervous and confused about what I should do.’

Dr Chris calmly said, ‘Miriam, don’t panic. Please take as much time as you can, but the sooner you do it, the better for both of us. In fact, you genuinely need time to think.’

Miriam nodded and Dr Chris continued, ‘It’s only you who knows what’s good for you, and be grateful for the good in your life. Most people who are in pain like you, suddenly assume the role of expert, which other people don’t know.’

It was so hard for Dr Chris not to offer Miriam anything. Given that she was going through enough, that he knew he shouldn’t try to find a bright side, or explain away the pain, he said, ‘I can just imagine how you’re feeling, Miriam.’

It was extremely uncomfortable to sit around someone like Kevin, a family member, who had just got very bad news about her sister and showed no sympathy towards her. He (Dr Chris) was in the position of helping them, and he thought that help meant he had to offer something. He had to offer Miriam comforting and uplifting words.

All this time Miriam and Dr Chris were interacting, Kevin had sat quietly perhaps digesting the shocking news. His eyes were searching around the doctor’s room. In an ideal world, he shouldn’t have behaved like that.

Given that Miriam was going through a lot of emotional pain besides being uncertain of what would be next, he (Kevin) would have at least reassured her, but he didn’t.

Chapter Three

Kevin was so carried away that he didn’t realise that Dr Chris was looking at him. It was when he said, ‘Kevin, don’t be overawed by what you see in my room. I do get patients here with different needs.’

Immediately Dr Chris made those remarks, Kevin opened his mouth wide and said, ‘I’m sorry, Dr Chris. I hope I wasn’t distracting you.’ Having said that, he shifted his position slightly, and for a moment glanced in space. He might have felt humiliated.

Meanwhile, Miriam stayed there quietly listening with one of her hands on her chin, perhaps thinking. But deeply, she had decided to trust Dr Chris more than Kevin. With that in mind, she sighed and even smiled, but just briefly. Then suddenly she remembered something. She asked, ‘Dr Chris, how much does the treatment cost?’

Miriam wanted to be sure about certain things to help her in decision making. She had had a simple life and she was always content with what she had. ‘So why this?’ she whispered, adding, ‘coming to this country was one of the best things to happen in my life, but now… I’ve to deal with the trauma of being diagnosed with HIV virus…! This isn’t fair!’

Dr Chris was watching Miriam as he waited to answer her question. His eyebrows drew closer for only a moment then he said, ‘Miriam, don’t worry about the cost of the treatment yet. You’ve not made any decision on what you want to do. Once you do that, then we’ll discuss other things, including treatment. Also, things happen for a reason. I doubt if anyone will blame you without him/her thinking first. It’s all part of human nature, I think.’

‘Hmmm, Dr Chris, you think so?’ Miriam asked.

Dr Chris nodded and Miriam added, ‘Getting the result that I’m HIV positive frightened the hell out of me because the disease is said to be a death sentence. I don’t see any hope to live; there’s just fear in me plus chaos. I’m thinking of praying, but I have seen some good people praying really hard and have never seen a miracle; others get out easily for no apparent reason at all.’

Responding, Dr Chris said, ‘Well, anyone can make mistakes intentionally or not and not everyone can be lucky. Well, in your case, be rest assured that you will be treated accordingly, should you decide to remain.’

If Miriam believed that God is unfair to make her contract HIV virus; a disease that has no cure, that is regarded as a punishment, she muttered, ‘It is worth not praying.’

After that, Miriam had nothing more to say. She felt that it was time to return home and sleep over what Dr Chris had suggested. She said, ‘Thank you again, Dr Chris. I’ll let you know as soon as I decide on something.’

Nodding, Dr Chris said, ‘Please do that, Miriam. Meanwhile, I’ll keep waiting and hoping that you make the right decision. Again, I’ll respect whatever decision you’ll make.’

Anyway, after saying bye to Dr Chris, Kevin and Miriam left the hospital to head to where they had left their car, which was in front of the building. Once they were both ready, Kevin started the engine and they left.

On their way home, Miriam feeling like