I have been planning on doing this story for months; but everytime I tried to reach Grace ( I call her Mama Caleb) she wouldn’t answer my calls. I was introduced to her by her daughter in law Juliet — a childhood friend of mine who has featured severally on this blog. Severally is twice. She has had some crazy near death experiences and she once told me, “You think my stories are crazy? You need to interview my Mom in law. Her experience will blow your mind.” So I persisted and eventually got in touch with her. “I have really tried to reach you for the past couple of weeks.” I say to her. “ Really? I didn’t see your missed calls.” ‘There goes the proverbial excuse that most people use when they don’t want to answer your calls,’ I thought. Only she wasn’t giving excuses — she didn’t see my missed calls because she cant!
The year was 1997. Grace was jarred awake by a splitting headache. The kind that won’t even let you blink. It was like a bolt of lightning had hit her head causing her eyes to rain. At least that’s how she described it. She didn’t beckon the tears but they came. They streamed down her face unregulated like tributaries. Yet she was not crying. She tried to go back to sleep but the headache wouldn’t let her. Even after taking painkillers the agony remained. So she stayed up and waited for first light to drive herself to hospital.
The doctor she met told her he suspected the problem was with her eyes and referred her to an Ophthalmologist. (Don’t be lazy folk, read the word. It’s not that hard). The eye specialist examined her and found that she was short sighted. So he prescribed glasses and sent her on her way. His brief explanation didn’t make sense to her; she had so many questions which were answered by a brick wall. This was back in the 90s when medics were revered and their word was law. No one ever thought to question a doctor.
She took the glasses anyway but instead of getting better her eyesight got worse and the headaches persisted. “I went back to the first Doc I had met. He maintained the problem was my eyes and sent me to a different ophthalmologist who adjusted the power of the glasses. I remember trying to read the newspaper or my Bible and all I could see was black marks on a white background. I could only read words that were in large print.” She started to buy and chew tablets of Panadol Extra and always had a packet in her purse so that whenever the mallet hit her head, she would chew two tablets and wait for the next strike.
Grace lived like this for five years and her visits to the hospital diminished and eventually stopped. She just wasn’t improving. However two things happened that alerted her that there was more going on in her body. “My menses started to disappear and they told me I could be getting to menopause.” Yet she was only 34 years old! How could this be? Secondly, she failed to recognise a friend of hers. “I was in church when she was walking towards me and I only recognised her when she was right under my nose. I knew then that it couldn’t be business as usual so I went back to the medics in search for answers. The ophthalmologist I saw checked my glasses and realised the power was too high. Something else was wrong so he recommended a CT scan of the head.”
“When the CT was done, the demeanour of the technicians changed towards me. Before they had been going through the motions, now they wore kiddy gloves and handled me like you would an explosive.” They gave her an envelope with her scans and a written report and asked her to see her doctor urgently. “I don’t know why they give you those envelopes assuming you can’t read and will naively wait to see your doctor.” She opened it before she even left the hospital compound and detonated the bomb. The report was detailed and most things did not make sense but she didn’t need to go to medical school to understand two words: Brain and Tumour.
She didn’t react the way she expected to. Maybe her brain was already fried. “I became like a block of ice. Frozen and numb. I did not cry.” She called her husband and broke the news to him the way you would tell someone to remember to buy milk on his way home. He was shocked and later accompanied her back to the doctor. Their lives became an erratic wheel of kinesis and paralysis. They wanted to seek a second opinion but they didn’t have the luxury of time. Things began to happen real quick. They were introduced to a Neurosurgeon who recommended surgery to excise the tumors. She had two large growths around the pituitary gland. (Don’t google. Class is at the bottom)
He evaluated her and told her that there was this new technology where he didn’t need to open up her skull to operate. That they could go in through her nose and perform the procedure. “Where can I sign?” She was only too happy to have this option — not wanting her skull opened up. She underwent the procedure but developed a blood clot soon after, necessitating them to open up her skull anyway. The clot was evacuated but this was just the beginning of her woes.
Back in the ward, she developed what she thought was a flu. Clear fluid was streaming down her nose in alarming amounts. Anytime she bent forward, a torrent of fluid would come out and no matter how many times she blew her nose, it wouldn’t stop. After evaluation it was discovered that her nose was running alright but it wasn’t mucus she was blowing out. It was cerebrospinal fluid! This is the fluid that surrounds your brain and spinal cord and necessitated a third operation to fix.
It was after this third time, that things went downhill. What transpired after was reported to her by those who were around her — because she cannot remember. “My eyes began to play magic tricks on me.” Now you see me, now you don’t. She would see her husband one minute then he would be gone the next. One minute, there would be light and the next there would be darkness. She was on a visual rollercoaster and would respond with hysterical cries — plunged into a world of utter confusion. Panic was an understatement. All the torrent of emotion she had been corralling for weeks was trying to squeeze through her all at once. Then one day she vomited and everything went black. Her eyesight, speech and motor abilities took a walk. Even her cognitive abilities disappeared.
She was in a form of vegetative state and couldn’t recognise anyone — not even herself. She forgot who she was and where she was. Seeing as there was not much that was being done for her at the hospital, she was discharged for home based care. “My husband tells me, he tried to bathe me once and I refused because I did not know who he was. I didn’t even remember my own children.” She was disoriented for months then as suddenly as it began, the brain started to heal itself. The orientation that first came to her was — place. She remembered her home, then she slowly began to recognise her husband and her siblings.
“I was told I would spend my days in a loop. Wake up, eat, take meds, sleep, repeat. And everytime I woke up I would assume it was morning.” She had no orientation in time because her whole world was dark. When she was awake, they would put a radio next to her to keep her company and it was only until she once heard a broadcast meant for exam candidates of the previous year that the fog began to lift. “What year is it?” She asked her husband. “2004,” He responded. “When did we get to 2004?” Her last memory had been after her second operation in 2003. She had been in a mental trance for months! She was not aware that so much time had passed and insisted that she must be told what day and time it was.
Grace slowly began to regain function. But her sight took flight and never came back. Several consultations later, the word that was repeated to them was, ‘nerve atrophy’ — a term she did not recognise. Basically what the medics were saying was that her optic nerve had ‘wasted away’ and nothing could be done. She threw a pity party and sent out invites. “Thank God for my husband who acted in haste and took me to Kenya Society for the Blind to start on rehabilitation.” He cancelled the pity party and held her hand as they navigated through unfamiliar territory.
At the society, she underwent comprehensive counselling and was taught how to walk with a white cane. “They would take daily walks with me and taught me how to move about.” She was taught how to read Braille — a tactile writing system for people who are visually impaired — and how to use JAWS (a computer screen reader program that allows visually impaired users to read with a text to speech output). “It is hard to learn a new way of life when you are older. I have still not grasped it fully. Feeling those dots on a page was terrifying and gruelling at first. It needed patience, time and dedication to unlearn and relearn how to live life in darkness. Children get it faster. Especially the ones born blind. They learn to navigate quickly and adapt seamlessly. Those who lose their vision in adulthood — like me — go through a lot of difficulty and periods of denial.”
She has had to get an assistant to help her navigate. “I miss being independent. I can’t just up and go to the shop or visit a friend. I rely on people for the simplest of things. Saddest of all I have a grandchild and a daughter in law I have never seen.” She became unwell when her sons were teens; that was the last time she saw them. “Now they are grown men with broken voices and beards and I have no idea what they look like. It is even more terrifying that I don’t know what I look like after all these years. There are light moments when my husband laughs when I put on some clothes upside down; and I realise I would not have made it this far without his support. We have been married 35 years, half of which I have been blind.”
“For a time, my mind was a battlefield. I wondered whether this was a punishment from God and would spend time repenting my sins and asking for forgiveness. Once a family friend approached my husband and asked him whether we had wronged someone for me to be punished in such a way.” They forgave him but before that they had lived under that cloud of self doubt for a while. She realised she had been dealt a card for a reason. True, she was visually impaired and she felt every molecule of her loss but she has endured it. She is not diluted; she is amplified. With the time she has on her hands, she has renewed her faith in Christ and spends alot of time listening to the word of God. She has also become more compassionate to the needs of other people. She is a lawyer by profession and is still able to work — her impairement notwithstanding.
“God has truly been gracious. He preserved my life for a reason. I could have died on that operating table but I didn’t. My daily prayer now is; ‘Lord teach me to number my days so that I may apply a heart of wisdom.’
As told to me by Mrs. Grace Thuku
The pituitary gland is a small pea sized gland located at the base of the brain that plays a role in regulating vital body functions. It has different cells in it that make different hormones.
A pituitary adenoma is an abnormal growth in the pituitary gland. Pituitary adenomas can cause problems in different ways:
●They can make too much of a certain hormone. ●They can press on nearby tissues in the head, such as the nerves that go from the eye to the brain. This can cause vision problems. ●They can press on other cells in the pituitary gland and keep those cells from making enough hormone.
Symptoms depend on the type of pituitary adenoma you have and how big it is. Some pituitary adenomas, especially small ones, cause no symptoms. People find out they have it after an imaging test of their brain is done for other reasons.
Depending on the hormone involved, symptoms include: ●Absent or irregular monthly periods, and a milky discharge from the breasts (in women) ●A low sex drive or trouble getting an erection (in men) ●Some parts of the body (especially the hands, feet, and jaw) grow bigger than normal. This usually happens over a long time. ●Medical problems such as weight gain, high blood pressure, thin bones, and weak muscles.
Symptoms can also happen if the pituitary adenoma grows big or presses on nearby tissues. These symptoms can include: ●Vision changes ●Headaches
Tests for a pituitary adenoma include: ●Hormone tests ●MRI scan, of your brain ●Vision tests
Treatment— A pituitary adenoma that is found by chance and causes no symptoms does not usually need treatment. But the growth is monitored over time by doing regular follow-up tests. A large pituitary adenoma or a pituitary adenoma that causes symptoms usually needs treatment. Which include: ●Surgery — Many pituitary adenomas are treated with surgery. During surgery, the doctor makes a small cut in the back of the nose and then uses a special tool to take out the growth. ●Medicines — Medicines can be used instead of surgery for some types of pituitary adenomas. The medicines can shrink the growths and lower the amount of hormones they make. But medicines do not work for all types of pituitary adenomas. ●Radiation — Radiation is used to destroy or shrink the growth. Doctors usually use radiation after surgery to keep a pituitary adenoma from growing back. After treatment, your doctor might do regular follow-up tests to monitor your pituitary adenoma and make sure it doesn’t grow back. Some people also need long-term hormone treatment to correct the hormone levels in their body.