What you need to know:
- Jumbo’s wife, Edna, went into a coma last year after a road crash.
- Days have now turned into months and all he clings on is hope that she will one day wake up.
Your average bedroom is a place where comfort rules, dreams have a theatre and tranquillity domiciles.
But David “Jumbo” Muchiri’s bedroom in Kagondo village, Nairobi’s Dagoretti South, is more than just a place where a weary head lands on a pillow for a trip to Wonderland.
His bedroom is a high-dependency unit of sorts, supporting the life and the dreams of Edna Njoki, his wife of 23 years, who is in a coma.
With a nurse present around the clock, life-support tubes, gloves, disinfectants, a sink, a toilet and all, you can hardly believe it was once the master bedroom.
It has been a life support unit since December 24, 2017, when Jumbo made the bold decision to have Edna removed from the high-dependency unit of Aga Khan University Hospital on account of rising costs so he could take care of her at home.
“It was my master bedroom. I tore down one wall to create a door so that in case an ambulance comes, it can carry her out without any hiccups,” he says.
“There are homecare facilities where I was advised to take her. But I thought she would not survive there. I thought it is better to have her at home. I want her food to be special, and at home I can see it being prepared. Had she been out there, I wouldn’t know if she has eaten, if she has been turned,” adds Jumbo.
His wife had stayed at Aga Khan from July 14, 2017 when a Toyota Prado car she was driving was involved in an accident with a matatu near Uthiru Junction, which left her left leg with a deep cut and a badly broken bone that would need the use of a metallic fixator to repair it.
The accident saw her undergo two surgeries in 24 hours and while there, according to Aga Khan Hospital, she developed symptoms suggestive of fat embolism syndrome — a rare condition that befalls people with fractured bones.
“This is a rare complication that occurs within 24 to 48 hours after long bone fractures,” says the hospital in a May 18 letter as it responded to a query from Mrs Muchiri’s family on why she went comatose even when she was talking normally hours after the crash.
Fat embolism syndrome occurs when a droplet of fat, usually from the bone marrow, enters a person’s bloodstream. The result is a limitation of the blood’s ability to transport oxygen, which often comes to the detriment of a number of body organs.
In the case of the 43-year-old Mrs Muchiri, the brain appears to have been the most affected, and that has left her lying comatose for a year.
At the bedroom in her matrimonial home, she spends most of her time lying on specialised bed that has wheels, and which allows for a patient’s stature from the waist upwards to be lifted up and down by turning some knobs. Sometimes she is placed on a wheelchair to be ridden to the living room or outside to sunbathe.
As you enter the reconditioned bedroom, the sharp smell typical of a hospital ward hits your nostrils. If not for the sonorous music from a small transistor radio placed by her side, this would be a room where the silence can deafen. A heater and a machine for clearing sputum from her throat lie on the floor, with long tubes connected to her throat.
A small crucifix, a hanged rosary and another one wrapped around her right wrist, and wall hanging depicting Holy Mary holding baby Jesus are also features you cannot miss in the room.
You cannot also evade the cold, long stare at one direction by a motionless Mrs Muchiri. The braces on both her legs reinforce the message of how immobile she is.
“She hasn’t changed much since that day,” the husband says. “She neither sees nor hears but there is hope. There were days when she could not turn. Nowadays, she responds to efforts to turn her around.”
When specialists from Aga Khan examined her in June, they noted improvements.
“Clinically, she has improved in terms of turning eyes to noise and pupils reacting to light,” says a June 22 medical report.
“They say it takes a process; that the recovery is so slow that you may not notice. As I stay with her, I may hardly notice,” says Mr Muchiri, adding that one major improvement is that she no longer needs a concentrator to aid breathing.
In his consultations, Mr Muchiri has been told that if such a patient does not regain her senses in four to six months, they can recover after a year and a half.
“Now it’s over a year. We are waiting for the 18th month,” he says thoughtfully.
“We sent scans to an Indian hospital and they said her process is self-curing; that no doctor can cure it; that it only needs the therapy,” he adds.
It has been a steep learning curve for the 47-year-old husband and their two daughters aged 23 and 15.
Notably, it has been a year of readjustments.
Jumbo had to stop being a meat trader in Dagoretti to focus his energies on his bedridden wife.
“I just keep thinking about her. That’s why I couldn’t continue with my business. I couldn’t concentrate,” he says.
Their daughters have had to make sudden readjustments. The younger one was to celebrate her birthday the day after Mrs Muchiri had the accident at around 6pm when she was coming from work. One of her planned activities that Friday evening was to buy supplies for the party. All that had to be forgone after the crash that saw her car written off.
“They are stressed and you can tell it. Like the younger one was very close to her mother,” says Mr Muchiri, noting that the elder girl is a student at Strathmore University who has been taking all the happenings in her stride.
Their academic performance has been affected, he said, and teachers of the younger girl, who is in Form One, had promised to find her a counsellor.
It has also been a year of living the wedding vows.
There are times when Mr Muchiri goes to the bedside to talk to her, not caring if she is hearing him or not.
“I just tell her she is fine; that I’ve never abandoned her; and that she will get well. Like we said during the wedding, ‘Until death do us part.’ That’s why I brought her here,” says the husband.
He longs for that day when his wife, a chatty woman, will talk again.
“I’ll be very happy. And it is the dream I have always had: to be called from wherever I will be to be told that there is recovery; that there is a change,” he says.
“I’m told you can find her just getting well without a warning. That will be my joy. It won’t be a small thing because the current state is devastating: Someone doesn’t talk, laugh, and doesn’t even know you are there,” adds Mr Muchiri.
It has equally been a year of trying to pull back normalcy.
One of the items Mr Muchiri has had to acquire is a specialised wheelchair. Using it, he can move his wife to the sitting room where he tunes to the Food Network, his wife’s favourite television station. “She is a good cook and that is the channel she was deeply into,” he says.
A therapist had told him that this is good for his wife’s regeneration.
“We were told that in this therapy, we are supposed to tune in to the channels she used to like so that we can put her in the right frame of mind,” he says. “We also play music from the radio.”
It has been a year of steep, unforeseen expenses. A Sh6.3 million bill is still outstanding at Aga Khan, following expenses Mrs Muchiri incurred during her stay.
“The bill had reached Sh13.5 million. The insurer said it would pay Sh5 million. We paid the rest through what we raised,” says Mr Muchiri.
This is on top of costs for buying medication and a special diet. Her food is prepared like normal meals, then blended and administered through a tube on her side. It is the same channel used to administer the drugs that she needs daily. The current prescription from Aga Khan is six different drugs every day.
Then there are four specialists who need up to Sh120,000 a month; two nurses, a physiotherapist and an occupational therapist.
The nurses have day and night shifts, and they are the ones who change Mrs Muchiri’s diapers, administer medication and clean her.
“She can’t do without a nurse because of the need to be turned, and the need to change diapers,” says Mr Muchiri.
And whenever there is need to take her to hospital, he needs to cough up Sh11,000 for an ambulance. He is happy that it does not happen often.
The expenses are squeezing the family purses hard. Given the coma, Mrs Muchiri can no longer work with a private immigration consultancy where she had stayed for 13 years.
Mr Muchiri has an M-Pesa PayBill number 959621, through which well-wishers can send donations using their name as the account number. One can also deposit cheque or cash to his Equity Bank account number; 0570191262694, account name: David Muchiri Mwangi.
And on September 2, he is planning a fundraiser to help settle the hospital bill and to get enough to meet other expenses. Having held another fundraiser last September, and because this time he aims to raise Sh10 million, he has seen how this has tested his friendships.
“Sometimes when I call someone, he or she does not pick and I start to imagine they are thinking I’m still asking for something,” he says. “You just see people ignoring you. But what can you do? You have to beg.”
The past year has also been a time of intense prayer. Mrs Muchiri was the vice chairperson at St Mary’s Catholic Church, Kagondo, at the time of the accident. Her strong devotion to the church has made many congregants stop by to pray for her, and even priests have visited for a prayer.
“She also relished church activities. She always had to participate,” says Mr Muchiri. “I believe she will rise up one day. If she has overcome thus far, nothing is impossible.”
But there are times when he can’t help but be pessimistic. “Sometimes moods run low, and my mother even starts weeping. At those times, I leave the compound, then look for friends and sit with them to talk,” he says.
Not surprisingly, it has been a year of eerie silence in the Muchiri household.
Jumbo misses the Edna who would spend time chatting away with his mother till he had to remind her that it was time for cooking. He misses the Edna who would light up the room when she came home and engaged in a hearty chat as she prepared meals in the open kitchen. “She was a very jovial person. She is the type that makes noise throughout. When she parks her car and happens to meet my mother out there, they will talk until I call her to come and cook,” says the husband.
“I miss her presence. I want just want to see her entering the house, preparing meals in the kitchen,” he adds.
Amid that silence, when their children are in school, he has been reflecting on the fickleness of this thing called life.
“Some things happen so fast. I did not expect that such a thing could happen. Now, my thoughts are clogged. I can’t say I’m that normal. I’m slow, even in thinking,” he says.
But he cuts the figure of a man who has chinned up, accepted the situation and is willing to do anything to get the apple of his eye back on her feet.
People have been in unresponsive state for long
Mrs Edna Muchiri has spent one year in a coma, with promising signs of recovery, but there are people who have stayed in that state for years. Her husband David says medics describe her condition as “vegetative”, which denotes very little brain activity. Across the world, there are individuals who have stayed in her state for a lengthy period of time.
Elaine, born in the US state of Illinois, she slipped into a coma aged six in August 1941. This happened following an operation to cut her appendix, where the anaesthesia procedure went awry. She stayed in that state for 37 years and 111 days, dying in November 1978. Hers has been recorded in the Guinness World Records as the longest coma ever.
The wife of former Nyeri Town MP Wanyiri Kihoro, Dr Wanjiru stayed in a coma for almost four years after a January 2003 plane crash that claimed the lives of the then Labour Minister Ahmed Khalif and two pilots. Mr Kihoro, a lawyer, was at his wits’ end when he spoke to Nation when the hospital bill had hit Sh130 million — just two years after admission. He said he had been visiting the hospital at 4pm every day, hoping that he would find her awake one day. But she did not. She died in October 2006.
The former Israeli Prime Minister spent eight years in a coma at the Sheba Medical Centre up to 2014 when he died. The cause was a stroke he suffered in 2006, which was bigger than one he had suffered in December 2005. Mr Sharon, who was once an Israeli soldier, is remembered for his gigantic frame and his hard-line stance on various issues.
By the time of her death in March 2005, Ms Schiavo had sparked debate in the US about the rights of a person who cannot medically get off a coma. She collapsed in her house in 1990 due to heart complications, and was soon in a persistent vegetative state. After a decade in a coma, her husband Michael launched a petition to be allowed to take her off life-support machines, which drew a sharp reaction from the right-to-die movement. She died 13 days after doctors withdrew her feeding tube.
Martin’s story gives hope to those whose loved ones are in a coma. The South African author stayed motionless in hospital for eight long years, at one point his mother told him: “I hope you die.” He would later tell South Africa’s National Public Radio that throughout those eight years, he was fully conscious. “Everyone was so used to me not being there that they didn’t notice when I began to be present again,” he said. When he was 25, one of his therapists realised that he was expressing himself and that started the process that led to him having a voice synthesiser to help him communicate. He got married to a social worker in 2008. He wrote a book titled Ghost Boy to chronicle his experience.