I know this pain will fade away one day, says woman paralysed for 20 years

Margaret Achola, 60, who has been bedridden for the past 20 years since she lost the strength to leave her bed or do anything for herself at her Kisian home in Kisumu County in a picture taken on January 07, 2020. [Denish Ochieng, Standard]

For over two decades, Margaret Ochola, 60, has been confined to her bed due to a spinal cord paralysis that started as back pain in 1993.By Mactilda Mbenywe

My name is Margaret Ochola, I am 60 years old and I live in Kisian in Kisumu County. The huge clock by my side is the only way I know life around me is still moving. It was a gift from my late husband and I cherish it with all my heart.  I look at it often as a reminder that even though things inside my body have stagnated, the world around me is still moving. My troubles started in 1993 while I was weeding on my farm. I felt a sudden searing pain on my back. I ignored it thinking it was just fatigue from the hard work I was doing. I would occasionally get pain that would be relieved whenever I took painkillers.

Things got worse in 1996 after my husband died. Since then, I started feeling immense pain whenever I tried walking. It did not take long before doing even the most basic things that made me cry out in pain. By 2000, I could no longer walk, and I was diagnosed with paralysis of the spine. I have been bedridden since then.

Every day, I pray for death. I know it is not a good thing to do, but living like this makes me so hopeless. I can do nothing for myself. My spine cannot hold my weight so I have to be in bed throughout my life.

I do not know what is happening outside. I sit in this mud thatched house, from morning to night. I just stare at the clock to know what time it is. I sit in the dark because I cannot stand to light up a lamp. I never got a child in my marriage, so I am all alone.

Sometimes, well-wishers stop by to help me turn, give me food, to wash me, change my clothes and have a conversation with me. But they all leave, and I am left alone, with my own thoughts and sorrow. It is a very depressing life, and I would not wish it on anyone else. There are good times when well-wishers come to clear my compound because it gets very bushy and I get scared that something might get inside my house and I would not scare it away or run because I cannot move. The best moments are when neighbours carry me outside so that I can feel some fresh air and get some sun, which I long for when I am in bed. The feeling of the sun on my body was one I used to take for granted, but now, I long for it.

It is humiliating, to answer the call of nature in my own bed and then wait for someone to come and help me. Sometimes it takes so long, so who can blame me for wishing for death? I am living a life with no dignity. There are days when nobody brings me food. I wait and wait, and then I start praying for death, yet it never comes.

I have explored all the medical options, but nothing has ever worked. I have tried prayer, herbal medicine, going to different experts; I spent all the money I had and yet here I am, lying in bed because nothing has worked. There is a wheelchair at the corner of my room that I got when I just started ailing, but now I cannot use it. It reminds me of how fast hope can fade. Earlier, my relatives were helpful because there was hope that I could get better, but as the years go by, they realise that I may never get better. The number of people checking up on me started reducing. I guess it is because they got tired, always finding me in the same position.

Being childless, losing a husband, and then getting this terminal disease in the village has made people believe that I am bewitched. There are some friends and relatives who stopped coming because they thought associating with me could transfer the bad vibes in me to them.

My condition causes so much pain, and in 2018, I was hospitalised for more than one month, but doctors had to discharge me because there was no change. Doctors suggested that I go for physiotherapy, but who will take me? Where will I get the money?

Those are the questions that go through my mind all the time. I get no answer, and then I start sobbing quietly in my bed, praying for the pain to fade away, for death….

Cost of treating an injured spine

The spinal cord is about 18 inches long and extends from the base of the brain, down the middle of the back, to about the waist. Injuries to the spine that result in paralysis involve damage to the spinal cord or nerves at the end of the spinal canal. They cause permanent changes in strength, sensation and other body functions below the site of the injury.

Spinal cord injuries are described as complete when almost all feeling and ability to control movement are lost below the injury site.

Spinal cord injury (SCI) involves damage to the nerves within the bony protection of the spinal canal. The most common cause of SCI is trauma, although damage can occur from various diseases acquired at birth or later in life, from tumors, electric shock, poisoning or loss of oxygen related to surgical or underwater mishaps.

The quicker the patient obtains treatment, the better the chances for recovery from spinal injuries.

Medics at Jaramogi Oginga Odinga Teaching and Referral hospital say there is stigma and rejection accompanying confinement to a wheelchair, mortality is high among resettled patients.

Dr. Thadeus Massawa of Kisumu County referral hospital, says physiotherapy helps in relieving pain for people with spinal paralysis. Medics say the patients also need nutritious, protein-rich diets for spinal health, and adult diapers for basic hygiene, which they can rarely afford. Because of the poor condition. Many suffer from bedsores. 

 The cost of doing an operation for a spinal cord injury ranges between Sh250,000 and Sh2 million. Several studies have indicated that for every 10 people screened, eight suffered from nerve tension along the upper back ranging from mild to very severe. People who constantly use computers or have a job that involves a lot of sitting are more likely to get spinal and back complications.