After my mum was diagnosed with stage four breast cancer on Friday June 15, 2012 her oncologist recommended chemotherapy followed by a mastectomy then radiotherapy as her treatment plan. After eight rounds of chemotherapy my mum had a mastectomy in December 2012 followed by radiotherapy in January 2013 to target the cancer that had metastasised to her spine.
Unfortunately the doctors at Nairobi Hospital in charge of her radiotherapy fucked things up and ended up paralysing my mum from the waist down because the radiation dosage administered was too high it practically charred her spine. On the other hand the dosage of the steroids they gave her during the procedure was not high enough to cushion the effects of the radiotherapy. They also did not inform my mum there was a high chance the radiation would leave her paralysed, an omission so dire my mum struggled to make peace with it from the minute she learnt she was headed towards paralysis and there was nothing the doctors could do to stop it. She had long suspected that the doctors at Nairobi Hospital fucked up the radiotherapy and when she eventually got that confirmation on June 1, 2015 from a pain specialist she was seeing at Aga Khan Hospital it downright broke her heart. That was one of the saddest days of my mum’s life and when we spoke that day after the pain specialist inadvertently broke her heart, the pain in my mum’s voice was so acute and I felt it so deeply that I could not go to work the next day. I called in sick and stayed at home feeling bad for myself and mad about the whole situation for a few hours before going to visit my mum at the hospital.
The botched radiotherapy damaged the nerves in my mum’s spinal cord resulting in a Spinal Cord Injury (SCI). According to the Christopher & Dana Reeve Foundation there is a critical lack of GABA (gamma-aminobutyric acid), an inhibitory neurotransmitter, in the injured spinal cord. This may “disinhibit” spinal neurons that are responsible for pain sensations, causing them to fire more than normal.
The SCI is what led to my mum’s paralysis as well as the chronic pain she grappled with for years. The paralysis may have devastated my mum, but it was the chronic pain that made her want to give up the battle with cancer and die. Before I get into the strain the chronic pain had on my mum’s physical, emotional and mental health, I need to explain the technical aspects of it first in order for you to have a greater understanding of what my mum went through.
Pain is a signal triggered in the nervous system to alert us to possible injury. When you cut your finger or pull a muscle, pain is your body’s way of telling you something is wrong. Once the injury heals, you stop hurting.
Chronic pain, though, is much more confounding. It is the kind of alarm that doesn’t go away and is resistant to most medical treatments. It may be as a result of an ongoing cause – arthritis, cancer, infection – but some people have chronic pain for weeks, months and years in the absence of any obvious pathology or evidence of damage. A type of chronic pain called neurogenic or neuropathic pain often accompanies paralysis – it is a cruel irony for people who lack sensation to experience the agony of pain.
Paraplegics suffer from no longer feeling their legs again, but the condition is often accompanied by neuropathic pain due to the spinal cord lesion. The patient feels pain originating from the legs, even though nothing else can be felt below the lesion. The sensation of pain is real and yet completely resistant to drug therapy.
According to WebMD: Neuropathic pain is often described as a shooting or burning pain. It can go away on its own but is often chronic. Sometimes it is unrelenting and severe, and sometimes it comes and goes. It often is the result of nerve damage or a malfunctioning nervous system. The impact of nerve damage is a change in nerve function both at the site of the injury and areas around it.
Between 2014 and 2015 my mum was being admitted to hospital on a monthly basis. Before she became paralysed from the waist down in September 2014 my mum was being admitted for pain management and after she became paralysed she was being admitted for a whole host of complications caused by an SCI, in addition to pain management. Spinal cord patients have a higher risk for cardiovascular disease; pneumonia; life-threatening blood clots; bladder, bowel and sexual dysfunction; constipation and other gastrointestinal problems; pressure ulcers; and chronic pain, according to a report published in the journal Current Neurology and Neuroscience Reports.
My mum’s paralysis did not happen overnight though. A year or so after she completed the radiotherapy my mum began walking with a limp that was hardly noticeable at first but slowly got worse as the days went by. Unbeknownst to us the limp meant there was nerve damage she had sustained from the botched radiotherapy – something we were also unaware of at the time – and it was worsening with every passing day.
Before the paralysis came the pain, but unfortunately neuropathic pain often responds poorly to standard pain treatments and current medications for most chronic pain conditions are relatively ineffective and are used mostly in a trial and error manner. Meaning when my mum was being admitted in hospital for pain management on a monthly basis, it was not so that she could get total relief from pain so intense it practically held her hostage some days. She was being admitted so that the pain could be managed to a level that improved function and allowed my mum to participate in day-to-day activities.
Between 2014 and 2015 my mum was in pain almost every day from daybreak till early afternoon. Daybreak = a new day, and a new day symbolises new promises, new opportunities, and the chance to try again. But for my mum on most days daybreak brought her nothing but pain; a pain so arresting that when I would say good morning to her before leaving for work she could barely open her mouth to respond to me.
One of the perks of my job is that I get magazines sent to me at the office for free. That was one of my mum’s favourite things about my job and whenever I got home with my copies of Drum, True Love and Parents she would pounce on them immediately. She always read the magazines in that order as she preferred to start with her least favourite one and end with her most favourite. I remember in June 2014 I was on leave for two weeks but my mum made me go to the office to pick up the magazines because she simply could not wait until I was back at work to read them. Lol. True story. In fact no one but her was allowed to open the magazines and after she died I did not know what to do with them because for years those magazines belonged to my mum and suddenly she was not alive anymore yet the magazines kept coming. To this day I have a stack of unopened magazines in my house that will probably remain unopened for a very long time because even though it is over 1,000 days since my mum died, I still feel like the magazines belong to her.
My mum loved those magazines and as I said she would pounce on them as soon as I brought them home unless she was in pain. When she was in pain the magazines would remain unopened for hours on end. That is how debilitating the pain was; she could not even summon the strength to read a magazine. With time I noticed that if the magazines remained unopened for more than two days my mum would end up admitted in hospital because her inability to read the magazines meant the pain medications she was taking at home were not making an impact. My mum’s copious hospital admissions were emotionally draining for everyone involved, but knowing she would be getting relief from pain medications you cannot get over-the-counter made things marginally easier to bear.
Circa 2014 my mum reached out to her doctor to let her know that on that particular day the pain was so bad she could not take another minute of it. So her doctor wrote her a prescription for morphine that my brother went to retrieve from the hospital as my mum was being held hostage by the pain that day and could not leave the house. When my brother got home with the morphine he dropped it just as soon as he had opened it for my mum and almost all of the morphine spilled onto the carpet. For as long as I live I will never forget the look on my mum’s face when my brother dropped the morphine. A look of utter disgust came to her face even as tears immediately came to her eyes as she registered that my brother had, within minutes, inadvertently given and taken away the thing that would bring her salvation from the pain.
As previously stated neuropathic pain is often described as a shooting or burning pain. My mum would describe her pain as feeling like her legs are on fire, something I found especially cruel seeing as my mum no longer had any use of her legs at all. There were days when the burning sensation was so intense that my mum could not stand even a bedsheet being placed on her. That kind of pain is akin to torture and it should come as a surprise to no one that my mum went through depressive states in the years she lived with chronic pain. According to the Mayo Clinic, pain and depression are closely related. Depression can cause pain — and pain can cause depression. Sometimes pain and depression create a vicious cycle in which pain worsens symptoms of depression, and then the resulting depression worsens feelings of pain.
When treating neuropathic pain anticonvulsant and antidepressant drugs are often the first line of treatment. In cases that are difficult to treat, a pain specialist may use an invasive or implantable device to effectively manage the pain. Anticonvulsants are a diverse group of pharmacological agents used in the treatment of epileptic seizures. Anticonvulsants are also increasingly being used in the treatment of bipolar disorder and borderline personality disorder, since many seem to act as mood stabilizers, and for the treatment of neuropathic pain. Neurontin and Amitriptyline were the respective anticonvulsant and antidepressant drugs my mum took every day. In 2015 the pain specialist at Aga Khan Hospital fitted my mum with a device in her spine to help with pain management but unfortunately my mum never really felt the relief the device was intended to give.
My mum is/was the strongest person I know and when she was not in pain she was extremely optimistic about her battle with cancer. My mum’s personality was luminous and on the days she had no pain neither her terminal illness nor the fact that she was paralysed from the waist down could dampen her spirit. Those were good days where we would laugh, catch up on life and talk about the future – hers, mine and ours.
But when she was in pain my mum could not see past it and all she wanted was for her children to let her go. From time to time she would plead with me, as the firstborn, to let her die. A plea she never made to my younger siblings. I am a firm believer in dialogue so one day I asked her if she really wants to die. Her response was something along the lines that when she is in that debilitating, arresting pain, in that moment yes she wants to die. We then agreed that she would hold on at least until my brother finished his degree in South Africa as he is the lastborn and would not be able to handle her dying when he was so far away.
I have never experienced chronic pain myself but I have experienced it vicariously through my mum who lived with it for years. Seeing your loved one in pain and knowing there is nothing you can do to give them the relief they so desperately crave brings about a feeling of helplessness so profound it can easily overpower you. I hated seeing my mum in pain knowing there was nothing I could do about it, so to anyone reading this who is currently living with chronic pain I am sending you so much love, light and strength. And to anyone reading this whose loved one is grappling with chronic pain I am also sending you so much love, light and strength because I have been there myself and I know first-hand just how that feeling of helplessness can crush you. I may not know you personally but I can promise you that even when it does not feel like it, YOU GOT THIS!!!!!!!!!!!!!