Setbacks need not stop us from making the most of what life has to offer.
I CAME to know Serene Low when I was searching for an epilepsy “buddy” back in 2008. Trying to look for someone with epilepsy wasn’t easy back then, because people tend to shy away from talking about their condition.
I was thrilled to stumble across Serene’s blog (epilepsylegacy.blog spot.com). Serene and I became friends. We shared notes on our experiences with epilepsy. Serene had her first epileptic attack as a child, following a bout of high fever. After that, she experienced epileptic seizures whenever she had fever. Fortunately, the seizures stopped after she started schooling.
When she was 18, Serene experienced her first grand mal seizure while swimming. She nearly drowned. Fortunately, Serene was rescued and lives to share her experiences with others.
Serene has had more than a hundred seizures. I have always wondered how Serene could be back to her old self after each seizure, while I was left disabled after only one attack.
In 2001, I had a grand mal seizure which was characterised by loss of consciousness and violent muscle contractions. The seizure took a toll on me and I suffered paralysis on the right side of my body.
The grand mal seizure was triggered by a lesion on the brain following an earlier operation to remove a brain tumour.
Epilepsy is a neurological condition which affects the brain and causes repeated seizures, also known as fits.
According to medical research, epilepsy may be caused by various factors such as head injury, trauma, brain tumour, infections such as meningitis, stroke and high fever. However, in many cases the cause of seizure remains unknown.
Simply put, epilepsy is due to a sudden surge of electrical signalling in the brain. An epileptic seizure occurs when these energy pulses come much more rapidly – as many as 500 per second – over a short time due to an electrical abnormality in the brain. This brief electrical spike can happen in just a small area of the brain, or it can affect the whole brain. Depending on the part of the brain that is affected, the surge in electrical energy can cause changes in a person’s sensation.
Normally it starts with tiny, imperceptible tremors which lead to violent convulsions in certain parts of the body or the whole body. It may also change the person’s state of consciousness.
Epilepsy is diagnosed when there is a tendency to have recurrent seizures. Seizures vary in severity and frequency.
While some may experience no more than two or three seizures during their lifetime, others may have several seizures in one day. There are various conditions such as flashes of light, smoking, alcohol, fatigue and lack of sleep, which trigger seizures. Seizures can occur seemingly for no reason at all.
The most common types of seizures are:
> Generalised seizure
This generalised tonic-clonic seizure, also called a grand mal seizure, begins with stiffening of the limbs followed by jerking of the limbs and face.
> Partial seizures
In partial seizures, the electrical disturbance affects only a limited area of the brain. Partial seizures are sub-divided into simple partial seizures in which consciousness is retained, and complex partial seizures in which consciousness is impaired or lost. Partial seizures can progress to a generalised seizure.
> Status epilepticus
This is a life-threatening condition in which a person has prolonged seizures or does not fully regain consciousness between seizures.
Some doctors define status epilepticus as a seizure that lasts for more than five minutes. Without emergency attention, this condition can cause permanent brain damage.
Epileptic seizures cannot be stopped and will end naturally. Sometimes the person having the seizure goes into a kind of altered state for a short period of time. The person may looked dazed or stare into space. In such a case, it is enough to stay by the person and wait for the seizure to pass.
Although it is traumatic to witness an epileptic seizure, you cannot stop a seizure, so do not try. Do not put anything in the person’s mouth, not even medicine. Although the edges of the tongue could be bitten, it is a myth that part of the tongue could be bitten off and the person with epilepsy will bleed to death.
Should you attempt to insert anything inside the person’s mouth, you may cause injuries to the teeth or mouth and may even cause choking.
Epileptic seizures can be very dangerous to the person who is having a seizure. Thus, a person with epilepsy should not swim alone, operate a car or any motorised vehicles for whatever purpose, including sports and recreational activities. This is because the unpredictability of uncontrolled seizures may pose serious consequences, should a seizure occur at the wrong time.
With proper medication, Serene’s epilepsy is well-controlled. However, Serene was diagnosed with MCTD (Mixed Connective Tissue Disease) in 2012. MCTD is an autoimmune disease in which the body’s immune system attacks itself. MCTD commonly causes joint pain and swelling, malaise and muscle inflammation.
These symptoms cause Serene much difficulty and pain in sitting, walking, standing and lying down. But the gritty lady is taking everything in her stride. She finds therapy in art and gardening.
These actitivities help to relax her body, mind and soul. Besides, gardening provides her with a natural dose of much needed Vitamin D to relieve some of the symptoms.
Serene is passionate about raising awareness of epilepsy. Her work as an activist has helped her to stay connected with fellow activists, caregivers and people living with epilepsy.
Indeed, Serene has been a source of great encouragement to me and her tenacity has inspired me to keep on going when the going gets tough.