Her son was 15 months old when he was diagnosed to have epilepsy, which would impair his intellectual development. Feeling anxious and helpless, Ah Kee’s mother dared not faced the fact and tried to escape from reality. Thanks to the good care of a group of medical professionals, Ah Kee’s situation has become stable. Although taking care of her son seemed an insurmountable task, Ah Kee’s mother managed to support one another through a group of patients’ family members. They even campaigned to change the Chinese translation of Epilepsy, which had resulted in social discrimination. Since then the situation has been rectified.
Feeling alone and helpless during early stage of rehabilitation
When my son was 15 months old, he was diagnosed to be an epilepsy patient . He suffered from Infantile Spasms Syndrome which would impair his intellectual development. Although the doctor had explained the disease to me thoroughly, I still could not face the fact that my son had epilepsy. I denied to accept the doom. Determined to change the course of my son’s fate and to prove that the doctor’s diagnosis was wrong, time and again I sought the advice of other neurological specialists. But after spending a lot of time and money on the matter, the result was no different. One day, I finally came to realized that I had to reconcile with what the doctor said. It was I who had been denying to accept the very fact all those days. As the doctor pointed out, it was a typical developmental reaction of every parent of epileptic children.
When my son suffered epilepsy in his early days, I thought it was only him being so unfortunate. I felt alone and helpless, not knowing to seek information of the treatment as well as the support from other patients’ family members. Information on epilepsy was scarce and rare 20 years ago. Fortunately, I came across a group of caring and loving medical professionals during the last five years when my son paid uninterrupted regular checks in hospital. Every time I met the doctors, I raised so many questions that enabled me for a better and fully understanding of the disease.
Benefitting from the treatment such as physical therapy, occupational therapy, linguistic therapy and hydrotherapy, my son’s conditions have become stable. I like taking my son to the hospital for weekly treatments. The doctors there have become my spiritual support and the hospital has become my son’s second home.
Looking for Rehabilitation from community
On one occasion, I saw a poster from the Community Rehabilitation Network in the hospital’s notice board which featured activities of epilepsy patients and families. I still remembered my eyes wide-opened because this was the first time I got in touch with such information and knew I was not alone. I was so excited that I finally got what I had been looking for.
My son is now 27 years old and he relapses everyday, that being part of his life. And if in a single day he does not relapse, I will take his seizures are on holiday. If his condition is stable for 2 to 3 days, I will take it as a long vacation, thanks to the doctors’ superb treatment.
The last 27 years during which he grew up with my companion, has not been easy. Ten years ago when I first saw that poster and got acquainted with a group of epilepsy patients and families, we have been supporting one another.
We have a better understanding of the effects of the drugs on those patients and how the disease affects them. For example, the Chinese translation of the name of the disease has resulted in discriminatory comments from other people, even among friends and relatives. Such discriminations will do no good to their social life, works and even their dignity. Only those who suffer from this disease feel that sense of humiliation. The Chinese translation of epilepsy connotes a sense of mentally deranged illness, has a vicious effect on them.
Campaigning to change the Chinese translation of Epilepsy
In May 2008, together with a group of friends from the Hong Kong Epilepsy Association, we went to Xiamen to participate in the 7th Asian Oceanic Regional Conference on Epilepsy. I spoke for the friends from Hong Kong, to express their concern on the misunderstanding of the Chinese translation of the name of epilepsy. Such misunderstanding has resulted in a subtle association with mentally deranged illness, which has adversely impaired the patients’ dignity. By doing so, we hope to raise concern among those neurological professional bodies in the Asian Pacific Region.
With the support of local medical professionals, we finally reached a consensus on the new Chinese name of the disease after many years of painstaking effort. In June 2010, we held a ceremony to officiate the launching of the new Chinese name of which literally means neurological disorder symptom.
The new name has been widely accepted by the community and the mass media. Occasionally, the old name will appear again and it is up to us to correct it. In time, I think we can put the record straight.
Be yourself
I sincerely hope those who suffer epilepsy can stand firm even in times of adversity, to breakthrough the confinements imposed by this disease and to lead a confident life. Be yourself , take a bold step forward and try to do things you want . In doing so, you will find the world different and confidence will grow.
Let us walk hand in hand together and support one another, in this way we will breakthrough the confinements of epilepsy and lead a brand new life.
P.S.
Most of the epilepsy patients are intellectually capable, leading a normal working and social life. Only a small fraction of patients have intellectual impairments.