Fear is a constant in life. Some would even say that fear makes us work harder and go further. However, would we still consider fear as a blessing in disguise if we are constantly in fear of falling? Falling in motivational phrases often mean failing. Having to live life in the constant fear of crashing to the ground, literally, is no easy task.
Chalindha Kodagoda Peiris knows all too well how such a life is. He explained how he is in constant fear of falling, whether he is going up or down stairs or is walking on a surface that isn’t totally even. Pavements too are challenging as they are not even and ramps which are boasted of by buildings that grab on to the label ‘disability friendly’ are of no use if there are no railings one can hold on to.
With the use of crutches, Chalindha is able to go about his day-to-day activities. However, it isn’t always easy for him, and he says he has suffered two major falls, one which resulted in a broken leg and happened when he was still schooling and the other resulted in a broken elbow and occurred two years ago.
Chalindha went on to talk about his life, especially with Charcot-Marie-Tooth (CMT). Chalindha was diagnosed in his early teens and prior to being diagnosed of CMT, Chalindha was believed to have other disorders. It was once a sample of his genes was sent abroad that an accurate diagnosis was made.
Named after the individuals who classically described it, CMT ‘is a genetically and clinically heterogeneous group of inherited disorders of the peripheral nervous system characterized by progressive loss of muscle tissue and touch sensation across various parts of the body’ (Wikipedia). Muscle weakness is experienced due to CMT and it mostly affects the hands and legs.
Following the completion of a Bachelor of Science in Graphic Computing from the Minnesota State University and a year of employment in the United States, Chalindha returned to Sri Lanka. He spoke about the difficulties he faces, especially since returning to Sri Lanka, explaining that the diagnosis is uneven in Sri Lanka and that there was only one doctor who specialized in CMT. When asked about the difficulties of living with CMT, Chalindha spoke about a lack of balance and the inability to control the limbs. “It varies from person to person, but for me, it mostly affects my legs,” Chalindha said. Thus climbing and walking on uneven surfaces is extremely difficult for him.
Chalindha was fortunate to have lived a relatively independent life in the States. He could go for a drive whenever he wished or easily use public transport. He also used a power chair which allowed him to travel on pavements without an issue. However, he faces many problems in Sri Lanka, where his application for a driver’s license has been rejected and he cannot use public transport as it isn’t accessible to him. This means he also has limited access to public places.
The conditions in his workplace, which reflects the condition in most places of work in Sri Lanka, also makes simple things like having meals in the lunchroom or using the washroom more difficult than they should be. He admitted to reducing his intake of liquids so as to reduce the number of times he uses the washroom while at work. When it comes to lunch, he has his meals at his desk, which means he’s constantly worried about spilling his food. This obviously has an effect on him and Chalindha is emotionally stressed.
In addition to the stress he is under, Chalindha is also constantly battling fear and limited social interactions and the inability to travel independently also affects him greatly. He believes that the inaccessible environment in Sri Lanka can have an adverse effect on one’s mental health and could lead to depression and other disorders. However, Chalindha finds that doctors often focus on the physical condition of a person and thus their mental health is often neglected.
Due to the muscle deterioration that occurs, Chalindha used to work out at the gym to strengthen his muscles. However, he has noticed that most gyms in Sri Lanka are not on the ground floor and thus cannot be accessed easily.
However, Chalindha said that Sri Lanka has changed and that many commercial buildings now have reserved parking spaces, elevators and ramps for the handicapped. There needs to be an increase in awareness, Chalindha said, explaining that even the management of such companies need to be aware that a ramp will be of no use if there is no railing to hold on to. “A wall isn’t enough, and there needs to be something, like a railing, that we can hold on to,” Chalindha said.
He spoke further about awareness and said that people are helpful, but they don’t know the right way to help. “I see what’s best for me and what isn’t,” Chalindha said, adding that even though his friends say they will help him climb steps, for instance, he doesn’t always feel he can. Similarly, a pull from the arm doesn’t help but a push would make it easier for Chalindha to climb stairs.
In most instances, the willingness to help would have a negative effect on the one being helped. It is thus important to be aware of the medical conditions of people and how they can be helped. It is also important to raise awareness of CMT itself, for Chalindha may not be the only one who wasn’t correctly diagnosed until they reached their teens and increased awareness would do immense good to people and society in general.