Wheelchair Users – What Price Independence?

Wheelchairs are like shoes. One size does not fit all. A customised chair makes a lot of difference to the person using it. My first made-to-measure aluminium chair was a folding Japanese-made Max Pleasure Synergy that costs RM5,700 in 2007. I enjoyed a great deal of independence from it. The small footprint made it very maneuvreable. My posture improved tremendously; I was no longer slouching. For the first time in two decades, I actually looked good in a wheelchair.

Unfortunately, the crossbrace fractured after just three years of moderate use. The crossbrace is the X-shaped mechanism that allows the chair to be folded. I have also had the same issue with the crossbraces of two other steel wheelchairs that I used previously. Both were standard off-the-shelf wheelchairs. They were heavy, difficult to push and fitted me badly.

A custom-made wheelchair takes many aspects of the user’s body and needs into account. The width, depth and height of seat from floor all make a difference; so are the sizes of the rear wheels and front casters. One can choose either a folding or rigid chair. A folding chair takes up less space when folded and is easy to store in the car boot. It is also heavier because of the crossbrace. The rigid chair is lighter because it does not have a crossbrace. The rigid wheelchair has less flex of the frame thereby translating to more energy efficient propulsion.

The current wheelchair that I am using is the Tilite ZRA Series 2. This is a rigid wheelchair with its main frame constructed from aerospace-grade titanium tubes. Titanium has better strength-to-weight ratio compared to other materials used for making wheelchairs. It also does not rust and corrode. That makes it durable, an important factor for something that I am totally dependent on for my mobility.

This wheelchair is also twice as expensive. The costliest part is the titanium frame, followed by the rear wheels, shipping and then the cushion. Friends, non-disabled people and wheelchair users as well, asked me why I was willing to cough up so much for a few titanium tubes on wheels when I could have bought another aluminium chair for only half of what I paid or the Tilite ZRA.

In getting a wheelchair, especially for long-term users, the decision cannot be based solely on cost comparison alone. There are other factors to consider like durability and functionality of the wheelchair. The most important factor to consider, however, is the implication from pushing a heavy wheelchair ten or twenty years down the road. The repetitive actions of propelling the wheelchair has been proven to wear out the shoulders in the long run.

An injured shoulder will rob me of my mobility and independence. Should that happen, I may have to depend on someone to help me with my activites of daily living for a period of time pre and post-surgery. The question is do I scrimp on cheaper wheelchairs now and suffer the consequences in the later years or do I take preventive measures now to preserve whatever functions I still have for as long as possible?

For me, the answer is simple: An ounce of prevention is better than a pound of cure. The RM13,000 I paid for the Tilite ZRA Series 2 and cushion is a necessary expenditure albeit a steep one. It is justifiable nonetheless. I am already living with a host of spinal cord injury-related health issues, many I could not have prevented even if I had wanted to. My shoulders I can. This wheelchair is the gift to myself for sustaining a better quality of life in the long term. In that sense, it is worth every sen I paid for it.

Killing Weather

I need to move to a country with temperate weather. Here in Malaysia, there are months of hot and humid days that make me extremely uncomfortable. Today is one of them. 35C with 80% humidity is simply too much to bear for my body. The poor thermoregulation is caused by spinal cord injury.

Throughout the day, I have been splashing myself with water and then sit in front of the stand fan blowing at full blast. When the water on my skin dries off, I repeat the entire process again. I can turn on the air-conditioner in the bedroom and hide in there until late evening but I do not want to be too dependent on it.

There are days that I need to get out from the house. Should I become too dependent on the comfort of the air-conditioner, it will be difficult for my body to adapt to the sudden and extreme change when I am out and about.

I do not remember suffering like this in the first decade after the injury. Has the temperature gone up by that much since? There used to be a few places in Penang where the air was chilly even in hot weather. The Penang Botanical Gardens was one of them. Sadly, that ambience is no longer there the last time I went.

I dream of living a place with 20C and low humidity throughout the year, and where nature is still unspoilt and the air fresh as can be. That is my kind of paradise. Now, please excuse me while I go splash myself with water again.

Heat Wave

This must be the hottest season ever. The heat during Chinese New Year was scorching. The sky was blue, almost devoid of clouds. I could almost hear my skin crackle whenever I got out from the car in Ipoh. The heat in the afternoons are now being replaced by thunderstorms in the evenings for the past week or so. That did little to bring respite to the discomfort I have been feeling. I am most unproductive during times like this.