In talking to other stroke patients, one thing that was particularly remarkable to me was the very different reactions people had to a disability. I spoke to my occupational therapist about it, and he remarked that disability is never a purely physical condition, but is a combination of actual physical disability and the person’s psychological response to the disability.
For me, I lost almost all sensory-motor function on the left half of my body. It was so bad I had trouble just sitting up straight after my surgery, and standing up was out of the question.
To some extent, functions can recover as the brain recruits non-damaged areas to replace lost functions through a process called neuro-plasticity, but that process has its limits, and there are early indicators of the possible extent of recovery.
About 2 months after my stroke, the senior consultant in charge of my rehabilitation team at the community hospital held my left hand as he gave me the bad news.
“You have basically a 0% chance of recovering dexterity in your left hand,” he said, solemnly.
I didn’t know how to respond, so I just said, “Ok, loh.” [For those who aren’t local, “loh” and other words like “lah and “leh” are modal particles in Singaporean slang–meaningless words in themselves, but which flavour the spoken sentence and highlight the mood of the speaker. In this case, “loh” indicated resigned acceptance.]
“‘Ok, loh’?” he asked. “That’s all you have to say?”
“What do you expect me to do? Cry?”
In reality though, the truth only sank in slowly over the next few months as I came to accept that there were certain things I would never be able to do again, like my favourite pastime of riding my motorcycle.
In coping psychologically with the physical disability, I was fortunate to have inherited a “keep calm and carry on” attitude from my father, which meant I didn’t spend too much time agonizing over what I couldn’t do and the physical functions I had lost, and more time figuring out how I could do as much as I used to be able to do.
My physical disabilities
My actual physical physical disabilities (and current extent of recovery, one year later) are:
- Loss of use of left leg (currently mostly community ambulatory, albeit with a walking stick).
- Loss of use of left hand (currently able to perform gross movements using the shoulder and elbow, but no real useful functions because I am unable to open my fingers; only clench them).
- Weakness in left trunk muscles (currently still slouching more than before, but otherwise able to maintain an upright posture).
- Slack facial muscles on the left half (currently still unable to perform some facial expressions, although I’ve stopped dribbling when I eat–what a relief).
- Extensive loss of sensation (touch, temperature), proprioception, and kinesthesia (often confused with proprioception, but is more accurately the sense of motion). I’m lucky not to have lost the sense that my left limbs are my own, but the sense of connection and ownership is definitely weaker than for the unaffected right side (currently, some (still very vague) sensation is starting to recover from proximal (closer to the body’s centre line) to distal (further away)).
I’d like to list down a few coping strategies that were particularly helpful for me that might prove helpful to anyone else in a similar situation:
- Accept that a terrible thing happened, whatever the cause. Speak to whoever you believe in and then accept that you have to move on. For me, I wrote in my second post “Why Bad Things Happen to Good People” that I was an atheist, so my coping strategy of accepting it as a case of a bad roll of universal dice might not be for everyone.
- Nevertheless, don’t internalize other people’s perception of yourself. If other people look down on you as a result of your disability, it is a reflection of them, not you. When I was studying in the States, an American-born Chinese asked me about racism and if I would be offended if someone called me a “chink”. I told her no, because that just shows the person who uttered the phrase to be a racist asshole, and I would pity him rather than get angry. The same applies here. You’re going to run into some inconsiderate people, but you shouldn’t let that affect how you feel about yourself.
- Be prepared to fight for every inch of recovery, but believe that things will get better. Dealing with disability is tough, and trying to recover whatever function you can is even tougher. Neuro-plasticity is helped by exercise. In the days after I was first discharged home, it took me half an hour to limp the hundred metres from one apartment block in my estate to the next, and being able to ever walk normally again seemed hopeless. I kept trying to walk and also practise climbing the stairs, and within the month I was climbing 25 floors’ of stairs up and then down again. Fortunately, having survived being in a Guards unit while in NS, I had a pretty high threshold for physical suffering. So while the exercise was exhausting, I kept telling myself that at least it wasn’t as bad as during NS.
- Be nice to your caregivers and your therapists. A bit of politeness makes it easier for people to go that extra bit for you, and however bad it is for you, recognize that the people around you can suffer too.
- Participate actively in your own therapy. Nobody knows what is most important to you like yourself. If your therapy isn’t targeting something that you want think is useful, speak up. Each person’s lifestyle is so different that it’s impossible for therapists to be able to design an effective therapy plan without your input. People tend to over-estimate how much others can read their minds. Make sure this isn’t a mistake you make. During my own therapy sessions, I usually give a running commentary on which movements I find difficult, how I’m feeling mentally and physically, and this has been very helpful to my therapists in helping me target the things I want to do.
- If you’re lucky enough to still have a job, talk to your supervisors honestly about the changes to your workplace and workload that you need, but also be mindful that he/she has to be fair to other employees as well.