Five years after being diagnosed with Parkinson’s Disease, I am surprised, delighted, and grateful to be still alive, though life itself, the basic tasks of life, have become five to ten times as hard. 8.5 million sufferers are not incentive enough for Big Pharma companies to invest in research–the potential superprofits are not enough make them invest large sums of money into R&D, especially as lots of drugs will be rendered useless once a permanent cure is found. Still, with the likes of Actor Michael J. Fox creating a Parkinson’s foundation and coming out with their own stories, I keep hoping that a cure will come, and it will be a wondrous thing. On behalf of other writers with Parkinson’s (and also all 8.5 million diagnosed worldwide sufferers of PD, many of whom are ashamed, confused, or not getting the best treatment possible), and to inform those who may have friends or loved ones with it, and who feel intimidated by having to ask or answer these questions, I will mention some of my own peculiar symptoms (no two Parkinson’s patients are exactly the same, which is why it matters so much to meet and perhaps help or get help from the experiences of others):
- One of my bete noires, Bradykinesia is characterized by slow movements, slow , slow thinking, slower talking, slower singing, slower on the toilet (sometimes, 10-15 times slower), slower walking, slower in doing nearly all the things you once took for granted, and were almost mechanical. This is why it has taken so long for me to come out with published books, and though it seems that I could, with high efficiency, bring out 6 books in 6 months, the reality may be vastly different. I have even been slower at coming out with new blogs, though the ideas and the impetus is there—sometimes, I write them and then forget to publish them until too late.
- Balance—lack of physical balance, which means that climbing or descending stairs without banisters is tricky (and thoughtless and inconsiderate on the part of the builders/owners), and that you walk slowly, looking out for the slightest variations in flatness that might cause you to stumble.
- Memory problems: I forget what I was supposed to do, and am late at starting it and finishing it. I forget people’s names sometimes seconds after I have heard them, and sometimes require between four and ten repetitions to fully get it. Often, without a business card, I might forget the persons themselves, and how excited I was at meeting them, and how important they are to me. That of course, if I don’t misplace the business card, which might mean it sinks into one of those holes in my numerous papers, slips between two pages, and I forget about them until and if they accidentally fall out. At other times, I am holding my room keys in my left hand while searching for them all over the desks or bed; or I am looking for the glasses that are on my nose.
- Other memory problems (I have a book about it, that I must remember to publish soon): remembering complicated instructions or explanations. Sometimes even my good friends, wonderful human beings, are angry that I forgot to deliver something that has been explained to me, or that I didn’t do all of what I was supposed to do, or had promised to do, and submit it in one go. This is another problem we face: family members and good friends forget that we have Parkinson’s, and that the slowness, confusion, or disorganization are symptoms of the Parkinson’s, not something we do just to irritate them. The world is sometimes blurry to me, not just because of the Parkinson’s, but because of two other simultaneous conditions: long-term dependence on benzodiazepines (highly addictive anti-anxiety medications), and glaucoma of both eyes.
- Loss of money, and the resulting poverty because of difficulty with working even part time, planning, organizing, and estimating the time required to complete something: and punitive fines and penalties for being sick. An example of the latter: I had to go to America this summer (from Cambodia, where, recently, I have been spending most of my time). But I kept postponing my departure because I hadn’t finished a book I had promised to finish. The book itself developed branches, like banyan trees, and sometimes the branches grew so big some of them bunched up together in a tree of their own. So I had to pay a change fee plus a penalty to Etihad Airlines, one of the richest airlines in the world, owned by some of the richest people in the world, capable of buying football stars for half a billion dollars each. They didn’t care that my delay, slowness, loss of judgment and memory (which caused the above delays) were a disability that I suffered from most of all. I lost nearly $700, or 80% of the price of my ticket, because it happened twice to the same ticket. That airline certainly didn’t need my $700, but took it anyway, from someone whose income was well below the poverty line. Way to go, Emiratis!
- Slowing down of thought, difficulty of thinking things through, of making complicated plans and decisions. This certainly holds true for books, which require Big Picture thinking.
- Sleep disturbances. Inadequate sleep makes you sleep longer, and reduces the time available for writing.
- Trembling fingers and arms: sometimes this is more serious than at others (I haven’t figured out how to predict it), and at such times, I look for help, such as in carrying a tray or a hot cup of coffee, or a tray of food, to my table. One young woman in Phnom Penh graciously offered to hold my hand and take me across a busy road (with no pedestrian crossings for the next few blocks), and it’s the kind of unexpected gesture that will always leave a soft spot in my heart for the kindness of ordinary Cambodians.
So, for the past two years, I have been cheating myself of medically prescribed exercise and physical therapy, because if I didn’t cheat myself, I wouldn’t have the time to write. But such cheating, I fear, might may result in worsening symptoms, and a shorter life, and is, therefore, short-term thinking. Sometimes, I feel I owe a moral obligation to writers who have been my friends, and who have helped me, to read their books (which in many cases I have bought, out of solidarity–how many friends do you have who are writers?). But they wait in line, along with 30 other books or short pieces of mine that deserve my attention, because should something happen to me, it will be buried, or burned, along with me, without a single soul having read it.
As may be obvious from the above (there are 30 other symptoms I haven’t told you about), life is tough, and I drive myself to write because I feel an obligation, because the inspiration has been delivered to me. And in my writings, I have spoken out on behalf of less fortunate people, or those who, unlike Salman Rushdie’s characters, are not privileged persons. And I often write about subjects that were potentially controversial and would make my life harder, thinking that: if I didn’t write this book or express this point of view, no one else would–or might–so I had an inescapable duty to do it. (And sometimes, I write because I wish to share my laughter at the absurdity of the world.)
If any of you wish to encourage me to go on, I have books available not just at this site but also on Amazon, Google Play, Apple, Scribd ,and so on. Please understand that I don’t expect you to read them, that there’s so much fine writing around that it would be fair to say that most people who buy my books may not complete them. But I have done this for other people, for friends who are far more well off than I am, and only out of solidarity and friendship: because I would expect or hope that others do the same.
Meanwhile, I am so thankful for the life I have been given so far (71 years, an age I hadn’t expected to reach even a few years back), for the occasional gifts of love or laughter, and for the chance to write that which, in my heart, I feel compelled to share. Some of my friends are dead (two lost to Covid-19), though not dead in my heart, and I consider each hour and day of life as a gift, and a grace period given to me so that I complete and publish my many books in progress.
Happy New Year, friends.