This blog post is not about writing

If you are a regular reader of my blog, you know all my posts are about writing or the business of freelance writing. Today, I am taking a break from that topic to write about something more personal.

I have relapsing-remitting multiple sclerosis (MS). Right now, I am in a relapsing phase. It feels like an unrelenting recurrence. Recurrences usually last a year or so, with minor flare ups between major recurrences. They all seem to manifest themselves differently.

According to the Web, MS is a long-lasting disease that can affect your brain, spinal cord, and the optic nerves in your eyes. It can cause problems with vision, balance, muscle control, and other basic body functions. The effects are often different for everyone who has the disease.

My current  recurrence is manifesting itself with constant (and by that I mean non-stop, unrelenting) headaches,  wobbly balance and weakfish legs from the knees down. The only time I am symptom-free is when I am asleep. Fact is, I look forward to sleep and dread waking up.

Having said that, let’s look at the positives.

I am writing this. I can walk my dog.  I teach several online writing course for continuing education students at the University of Toronto. I can sit and read or watch TV. So although my symptoms are unrelenting, they are not debilitating. For that I am thankful. In fact, a neurologist once said to me that if he had to have MS he’d want my kind. So yes, there are those with MS (and other chronic diseases) that are worse off.

Something you learn early on, when you have a chronic disease, however, is that you don’t compare conditions. What you have is not the same as what others have. But it is what you have and it is what you have to deal with.

I try to keep a positive attitude and outlook . There are days when that is difficult. But you take a deep breath, acknowledge there is nothing that you can do, look at the positives, and let the low moments pass. This too shall pass.

Over the decades that I have had MS, my recurrences have manifested themselves differently. The first one, that I know of, was a strange tingling that hit pretty much every part of my body, along with bouts of fatigue. I recall falling asleep (more like passing out) mid-day and waking up as tired as when I passed out. Hits (or exacerbations, as they are called) have also hit my eyes–I had a dark spot in one eye; I could make your face disappear, or stop signs. And then there was the hallo effect–all lights had a strange glow around them.

The worse exacerbation, though, was the one that hit my taste. I didn’t lose my taste. That would have been a blessing. Instead, everything tasted like crap.(Okay, I’ve never eaten crap so I can’t verify that analogy, but  you get the picture.) Even water tasted crappy–like drinking musty swamp water. What made it worse is that my wife is an amazingly wonderful cook. I hated having her delicious meals rejected by my tongue! There are days I think I’d rather have this unrelenting exacerbation than the crappy taste one. Not many days, but there are days when I am chowing down to a delicious meal and I think, ‘At least I can enjoy the taste!’

I could write more about my disease, but I think that is it for today. I guess I just had to get it, what is happening, off my chest before I could move on with my day… Thanks for listening.

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9 thoughts on “This blog post is not about writing

  1. Thanks for sharing this Paul. I personally find it helps to write things out and share them with others and get it ‘off your chest.’ More than that, it makes you strong and others see you as strong when you tell your story. Many people find it hard to do this. I admire those, like you, who can. I think it’s something everyone can learn from and there’s always a personal connection of some kind with another person’s struggles. I hope writing it out gives you some relief.

  2. You are not only a gifted writer, mentor and coach, but you are also a positive and courageous human being. Thank you for sharing, Paul. I am a praying man, so I’ll keep you in my prayers.

  3. Paul, I admire your positive attitude and outlook. This year I was diagnosed with prostate cancer; my wife is undergoing chemo for breast cancer; and yesterday we buried a favourite brother-in-law. It’s easy to get discouraged but we must play the cards we’re dealt. The alternative is to fold ’em and, like you, I’m not ready to walk away. Too many more stories to write! Thank you for your uplifting viewpoint.

  4. I remember you mentioning MS at least a dozen years ago, when I first joined PWAC, but I assumed either I had misheard or you had been misdiagnosed because you alway coped so well. Thank you for being so generous with your time and expertise over the years, Paul, even on the days you didn’t feel like getting out of bed.

  5. I learned so much taking your online writing courses. My goal was to enhance my skills. Mission accomplished. One of the enhancements I didn’t expect to gain was organizational skills. I always marvelled at how carefully you planned and followed the plan. Little did I know you were suffering with MS. Your achievements become even more impressive.

  6. Gee, thanks for sharing Paul. Haven’t seen you for some time, and can only imagine how hard this must be to live with. I admire how you’re handling it – taking the good with bad and it sounds like your wife is very supportive. Positive mindset is the best way to cope with this for sure. I too have a chronic condition – but not as debilitating – and learned that a long time ago. It definitely makes a big difference, and I hope you maintain that mindset! Any writing you can do is greatly appreciated, and we all know how therapeutic it can be – don’t stop!

  7. Paul, I’ve enjoyed the resources you provide here on your website, but felt compelled to respond when I saw that you have MS. My mom was diagnosed about 25 years ago so I’ve seen the struggles first hand and of course the “but you don’t look sick” that you often get. Keep up the good fight. I’m glad to hear that you have a supportive partner and that you’ve been able to craft the kind of life that works for you when you’re well and when you’re not.

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