The Summer of My Discontent



So I know we’re barely halfway through August, but I’m calling it – 2017 HAS SUCKED! Since being diagnosed with lupus back in 2012, most would say I’ve gotten off lucky, a minor “flare” here and there but nothing significant. My luck finally ran out late last year when random and recurring infections became more commonplace and virulent. 2017 has been pretty much a nonstop wave of persistent pain, puking, and panic…and there’s still 4.5 months left to go!

To be fair, I have been lucky because, while it’s done nothing to minimize the effects of the illness, I’ve learned a lot about myself and the people in my life. Specifically, the ones who pay lip service to “always being there” for you versus the ones who really are. Sometimes this knowledge comes with sadness and disappointment; sometimes with unexpected surprise and relief; sometimes with no surprise at all, just a wonderful affirmation. 2017 is the year I truly came to understand the saying that, as we get older, our circle grows smaller…and that’s okay!

I understand I shouldn’t “judge” or take it personally, people often say things with well-meaning intention that they ultimately can’t meet, I realize that, I do. But a lot of people are actually just saying what they think you want to hear because they rely on your help and hospitality frequently. Others love to love you when you’re on top of your game, but the minute you’re no longer the life of the party…or capable of making it to the party…or capable of even getting out of bed for that matter, their lives become too busy, too hectic, too dramatic to fit you in. But I don’t want this post to be about people who have disappointed me. I want to, as I now feel like I’ve really turned a corner in this latest health battle (FINGERS CROSSED, KNOCK WOOD), use it as an opportunity to thank those who have done things, big and small, over the last few months to support and sustain me.

I’ve got networks of friends all over the world, but none stronger than here in Canada where members of my “Flip Flop Family” — Shane Nagel, Ed Velasquez, Jessica Nagel- Furtado, Alastair Lillico and Jade Saab — have been there with me every step of the way. From grocery shopping to pet sitting to sending a grown man into the feminine hygiene section of the pharmacy and more, I couldn’t possibly make it through any of this without all of you.

To friends and clients — dozens, hundreds, thousands of miles away — who take the time to regularly check in, send me jokes, and healing vibes – Vandal Rose, Michael Greer, Suzanne Collier, Carolyn Wendy Cusner, Lou Diamond, Susan Skrypka-Bassett, Maria Do Ceu Pereira, Marie Piccone – you keep me smiling, laughing and focused when I need it most.

I firmly believe the family you claim is often better than the family you came with – Stuart McAllister, Marilyn McAllister-Munn, Marg Macmillan – you are my constant rocks and I love you all.

Sometimes though, even with the strongest network of support, bad things still happen. For me, that’s meant finding that taking one step forward in recovery, can often result in then taking two steps back. It’s been scary and depressing, and it reached another crescendo this past Wednesday, leaving me no recourse but to call in “the Big Guns”. As the saying goes, “A friend will help you move, a Best Friend will help you move a body!” When I finally caved into weakness and fear over my latest setback, I called my best friend, Jillian Stelling. Jillian is a self-employed bookkeeper with a busy schedule, family commitments of her own; oh, and she lives over 200 miles away from me. When I texted her in excruciating pain that afternoon, she didn’t blink or hesitate. She just texted back that she’d be on her way within the hour, and then she drove like a bat out of hell to get here.

But the very best part of this story, the part that those of you with your own best friends will understand immediately, is that best friends rarely ask, “how can I help?” Instead, they step back, assess the situation like an army field general, and then they take control. Within the first few hours of her arrival, Jill decided that my pain management regimen needed to change and all new products appeared; she also decided that the cat’s eating habits needed to change in order for Isabella to help me take care of her more easily. The next day she started on my eating habits. I estimate that throughout this summer there have been at least 25 to 30 days where I’ve not been able to eat any solid food (most recently the 5 days before she arrived) and could barely hold down liquids. She didn’t ask me to eat, she simply started bringing in foods she knows I like and handed them to me: sushi (yes, sushi!), croissants, even real bacon…mmm. She poo-pooed the doctor’s instructions to drink Gatorade and had me increase my intake of water and orange juice instead. She taught me a recipe for a super quick and simple chicken soup that sits simmering on the stove all day until the aroma would tempt a fasting monk, and under her watchful eye I reintroduced caffeine to my body…I had no idea how much I missed Starbucks!

And for the last four days she’s ridden the roller coaster with me, physically and emotionally; running endless errands, enduring my crappy tv watching habits (including EastEnders and a Say Yes to the Dress marathon), dealing with the constant turning on, then off, than back on of the air conditioning, silently cleaning away ugly body fluids, barely getting any sleep because of my ‘cough from hell’, and having to haul my mortified, wet, naked ass from the shower and put me back to bed to prevent me from crumbling to the ground. We’ve also talked openly about subjects that often make even the staunchest supporter uncomfortable: financial planning, power of attorney, living wills…funeral arrangements. Confronting best and worst case scenarios with your best friend isn’t unnerving or depressing; it’s actually immensely soothing and uplifting. Knowing that, in the event that you can’t speak for yourself, there is someone who knows exactly what you need and want, and who will make damn sure it happens.

That may seem a bit of a morbid note to end on, but I don’t think so. 7.5 months into 2017…and despite how much it’s sucked…I’ve learned a lot about myself and others (both good & bad). I’ve learned I’m stronger and have more of a will to survive than I sometimes give myself credit for; I don’t have all the answers, and that’s okay; I know more about the PR business every year than the one before (if you’re not always learning, then you’re falling out of touch); people are not always who they appear to be, so don’t over or under estimate anyone. And these two, most important, last things. Choose your best friend carefully, and always nurture that relationship. You want someone who shares your sensitivity and intuition, but you also want someone who shares some of your darker traits. In my case, the ability to be ruthless, and the ability to make certain decisions with detached, unemotional practicality, when necessary. And finally, don’t worry about how big or small your circle of friends is; popularity is a contest, and a very poor metric to measure personal success by. It’s quality that counts.




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