Working with a disability; my story of directing while on dialysis

I’ve finally called wrap. It’s the end of a laborious, technical shoot for a kids toy where, by all accounts, I’ve needed to act like a child for the past twelve hours in order to successfully direct kids. 

My ankles are swollen, my breathing is shallow, and when I get home I collapse into the couch.

But I’m more exhausted than the normal level at load out. We were out in the sun for the full day and there’s a weight on my chest from drinking too many liquids on set. My ankles are swollen, my breathing is shallow, and when I get home I collapse into the couch, unable to complete the normal life chores we typically do at the end of a work day. 

All of this is because I’m working while on dialysis.

Above: Kelemen's dialysis treatment happens times a week for four hours a day. It's "like having a part time job". 

I’ve had kidney issues my whole life but I’ve never really considered it a problem, or have let it get in the way of doing things I love. I’m the recipient of three successful living donor kidney transplants, at the ages of six, 16, and 26, and therefore have avoided dialysis my entire life. But a recent bout with cancer left my last transplanted kidney dead from chemo, and this country has a restriction on organ transplants post-cancer diagnosis for at least two years. So... here we are. 

A recent bout with cancer left my last transplanted kidney dead from chemo.

For those of you who don’t know, dialysis is quite literally doing the job of your kidney; removing liquid from your blood (that would normally be turned into urine) while also filtering out the toxins. It happens three times a week for four hours a day; a part time job. 

So, when I’m standing on set, wanting to reach for that cold brew around 2pm, I must resist. Too many liquids means your body can quickly get fluid overloaded. Add to that the decreased energy levels and slight brain fog, and directing has double the stress levels. The other added twist is that you might not consider dialysis a disability but it is, in fact, classified as such, though on plenty of non-dialysis days, I look and act like there’s nothing wrong.

Above: Kelemen [left] on location.

I certainly consider myself lucky as I’ve had fantastic experiences  – with clients, agencies and production people – while working with a disability. When I start working with a new group of creatives I explain my situation right away since, more likely than not, I’ll be conducting meetings while hooked up to the dialysis machine (and I can honestly say taking production meetings is the best distraction I can ask for). 

I also ask for some level of flexibility, and here’s where I’ve been extremely lucky. For example, I had one client delay their ads for an entire quarter while I dealt with chemo in order to work with me when I was in stronger shape. Because dialysis must occur every other day, minus the weekend, another client willingly split up our three day shoot into a longer process to help accommodate my dialysis schedule. And while there are dialysis facilities all over the country, I’ve had clients delay shoots by a week or two to give me leeway in scheduling dialysis at another city’s centre.

I’ve heard a wide range of stories of clients being flexible to being extremely difficult. 

I’ve also seen the negative side of things too, however. I remember one client offering no understanding when my fourth bout with chemo left me in a coma for days. I woke up to a flurry of emails wondering where their edit was, despite knowing my circumstances. I’ve also had agency people make up random excuses why I couldn’t appear on video, because they didn’t want to ‘freak their clients out’ with seeing their director tethered to a dialysis chair during a meeting. 

In talking to other production people who work with disabilities, I’ve heard a wide range of stories of clients being flexible to being extremely difficult.