I sometimes envy people with cancer.
Now, before your granny knickers get in a knot at the atrocity of such a statement, hear me out: I don't actually envy people with cancer. That would be ridiculous. What I do envy is the seemingly extensive and apparently functional support systems in place to help people dealing with such an illness.
Here's my confession: I have felt lonely in my disease.
Kidney disease, although increasingly common (one in four Canadians live with diabetes*), is not, in my experience, a well-supported disease. What I mean by 'well-supported' is the availability and function of available support groups.
I want a support group. I want one that cheers me on, that reminds me that I'm not alone in this. I want kidney comrades.
Approximately ten years ago, when I was first had returned to a life of dialysis, Sean and I bravely went to one evening of the MB Kidney Foundation peritoneal dialysis support group. It was awful.
It was horribly wonderfully amazingly awful: we arrived a bit late, and the door to the room was closed. We entered, only to encounter a gaggle of sad seniors sitting at tables in a large U formation. The silence was unnerving and no one was smiling.
No, strike that. No one was smiling except the social worker and the clown. Yes, clown. And indeed, there was some noise: the scratchy sounds of said clown making balloon animals.
These colourful inflated animals cluttered the tables. They lay on their sides, dead-like in front of nearly each senior.
And that's when the social worker suggested that we go around the room, taking a turn to introduce ourselves and say something personal about who we were.
It didn't go well. One of the first elderly ladies to talk - I think her name was actually Beatrice - quietly introduced herself and then proceeded to start whimpering because she lived alone and couldn't break down the Baxter boxes ** the dialysis solution came in . She tearfully confessed to having empty but unbroken-down boxes filling up every room in her house. By the end, she was tearful, hands covering her face.
Like many of us in the room, I am sure hearts broke at her grief. I know mine did.
But in her honesty, a breath of vulnerability entered the room and it felt good. Even the scratching of the clown making balloon animals ceased. The social worker, however, interrupted Beatrice's crying, and simply stated, now Beatrice, this is not the time for this.
(My thought at the time: if not now, if not here, when? Where? AHHHH!)
Beatrice dutifully hung her head, stopped crying and we continued on with introductions.
After introductions, the meeting fiasco continued, as we were herded into another room for snacks. It was all so humiliating, as if we had entered kindergarten again, it was snack time and we thus required assistance moving from one room to another. I half expected someone to mention nap time or colouring would be next.
In the snack room, we were met by a middle aged woman dressed as an Alps-loving Heidi, two blonde braids hanging at her sides. As if that was not a shock enough, she then proceeded to yodel for us. To a tape, as in a cassette.
At many points throughout the evening, I was unsure of whether to laugh or cry. This was one of those times.
I can't tell you what happened after fake-Heidi sang. I don't know what else occurred after that because, for the umpteenth time that night, Sean and I made wide-eyed, holy-crap-what-is-this-eye-contact. Wordlessly, we left soon afterwards.
We decided never to return.
Here are my thoughts: The problem with much of the medical system is that it is operated by those not in need of its services. There may be a desire and educated ability to help, for which I have gratefully benefited. But there exists a crucial gap. There exists a gap between the patient requiring the services (such as support group) and, generally speaking, those able and willing to supply such a service.
So yes, to clarify the beginning statement: I am envious of the support available to those struggling to live with other illnesses. There is a shared commonality between people who live with and through familiar disease. I would like kidney comrades.
*according to the Canadian Diabetes Association. In case you are unaware, diabetes can sometimes cause kidney failure.
**Peritoneal dialysis solution comes in about 2ft x 2ft cardboard boxes, and usually about 30 boxes arrive at a time. These shipments occur once a month. It adds up to a lot of boxes. Poor Beatrice.