This week I’m interviewing the husband of a Spoonie. Ken McKim has become an activist because of his wife’s health issues. Recently, I shared his video on the Slow Death of Compassion for the Chronically Ill. Since then he’s expanded his activism, set up a blog, and created a number of new videos. Ken is 44 and lives in Nevada with this wife, Corina.
How did you meet your wife?
I was up on stage singing and playing guitar at an open mic night; Corina saw me, and then proceeded to stalk me! Seriously though, we were friends for a long time and dated lots of other people before we got together.
How long have you been together?
We’ve been married 10 years this October.
Was she already sick at the time?
She wasn’t sick when we met, her symptoms didn’t start showing until about a year after we got married.
What was your initial impression of her illness?
I was horrified on her behalf. Within a few months she was in so much pain she couldn’t eat. She had to quit going to school at night, which made her really depressed, as you might expect. In the early days of the illness, before we found a good pain management group and an effective combination of pain medications, she spent most nights screaming in pain on the couch.
How has his illness impacted your relationship?
Let’s see. We don’t really go out and socialize. When we first met, we were gym addicts. We’d throw big parties, drink wine and beer, go watch roller derby matches. She used to love rollerskating. Then the Crohn’s hit; then she had the DVT (deep pain thrombosis) in her leg (she’s been on Warfarin ever since); then came the trial and error with all kinds of medications, each with their own side-effects. Fortunately for me, I really did marry my best friend, and I truly love spending time with her, so just staying home together is fun for us. Interesting footnote, our roles were reversed briefly when she had to take care of me during my cluster headaches in 2006.
Have/Did you ever consider walking away because of her illness?
I sometimes feel overwhelmed with what the future might bring, but I can’t imagine my life without her in it. Seriously, we get each other and make one another laugh more than anyone I know. Sure, I’ve had my struggles with her illness, but they are nothing compared to her own.
[Tweet “I’ve had my struggles with her illness, but they are nothing compared to her own.”]
What is the thing about her illness that most frustrates you?
Besides other people’s reaction to it and/or their ignorance about it? I guess the amount of time it takes for her to get ready when she does feel up to doing something. When we make plans to go out, we have to factor in enough lead-time for her to get showered and dressed. So if our plans are for 4 o’clock, she needs to get in the shower by no later than 2 o’clock. I used to get frustrated, but now I just chill out and amuse myself on the Internet or play a video game while I’m waiting.
How do you handle times when you feel overwhelmed as a care-giver?
I guess I’ve been lucky, but I haven’t really felt overwhelmed yet. I know there are big challenges looming; the ulcerations in her intestine have started to create a narrowing of part of her bowel, (also known as a stricture) and if it gets much worse, surgery will be needed. I just remember that it’s not about me, it’s about her. She’s the one with the disease, the one in pain all the time. Self-pity is out of the question for me, because none of this is actually happening to me. It’s my job to be strong, with her and for her.
What one piece of advice would you give to someone whose partner was dealing with chronic illness?
The best thing you can do is to acknowledge the pain they are feeling without dismissing, diminishing or downplaying it. I personally hate it when somebody tells me, “it could be worse.” That phrase is so dismissive, and I think it should be stricken from the vocabulary of anyone who associates with the chronically ill.
[Tweet “The best thing a caregiver can do is acknowledge the pain without dismissing or downplaying it.”]
You’ve started a blog and have been creating videos about chronic illness, tell us a bit about that and why you chose to speak out.
It’s a way for me to feel useful. I really do believe that compassion is in short supply for the chronically ill, and that the only way to counter that is to educate people on who the chronically ill are, and the challenges they face. I love public speaking, I’d travel all over the country (or the world for that matter) to get this message out there. I’m working on a follow-up to my original video “The Slow Death of Compassion for the Chronically Ill.” It will include some material from the original video, but it’s mostly new examples of how much further we have to go yet to improve life for people with chronic illnesses.
The “Feel This Pain” series is another part of my efforts to educate people about chronic illness, by focusing on how much pain the chronically ill are in. The videos are fairly short, about 3-4 minutes each; hopefully the fact that they are short will be an incentive for more people to watch them.
You can check out all of Ken’s videos and his blog at http://www.dontpunishpain.com, you can also find him on Facebook and Twitter.
Leave a Reply