If you read this blog on any sort of regular basis, you know that my wife Keena has Crohn’s disease. As well, you would also know that it was 2 years before it was finally diagnosed properly followed by 5 years of hospital visits, heavy duty meds, ups and downs, and two bouts with near death until she finally had an ileostomy which removed her entire large intestine. During that time, our perceptions and paradigms around health, medicine, physicians, food, and support were completely turned on end.
But some of you may not know that about 3 months after Keena’s surgery – just as she was starting to feel well for the first time in 7 years – her mom was diagnosed with breast cancer. In fact, the diagnosis from the doctors was that the tumor had probably been there for 5 years or so, going undetected by mammograms. (Yes, it was news to us as well that they don’t always work…)
Luckily, Suzy found her way into a study during her treatment. Because she qualified, she would get some free medications as she would have chemo both before AND after the surgery. Doctor’s hypothesize that book ending the surgery like that will significantly improve her chances of staying clear of cancer. (It better too…there’s nothing like losing your hair – eyebrows included – experiencing nausea, losing your appetite, getting blisters on your hands & feet, and many other wonderful side effects for no reason!)
And much like we did with Keena, our perceptions are being stretched yet again. And what’s really interesting is that those of us who went through it with Keena are responding differently to Suzy just a few short months later. The context and the variables are different enough that our support mechanisms have changed.
For example, Keena and I obviously have a daughter now. A daughter who loves her Nana very much! And love to Addie isn’t snuggling and rubbing of backs…it’s getting down on the floor and playing. It’s running, jumping, hide and seek, and lots of other cardiovascular activities. So, for Nana, my daughter’s desire to be with her is a real problem right now. That is why Keena can’t see her mom (read: best friend) nearly as much as she wants to. So Suzy has to endure more of this alone.
As well, there are other relationships that are different. Suzy’s sister has come out twice during the process, much like she did for Keena several times. She’s a calming influence for the family and she helps cut through the junk to find the heart of the matter. But you can see how much harder it is for her to be strong with her sister than with her niece.
Then of course there is Dave, Suzy’s husband and Keena’s dad. When Keena got sick, his primary responsibility was to support Suzy as she supported Kee. Not that he didn’t care for Keena – he cares deeply! But, his role was clear and his charter was simple: make it easy for Suzy to care for her daughter. Now, though, he’s in a pickle. He’s a career Air Force mechanic. He’s a tough guy. He’ll tell you about how he came back from knee surgery a week early, against doctor’s orders, and that a person should take as few pain medications as is possible. Everything is about ROI and TCO. So, when you ask him for sympathy and empathy, it’s hard. His mission has changed and his skill set is making it difficult.
Of course all of this is still in the midst of friends and other family members who don’t know how to act or react. This was true for Keena too – I suspect it’s the human condition. Very few people really know how to help a person who is going through something alien. For example, my mom holds “good thoughts” for people, but doesn’t communicate those concerns to the person. At the same time Suzy has a friend who communicates every thought, to the point of being a bit of a burden. I try to support Keena as she supports her mom which probably doesn’t let Suzy know how much I want to help her. Etc. People generally speaking have trouble doing the right thing, saying the right thing, and offering the right help…it’s just hard!
And there is also the lack of understanding. I used to get it all the time with Keena. People would ask me how Keena was doing and I’d tell them. A year later, I’d see that same person who would ask again about Keena. When the news was actually worse than the previous year, it made most people extremely uncomfortable. Doctors are supposed to make you better. Medicine is supposed to work. These are things Americans hold to be true and when something happens that promotes a different kind of experience, we get very uncomfortable.
This is true with Suzy. She responded very well to her first treatments of chemo. The tumor essentially died – although it didn’t reduce in size. Many people hear this and think, “Oh good…it’s over.” Ask Suzy if it’s over. She’s got 3 more months of super side-effects from the chemo, not to mention the reconstruction surgeries, etc. Then there is also the burden of worrying about cancer for pretty much the rest of her life…
What still amazes me, almost every day, is that there are stories like this going on in almost every family around. We all feel so insulated from the reality of sickness because as a culture, we really don’t share these burdens on a regular basis. But when you talk to someone and find out about a sick spouse, child, or maybe even the person you’re talking to, it’s so hard to be in the moment and work on understanding. I’m guessing it’s because it’s too painful to hear on a regular basis so people would rather stay at a distance than really get in there and ask questions. And for some people, myself included, who have never really had medical problems, it’s almost impossible to truly empathize.
But at the end of the day, I think it comes down to this. We need to know that people are hurting. While we may not know exactly how to help or support them, it’s a good starting place. And about the only real way to learn that is to ask. Then, the second step is something I’m going to try very hard to teach my daughter. After we know they are hurting, it’s important to listen. It’s important from one human to another to acknowledge the context of their situation and listen. From that listening I believe a lot of good can come. You can hear how to support, how to help, or simply what to say next. Simply giving 30 minutes to someone may be all they need that particular day. Talking it out (for most people) really can make an impact.
So this blog, while about my family and about illness, is really about what I believe in from my core. I teach communication to people around the world and that’s what this blog is about. Listening, immediacy, feedback, stories, context, and interpersonal communication – these are traits that we should all work on in multiple frameworks.
Here’s to healing for you Suzy. And here is to health for our family. We’ve had enough sickness to last a lifetime, so here is to a time of wellness for us all moving forward.
Want to hear more about how to communicate around illness? Need someone to speak to your group about effective interpersonal communication? Contact firstname.lastname@example.org for more information!