Rebels with a cause

Craig just woke up from another bout of pain; the culprit this time was not his stomach but his tailbone. He’s starting to have skin breakdown just near the bottom of his tailbone. Like we’ve done so often, Erin and I pulled his boxers down just enough to see the source of his pain. A quick touch to his lower back revealed bones that were too easy to feel, as though his tailbone was protruding through his skin. He’s lost so much weight that he’s practically skin and bones. Through his shirt, it’s easy to see his shoulder blades and spine. When he lifts his shirt, the bones become even more apparent. They poke through his paper-like skin, which now hangs off him as if being weighed down by time. While his back and tailbone reveal his real weight, his belly remains deceivingly plump, as if he’s pregnant with tumor and fluid. Skinny or plump, it all causes discomfort.

The way cancer has transformed his body is shocking, and so different from our experience with mom. Though mom lost her hair and suffered from skin breakdown on her forearms and legs, in our eyes, her appearance remained mostly the same. It was only after long stays away (which happened rarely) that we noticed the physical changes. With Craig, the changes are noticeable, partly because his cancer has metastasized to other organs. He’s been fighting aggressive cancer for the past seven months; he hasn’t "eaten" since March (apart from TPN), and has lost forty pounds as a result. The tumors have metastasized to the liver, kidney, abdomen, around the lungs, and diaphragm. Unlike mom, whose cancer affected her brain and motor/cognitive ability, Craig’s impacts have been systemic; the physical changes are, therefore, understandable.

In our image conscience world, few would dare brave public spaces looking less than perfect. Not the Lawlers. Physical appearance has never been a point of vanity. Wear it loud; wear it proud, as mom would say. Though she owned a wig, mom rarely wore it. She enjoyed strutting around town, scar and all. Ever the nurse, she viewed her illness as a teaching moment, and welcomed the opportunity to tell others about brain cancer, and, most importantly, how she was faring with it. I remember one time at the Texas Roadhouse when a little girl reached out to touch mom’s hair. Mom just grinned as she did, and said “feels funny, doesn’t it?” The little girl’s father whisked her away before mom could share more. Mom never shied away from the fact that she had cancer, and neither did we. For the most part, we just got on with it and functioned as we always did. To have the chance to walk beside her was an honor.

Taking a page from Mary Lawler’s playbook, Craig hasn’t shied away either. Like mom, Craig hasn’t let cancer keep him indoors; he takes wheelchair walks, tours around town, and meets with friends. As late as June, Craig was taking singing lessons and even performed a solo with an acappella group. I’ll never forget seeing Craig standing on stage with ten other able bodied musicians, with his TPN resting quietly in the corner. He belted his Ray Charles' solo as clear as the others. Though he was exhausted afterwards, it was clear he enjoyed reconnecting with that part of his life. Just a few days ago, Craig reconnected with another part of his life: walking. He decided to take a walk outside, his first in weeks. It was great seeing Lauren’s expression as he slowly moved through the walkway of the Denver Place Apartments. As he passed by, I could hear her whisper “he’s walking.” (Lauren, Stacy, and Roshonda have been with us since Craig was diagnosed in February. They’ve been Craig’s biggest supporters, as well as his personal bodyguards/gatekeepers. ;) Thanks for always being there.)

It’s easy to underestimate the amount of courage it takes for cancer patients to continue on with life. As cancer ravages the body, it can also ravage the soul and sense of self. It’s an assault on a person’s right to exist in life with the rest of the world. Living in our world isn’t easy; life is unkind to the physically challenged. Sidewalks are uneven; bathrooms are too narrow; and handrails are too few. Physical barriers are not the only reminders of "being different." People, though well-intentioned, don’t often know what to do. Is it best to make eye contact and smile, talk to the person as if they were a child, or pull a “out of sight, out of mind” and ignore the person altogether? And what of helping? Is it proper to open the door and give way to a person in a wheelchair, or create more barriers by plowing on as normal? We’ve experienced the whole gamut, but mostly, people carry on as normal, probably in an effort to respect our privacy. Mom would often remark that people had stopped looking her in the eye, while small children just stared.

Continuing on with life is no small feat for a person at the end stages of cancer. You can spend an awful long time anticipating the arrival of something, or you can get on with it. It takes courage to give the proverbial middle finger to cancer, and there’s a certain enthusiasm that comes along with the revolt. Being in public is the acme of the rebellion. Craig will continue to be our valiant leader, and brave the Denver streets, if just to be near nature.  It will take much more to keep him indoors. -- J