By Jane A Malkoff
There is something exceptional about my sister’s children. Actually, I have three sisters and all of them have exceptional children as far as I am concerned! I am unapologetically biased about that. Adrian, a dear nephew, was visiting for a few days a couple of summers ago. After some strenuous activity involving horseplay with my oldest son, his leg began to hurt. Retrospectively, I recall his activity level was tamed considerably from his usual pattern. He was typically very active. He enjoyed skiing, snowboarding, soccer, etc. and it was certainly possible he had injured himself along the way. However, he had never experienced anything which prevented him from his 20-something active lifestyle like this current pain was doing.
Back at his apartment in Ohio two weeks later the pain continued. He called me and I gave him instructions for the usual week of RICE (rest, ice, compression, and elevation) and said if after one week it was not better to go to the doctor. He went to the doctor the following week when the pain was no better. He phoned me, “I sent you my x-rays in an email. Can you look at them? I have a hole in my femur”. He really did.
After a very long and frustrating journey including a messed up MD office with awful communication and triage skills, as well as several other negligent paths, it was discovered the tumor was malignant and because of all the delays the malignancy was now not only in his femur but had metastasized to his spine as well.
Wake me up. My sister’s son. My mom’s grandson. Wake me up!! Even more than my breath, I wanted this to disappear from his life and for Adrian to be free from what this diagnosis was about to put him through. No amount of anything I was good at or capable of had any power over this. No advocacy, no clear communication with the MD offices, and no amount of creating the space for him to be an active participant in his plan of care would remove the malignant tumors in his body. Supporting him empathetically and imaging what it was like to walk in his shoes did not satisfy me. I wanted the nightmare to disappear or become mine.
Adrian had a very long journey including two major surgeries to salvage his leg, several hospital admissions for chemotherapy, in-patient stays for fevers, and many months of outpatient chemo. If anyone had what it took for the journey it was him. He had always been intelligent, strong-willed, funny, charismatic, faithful, loyal, and a smart-ass (surely, he did not get that from me!). He took all of those amazing qualities into his treatment and recovery. Adrian called recently to give me the news. He had been declared radiographically in remission!! Since there are no markers for the type of malignancy he had, remission is determined by scans and x-rays. There is no evidence of tumor in his leg or his spine!! Then he added, “I would never wish this didn’t happen to me. I was able to see how much I was loved, how truly good people are, and how much they care. I would just never trade this experience for anything!”
I now realize without doubt there is a very big difference between metaphorically walking that mile in someone else’s shoes and actually taking someone’s shoes in order to take a journey for them. It turned out the experience I could barely cope with as I imagined Adrian going into this life-threatening situation had given Adrian a life perspective he would never want to have done without. He also shared with me, “It was the team work that made everything possible with every single person on the team doing their vital part. It took everyone”.
In our daily work at Clarity we are diligent about the difference between offering assistance with heartfelt empathy for the struggles at hand for our clients versus a desire to force a path we may feel more comfortable with. It is through the stories we are so thankful for, like Adrian’s, we have come to realize no matter what, the journey is yours and uniquely yours. We are eager to walk the path with you, be on your team, and even carry you at times, all the while making it about your journey.