Yesterday I was talking to a friend whose sister is in remission after a difficult fight against lymphoma. Despite the family’s thankfulness, my friend’s sister continues to be challenged in many ways. The intense chemotherapy regimen savaged her immune system leaving her body vulnerable to bacteria and illness without the continuous help of antibiotics and steroids. As a result, she continues to be the patient.
And being the patient sucks.
Cancer takes center stage after diagnosis, and I think one of the most difficult things for the person with the disease is the identity crisis that ensues. My mom was determined to return to her regular life as soon as possible, which for her, meant a 9 to 5 job as Registrar at my high school alma mater. For my friend’s sister, it meant being a mother and a wife. Being able to feel sexy and attractive for her husband as well as for herself was an important component of that – of her identity, of her sense of self.
Becoming the patient quickly strips someone of that control. An avid runner is prevented from being active. A oenophile can’t enjoy a nice glass of Vouvray (a personal favorite), and, as my friend’s sister quickly learned, it’s pretty difficult to feel attractive with no hair and needles poking you every week. It becomes quickly evident that whoever you are and whatever makes you you will get swallowed up by a new identity, Patient.
That’s what my friend’s sister is up against. And it wasn’t until my mom was really sick that she fully surrendered to it. Whenever she felt a small semblance of healthy in between chemo treatments during the first 6-8 months, she went to work. I’m not trying to say she was this amazingly strong cancer warrior who went into the office no matter how sick she felt. (In fact, quite the opposite – She acutely monitored the way she felt day to day and did not go to work when her strength wouldn’t allow it.) My point is that going to work allowed her to preserve her identity. My mom was honored for her 20 years of service as Registrar the year she was diagnosed with pancreatic cancer. 20 YEARS. That’s a hell of a long time.
I recently discovered that I’ve been wearing the same nightshirt to bed for 20 years – I know this because the shirt is from a childhood friend’s “Sleepover Birthday Bash” and is dated 1991 under the picture of a troll with hot pink hair holding a bundle of balloons. Point is: 20 years is a long time to keep a night shirt in the line up, and 20 years is a long time to keep one job. (My personal record is 3 ½ years.)
Like many people, my mom’s identity was wrapped up in her career. As a widow with a daughter, her role as breadwinner and mother defined her throughout my childhood. She always leaned heavily toward saving and was never much of a spender. She worried a lot about money, but it was a healthy obsession. (Her constant financial consciousness is the reason why I do not carry the burden of college loans, for example.) And in some ways, certain deeply ingrained traits, such as this one, clung to her no matter how much being the Patient removed.
A week before she died, her memory and lucidity began to fade, and she asked a zillion questions. Where was her water glass; did I write the mortgage check this month, etc. Her last question before she stopped talking all together (outside of the occasional incoherent phrase or word) was, “What is the date?” And when my aunt and I answered, “January 17th,” she replied, “Oh good, I made it to my last pay check.”
That was my mother. She was still Linda: the always frugal, nest egg forager. I can’t even imagine her reaction if she knew that she in fact made it to her end-of-month paycheck. Thank you, Georgetown Day School, for that.
But it wasn’t just about the money for my mom. I think she felt a small personal victory, knowing that she never had to officially resign from her job. She never officially lost that part of her identity to cancer.
The other element of her identity that the Patient couldn’t touch was motherhood. She was a mother tried and true. Selfless, nurturing, with an uncanny ability to find teachable moments in absolutely everything we did together. She’d frequently try and squeeze in lessons to my friends and classmates as well to which my typical response was an exaggerated roll of the eyes followed by, “Mooooooooom!”
Her maternal lessons were so easily identifiable that my friend and fellow carpool passenger, during our lower and middle school years, affectionately nicknamed carpool on Mondays, Tuesdays and Thursdays (my mom’s driving days) “Mommy’s Morals” – I think my mom beamed the first time she heard him say it.
When she got sick, my mom did not stop teaching lessons. She continued finding teachable moments and reminding me – or [clearing my throat] nagging, as I remember – to open the mail right away “because you never know when you’ll have to respond to a bill immediately” or to never write your social security number in an email “because you can’t trust hackers.”
And although I emotionally felt that she was still my mother throughout her illness, as most evidenced by her constant concern to protect me from grief, I was not prepared to be the one to strip her of what also makes her a mother: Decisions. It wasn’t the identity of Patient taking something away this time; it was me.
The first time it happened, she was hospitalized at Georgetown University Medical Center due to chemo-induced sickness, dehydration, fatigue, infections and a fever. She had passed out in her bathroom and hit her head on a metal railing. I found her and called 911. She had 20 staples placed in her bald skull.
I had been living at home with her during my business school summer internship at the time, and up until that day, we had been fairing pretty well considering the circumstances. Our wonderful friends helped out greatly – accompanying my mom to chemo treatments when I had to work, bringing over food and constantly checking up on us.
But now we were in a hospital room. Just the two of us and my aunt. My mom was sick – very sick, and she wasn’t going to be discharged any time soon. Friends and family called and wanted to visit, but my mom rejected all overtures. She didn’t want anyone to see her in this state – no wig, hospital bed, pale as a ghost and dressed as the Patient. So we sat there, day in and day out, in what I’m convinced is the most depressing room in the entire world, preserving her dignity. I also spent a great deal of time feeling sorry for myself and directing all my anger at my father for dying 25 years ago.
Several days went by, and my boyfriend returned from a 3 ½ week trip to China. I had been counting down the minutes until his arrival, having something to look forward to, and I couldn’t wait to see him. We had planned a long weekend in New York together. After some discussion and concern about my departure, I ended up going to see him, and my aunt stayed with my mom.
Upon arrival in New York, I received a phone call from my mom asking me to come back. My aunt had to leave, and she didn’t want anyone else there but me. I felt like someone had just placed the entire world on my back. I wrestled with the instinct to please my mom, because when your mom tells you something, you listen, and you do it. She’s the mother; she makes decisions.
But at that moment, it was my turn to make a decision. There would be no more pushing people away when things were at their worst. We have to let our friends in, I said to her, tears streaming down my face, while I sat on the couch in my boyfriend’s sublet. It’s too much for just us. It’s too much for me if it’s just us.
My mom relented, and she called two close friends who immediately came to the hospital. This marked the beginning of my occupation of the role, Executive Decision Maker. I made many decisions after that – some that I told her about and some I didn’t. For example, I decided we needed an in-home nurse several months later even though my mom was obstinately opposed to the idea. I decided when to call her oncologist, gastroenterologist and the ambulance. I stripped my mother of her decision-making authority because I had no other choice.
Identity is a funny thing during illness. It’s a little bit like the white elephant gift exchange on Christmas: There’s a lot of swapping; you never know what you’re going to get, and you’re usually surprised (and sometimes disheartened) with what ends up in your lap. I ended up with decisions. My mom lost decisions but was able to hold on to her career. My friend’s sister is still fighting, and I hope she gets what she wants. I hope she still goes shopping for the perfect dress and splurges on a hot pair of heels. And if she hasn’t made time for it yet, I’ll go with her. I’ll take any excuse I can get.