Just more than a year ago I was diagnosed with a benign olfactory groove meningioma between my frontal lobes (also known as benign brain tumor). For at least 5 years it had grown to the size of a racquetball, and slowly and insidiously it impaired my ability to think, feel, and lead a normal life. By the time it was found, I barely cared about anything, including myself, my 2 young children, and my husband.
When the tumor started pressing on my brain, it made even the simplest things feel overwhelming. I would hide from almost everything, and yet, much of this process was liberating, until my second son was born almost 1 year before my diagnosis. Life became impossible, but I couldn’t feel it.
Within months of my delivering my second baby, I was talking about how much I didn’t want to be a parent, how I couldn’t cope, and how I just needed “out.” Everyone thought I had postpartum depression. It took losing my sense of smell for my doctor to agree something wasn’t right.
Looking back, I see that my husband’s and my family’s experience with my disease was very different from mine. They faced the emotional brunt of it; I could barely feel anything or be cognizant of the ramifications of my diagnosis until the tumor was removed.
The second morning after my successful surgery I felt a wave of emotions so powerful that I began to cry. So many thoughts charged through my head. There was a sudden rejuvenation of reasonable cognition, coupled with the awareness of how horrific my life and my family’s lives had become. It was a huge relief that surgery was the extent of my medical needs.
Maybe it was the overwhelming sense of wonder and gratitude that finally, that morning, I was able to feel again—“I was back.” The success of my surgery showed just how much the tumor had affected me, and how much my family had lost all those years. To have my brain emerge back from the long-lasting fog and trauma of the tumor, and the temporary fog (and second trauma) of surgery, was exhilarating. It has been the single most incredible, profound experience of my life.
Now a little more than a year later, I’m still learning how the tumor changed me. Fundamentally, I am no longer the same person. I recognize most of who I am, but the changes I experience are so significant that I feel I have to learn again who I am. It will take years to learn, accept, and get comfortable with the modified person I am, and everyone in my life is also adjusting to the new me.
I believe that no matter the specifics of the health crisis people go through, the consequences are largely similar. I cling to the perception that I’m not alone; but whenever and with whoever I’m able, I connect, share, cry, distract myself, and hold to anything that makes me feel understood and normal.
Recovery: Taking Care of Myself
Since my surgery, I’m almost compulsively sharing what I’ve been through, and what I’m still going through. Sometimes I feel as if cancer still has a strong grip on my life. Recovery from brain trauma can be a long process, and it involves so much more than the physical issues. Sharing with anyone and everyone, including but not exclusive of a therapist, is a vital part of the healing process.
However, it’s tiring to constantly explain your experience. Connection, closeness, and the safety that come from shared experience and understanding feel like casualties of my illness and recovery.
In addition to maintaining some semblance of a normal life by caring for kids, a spouse, a home, and holding a job, the illness itself, recovery, treatments, and appointments are draining. There are still times I have to hide away from everything, for lack of energy and a total overload of emotions and demands. Figuring how to manage my limited energy is a significant task.
I’m still learning, and the terrain is constantly changing. Recovery is my most important job now: ruthlessly taking care of myself.
The New Reality: Hope, Trust, and Love
This brings me to the biggest single experience I can share with anyone going through any health crisis, whether a patient or a patient’s loved one. Being gentle, patient, and accepting myself and my new reality keep me sane and positive.
Above anything I accept that my life has been changed by this disease. I don’t fit my own life anymore, and this has changed the lives of my husband and my children. I can’t be who I used to be, I can’t do what I used to, and I don’t know if I ever will.
Sometimes I feel I am a complete failure in the eyes of my family and/or the world around me, and the ensuing guilt, remorse, and sense of uselessness begin to cripple me. But I constantly remind myself to judge myself not by who I used to be but by who I am, and what I’m capable of now. Who that person is now may not feel like much yet, but one day that person could be even better than the one before cancer got hold of her brain.
I feel a bone-deep sense of hope. I am lucky in so many ways. My disease was identified and removed. I’m surrounded by the most caring and dedicated husband, children, family, and friends. I’m learning to trust and invest in myself in ways I never did as a “healthy person.” I’m often humbled by my journey, and by how we’re all struggling to recover from this experience.
I lived for so long with little of my own emotional life that I value even difficult emotions. They teach me about my life. I am still me. My tumor, surgery, and recovery have taught me that I am precious, to myself more than to anyone else, and I am deserving of every breath, feeling, and moment I get.
For as long as I get to keep breathing and feeling, I will be grateful for the chance to keep muddling through life. Whatever that life ends up looking and feeling like, and however much I mess it up, it’s life: I love life.