Time and time again, we hear “your health is all you have in life and without it, you’re nothing.” If you’re like me, you immediately think of your physical health.
Yet, perhaps often overlooked is the other side – a person’s psychological health. The emphasis is rarely placed on mental well being, unfortunately. Psychological ailments are typically met with criticism and stigmatization. For fear of being labeled “crazy”, mental illness is hidden and pushed aside. According to the most recent National Institute of Mental Health survey, 18.6% of the United States population is currently suffering from a mental, behavioral or emotional disorder. Let us not forget that this number is likely skewed – how many people are truly admitting to experiencing a psychological disorder on a survey? The prevalence of psychological disorders is staggering.
Ashley earned her bachelor’s degree in psychology so she continuously nags me about some psychological condition which she has claimed I have had since my first craniotomy. The simple fact is that any surgery can be a traumatic experience. In her view, and the view with which I now share, major brain surgery at 24 years old, followed by a near deadly infection, followed by months of rehabilitation with the cognitive ability of a 2nd grader due to hydrocephalus, radiation and then a recurrence has definitely caused me trauma.
Yes, I survived. Yes, I am tumor free, or at least I hope. I have my health and life. But as Ashley has reminded me over and over, I have never given myself a minute to mourn my loss. And contrary to what I say (the ever-stubborn man response of “I’m fine”), perhaps there was a true loss.
In the span of less than 24 hours in 2008, I had an MRI, received the devastating news that I had a large tumor in my brain and was brought in for emergency surgery. When my initial surgery and physical recovery was over, I immediately went back to work and then school. There was no opportunity to process the news and mourn. Ever since, I have spent the last 7 years of my life with a brain tumor on the back of his mind (no pun intended). I lost the carefree days of my twenties. I lost the ability to complete law school with my peers and to pass the bar exam. I take 3,000 milligrams of medicine per day to prevent seizures and face constant medical bills with rising costs in health insurance. I’m only 31.
So while I am a happy and self-proclaimed blessed person, Ashley refuses to let me tell her “I’m fine” because as she tells me, she sure as hell would not be. Yeah, I’ve had my hardships and have successfully dealt with them one by one, but when I put myself in her shoes, I can understand where she’s coming from. She has witnessed the heartbreak when I didn’t find my name on the list of successful applicants on the bar exam list three times, the frustration in my eyes when I forget something I should not have and the aggravation that I grow fatigued easier now than I ever did before.
She has begged me to go and speak with a trained professional or support group to truly open up and express my feelings. Those who know me, you know that I am stubborn and have not done so – at least not yet. I credit my stubbornness for one good thing though, and that is beating my brain tumor. Ashley has always maintained that I can talk to her about it if and when I am upset, but cautions me that I would benefit more from speaking with a trained professional or survivor’s group. She is unsure she can ever truly understand what I went through and the internal struggles I face. Whether she is right or not, I don’t know but I’m at least keeping the option open.
My new work with the Connecticut Brain Tumor Alliance has helped, though – there is no doubt in my mind, or Ashley’s. She tells me she’s seen the way his eyes light up when I talk with other brain tumor survivors. And it’s true. While I love talking to her about everyday life, there is something special about talking with fellow brain tumor survivors for support and guidance. It is the best therapy.
This week, I’m meeting with the Executive Director and a fellow brain tumor survivor to brainstorm about creating a patient-outreach platform where survivors can connect one-on-one with someone in need. When I woke up in the hospital at 24 years of age, I was lost. Just two months earlier, I had just completed my first year of law school and there I was, laying in a hospital bed trying to write my name and recite the alphabet. My family was by my side and I am forever grateful, but it also would have been comforting to have someone who could share some insight with me.
I’ve come full circle – I have become the person that I needed seven years ago and hope I can now help someone else out there. Nobody should have to go through this experience alone. Everyone needs somebody to talk with and vent to, and I want to be that person. I’m not a medical expert, but I have lived through this and am confident that I can be a great resource for those who are in a similar position to that which I was in. I know it’s only a drop in the bucket, but I hope I can help level out the psychological versus physical health playing field.