I like to help people. I’d like to say that I sat right down and wrote this essay as soon as Larissa asked me to. But I procrastinate, so here I am the day before this essay is due. It pains me not to worry about punctuation, spelling, and grammar, but Larissa said that was ok, there were editors to fix this essay, and make it look good enough for the New York Times, or The News Leader.
The headaches started on NYE 2007. A crippling pain in my head that would come on suddenly, and leave about thirty seconds later. I thought maybe it was panic attacks. At that time I was going through the very beginnings of a separation, and what inevitably would later be a divorce. Realizing a marriage you thought would be forever is dissolving before your eyes is hard on a person. So the headaches were easy for me to write off as stress induced.
As time went on, I tried diet changes, gave up my beloved caffeine in any form, and also quit drinking. The headaches didn’t let up. Sometimes I’d have two or three a day, and other times none for a week. Being someone prone to anxiety and depression, I started going to different specialists hoping for answers. Endocrinologists, cardiologists, and even the local urgent care when the pain was so bad. All tried different anxiety medicines, and some wanted me to start a pain medication regimen, which I was not interested in. I just wanted to know why I hurt so badly. I began to feel like maybe I was just making it up, I started feeling like I needed to hide my pain, because I was so afraid of what other people, including my family thought.
Somewhere in there, I reconnected with my high school sweetheart, Troy. We had started to build a life together with my two boys from my ex husband. I had a great job, made good money, and I was supporting myself, and sharing custody amicably with my ex husband. These headaches just didn't make sense. Towards the end of 2010, I took another higher paying job. I opted out of cobra insurance because it was nearly $800 per month. That was $200 more than my house payment. My new company would insure me at thirty days into my employment.
The headaches were coming more often, and I started feeling “carsick” no matter what I was doing. My vision played tricks on me, and every so often when I’d get one of those headaches, I’d vomit, or lose my hearing in my right ear until the pain passed. My bloodwork looked normal, my weight was excellent, I hardly ever even had a cold. Doctors were baffled, and brushed me off.
In December 2010 I was looking forward to Christmas, and the new year, I was going to get my happily ever after with Troy that May. Plans were well underway, venue booked, dress purchased, invitations and save-the-dates ordered.
Saturday December 18, 2010 I was in my office and a headache hit. Hard and fast. I couldn't make it to the bathroom before I was vomiting. It just wouldn't stop. One week away from having insurance I drove myself to urgent care at Cox Hospital. It was not a pretty sight, I was so weak, and vomiting so profusely I had to have help off the floor in the exam room. Troy and my two boys were there with me. We flippantly thought it was the flu. The urgent care doctor did an exam. He looked in my right eye, and I was rushed to the ER, a CT scan and MRI later, I found out I had a brain tumor, and would need surgery immediately.
I had two separate craniotomies to remove the tumor. I credit Dr.Mace, my neurosurgeon, and now close friend with saving my life. However at that time I was uninsured, and needed radiation. I had to navigate the ins and outs of my new diagnosis, upcoming treatments, medical bills, and loss of income. I was lucky to have close family, a supportive partner, and friends to be there for me. But I still felt so alone. There was a caseworker. She gave me some Ensure, and helped file my social security and disability claims, but I had no one to talk to who had been in my shoes. I couldn't find any support groups for brain cancer.
In the spring of 2011, Troy and I had our wedding ceremony. We were unable to get legally married, I had to file bankruptcy because of my medical bills. A surprise between treatments arrived on New Year’s Eve 2011. Our baby boy, Henry was born. We were able to legally marry after all the bankruptcy was resolved. True to our fashion, we married On Friday the 13th.
After I got through the surgeries, the radiation, the bills, the applications for assistance, and the heartache of everything I thought should be, being yanked out from underneath me, I vowed to start an organization to help people like me. With the help of the nurse manager at Springfield Neuro and Spine Institute, the support of Dr. Mace, my husband Troy and my close friends; Grey Matters Fund of SWMO was born.
I volunteer with Grey Matters Fund in the hospitals. I am able to provide emotional support to patients and caregivers, and I also provide financial assistance to patients and their families. I pay for medications, therapy, and also travel expenses. I can be a liaison between patients and the neuro department. I could not do these things if it weren't for my committee members, and their belief in me, and my dream of helping others. My work with patients through Grey Matters Fund has taken on many shapes and forms throughout the past five years. I’ve been able to give away over $20,000 to patients in our community with brain cancer, brain tumors, and traumatic brain injury. I’ve walked with caregivers and patients through treatments, recovery, and even end of life transitions. I've made irreplaceable friendships, and had many meaningful conversations. I’ve sat with the dying, and held hands with a spouse as her husband took his last breaths. I've watched mothers and fathers fret over the injuries their child has due to car accidents. I've been in the room when a doctor delivers life altering news to a family. I've sat quietly in the background just to be there when someone looks up, so they know they are not alone. I wouldn't change any of it.
I like to help people, I believe in forgiveness, I believe laughter is the best medicine, and I also believe in sharing openly and honestly, knowing that it may help alleviate someone else's burden. Be vigilant about your health. Advocate for yourself and your loved ones. Stay off of WebMD.