Fairly shortly after learning that my aorta was now beginning to dilate I had made an appointment to meet my new family doctor. I had heard good things about her and was looking forward to finally having a doctor that might make some progress in my pain management situation.
I had been getting horrible migraines every once in a while starting a few weeks before I went in for the appointment. I have headaches everyday but these were different and on top of the headaches I already had they were pretty unpleasant. I was also at times sleeping for up to 22 hours at a time compared to my usual insomniac self. When I told my doctor all of this she immediately wanted me sent to the hospital for a brain CT to ensure that it wasn’t some sort of aneurysm causing the pain. As I’ve stated before Connective Tissue Disorders can weaken artery walls causing such things. She assured me she didn’t think anything would show up but wanted to be sure before she sent me home for the weekend (this was a friday). To put it blatantly she said she’d rather do the scan then have me drop dead during the weekend. I was sent to the hospital and a few hours later after the scan was complete I was free to go. She instructed us to wait at home and said that she’d call only if anything showed up. She said that any call from her wouldn’t be good news and to hope she didn’t call.
I wasn’t even slightly worried. I had never heard of brain artery involvement in Marfan Syndrome and knew the test was a better to be safe than sorry sort of thing. I have all sorts of pain everywhere and was sure this was just another one of those things. Imagine my surprise when the phone rang later that night. “Abnormality” and “looks to be stretching” were pretty much the only words of that conversation that really registered. As soon as I had seen her number on the call display my heart had just about shot out of my chest. I hung up the phone and tried my best to keep it together long enough to explain what she had said to me to my family, but I could not find my words and soon broke down.
I finished explaining what she had said to my mom and grandparents, as tears trickled down my cheeks despite my desperate attempts to stop them. Though, the crack in my armour only lasted until I looked around to see the heartbreak written on their faces. These, the people who love me more than anyone could ever ask for, drenched in disbelief and devastation. I decided immediately to pull myself together -show them that I was okay, that I’d be okay. To be honest I was in shock. There was a lot of this can’t be happening type thoughts running through my head. First my heart, now my brain. The two most important organs in the body and both were damaged.
We were told a specialist at The Children’s Hospital would need to look at my scans before any talk of surgery or treatment or even what was really going on could happen, as the radiologist in our town was not as experienced in dealing with young people and tissue disorders. We were told to wait a week and if the radiologist hadn’t called by then to phone them. A week went by, no phone call. I sat there that week confused, sometimes devastated, sometimes terrified, but most of the time numb. Though, sometimes horrifying thoughts crept in. I didn’t think I was going to die, but I didn’t know. Was there a chance? I felt as though I needed to write a small will of sorts. I began to regret all of the things I had missed out on and many of the choices I’ve made. I began to feel as though this was the end. Maybe not of my life as a whole, but my life as I knew it. My mind sometimes wandered to thoughts of brain surgery, brain damage, and yes, sometimes even death. We called only to learn that the radiologist had been out of town and that it may be a few more days before we would hear from him. Each day dragged on forever. I was like a shell of myself, keeping my mind blank as best I could in order to cope. The not knowing was the worst. It was maddening.
Finally two weeks after initially learning this news we received the phone call. At first I had dreaded the phone call. It would solidify that this was real and that I was going to have to deal with it. But I knew that any news I was about to learn couldn’t be any worse than what I was imagining. After feeling as though my entire life had come crashing down I finally caught a break -a big one. My brain was fine. That’s right, I said fine. You would expect me to say that I was ecstatic. But the truth is; though I was thankful beyond comprehension, I was still in defense mode and felt numb. However, I had as I saw it been given a second chance in a way, accompanied by an entirely new perspective. I was baffled and frustrated that the last two hellish weeks of mine and my family’s lives were unnecessarily so. I was understandably confused as to why one person viewed the results of the scan so entirely different from another but I didn’t let any of those emotions consume me.
I stayed numb for a few days until the reality of the situation finally set in and I felt I could really let my guard down. I was going to be okay. And that wasn’t just what I had to tell myself to get by this time, it was the truth.
“Breathe. Let go. And remind yourself that this very moment is the only one you know you have for sure.” -Oprah Winfrey