Have you ever looked back and thought, “Wow, that moment had a lot more significance than I thought”? I can pinpoint the moment that my body started failing, and I will never forget it. When I was fifteen years old, I was extremely active. I ran cross country, indoor track, and outdoor track; I was in the all-state marching band; and I did cross-country skiing. Then one day in marching band, I passed out for no reason.

That was the day that everything changed.

After that, any physical activity caused me to feel dizzy and lightheaded. I had to stop doing all of my favorite sports because I would pass out. I underwent a number of scans and tests, all of which were negative. I had no idea that normal results with mysterious symptoms were just the beginning. It would be several years before I started to feel pain. I first experienced severe stomach pain when I was 18 years old, working a temporary job at a coffee shop while enrolled in culinary school. It was so powerful, I puked. I was sent to the emergency department and told I had a stomach ulcer that would go away on its own. Unfortunately, this was not the case. After three years of persistent stomach discomfort, difficulty eating, and throwing up, followed by an increase in incapacitating pain, I was told that I was insane, that it was all in my head, that I was constipated, and that I just had gas. The specialist I eventually saw told me the same things.

  I was so frustrated. Everyone was just calling me crazy. Saying that my pain was not real.

I battled my symptoms for three years, and as they worsened, doctors continued to give me ulcer medication. At this time, I also met my husband, and I made an effort to appear that everything was alright by ignoring my symptoms.

 A few months after we were married my new husband was sent away for military training while I fought successfully to get into a specialist. Even a state away he supported me in trying to find out what was going on. My gastroenterologist also thought it was all in my head. He spent months giving me a new, it’s all in your head, diagnosis. I eventually persuaded him to perform an endoscopy to see what was wrong with my stomach. The scope revealed a polyp that the doctor said could not be causing my pain, but he referred me to a surgeon if I wanted it removed. It can be exasperating to have every test come back normal, only to have them brush you off when they finally find something. That polyp was exactly where my pain was. When I went to see the surgeon, I was terrified that he would say the same thing again. Instead, something completely unexpected occurred. At my first appointment, the doctor entered the room and said, “I am very sorry that you have cancer but don’t worry, we are going to get it all out.”

I will never forget how that statement shook me to my core.

All I could hear was my heartbeat, and everything seemed distant. I couldn’t stop thinking about cancer as he described his plan for resection and removing a large portion of my stomach. Fortunately, I was accompanied by another military spouse who took copious notes. I returned home to an empty house, preparing for an emergency surgery thousands of miles away from family, with my husband two states away. I had my laparoscopic surgery two weeks later, in January 2011. My mother flew in, and my in-laws joined me. I was scared, this was my first surgery.  Unfortunately, it would not be my last surgery. When I awoke, I was in excruciating pain.  I had a drainage tube coming out of my nose, and they had to perform open surgery. Fortunately, the surgeon stated that they were able to remove the entire tumor with clean margins. The agony was unbearable. I was still in a haze, the anesthesia was wearing off, and the smallest nurse struggled for thirty minutes to try to move me to the bed in my room. It was excruciating, every small movement radiated through my body, the nurse pulled and tugged, and I thought it would never stop. Finally, the head nurse came in after my father-in-law demanded to know what was taking so long. I’ll never forget that week in the hospital when every movement was agonizing. I couldn’t eat anything solid for a month. My mother looked after me for a week but had to return home. I knew the 2-hour drive home would be difficult as I prepared to return home. I also knew I wouldn’t be able to drive.

So, once again, I turned to my fellow military spouses for assistance. 

Someone I barely knew drove up to pick me up and drive me home. I was not expecting an open-surgery recovery. I was alone at home and couldn’t even get to the bathroom. But I made it, and each day I got a little better. I was determined to succeed. I won’t lie, there were a lot of tears, rage, and sulking. When my husband returned, I was mostly functional, and it was time for my follow-up appointment with my surgeon. I was so nervous as I arrived at my appointment. What if they didn’t get everything? What if they have to go back in, and I have to go through it all again? Will I need chemo? The doctor came in and told me that the pathology report had come back and that the tumor was benign. It was never cancer! It turned out to be a schwannoma tumor. It would not happen again, and I would not require any additional scans. I was so relieved that I didn’t have cancer that I didn’t think twice about it. I had years of reprieve until my body started failing me again.

  I have had to mourn so many versions of myself.

It was much worse this time. It began slowly enough, with some mild weakness on my right side. The migraine then began. It was relentless; it arrived one day and did not leave for a year. I tried everything, but nothing worked. Then the weakness on my right side became suddenly worse, and I was rushed to the emergency room because we thought I was having a stroke. I was terrified because my husband was deployed thousands of miles away and I had two young daughters at home. My amazing friends surrounded me and took charge. Fortunately, it was not a stroke, but I was not feeling well.

I developed tremors and sporadic weakness on my right side, resulting in unexpected falls; I lost my peripheral vision and required a much stronger eye prescription; and I experienced severe nerve pain in my back. I was using a cane and couldn’t drive. I was dizzy, shaky, and in excruciating pain. I was not functional, I could feel all my dreams slipping away from me. I felt like a failure as a mother. My little girls deserved better. Once again all the tests came back normal, I was on too many medications and my doctors all said that maybe it was psychological.  I fought back and received second, third, and fourth opinions. I would not be told that everything was in my head. Finally, I had a 4-hour MRI to look for MS lesions, and they discovered a tumor in the spinal cord of my lumbar spine. That was the start of finding my diagnosis. After years of struggle, there may be an answer.

Stay Strong, Michaela