Creating a New Normal: Coming to Terms with an Unexpected Tragedy

I always thought I was a pretty normal person. I felt like I had a normal childhood, I did normal things as a teenager, transitioned into a normal adult. At the age of 25 I expected to continue being a wife and mother, running my business as a Life Coach, and live this normal life I thought I had.

Then one day I got a cold. It was a pretty basic run-of-the-mill head cold. And I started to have something happen with my vision. I couldn’t describe it well at the time but I knew I couldn’t follow moving objects with my eyes. I figured it was just related to my head cold, probably had something to do with sinus congestion. I went to an Urgent Care just to check things out and the doctor said, “It’s probably just from over-strain or some muscle fatigue. Take Ibuprofen and you should be fine.” But something wasn’t fine. I sought out another appointment and then another and that would lead to something else and then a scan and then an MRI and then it happened.

I was sitting in a doctor’s office and the neurologist relayed to me that I have a very rare and aggressive disease that will blind and paralyze me without the indefinite treatment of chemotherapy. In an instant I became everything but normal. I was no longer a normal wife, mother, and entrepreneur.

I became the person with lesions in her brain and spinal cord. I became the person that doctors are trying to keep alive by killing certain parts of me. I became the person who, without the invasive treatment of a chemotherapy drug, would die before my daughter started kindergarten. I became the person that had an everything-but-normal disease that no one had ever heard of. My life path went from normal to one of fear, survival, and faith.

We’re coming up on the year mark of the diagnosis (how has it possibly been an entire year?) and I find myself in awe of how much my life has turned on its head since it happened. I am in awe at the pain my family and I have carried around, but I am more in awe at the growth that has already resulted.

Having this diagnosis has brought our family to our knees. We have cried more, worried more, and prayed more than we ever have. But this diagnosis has dissolved conflict. It’s aligned priorities. It’s trimmed off a lot of excess mental drama that we used to deem so important. It’s shown me my ability to survive. It’s caused me to memorize every inch, every feature, every nuance on the faces of my children. It’s caused me to deeply marvel at what my body can do. It’s caused me to get a puppy! Because, why shouldn’t I?

People with this disease literally wake up one morning blind and paralyzed. So I won’t let one moment pass without recognizing the beauty of what I can see or the capability with which I can move. But what’s amazing is that it doesn’t have to take a disease to do this. The truth is, we all could get hit by a bus tomorrow. This disease doesn’t necessarily put me at higher risk of dying. It’s just caused me to be more thoughtful about it.

Having a life event that I had deemed as “abnormal” has just revealed to me more of who I already was. It has pushed me beyond limits I thought I had. Because of that, it’s revealed what’s most important to me. I look at life a little bit different now.

So today is just a normal day. I can see. I can hear. I can walk. I can hug my kids. I can kiss my husband. I have a house I love, a business I am passionate about, and I keep all the important things close. Now things are just a new normal. A deeper normal. Lots of highs, lots of lows. At the end of the day things will always be awesome sometimes and hard other times. I’ve just accepted that my version of awesome and hard is going to be different than I thought it would be at this stage of life. I wouldn’t trade the lessons I’ve learned for anything, and if so much growth can happen in just a year who knows what could happen in a lifetime!