“We are builders of our own imagination”

I have many chats in the car with my daughter, but the one I had this past week was especially thought provoking for me. She said, “We are builders of our own imagination.” I never imagined my life years ago would we where it has taken me today. I remember the day that my then primary care doctor told me the results of my MRI at age 29 and that it showed Multiple Sclerosis.

I had a headache. That was my primary symptom at the time of my diagnosis, a reoccurring headache. While that alone is not a hallmark sign of MS, I remember thinking I was going to find out I had suffered from migraines. The look on my mom’s face said a whole different story and I knew that she knew this likely was the diagnosis. What a long road I had already traveled with my health that included a myriad of symptoms that were all over the place. What was my life going to be like now? I was newly married. How at age 29 was I diagnosed with an incurable disease? I no longer could imagine what shape my life would take ahead. I felt internally paralyzed.

Some moments in life you never want to relive and other moments you want frozen in time. During my car ride with my daughter this week, I thought how I was so grateful for the little moments. The many little moments in the course of a day that you cherish and you realize that you will soon forget them, but this was a moment I did not want to. My daughter has an incredible imagination for her age. Her favorite thing to do in life right now is to PLAY. And my favorite thing to do in my life is to be PRESENT. I will soon be turning 41. It’s been said that the years start to fly by and I now more than ever get what that means. But I must say that I am getting good at living in the moment. We were having our bedtime prayers the other night and I talked about memories with her and how I was loving this time with her and particularly the moment I was in of laying with her in bed and my hand holding hers. We were facing each other and talking. I alluded to the fact that I wanted to remember this moment with her, but I knew that I may in time forget it. She said, “You can follow your mind, but you can always follow your heart.”

That was a WOW moment for me. I said, “excuse me,” and I got up quick and I went out to the living room and wrote it on a post it note because I did not want to forget what she said. It was a telling reminder that as time goes on in life and things may become hard to remember that my heart will remember these times. There is a distinct separation to me. I know that my mind will fail me over time. I have severe cognitive issues at times with my disease. This has been especially true in the last few years. I even went to Cognitive Rehabilitation Therapy. There is such a thing if you can believe it? I was surprised. I went for quite a few sessions with a physical therapist who specialized in strengthening my mind. Honestly, I do not feel it did very much, but I walked away with a few better ideas of how to go about my day and preserve my cognitive energy throughout the day. I do know as I age that my mind will start to fail me more and more. My heart though is another story.

The essence of who I am you could say is within my soul. And while that is true, I find that my heart has shaped me as a person and it still does. At times, it may want to guide me into unchartered territory, but all the qualities I love and cherish I carry in my heart. Not in the physical sense, but metaphorically. You can see the essence of a person based on the quality of their heart. My daughter’s heart is beautiful. She is an old soul wise beyond her years of age. I told her the other day in the car that her imagination can take her anywhere. And for me, I imagine my years ahead being one where I try my best to stay ahead of the game and that means for me that I view my life at times like a long journey on foot. Some days I speed up my pace, but most days I have a steady gait. I stop at times to smell the roses so to speak. I stop to marvel at the beauty of life along the way. I question everything. I continue to learn. I hold my interactions along the journey to be all meaningful no matter how positive or negative they are. I view every person as a teachable interaction for me and that I will always learn from that individual whether I want to or not from those I meet along the way. I know that my life on this side of Heaven will have an end someday, but I determined now more than ever to make those moments along my journey count. Not every day will be wonderful, but it will always be beautiful in its own way. Even in the messy times of life.

My MS could’ve broken me and made me live my life as the woe is me predicament. A victim to my disease. A hopelessness view of dread of my life and of each day to come because there was so much unknown. And while the first two to four years after my diagnosis I was tormented by how I was going to find my identity again as a person and what my life would be like if I was just me and not defined by work or the many other things I worked so hard for. I basically had to divorce myself and realize that who I was up to age 29 was still there, but she was now different and it was okay. I grieved the loss of the life I knew before diagnosis and took off to find a new path for myself. I now imagine my life ahead as a beautiful challenge. I want to live with determination and be in the moment while facing the hardest mountain, that mountain being my health. And in the midst of all of it be the best daughter, wife, mother, and friend I can be.

I will end this entry with another piece of the conversation from the car ride with my daughter. At this point in conversation she already had said what I thought was one of the most amazing lines I had heard, but then she added to, “stop and think of our problems.” She had just finished talking about using our imaginations and after we do we need to think of our problems. Not just think, but to ‘stop.’ and think. In my mind that meant to be PRESENT.