After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Heart Health Awareness Month

Heart Health Awareness Month

I always find it ironic that (anatomical) heart health awareness month is intentionally associated with the month that we celebrate love, or our emotional heart. Sure, I get the connection, but doesn’t our mental health play a greater connection with our emotional state than our physical condition?

If you ask me, I would say there is a direct connection between our mentality and emotions—pretty much the difference between black and white movies and colored movies. The sets are the same, the script is the same, the actors are the same—but our experience of it is completely different.

As a fan of the black and white cinematography, I can say that I don’t necessarily think one option is better than the other. Black and white films make us focus and process the film differently. When my brain is tired and my eyes are on strike, the black and white films are a welcome relief as the colored movies are almost too much for my eyes to process. Yet, I could not imagine ever seeing Sound of Music with all of that beautiful scenery in black and white, or for a more contemporary comparable, Mamma Mia.

Now, psychologists have argued for years with me that mental health, and therefore our emotions, effect our physical health as well. This is most likely because ever since my symptoms began and I became a quadriplegic, my diagnosis has been unknown. It has been put forward that if perhaps I was more optimistic or saccharine, my physical health and abilities would improve. To which, I have always replied that delusions don’t help anyone. As long as I am open to the possibilities, fully committed to all I do, being cautiously skeptical or delusionally positive makes no difference in the immediate outcome. In fact, since my body most often defies conventional wisdom and does not respond to all that we try, I find it more harmful to my emotional state, of being crushingly disappointed, had I been “hopeful”.

All of the experiences have taught me that much, in how to protect my emotional heart and keep my love of life, and belief in possibilities alive. Sadly, though I have not learned how to protect my physical heart. While I have a plethora of physical heart-stopping tales (literally), and continuous years of living with a racing heart, I can not give any insight as to living with a healthy heart; or even which signs to pay attention to know when to head to the hospital.

To be honest, this is quite annoying. It’s experience without growth. Knowledge without wisdom. Relatability without connection.

To answer your question, dear reader, it’s not for lack of doctors trying to wrangle my outlaw heart. It’s unruly speed is believed to be a side effect of my unknown illness. Just as mysterious, since I became sick at 15 my body does not tolerate most medications—including all of the drugs that could help bring my heart under control. I’ve come to think of it as a palpable way I feel my Elephant.

Which goes back to mentality, that feeds our emotional heart. Life is hard, but it’s hard for everyone given the right light. Our power, our choice, is the angle we choose to set the light we illuminate over our life. This doesn’t mean we don’t feel pain any less, or gloss over difficulty. It’s just making the directorial choices in our own life-film.

As someone who lives a perpetual Groundhog Day, I’m okay with that. My spin today is trying to accept the reality that I am really, really, tired of hearing a doctor say, “we can’t help you.”

My heart—doctors constantly reassure my mother and myself—might be forever fast, but it is strong.

This reassurance for an exhausted soul, seems to be not so clear.

But, as my inner spin doctor and emotional heart in me itch to express, since fatigue and exhaustion are relative states, it will somehow be okay.

The Undiagnosed Disease Network

The Undiagnosed Disease Network