Yes, there is such a thing called a medical mystery, and I am one of them. This is probably one of the hardest articles that I have ever written.
I have went back and forth, struggling to choke up the words as a tear always seems to be on the verge of escaping my eye. This may be just a term to some, but to me, it has been my life.
A Medical Mystery | Life Dealing With Doctors
The fact is, when you are a medical mystery you are viewed differently, even by doctors who are suppose to give you that smile and bedside courtesy.
You are viewed as an enigma. A puzzle that no one can figure out. What happens to puzzles that can’t be figured out? They get pushed to the side.
That is what I am. A puzzle that has been pushed to the side and forgotten about. The best that doctors can do is make educated guesses as to which medications I should be on and prescribe me a “cocktail” of pills for me to take everyday.
Because when you are a medical mystery this is all they really can do for you. Make you as comfortable as possible and try to treat your symptoms the best they can. That is just the reality of the situation.
And don’t misunderstand me, it is not like these doctors are stupid or like they are not doing their job, because they are. It is just that when you don’t fall under the “NORM” of things they usually don’t have that much time to work on your case alone.
Time is money, and they didn’t go to college for 12 years NOT to earn that nice living they have always dreamed of. Plus they also have to be there for other people who they can help as well. But where does that leave people like me?
Well, it leaves people like me always wondering why. Why do I wake up every morning in pain? Why do I walk funny and have to use a walker at times? Why do I shake uncontrollably for hours on end?
Being A Mediacl Mystery Comes At A Cost
Sometimes we don’t get the answers that we are looking for, so you just got to suck it up and continue on with your life. That is really the difficult part. Continuing on with your life full of uncertainty.
You can cry, you can shout at the skies, you can curse everything and everyone around you, but at the end of the day it is just you. Just you who knows how you feel. This is the most humbling and lonely feeling one can have!
It does not matter how many family members or friends that are around you, you are alone. Alone in your pain. You feel like a child in a dark empty room. Alone, and scared!
I have felt like this for a long time. I mean, how many times can you tell your family and friends that you are in pain. To look into their helpless eyes of sympathy and know that you are the reason for bringing down their mood.
That is the truth. You can’t express that you are in pain without making someone else around you despondent and feeling helpless. After a while, people will associate that feeling of depression with you.
Then they drift away. Slowly at first. Sometimes so slow that you barely notice it. But eventually it happens. Then that little kid in the dark room turns on the light to find out that there is truly no one there. That you truly are alone.
That is what it is like to be a medical mystery. You are left alone. Alone in your pain. Alone with your thoughts. Alone with your fears. Alone as you watch the world move on without you.
I have lived in a dark place in my heart for a long time now. After I seen people drift away I started to push people away just because I didn’t want anyone around when I was hurting.
It was my preemptive strike to make sure that people would not associate me with sadness, or view me as helpless. I would rather have people be mad at me then to feel sorry for me.
So I pushed, and pushed hard. I pushed what few friends I had away and entered a world of darkness. I became comforted by this darkness. Numb to the loneliness. I cherished that dark room.
When you live in pain everyday your one goal starts to become escape. Escape from the world that has left you in pain. Escape from the reality that this is your life and there is nothing that you can do to change it.
So I went, and for six years I escaped the pain. I escaped my life of waking up everyday in pain. I escaped the loneliness. I escaped the hurt I caused my family and friends by pushing them away. I escaped the doctors and their tests. I escaped.
But when one only seeks to escape and focuses so much on that that everything else in life fades into the past, you get lost. That is where I found myself. Lost.
Lost and surrounded by people who would call you friend right before they stick the knife in your back. I now realized that I welcomed that knife. I desired it. My final escape.
In the mist of the darkness, I saw no light. No hope that I could claim as my own. No way to flee the torment of my reality. Like a ship without a compass I had no direction. I just floated along, my existence only defined by my pain.
Then came a faint shimmer of light through the mist in the darkness. A light that was faint, but visible. I shielded my eyes and proceeded to turn from that light. Back to the darkness that I had grown so fond of. Back to my place of comfort!
But the light became a sliver in the back of my head. One that I could not ignore. A child that was meant to be mine. A child that would face the same dark room that I had lived in for so many years if I did not turn back towards the light.
This was not a feat that I could achieve alone. I needed help. I needed to find my compass and turn my ship around before I lost what little humanity I had left.
I prayed. For the first time in years I prayed. I asked not for strength, nor for healing. I asked for guidance. I asked for a lighthouse.
God answered my prayer. He sent me to another world. A world that was not touched by the darkness that I had become accustom to. A world where time did not stand still but moved forward.
A place where my medical mystery had not destroyed everything that it touched like a plague on this world. I was worried that this new world world not accept me. I was worried that this plague of darkness would touch people here and spread like a disease.
I had not learned to fully trust God yet, and the idea of poisoning the last place that I could truly call a sanctuary was a hard fear to overcome. But for her. For the child that was about to be mine. I had to trust God.
I went to this island away from my dark and bleak world. There I found my friend who helped show me what the real world was like again. He showed me how far lost I was and he brought me back. He gave me my compass.
A Medical Mystery | Finding Peace Inside Of Me
Being a medical mystery you can’t count on peace to find you. Sometimes you have to find your own peace. The peace that comes from becoming truly humble. The peace that comes from letting go.
That is what I had to do. I had to let go of my worry of the future. Let go of the worry of one day never walking again. Let go of the past mistakes, and let go of the darkness that I had kept in my heart for so long.
I had to let it go if I wanted my child to have a life in the light. It was not an easy road by any means and I thank my friend for showing me what was truly important in my life!
I decided to go back. Not to the darkness that came from my own heart, but to the darkness that I had created in my own world. The only light I had at that time was the love I had for the woman who carried my child.
This world of darkness was filed with demons. Demons of my past ready to drag me back into the darkness. I looked up and prayed once again, this time for protection. Protection from these demons.
God answered my prayers. He shielded me from the demons that I was surrounded by. He protected my new family. He protected me.
For two years I found both peace and light in a world of darkness. For two years I truly found joy with the wife that I loved and the little girl that was more beautiful then anything that I had seen on this earth.
I wept. Not out of pain or loneliness, but out of joy and peace. For the first time in a long time I had found peace. I entered the light and I was able to take the ones that I loved with me.
A Brave New World
I had faced my demons in that dark world and with the help of God I was guided to a place of peace that I could only dream of.
Yes I still had the pain, but not the darkness that once resided in my heart was defeated. Washed away by the blood of our Lord and Savoir.
It was time to leave this world of darkness. To say goodbye to my demons once and for all. With the blessing of the Lord we found a means to leave the darkness.
I found the world of light that I had been searching for. I found a place where the demons did not exist and my darkness had not touched.
The serenity of this world was grace poured out from the Lord. For the first time in a long time I embraced this new world of light.
Being a medical mystery means that you are going to face trials and tribulations in your life. It means that the world will not understand you nor have the answers that you seek.
Don’t let darkness fester in your heart like I did. Don’t push your family and friends away like I did. Instead, embrace them and let go of your worry of the future.
The article that inspired me to tell my disability story was Jon Morrows: On Dying, Mothers, and Fighting for Your Ideas. Thanks Jon for giving me the strength to tell my story!
What does it mean to be a medical mystery? It means that there are no answers that this world can give you. So embrace the good that is in your life and let that be your light.