The Fear Speech
By: Karen Richards
Massachusetts state house Rare disease day February, 29th, 2016
In 1933, a great man by the name of Franklin Delano Roosevelt made his first inauguration speech in which he pronounced that; “The only thing we have to fear is fear itself.” Trying to inspire the American people during a time of depression, it was a compelling statement, that would forever be remembered, not just by Americans, but by the world. It is often when I remember these wise words of FDR. I keep them close to my heart as I am fighting a battle in which I must not allow fear to meddle. I suffer from many rare diseases including: Complex Regional Pain Syndrome, Ehlers Danlos Syndrome, Dysautonomia, Mitochondrial disorder and Mast Cell activation disorder. I have had 18 surgeries and a countless number of procedures. For as long as I am capable of remembering, I have been fighting a constant battle: a battle against my rare diseases in which bravery and strength have been necessary to my disposition. This has never been an easy fight. There have been many moments when I thought it was over. I so vividly remember as a little girl wishing that I could grow wings and fly away, fly away out of my wheelchair, or maybe even, out of this world. There were many moments along my journey, which I will never be capable of forgetting. I will never forget the time I was told that I was dislocating my shoulder for attention, by an Orthopedic Surgeon at Children’s Hospital Boston, who was supposedly the best. I will never forget the damage that doctors’ decision caused, not only to my shoulder, but to my heart. I will never forget the 7 hour surgery it took to repair my shoulder. I will never forget sitting in a wheelchair my entire 4th grade year, watching other kids playing on the playground, because of a misdiagnoses. I will never forget being misdiagnosed with a psychiatric disorder at the age of 10. I will never forget being sent to a mental hospital in the state of RI where I was treated like a piece of trash on the side of a highway. I will never forget when they finally started me on blood pressure medication, realizing that it wasn’t a psychiatric disorder at all, but I was fainting and having seizures when I would stand because of low blood pressure. I will never forget my mother losing her mind with grief after a local doctor told us that although I may die, his hospital would not approve of the risky surgery I needed to save my life. I ended up traveling to Washington DC to get this surgery, not because I wanted to see the monuments or the tourist sights, but because that was what I needed to do in order for me to enjoy what had previously seemed to be the God given right of living. More than anything, I can never forget the fear. The fear that existed in myself. My fear of suddenly getting sick again and needing surgery, the fear of people misunderstanding, the fear of acceptance. One aspect of human nature is that we always fear the unknown. Rare disease is unknown, and therefore there is a lingering fear, which surrounds it. I saw this fear not only in myself, but in people’s eyes, in their nature and how they treated me. I wish for many things to change regarding rare disease. I wish that the standardized fear of rare disease did not exist. I wish that my family and I did not have to travel for all my medical care, that no doctor would deny a patient out of fear. I wish that insurance companies would cover all my medications and surgeries without questions, that they would not fear rare disease patients. I wish that politicians better understood how to help the rare disease community, that they would not fear and ignore the very real political issue of rare disease. It is because I wish for all these things, I will never stop advocating. I will never let my patient voice go unheard. I will stand loud, yelling towards the stars until my wishes come true. I am able to stand here today only because I have faced my own fears. For a long time, I feared rare disease more than anyone. For a long time I was so scared and I did not want anything to do with my disease. I was a marionette being controlled by my fears. 5 years ago, if you had asked me, my family, or anyone who knew me, if I would ever become an advocate for rare diseases, they would surely say no. I stand here only because I learned to face my fears. After years of anguish, I have learned to overcome my rare disease. To say I have faced my fears without significant struggle would be a downright lie. I suffered greatly before my stubborn mind accepted that being sick was not the end of my world. It was as if I had been castaway to a deserted island. I was so utterly alone, I was so scared of my disease. The greatest fear I carried was of acceptance. I did not want to accept my illness. I wanted to be normal, just like my peers. I feared that acceptance would lead to me becoming nothing more than my disease. As time went on I began to realize, I need not be afraid. I would only be fighting this battle if I chose to. I did not have to fear my disabilities and my rare diseases and I thereby refused to. Some part of me suddenly decided to rise up strong – to rise up against my fears. I let go and I saw the importance of my disease in a different way. It became so much smaller and I suddenly had a voice. It was not the voice of fear, which I had carried for all these years, but the voice of Karen Richards, who had conquered fear. To realize the burden of fear was gone was truly, a sweet serenity. Everyone has a fear of something, and although that fear may seem big to us, it is really so small in relation to what we can accomplish when we face that fear. I faced my fear and I suddenly found myself smashing the limitations that fear had produced, just as they had once smashed me. It is easy to forget it is truly ourselves and our own self doubt that limits us to the small confounds, which we choose to live. It is easy to forget that if we face our fears, we can soar past the moon and towards the stars. Being diagnosed with a rare disease is no doubt one of the scariest and worst things that can happen to one person. Still, you cannot let it end you. I will be the first one to admit, this is not easy – accepting something that is so horrible. Although acceptance may seem painful, I guarantee there is nothing more painful than letting your disease stand in your way. This, has been my personal epiphany. Managing my fear is the best choice I have ever made. Since then, I have long forgotten that I was ever afraid. I have since moved far beyond the island, which I had once been castaway to. I write stories about kids with all types of chronic illnesses and publish those stories on my website. I educate people on rare disease. I help with a great organization called TCAPP, which supports kids in chronic pain. I do anything and everything in my power to help the rare disease community. I hope that in doing so I have helped many people. In 1933, when FDR said “the only thing we have to fear is fear itself.” He was trying to inspire the nation, during a time of great depression and common suffrage, challenging everyone to take action. Today I challenge you all, lawmakers, patients, caretakers, insurance representatives, common spectators, to face your fears of not only rare disease, but in general, just as I have faced mine. Keep FDR’s words close to your heart, as I keep them to mine. I only stand here because I learned to not fear the horrible banishment of rare disease, but rather, to live as though I never knew. This, is how I have found my happiness. And what an experience it is, standing in front of over one hundred people, telling your story, when just five years prior, you would have been sitting on a couch pouting to yourself because there is nothing good which can come out of this awful situation. What an experience it was when I was able to realize, that the details of my illness, which used to coincide with an extraordinary amount of fear, now seem miniscule and unimportant in comparison to the infinite spirit of determination and triumph, which I have now gained.