Sparkie Lujan, USA, o post-polio syndromu a nadaci P.R.Y.S. - originální text
The inception of the P.R.Y.S. Foundation was a long and lengthy process.
When you consider the entire dynamics in the creation of P.R.Y.S., you will soon realize that it was/is as unique as the Polio/Post-Polio Syndrome (PPS) illness itself.
Imagine overcoming a house fire, then rebuilding it by yourself. There is no one around at all to help you hammer in the nails, lift the heavy boards,or support you while you hang each drywall board. The incredible hours upon hours of stroking paint on the endless walls you have just built, is exhausting. Imagine the sweat, the despairing thoughts that this new home will never be finished. But you know yourself, and the determination to see success in this challenge continues. Then finally one day, you lay the welcome mat down, open the door and your world begins to finally see the beauty in a sunrise. Just imagine the sigh of relief in knowing you can now begin to live again. Just imagine sitting there quietly feeling exuberance and pride that you have in knowing you created the impossible with your own will, your own dream, with your own power, your own hands. Just imagine!
This is what overcoming Polio was like--learning to walk, breathe, and live again. Determination to be productive, self-supporting, self sufficient.
Now, imagine, the fire and smoke returning again, the walls collapsing, the brick filled mortar crumbling, the paint slowly bubbling and peeling, and no one is around while the shooting of flames destroy what you have created. Imagine no one hears your calls for help, listening to your screaming as the inner pain of what your eyes are witnessing, and no one, but no one hears you. Ashes smoldering, walls now unrecognizable, dreams gone, and the sunrise is now clouded over as the tears flow down your cheeks uncontrollably. And you've no help, no insurance, no chance of rebuilding.
This is the reality of PPS Now imagine that same emotion is occurring in the lives of 1.63 million people in the United States, and no one is around. It was, it is, and it will continue to be our reality unless someone comes forth and puts a hose filled with heart to this sector of Polio/PPS survivors. Thus, the dream, the inception, and the creation of my home, called P.R.Y.S. This nightmare is my reality along with so many others.
I began using a computer to become closer to my son, who suffers from ADHD/ADD. The computer world was his forte, and I wanted to become a part of that aspect of his life. Little did I realize that during this learning process, I would become as integrated into the computer world as he was. Prior to my diagnosis of PPS, I was a business professional. I met many professionals on the Internet. Over a two-year period, and daily conversations with many people, I was able to single out those that had the intellectual, educational, emotional stability, and idles that I have lived my entire life by.
It was a weeding out process of individuals that I had encountered on a daily basis. Soon, I was surrounded by professionals, and educated and intellectual people that shared my value systems, my overall family commitment, and the self-confidence levels of my own personality. We became an Internet family, sharing confidences, phone calls, writing letters in regular mail systems, exchanging gifts for our own childrens personal attributes and celebrations, and sending flowers when family crisis's were apparent. The love grew, along with a commitment that one-day we would meet, and really become a family. Upon my diagnosis of PPS, this sector of friends that I now had called family for over eighteen months, gathered around me, and allowed me to grieve for that which I was losing.
When you begin to understand what the survivors of this illness have endured in the past, and then accomplished in their lives, and then again are now having to come to terms with once more, you then begin to realize they not only are losing function physically, but the emotional balance of who they are--and what they have identified with for their entire adult world simply becomes shattered into a million pieces. Their emotional stability is rocked right off its foundation; their psychological balance is completely disfigured; their physical capacity is drained out of them, and this isn't even addressing the pain that they endure as the nerves, muscles, and tissues begin the dying process due to PPS.
My Internet friends never heard of PPS. When researching on the Internet for their own self education in PPS, the knowledge was limited, a concrete diagnostic direction in treating this illness was almost nil, and the public awareness wasn't even addressed. Polio had been simply stuffed away comfortably in the past, as a historical event that was now non-existent, non-threatening. Even a stamp trumpeting the "Victory over Polio" was printed.
When I lost my job, due to the declining endurance of my stamina, my friends began to see severe depression set in. Over the next year, they supported me through tears, falls, non-committal doctor's diagnoses and appointments. The passing off from one doctor to the next was more like a physician fiasco, than an intervention of medical and modern technology. The reality was in my eyes, as well as theirs, that there was an obvious merry go round of medical terminology that was doing nothing for me mentally, or physically. Time and time again my friends insisted I get medical intervention that addressed all my physical needs. Upon doctor after doctor, dollars after dollars, I was stuck in a battle of "well, we don't know exactly", or "perhaps it is this, let's do more testing" type of physician conversations.
It was at the suggestion of many, that in order to heal myself, at least psychologically; I had to do something with my education, and my business skills. They surrounded me with their love, support, and gave me their word that they would not wander, or leave me alone in this destructive illness.
I then began to have hope that maybe I could become integrated in life once again, and do what I have done all my life, help other human beings. After all, my friends knew this was and is my life's passion. It was then suggested in a conversation one night that a Non Profit Foundation that addressed this illness, and its history, would be something that fulfilled many of my emotional and psychological needs. Its future was then set into motion.
Hours upon hours of brainstorming sessions began, commitments were made, and hope was then restored into my mental state, as my physical condition continued to deteriorate. As each physical loss occurred, so did the birth of a new idea for the foundation. When despair showed its head in my world, right behind it was a suggestion of hope. Many facets of P.R.Y.S. have been created at the same time my physical function would lessen.
The inception of the P.R.Y.S. Foundation on October 25th, 1997, was the rebirth of my business life, as PPS continues to sap away at my core, and the physical woman that I have been all my life. The stronger this foundation becomes, I know the weaker I physically become. The pain physically, is at times barely tolerable, but it doesn't even begin to compare to the pain my eyes behold on a daily basis, as new PPS people come into the foundation. To know that I am not alone, but a sector of ignored individuals that survived a horrific illness in the 40's and 50's, that now have to endure the ravages once again, is the most painstaking holocaust of silence I have witnessed.
The confusion of memory loss, the pain in moving the simplest item from here to there, and the knowledge that the world is ignorant in this illness, can and does render almost as much heartache, as does the reality that we are dying, and no one is listening.
How does knowing that PPS can take your life due to secondary complications that can cause death feel? You first have to ask yourself, how does living feel? Only then, can you compare the two. One spectrum of this illness is the pain, physically, mentally, and emotionally. For me personally, I am terrified at what I have learned, and what lies ahead. Mentally blocking the reality of what lies ahead has become my greatest denial performance yet. I keep saying to myself, that P.R.Y.S. is my hope, my dream, and my mainstay to sanity. I certainly have reservations within the medical community to find the desire to make this a priority illness, and their ability to commit to any concrete treatment just seems to be the most apparent disservice to all of us. I have lost hope in the world at large and their ability to break out of the "holocaust of silence" unless an agency or foundation or caring individual is willing to come up to the plate and force them to become awakened by a powerful enough thrust, and jolt, that would have to be delivered by a PPS enduring victim at the helm of the awakening. I have lost hope that I will ever be able to save myself, or anyone else, unless I personally forge the attack in these areas. Thus, the P.R.Y.S. Foundation and its commitment to uphold all that the survivors know to be truth, when the world is blinded and deafened by it.
From the inception date of P.R.Y.S. until now, I have become more aware of what lies ahead for me in this illness. I have become accepting of the losses I encounter, but the fear remains that one undetermined day in my future, I am going to be gasping for air, and choking when swallowing, unable to move, and become totally immobilized.
As I now experience quietly, as others look away in fear, my world changing, and I am unable to stop the physical changes, but I certainly can and will address the worldly ones. I can endure that which is faltering simply by imagining and dreaming that help is on the way. The depths in which I chose to bury myself in work only quells the physical pain, and burning and throbbing I encounter daily. Taking work breaks only enables reflective quiet time to engage on thoughts of days gone by, and days to come. That in it's self is as paralyzing as was the onset of Polio some 31 years ago.
I know that when this foundation answers the calls of others for help, we are offering our hearts, our souls, and our genuine concern. How do I know this? Simply because this foundation was created out of the friendship others have for me, and the love we have developed over time, over hours, and over tears. No one intentionally named this foundation "The foundation with a heart", but over the months, that is what P.R.Y.S. visitors call it. From devastation, to hope, from despair to living with the possibility that a cure can be addressed, from the trenches of anguish to the flickering of a light in a tunnel, the P.R.Y.S. Foundation Inc. was born. With the love P.R.Y.S. has within the body of members, this foundation will out live us all. I know that to be a reality, and my dream, and with that, I can go forth in this illness, and render a smile to those that helped me create the P.R.Y.S. Foundation, Inc. and continue to work countless hours to awaken a world that continues to be sleeping. One day, my house will stop burning down to the ground long enough to render my dream to be rebuilt.
A brand new home, free of PPS.
