By Fila Paragas.
As we are getting closer to the mid-term elections this November 2018 and CRPS Awareness Month, I have previously decided that I would not vote for anyone, least of all those who only pretended to show compassion, but who did not care for the extreme pain and horrible conditions of CRPS or formerly known as RSD, and in particular the circumstances surrounding my CRPS case with the UN World Health Organization (WHO), the supposed leader in health. And here is why…
For anyone who may have read my memoir which took me a few years to write due to CRPS conditions, a photo of me from muscle dystrophy and barely living, fired illegally from WHO with no income and disability, and on the brink of home foreclosure and hardly unable to pay my bills. CRPS can affect anyone and unknowingly I was unlucky.
In pain, I was trying to survive and function each moment of the day, just simply trying to breeze through the day literally speaking with the basics of living. Very weak and bedridden most times and zombie-like, feeling as a frail 90+ years old woman, I kept a brave face for my family and friends. I cried profusely every day from the torture of pain and related complications I could not understand. I could hardly walk a few steps or any short distance, withstand a prolonged standing, and stayed bedridden between many very long pauses. No walker or wheelchair ever provided. Pain consumed me. I fought to survive from day to day.
Yes, I wrote for help to the highest-level Administrator, the WHO Director General, a medical doctor, who received my desperate call for help, but she never replied or saw me. I dragged myself out of bed with crutches for support to see the WHO Human Resources Director, WHO Chief of Cabinet, and more. Disguised under the cloak of compassion, no one really helped me. I was betrayed and lied to by medical professionals and others, colleagues of WHO doctors, WHO Insurance, and Accident Insurance and more. Further abuses only worsened my CRPS conditions and almost took my life.
Since 2010, my friends and family sought help, and with the exception of POTUS’s reply email, no one bothered to reply. With more delay from WHO, I went in desperation on the verge of tears with my daughter in front of the security gate at the US Mission in Geneva to get help. Fired with no income and struggled to pay groceries and mounting bills, I was trying not to collapse in the middle of cold winter 2012. But no one came to help us, and did not even reply to my letter. Not the Honorable Ambassador. Not the Honorable Health Attaché. I was dying inside and outside. Ironically left stranded in one of the richest countries in the world, I was struggling to survive. Waiting for help that never came – I hung on.
No one cared!
In California and in the city of San Francisco, I sought help from my elected officials to the Congress, being one of their constituents.
My family and I even traveled long distance to Washington, D.C. We searched and stopped to see our Senator Dianne Feinstein. I said we came a long way, but was told by the staff that she could not see us. We saw her in real life as she walked past us. Apparently, she was too busy! Disappointed, we took the picture anyway in front of her office to commemorate the event. The only reply from her office referred me back to the World Health Organization. I choked from disbelief.
At the office of another Congress member, Rep. Nancy Pelosi, despite numerous visits by me, family and friend, no help was given. I was given a list implying that I should run around different places in San Francisco, indeed for someone like me, with debilitating conditions and in pain of CRPS. Her office chose not to get involved. Never able to see her, I received a copy of her book, Know Your Power, as a souvenir – a token after several visits. I gave my printed book. But I just could not bring myself to read her book yet.
My elected Congress members have let me down! In my opinion, they also have let down the chronic pain patients and pain community. I never went back to them again.
I honestly could not bring myself to forgive those who have hurt me and displaced my family, or those who have turned their blind eyes, have participated, or have allowed the abuses and atrocities to continue.
Actions do speak louder than words.
Life with pain is cheap to these Congress members. I do believe that many legislators, and others have not gotten their facts right and are ill-advised, or simply could never going to understand pain patients, or incapable to do so. Some of them have no compassion, or misguided compassion, and cannot empathize and never can, until perhaps one day during their lifetimes when they might have to confront their own chronic pain for themselves.
As chronic pain patients, families, and friends, we have to vote for those who truly care for us and pain community, and even more so, for those who are truly concerned for our well-being and proper care, and not be compromised and blindsided. The officials should be elected because we have some trust in them to do good things in the jurisdictions they are to serve. If not, they have failed us. We could vote them out of office. And we should continue to speak out with our collective voices.
To me, my elected officials have let me down! I can only speak of my own personal experience. They will not have my vote ever again. Pain goes beyond party lines and affects anyone young and old. We must have the decency to do better than what is happening now to the pain patients!
We must vote wisely!
Fila Paragas is a former UN/WHO official. She wrote her illness memoir after her long suffering from chronic pain conditions from bone fracture in the foot and her efforts for recognition of Complex Regional Pain Syndrome (CRPS), by her former employer, the World Health Organization (WHO) in Geneva, Switzerland. Her memoir recounted her long journey with the medical community and others to reflect the poor knowledge of pain by those involved. Her E-book is on Amazon Kindle in both English and Spanish. For more on the book and the author, click here.
Thank you Daily Mail article of July 25, 2018, by Stephen Matthews for bringing the story and heartbreaking pictures – the dreadful plight of Kayla Hansen in Arizona with her CRPS and many devastating effects. To her and all who are suffering everywhere, my heart goes out to you.
For Government, Policy, CRPS, RSD, Chronic Pain, Pain, Fibromyalgia, Women, etc.