In my early twenties, I was asked how I wanted to celebrate my birthday. Because I was particularly ill that year, I said that I may not be able to do anything. I had been living with ME/CFS, or, Chronic Fatigue Syndrome, for several years at that point. The severity of symptoms fluctuated, and I did whatever I could to conceal the illness. I pushed hard, trying to hide the fact that I was constantly in pain, dizzy, weak and shatteringly exhausted. Finally, I decided that my birthday celebration would be a day of quiet, low-key pampering. But how would I entertain my guests this way? Well, I began what became known as a Pamper Party. Everyone was to get together and receive foot rubs, massages, facials and spiritual psychic readings, if they so wished to participate.
Later, as the years went by, my Pamper Parties became THE yearly event to attend.People began planning months in advance to be a part of this exciting, yet relaxing indulgence. I was so proud to be able to give back to the people who had given so much to me. I would always say that, for my birthday, I didn’t want to receive gifts, but I wanted to give gifts. If it wasn’t for my friends and family, I would never have made it through the hardest times of my life. For that, I thought it perfectly appropriate for me to celebrate my life one day a year, by giving back to those who helped me to stay alive.
In the very last year of my twenties, I had a routine ear surgery, which was supposed to be 20-30 minutes long. The doctor was scheduled to patch up a small hole in my eardrum. I remember the day of the surgery, I had a horrible feeling come over me. I asked the doctor to only do the minimum procedures possible. “I don’t care what you see in there,” I said. “Only patch up the eardrum. If you see an old lady knitting in my ear, leave her there! If you see cobwebs, don’t touch them. Please, only do the very minimum!” I explained how dangerously sensitive I was to chemicals, so the surgery posed a major threat to my health. He chuckled and told me not to worry. He shrugged and promised to do the very minimum. Well, 6.5 hours later, I woke up and my entire body was agonizing in heaviness and pain. I could barely move, and there was this overwhelming taste of plastic down my throat. Something was very very wrong.
The doctor was nowhere to be found, but a nearby nurse heaved a sigh of relief that I was awake. She informed me that the doctor decided to temporarily remove my earlobe, drill holes in my skull and remove all of my inner ear bones. I woke up during surgery and they pumped me with drugs to paralyze my body, then more drugs to give me amnesia. The nurse assured me that everything would be okay now though, and that I had shiny new inner ear bones made of metal, and my ear was all back in place. She said I could go home and live on pain meds for a while –as if that were a fun thing to do. But what happened to me was an example of people —more specifically, medical professionals— not understanding the seriousness of this disease. They had no idea that what they had just done to me, ruined my life.
If they had only been better informed! If they had only cared enough to listen to the patient! If they had only showed compassion! …The pain medication, even divided into tiny fractions of the original pill size, caused a reversal effect. It made me feel more pain all over my body, so severely that I went into convulsions and passed out. I had to heal these horrific injuries with small doses of ibuprofen, and a lot of teeth-gritting prayers.
I was so weak, I had to crawl to the bathroom. Eventually, my body just gave out and I could no longer move without assistance. I could no longer work. We had to move into a basement apartment, where I became thoroughly bedridden. The basement had clanking pipes, which sounded like monstrous pots and pans crashing against the walls every time someone ran the sink or flushed the toilet. Just before we moved in, the basement had flooded with sewage and became infested in black mold from the carpet to the ceiling.
My partner, Randy, had to clean it all with buckets of rubbing alcohol and soap. Bleach was too strong for either of us. Randy was also living with a serious illness, which once left him bedridden. I cared for him then, and now he was caring for me. He lifted my head to spoon feed me; he held me up in the bathroom; he held my hand through ambulances and emergency room visits; he witnessed the abusively neglectful doctors. Everything I had worked so hard to build, was gone.
There I was, literally bedridden under ground. My bed was below ground level, and I could barely move. Randy was scarcely able to work as well because he had to be home to feed and clean me. When he was gone working, I was alone with no doctor’s help, no comforting words, nothing but my tortured mind. Randy would leave Enya playing in the room. Her ethereal voice gave me something comforting to hold onto.
I found myself on my 30th birthday, alone with no answers, and honestly, no hope. My Pamper Parties were now a thing of the past. My entire life as I knew it was a thing of the past! That year, when Randy insisted that we celebrate my birthday in some capacity, I responded in defeat. But how could we celebrate when I wasn’t even able to move? I remember crying in the dark, my eyes facing the ceiling, and it came to me.
Other people were just as sick, just as alone, and just as scared as I was. If only we could somehow reach out to each other. Maybe, just maybe, if we all pulled together and sent our weak, quiet voices into the world, the people might hear us in one loud chorus.
Together, we may just be able to save ourselves. Maybe not as individuals, but perhaps as a community. Yes, we needed a day. A Day of Visibility!
I told Randy that the way that I wanted to celebrate my life, was through raising awareness about the life that I had lost, and the life that I achingly dream of having once more. If we dream big enough, and push hard enough, we can help the millions of other suffering survivors who deserve to be celebrated as well!" - Dr Franky Dolan
Imagine if everyone effected by Invisible Diseases had a day to pamper themselves, all while raising awareness. Wow, what a wonderful day that would be! So many people get shunned and pushed to the sides when they are ill. Not this day! This day is all about the amazing survivors of ME/CFS, Fibromyalgia, Dysautonomias, Lyme Disease etc.
This is how Day of Visibility began. June 6th is our official Day Of Visibility!
Years went by and I got better enough to sit up, and move around a bit more. We started a site called FaeFactory.com. There, we use art and advocacy to raise funds for medical expenses and daily living needs, while surviving this relentless disease. We also raise hope and awareness for the countless survivors of the world. We began InvisibleDiseases.com to feature stories and resources all about people living with these misunderstood diseases.
Now, we give awards to survivors who help others with Invisible Diseases. June 6th is our official Day of Visibility, where we raise a ton of awareness, and announce our award recipients. This has become the greatest achievement of our lives, helping others to survive. Every year, we need more and more people to come with us and help raise awareness and support our cause!
To all people with Invisible Diseases, and all people who care for those with Invisible Diseases; you have the most valuable voices! The best way to raise awareness, is simply by telling your stories! Let people see the humanness within your disease. What did you dream about as a child? What do you dream about now that you are ill? Or perhaps you care for someone who lives with Invisible Disease in their body. How has your life changed, and how can we help each other through this? Give to yourselves, unapologetically! And tell your stories, proudly and loudly!
Sending love to you all ~