Funny, You Don’t LOOK Sick or Disabled!

What does sick look like? Or Disabled for that matter? If it’s a sickness that gives one swollen glands or hives or spots — like measles — that can be pretty obvious. If someone’s in a wheelchair or missing an arm or leg, or on crutches, that can be pretty obvious too. But did you know that the great majority of people living with a chronic illness (most of which can be very disabling) have what are called ‘invisible disabilities?’ And ‘invisible disabilities’ are no joke! The worst thing is that people can’t see them, so they don’t want to believe you HAVE them! Yet according to statistics gathered by the people at Invisible Illness Awareness Week (based on data from the 2002 US Census Bureau) 96% of people who live with an illness live with an invisible one, and 73% of people who live with a severe disability do not use devices like a wheelchair.

Do I look Disabled in this picture below? I sure don’t look happy! I was newly blind, brain-injured, sick as all get-go. I’d been working in my live-work art studio when a neighboring industrial installation filled my studio with invisible fumes and vapors of a highly toxic substance and that changed my life! I was certified blind a few weeks later. I felt like I’d been run over by a fleet of trucks. Everything hurt, and at that early stage, I had no idea that the blindness was not from the chemical fumes damaging my eyes, but due to the neurotoxic damage to the part of my brain that processed sight! I felt like I had a spike running through my head and a headache that was 24-7. And I, a lifelong dancer who’d been working on a new performance piece, began to fall down as I was rehearsing it! And yet every Dr that I was seeing would read me bad vital signs, tell me how ‘little we know about toxic chemical exposure,’ tell me to come back in a month or 6 weeks, and invariably end the visit with “But you LOOK great!” It took quite a while to find a scientist who helped me understand I was having akinetic seizures, also called drop attacks or drop seizures, a type of seizure that consists of partial or complete loss of muscle tone that is caused by temporary alterations in brain function. These seizures are brief – usually less than fifteen seconds. But I started to look like a 6 year old with perpetually scabbed knees.

“But you LOOK great.” Right. Like THAT helped. They didn’t know what to do for me except to try to prescribe me pills for the pain. “Are you nuts?” I’d say. “My liver is so overloaded from the toxic chemical exposure and you want to give me MORE toxic drugs? Do you want to KILL me?” I was lucky I knew that–my late father, a pathologist and medical professor had a special interest in the liver all his life. He wasn’t a one-trick pony–he had a few other interests: nature and tennis. So I learned a lot about medicine, nature and tennis from him. Kind of like a mechanic’s kid knows cars, even if they don’t become a professional mechanic themselves.

“But you LOOK great.” That’s something a lot of people with invisible disabilities hear and it both hurts and frustrates them. Once a friend who’d been helping me around and driving me to my Dr’s appointments, knowing how hard it was for a once vibrant super-healthy dancer and artist to be adjusting to being so sick and blind, who’d watched my health and energy plummet, who’d seen me pass out, was so sick of hearing Dr’s say “But you LOOK beautiful!” to me that she angrily burst out to the Dr “And she’ll make beautiful corpse too!”

And some of the Dr’s would take her aside and tell her I probably wouldn’t live very long. Some of them–if they were really honest–would tell me that too. That was 20 years ago. I had no intention of dying yet. I figured, if this was going to happen to someone–I was probably better equipped than most to deal with it. I’d grown up looking at organs in jars on my father’s desk and in the specimen museum down the hall from his office. I’d grown up reading his medical journals to him aloud as he sliced tissue onto slides. I earned my allowance by finding articles he needed in the medical library and curried favor with him by going through the journals that came in the mail before he did so I could point out to him what articles he might want to read. That came in handy to a teenager about to get in trouble for something teenage. I became an environmentalist as a teenager too. So I learned a lot about toxic chemicals in our environment and I had a bunch of medical professors I knew who could explain to me how they affected us humans and other living beings.

I also knew how to do medical research and since none of the regular Dr’s knew what to do for me, I knew I’d have to figure it out myself. And I did. But that’s another story…

How about here? Do I look Disabled here?

If you look closely, you might notice the tube in my nose running to an oxygen tank on my back. That was about 3 years later. I’d found some specialists who knew how to help me and they realized that the neurotoxins I’d been exposed to were literally suffocating my whole system so they got me on supplemental oxygen. I was on supplemental oxygen 4 1/2 years. You might also notice that long white cane in my right hand. Those 2 props made it easier for people to realize that I was Disabled. Even though I still LOOKED GOOD. I’d spent a year and a half at the Los Angeles Braille Institute learning how to be blind and how to use talking computers so I could research how I was going to get better. You’d think that Dr’s would want to research that. But most of them just wanted to give me pills I did not want to take and tell me to ‘accept, adjust, and go live in a board and care facility.’ That didn’t sound like a good idea to me at all. At Braille, I’d heard the Getty Museum was looking for blind people who loved art to help them make their collection accessible to so that blind visitors could come enjoy with their families. So I jumped at the chance. I ended up being their first blind docent and a storyteller there. THAT’s a whole other story too… But you might notice that arm holding a club touching mine. There are tricks that blind (and other Disabled) people develop to allow us to participate in life so we can function. That subtle physical contact from my storytelling partner gave me signals as to where I was or which direction to move in.

How about this guy? Does HE look Disabled?

Joey Terrill came into my life when I first became blind in 1998, going through the maze of social services, sent to the Braille Institute, and a gamut of agencies that were supposed to help me. He was an artist sent by the Center for the Partially Sighted, whose opthamologist had certified me blind. They said someone would come to my home to show me how to organize things so I could stay in my own home and live independently. In came an angel with the kindest, most gentle, yet very pro-active demeanor. He taught me many things and gave me the ability to access my art materials so I could keep making art, how to mark things in my kitchen so I knew what they were, and so many more things. He made regular visits until he knew I’d be OK. He’d call me now and again to make sure I was still doing alright.

When I got back my sight, more than 5 years later, and made a surprise visit to his studio during an open studio event, he turned out to be as beautiful as I had imagined him… and his art… oh… his art… but all that is another story, too.

Joey’s lived with HIV for more than 3 decades. He’s what’s called an ‘asymptomatic long-term non-progressor.’ Despite the challenges of dealing with years of experimental drug treatments, and the care he needs to take to be well, he’s spent his life doing GOOD, teaching independent living skills to visually impaired individuals like me, working with the dually-diagnosed, homeless mentally ill community on LA’s skid row, being a passionate advocate for people with HIV/AIDS, working in Public Affairs and Advocacy for AIDS Healthcare Foundation (the largest non-profit provider of HIV care and treatment in the US,) working with the Magic Johnson AIDS Healthcare Foundation Bus–just one of the many programs that empower and HELP the many people dealing with AIDS for whom Joey Terrill is also and truly an angel.

People with challenges don’t just sit life out. We deal with our challenges and help others face their’s. For me, a newly blind artist, Joey’s compassion and empowering attitude gave me the strength to adjust and keep creating. And serving my community. That big fancy piece of paper we’re holding? It’s a little something the Los Angeles City Council presented me with in 2010: a Resolution in honor of the work I’d done for the Los Angeles community–while I was blind and after I got my sight back. For ‘ushering in a new era of artistic vitality, natural health and wellness, and empowerment’ to the communities I lived and worked in.

You see–invisible disabilities can be tricky. The Invisible Disability Organization defines them as ‘a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker’ but can cause debilitating pain, fatigue, dizziness, cognitive dysfunctions… hearing and vision impairments.’ These aren’t always obvious to you, ‘the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations, and vary from person to person.’

Among the many ‘invisible disabilities’ people are living with: Chemical or Traumatic Brain Injury, PTSD, Epilepsy, HIV/AIDS, Diabetes, Myalgic Encephalomyelitis (ME/CFS also known as Chronic Fatigue Syndrome,) Cystic Fibrosis, Attention Deficit-Disorder or Attention-Deficit/Hyperactivity Disorder(ADD/ADHD,) Learning Disabilities (LD.) And all of those are things that most people will have no idea one has! Some of them are more easy to diagnose through the various conventional medical technologies that exist, some of them are ‘managed’ with drugs–err–‘medications,’ although my personal preference leans toward natural medicine, which for me, worked when nothing the pharmaceutical world had (or presently has) to help me live a meaningful life and feel better.

Today I feel blessed I can see. It took me more than 5 years to get back my sight and good health when another serious exposure to neurotoxins, this time in the form of black mold, nearly decimated me. There are so many people these days who suffer from conditions brought on by this type of ‘low-level toxic exposure.’ And still, so many Dr’s ‘know so little about’ and many diagnose incorrectly, leading people to suffer and search for themselves for years just to find out what’s really going on with them. There are all kinds of informative and support groups sharing via social media today. Many still write to me asking for information so I keep studying and sharing and writing about Natural Wellness. And that ME/CFS sometimes gives me plenty of time to stay home in between my adventures in the paradise I now live in. But, really, it’s a small thing compared to what I’ve already beat.

People, including some Dr’s, still find it hard to see that there is anything wrong with me. Because I still LOOK good. Which is typical for the type of invisible disability I live with. For one of those diseases that MD’s couldn’t find tests or answers for –so discounted as a ‘made-up disease’ for years, there’s been a lot of research done around the world in recent years. Worldwide, there may be as many as 17 – 24 million people with ME/CFS.

So there are some Dr’s who have learned about it, and more are learning. Though they have a lot of theories (and my own is that a lot of it comes from the very toxic environments that we live in) they don’t really understand what causes it. But they do understand how many people need their help. Thank goodness, especially among the younger Dr’s who have come to understand how pervasive environmental illnesses are in the world today. They are learning. All around the world. Even here in Ecuador where I now live.

In fact, I recently met one, and we are going to see how we can help people in the community we live in find better ways to deal with their own health issues in a more natural way. Because we both know that drugs can ‘treat’ or ‘manage’ disease. But like Hippocates taught 4000+ years before the Age of Pharmaceutical Medicine  came along, the human body is a wonderful self-healing mechanism, given what it needs.” And those things are natural. So, stay tuned…

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