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Artistry in Adversity: A Glimpse into My Journey

by Heather Pilapil

I am a fine artist, tattoo artist, business woman, wife, mother, and so much more. My name is Heather Pilapil and I was born in Los Angeles, California in 1984. My life has been a real roller coaster in more ways than one, especially as my broken body goes. I’ve been through, and am still going through, quite a few ordeals.

Fibrous Dysplasia

I suffer from a condition called Polystotic Fibrous Dysplasia (FD). After a very athletic childhood, including being a gymnast aiming to be in the 2000s Olympics, I broke my arm diving into the swimming pool in 1996. The following day I was diagnosed with Monostotic FD in my right humerus bone. After a few more breaks of that bone, I had an experimental surgery done where Dr Wenger of Children’s Hospital San Diego opened the bone, scraped out what was inside (not bone marrow), put in a cadaver bone in hopes it would promote healthy bone growth (it did not), and put a titanium rod inside spring loaded to counter any future bowing and breakage (that worked). 

It didn’t take long before my FD started to spread to my collar bone and right scapula. In 2001 a baseball sized bone lesion grew on my right scapula and loss of motion in my right shoulder. Another surgery commenced to remove it, and Dr Wenger discovered the bone had become the lesion, so he ended up building me a new shoulder blade with cadaver bone. In the coming years, it spread to my ribs and spine. 

When pregnant with my daughter in 2008, it spread to my occipital bone and both temporal bones. I now have a fist sized inoperable lesion on the back of my occipital bone. More recently, this last year, I have undergone a multitude of tests since a new lesion in my clivus bone was found. Thankfully, it has been determined it is in now way affecting my ocular nerves. 

As I age, the pain is getting worse. All of the vertebrae in my spine are affected, and I have lesions in several of them, that with time, is causing worsening scoliosis. One of my ribs is also growing with several lesions so its becoming larger than its neighbors. I foresee being an old lady with a hunched back. 

My FD pain is a constant and is severe. I am currently undergoing a change in pain medications to try to get the pain under control after a nationwide shortage of my tried and true. I also break bones quite regularly, but I try my best not to let the pain and injuries slow me down. I’ve learned the more I do, the less I’m focused on the pain, so I try to keep myself busy as much as I can. Also, when I was 12, a specialist told my mom I would be bedridden by the time I turned 18. In my head in that moment, I felt I only had two choices; cry in a corner for the rest of my life, or do as much as I can as long as I can. Obviously I chose the latter. 

I am nearly 40 now and not bedridden yet, and with the mindset that if I want to do something, just do it now, because if I’m stuck in that bed tomorrow, I will regret not doing it, it means I already have a lot of stories to tell. Of course, my art is no different. All of my artworks and creations were devised on that premise. Who cares what anyone thinks? I’m just going to do it and see what happens! 

With all the spreading my FD has done over the years, it is very possible that some day it will spread to my hips and legs and I will no longer be able to walk. If that happens, I am prepared! I will not stop working or close my gallery. When I put it together in 2013, I anticipated the possibility of being wheelchair bound in the future, so I built the gallery to be fully wheelchair accessible. So far, I have not needed that feature, but happily my handicapable clients have enjoyed the amenities. I am proud to offer that for both myself and them.

And this is only the tip of the iceberg of issues this broken body deals with.

Celiac’s Disease

In 2006, after a couple weeks of being unable to eat without losing it, and 3 days of the same with water, I was hospitalized, and found to have the most advanced, severe case of Celiac’s Disease the doctors had yet seen. The damage was so extensive that I had zero cilia left in my digestive tract from colon to stomach. I’m one of the few who almost died from it. When the doctors told me the diagnosis, and I asked what the treatment was, they said, “Don’t eat gluten, and you’ll heal over time.” To which I responded, “What’s gluten?”. Needless to say, there was the stages of grief, and a lot of trial and error over what I could and could not eat a couple years before the “Gluten-free” fad took hold. By then, I had become an expert at it, and was a bit annoyed at people who were choosing not to eat it, because it was such a nightmare trying to figure out what I could and could not eat without getting sick. 

I actually did a small full body nude self portrait of myself after I got out of the hospital to document how emaciated the disease made me.

Once I opened my own art gallery/tattoo shop years later, clients would kindly bring me gluten filled treats as thank yous that I could not eat. That is always bittersweet when it happens, but I know they mean well. Luckily I have many people at home, happy to eat them. As a tattoo artist, it deeply affected my daily food choices. Am I tattooing someone tomorrow? Then I’m not going to try that new thing. I want to try that but I’m not 100% sure it’s gluten-free… Oh I don’t have any clients tomorrow, I can be sick tomorrow. Let me try it. 

But these two conditions aren’t the only ones I suffer from.

Classic Migraines with Mini-Strokes

Not only was I born with a hiatal hernia causing me lifelong acid reflux, but I also have another food-related problem. 

At the end of my 17th year of life, I started suffering from back to back severe classic migraines. A classic migraine with aura like mine actually starts with a visual hinderance of swirling colors that blocks you from being able to see anything. So before a migraine, I am essentially blind for 20-30 minutes. Now there’s no headache at this point, but knowing the pain is coming can be just as bad, and being a visual artist going blind is terrifying. For me, as the vision returns