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, I slowly start to have numbness down one side of my body for 15 minutes, followed promptly by numbness down the other side for another 15 minutes. And on the really bad episodes, the numbness is paired with slurred speech and inability to read. It is only after all these precursors conclude that I am hit with the severe migraine head pain that has me laid out for hours, sometimes days.
Doctors at the time were quick to recognize the numbness and slurred speech symptoms as mini-strokes and pressured me to log everything I did and ate every minute of every day, saying if I continued having these migraines, I could have permanent brain damage, so I needed to find my trigger. It didn’t take long for us to find it: estrogen! Once I stopped the newly started Ortho birth control, I went from having multiple migraines a day to once every day or two. Next was the soy. Soy is 85% estrogen, so once I cut that out, I was only having migraines once a week or so. Finally, dairy! They were giving cows estrogen to produce more milk and it was in the milk, and cheeses, and ice creams, everything with dairy I was eating. Once I cut back the dairy and made sure what dairy I did consume was hormone free, the migraines went away! That is, until 2012-ish, when I had a sudden rash of migraines after consuming a large amount of red meat. Did you know that’s the time period when American farmers discovered if they feed their meat cows and pigs estrogen, they produce 20% more muscle mass? The estrogen goes right into the muscle and stays there, and that’s the meat we eat. Now if I have red meat, I have to make sure it’s hormone free.
So it is now second nature for me to check ingredients on everything I eat. If someone offers me food and the ingredients list isn't nearby, I just politely decline. The irony is, in my younger years, I always bragged that I would rather eat yummy food and die young, than eat healthy and live a miserably long life. I guess my body had other ideas. It’s making me eat healthy! I don’t want to.
Integration of Art and Health
Between the major things stated above, plus my asthma, my adult onset acne, my eczema, my severe scalp sensitivity, and, my mental health issues of depression, anxiety, ocd, and germaphobia, I can strongly relate to many people I encounter in life. Knowing that the way I suffer with severe chronic bone pain is extremely uncommon, just helps me be so much kinder and more understanding to those around me. I rarely take for granted anything in my life. I am a keen observer of human behaviors, and I have noticed that those who suffer the least, take the most for granted. It’s hard to understand the beauty of everything around you, when you have never had a taste of it being taken away from you. I’m sure part of the reason I am an artist is to show my appreciation of everything I observe in the hopes that others will stop and look and appreciate them as well.
I recently did a watercolor painting of raindrops on a window. Hundreds, if not thousands of raindrops. I had been trying to take a picture of a cool tree I saw when sitting in my car on a rainy day, but the camera kept focusing on the raindrops instead of the tree. When I looked back through the pictures to see if any of them had the tree in focus, I realized the tree was in focus in every picture, just upside down in every raindrop. I had to do a painting of it. It was so amazing! Could I have shown the photo to friends and family for them to maybe or maybe not appreciate in that instant and then forget in the next? Sure… But it’s so much better when I devote months of work into the painting of it, infusing my emotions and feelings into every brush stroke. Watching people come up to it to look closely, then telling them it’s a painting. Having them be surprised; “I thought it was a photograph! That must have taken forever to paint! How did you do that?!” I can take these fleeting moments that most would never notice and make them into works of art for generations to appreciate and remember. This is why I do what I do.
I see or experience a thing and I create a work of art to the best of my ability to represent it. I would love to say my art takes my pain away, but that would be a lie. It’s more accurate to say, my art gives me a place to divert my mind from the pain for a time, but it comes back to me ten fold when I stop creating. So while many who watch me would say I’m a “workaholic” or a “jack of all trades”, I would say to them, no, I’m just keeping myself busy and doing what I want to do in the process.
I know that I wouldn’t be the person I am today if I didn’t go through all the trials and tribulations of the last four decades of my life. Living life the fullest. I can do what I want to do without questioning it the moment I think of it is a way of life that I have actively inspired others to live. I enjoy tattooing and talking with people who are struggling. Sharing my story has oftentimes helped them break out of the box they trapped themselves in. Too many people say “Someday I will…”. Heather says, “Do it now! Stop thinking about it and just do it!”. You never know if you’re going to die tomorrow, all you have is today. I am thankful for all the hardships that have put me in this mindset. Life is too short for “somedays”. Stop making excuses and just do it.
