I picked up a camera and my world changed

- By Pippa Scott

Since I was a little girl I have struggled with Generalized Anxiety Disorder and Anxiety attacks. As fellow anxiety sufferers will know - at the heart of anxiety is a fear of losing control. The intensity of this disorder (although always present in some form) gets worse and better and is triggered by many external and internal factors. On the most severe occasions it has prevented me from leaving my house – a prisoner in my mind and literally my own home. The last time this happened we were living in Connecticut and had just moved out of NYC. The hustle and bustle of NY City living had started my downward spiral but by the time we re-located it was too late and I had what I can only describe as a full on nervous breakdown. My entire body was beyond tense 24 hours a day – I had night terrors at night (nope they are not just for kids!) and anytime I had to leave the house my heart would race a million beats a minute, I had trouble breathing and I shook like a drug addict on withdrawal. I turned to painting, CBT and Yoga to try and heal myself. After 4 months I started to feel more “normal”.

Fast forward to the birth of my daughter on July 5th 2014 and I was, to be real, scared shitless that the postpartum period would trigger another breakdown, but thankfully the baby blues was all that reared its head.

Then on April 29th 2016 my son was born. We were living in San Diego, CA and my pregnancy with him had been the polar opposite of that with my daughter. Instead of feeling a sense of peace when pregnant with my daughter – I now felt angry and panicked. In my first pregnancy there was not a single spot of blood but with this pregnancy I bled on and off the entire pregnancy and the costs of my many labor and delivery visits totaled the cost of my eventual birth. I was sick as a dog and to be frank, I was miserable and to top it all off I could not breathe. I later discovered that was because my son was a big baby! My son’s birth weight was 9lbs 5oz. Just before they wheeled me back to the OR room – the nurses decided to take turns guessing my son’s weight. One nurse called out 9lbs 5oz and I laughed and said “not likely.” She should clearly start gambling.

At 5 months I decided to offer him some formula so I could move away from exclusively breastfeeding and start a new job. He chugged down the 6oz I offered and then 2 hours later started to vomit. I rushed to the pediatrician who gave him Zofran and diagnosed him with FPIES. An angry rash broke out all over his body and they sent us to ER. They said he was allergic to dairy and there were a ton of other FPIES triggers to avoid (they provided me a long list of foods he could not even try until after age 1). Every food introduction now was to take 2 weeks instead of 3 days. I felt an enormous amount of that famous mom guilt and this was the start of the tipping point for my mental health.

Then 10 days later I noticed his stomach seemed swollen (even the doctor observed it kind of looked like he had swallowed a basketball) but the doctors claimed there was nothing to worry about. My son went from a fairly happy baby to one who would scream every time he ate. He struggled to have any of his bottle and would desperately take a sip and then push it away and continue screaming and crying. He had 10-15 stools A DAY and they all smelt like the worst sour smell you can imagine. My mom instincts sent out every red flag imaginable but the Pediatricians and Gastroenterologists kept claiming it must be “gassy distension” and as babies’ GI tracts were immature, this was all normal behavior. I could not accept this and must have brought him to the doctor 5 times – all to be told he was good and judged for being a “neurotic mother”. I finally had enough with being ignored and drove my son 1.5 hours away to be seen by a nurse in another clinic. I remember she touched her hands to his stomach and he screamed in pain. I thought good at least she will see this behavior but shockingly she turned to me and smiled and said “babies don’t like my cold hands”. I politely but frustratingly corrected her and said “no he is in pain that is why he screamed”. She reluctantly agreed to run some blood work and we started our long drive home.

My phone rang about 3 hours later and it was the Gastroenterologist. “You need to bring your baby to the hospital now - his liver levels are very high and his albumin is concerningly low”. That started a 2-week hospital visit from hell. Every morning they ran lab work and biopsies and MRIs and a colonoscopy trying to work out what was going on. The Gastroenterologist would stop by in the morning and say something like “despite all the albumin transfusions we are giving him, he seems to not be able to absorb it and today we are looking at Metabolic disease, or we will need to do a biopsy to look for (name any scary sounding disease)", and then they would walk out of the room and I would not hear anything for at least 24 hours. It felt like holding my breath for 2 weeks straight as I waited for every test to trickle back in. Each test that ruled out a disease brought me great relief but the fear of the unknown was terrifying.

On the 13th day, the specialist picked up the marker and wrote on the board behind my son’s crib a long medical word. She said that her and her team feared he might have this rare intestinal disease and that they only had the technology to diagnose this in LA and we would need to be transferred. Before she walked out she said “don’t google the word”. I quickly asked her “what would this mean?” to which she responded “he would need to be fed through his veins for the rest of his life”. I slumped in to the chair that my husband had so graciously slept on for most of our hospital stay and cried. I could feel the panic attacks creeping back in and the weight on my chest was making it hard to breathe. I felt entirely out of control and totally helpless.

By some miracle, the next day for the first time his levels stabilized and he started to get better. He no longer screamed when eating and was back to being my happy baby. They continued to monitor him and then decided we could go home. Over the course of the next few weeks they continued to monitor him but his levels were excellent and like a bad nightmare the doctors prediction started to go away. Well at least for the doctors it did.

10 days later he developed a strange rash that no one could identify. It looked like mosquito bites all over his trunk. I felt like the nightmare was starting again and to cut to the chase, after 3 skin biopsies, more lab work and seeing 3 highly trained dermatologists - he finally got diagnosed 4 months later by a 4th dermatologist who was not in network and over an hour away. I would have done anything for my son and to save my sanity too. Those 4 months were obsessive and I read every literature I could on rare skin diseases in dermatology. They first wrongly diagnosed him with scabies from our hospital stay, and I kind of went crazy and threw most of our stuff away. Then they said it was a pest issue. We called 3 pest control companies and quite frankly I was impressed at how little they did find. I became friends with the City’s entomologist – who advised me that insects were often blamed wrongly for things in the medical community. They feared it could be an auto immune problem but it turned out to be “Eosinophilic Folliculitis”, a rare but benign skin condition, and I could finally breathe once again.

At this wonderful moment my brain finally gave out. It’s like it managed to keep going just long enough for my son and his needs and once he was finally okay, I was not. Depression and paranoia started to creep in. My house just felt dark to me. I had night terrors every night again, and every time my son cried, I felt like someone was stabbing me. I could not breathe. I became obsessed with his stool and how often he went and if one day it was 4 times instead of the usual 1-3 I fell on the floor in tears. I kept finding things that were wrong with him and I lived in a constant state of panic. I didn’t feel like myself- it was terrifying. I would have my husband constantly check his stomach to make sure it was soft and not firm and if any new rashes came up I would have an absolute meltdown. By this point he was also allergic to egg and tree nuts. I was falling apart. My mind believed it needed to stay super vigilant at all times to protect my babies but I was too exhausted to keep up with that. At the heart of it all was my irrational desire to be in control and nothing over the past few months had given me any sense of control. Control was an illusion but it still was my false sense of security and it had been pulled from under me.

Then I picked up a camera and my world changed. I become aware of a renowned “Documentary Family Photographer” Kirsten Lewis and the more I read about her and the “Documentary Approach” the more it spoke to me. Here was a creative tool where I could really challenge myself to let go of my controlled reality and instead embrace the chaos and unpredictability through an artistic outlet. The last year has changed my life. I began the climb out of my downward spiral and taught myself to embrace the beauty of the “unapologetic life” (to quote my mentor Felicia Chang). Things did not need to be pretty or organized to be worth documenting. Life did not have to be happy to be worth living and it certainly was not something shameful to be hidden away. My fear of failure as a mother was making my mental state worse. My life was good enough exactly as it was and I wanted to give that same gift to other families. I was tired of the social pressures on mothers to be this perfect Pinterest versions of themselves. That wasn’t me. I swear, my anxiety makes me more irritable than I wish I was and yet I love my children with the fiercest heart imaginable. Documentary Family Photography allowed me to embrace our reality as it was and stop fighting as much for control. It helped me to see things differently in the midst of postpartum depression and PTSD and I hope it can help my clients in the future in that same way. Now when my son cries I reach for the camera – and there is finally some beauty in it too.