Sheila Brillhart

What happened to that sickly child…???

I have been on an incredible journey. I invite you to travel with me along my journey, to get to know the lessons I have learned. This is my story, my truth, my life.  I would not be the person I am today without having been the person I was.  My severe asthma has affected every aspect of my life, from my relationships, to education and career choices and to how I live day to day. I appreciate the gift of breathe a little more than most and I know without a doubt, Attitude is everything.

Just to be a kid again… The first real memory I have of having severe asthma was sitting in front of a humidifier and taking puffs off a Primatene mist inhaler. I was a very active kid, full of life. I had no idea that my rigorous “pretend” workouts so early in life would help me fight when assaulted by asthma attacks. I was a fighter from day one, dad would say. I was a sickly crabby baby, very allergic to mom’s milk and almost every other kind of milk. Dad swears I almost died of starvation and that’s why I’m such a fighter. As a kid I wanted to try everything everyone else was doing, if I couldn’t do it, I couldn’t do it, but I was going to try. My dream was to be the first women professional boxer. I wanted to fly like a butterfly and sting like a bee. Every day I would punch my boxing clown, go for a walk/run, do pull-ups, push-ups and sit-ups. I never thought of it as exercise. I would wheeze the entire time, trying to ignore the sounds, eventually I would tire out and lie on the ground, finally to make my way home to a good ol’ Primatene mist puff. As long as I can remember I have never known a day without a struggle to breathe.

It shouldn’t come as a surprise that I did everything in my power to hide my asthma. I despised being different, I never talked about it. I thought if I didn’t talk about it, it didn’t exist. The kids knew something was wrong because I couldn’t hide the constant wheezing coughing and gasping. I’d always say, “I’m good” as I gasped to breath, sometimes I would cough and wheeze until I vomited.  I hated the stares, question and feeling different.  As I got older I’d see people smoking and I’d feel so angry and appalled, if they only could breathe with my lungs for a day, they’d never smoke again!

In late December when I was a bit older living on my own in Philadelphia, the temperature changed and I caught a cold. As always I refused to cut down on work, volunteering or social activities.  The cold settled in my chest, did my best to ignore it. I refused to completely acknowledge how sick I was. Mentally I wasn’t ready to accept my reality.  I would calculate the amount of energy it would take to accomplish each task. What was so effortless yesterday was now more than just a challenge. Finally it all came crashing down. My lungs tighten up so tight not even a tiny wheeze could slip through, my chest hurt and the panic of suffocating was starting to settle in. I knew I had to keep  calm, not “freak out” or it would get much worse. I collapsed to my knees barley able to breathe. My manager rushed me to the ER.  At twenty-five I was immediately admitted for my first, of many “tune-ups” in the ICU.  Three weeks of doctors, nurses, respiratory, IV antibiotics, labs, nebs, nebs nebs…a boat load of IV steroids and the vest – a percussion vibrating devise that helps shake things up. It got old really quick so I did what I had to do to satisfy the docs so I could finally go home.  I despised all of it. I just wanted to get back to being my “normal” self.

I was discharged from the hospital but still wasn’t feeling great. I did my best to display the mask of normalcy for as long as I could, nonetheless was exhausted from putting on this performance.  Breathing had become very difficult once again.  I was constantly wheezing and coughing up nasty stuff, my lungs felt like they were slowly squeezing me to death. Each breathe was more and more difficult.  As always thought I could beat the infection on my own, and as always, I was wrong. I dragged myself in again; I was at a point that they could do anything to me, as long as they could help me breathe a little easier. This was no time to win a battle just to lose the war.  I was no longer buying time, I was stealing time.

Springtime had arrived and I was ready to LIVE! Ride my bike, take the top off the car, and go hiking. I absolutely loved to be outside.  I am originally from the dry area of New Mexico, this was my first spring on the wet East Coast, and I hadn’t counted on a new kind of Allergy season. Let’s just say I had trouble staying out of the hospital.  And all the side-effects from the steroids had sidelined me. The endless asthma attacks and constant infection took its toll. I felt ancient, as if my body was falling apart, one attack and one infection at a time.  A lifetime removed from the bubbly full of life women I had become.  I’ve always been such a fighter. But this time I gave in to my illness.  My legs were like noodles from all the steroids and I had developed pseudo gout in both knees so walking /working became super painful.  Life looked grim, I needed a doctor who understood how bad I was, this wasn’t just “asthma” this was “severe asthma” and these docs didn’t have any idea what to do with me.

I needed to be closer to family and get out of that environment so I packed my bags and moved to Colorado. They say when a door closes a window opens, it’s true. I landed a job and found a great doctor at National Jewish that believed in me, believed in more than statistics and someone else’s medical prognosis. I found Dr. Sally Wenzel. She did more than care for me she cared about me, she listened and really believed me; she was really going to help me. You could have knocked me over with a feather when she said, “I think you will qualify for a study we are doing”. What? There is HOPE?  I had been defeated for so long I’d grown comfortable with my disease, it was me. I think without the hope of the trial, my fate was sealed.  It was no small task getting into the SARP trial. Eventually after a few attempts I finally met all the requirements and was accepted into a one year trial. When the trial ended I was back to square one. But, I had a taste of how it felt to breathe just a bit easier.   I was alive not merely existing to breathe.

As time went on Dr. Wenzel would gently remind me to start showing some maturity about when to go in to be seen when I was starting to get sick. She would say, you need to stop being notorious for calling on a Friday afternoon to let us know how sick you’ve been all week. She was always good at giving me plenty of that proverbial rope. It was my one last act of defiance, by rebelling I was in charge, or so I thought. I thought if I didn’t acknowledge being sick it wasn’t really happening.  Sadly Dr. Wenzel moved to Pittsburgh to open and become the Director of the University of Pittsburgh’s Asthma Institute and the subsection Chief of Pulmonary, Allergy and Critical Care at the UPMC. I felt so completely and utterly defeated when she left. My last hope had vanished. No doctor could be as good as she was. Lost in my own recesses of my mind, it felt like it was all such a mistake.  Yet, I always knew Dr. Wenzel did not abandon me, she would call and check on me from time to time and she would have her partner at National Jewish watch over my care. Great doctors don’t just tell you what to do; they make you believe that you can do it. I had the best.

Mentally, I no longer want to be normal, I want to be healed.  Healing was my mantra. I devour any information; holistic, Chinese medicine, herbs, crystals, prayer and even a good old therapeutic message. I’ve always known I will never defeat my disease; it’s my partner for life. I had not asked for it and I was tired of accepting it.  I wanted someone to fix me, once and for all. I felt like I couldn’t let time slip through my fingers anymore, I needed to fix this. I still had a life full of meaning to experience. But, there were those days–many of them–when I would cry out, “I will do everything humanly possible to keep this disease from taking anything else away from me and I won’t allow myself to die choking and suffocating from this disease. I won’t allow myself to be defined by asthma.”  I do believe that the hardest lessons shape our character and define who we really are.  I have severe asthma it doesn’t have me.

My adventures continued as I started to feel in control. My health was better and somewhat predictable. I was ready to conquer the world.  So, naïve I was.  I took my career as a professional chef much more serious. The job of a chef is not an envious one. There’s the army of kitchen staff that needs managing in a hot, loud kitchen and the caterings of 50 to 1500 that require delicious and innovative dishes that must be timed despite their individual intricacies and complications. Being a chef has always required a person to be rigid, somewhat masculine and able to thrive in a tough environment.  It’s always been an industry where you have to make it by yourself; it takes its toll. It can be so stressful and demanding at times, it’s imperative to appear strong and demand respect so the kitchen will run smoothly. I didn’t want someone to say, you can’t hack it! In addition to the hordes of hungry customers I had to be ready for, the NSF inspector who would come through and rip us to sherds.

No surprise in the following weeks, I would end up in the hospital for a tune-up.  I didn’t tell anyone. Denial was my new middle name. I couldn’t bear the thought of colleagues showing up and seeing me hooked to an IV or take my neb treatments.  It was all to mortifying to contemplate.  I would do anything to maintain the appearance of normalcy.  Without missing a beat I was back to work after getting out of the hospital.  My routine started and ended with shower, breathing treatments and IV antibiotics.

As I finish with this part of life’s journey I am fortunate enough to share slices of my story with others.  Only a few will really understand my determination, stubbornness and appreciation for each and every breathe. Severe asthma has shaped my sense of self, how I perceive my own body and my perception of life. I have railed against it, denied it, defeated it and at times was elevated by it. Sometimes, I do look back at my life and wonder, if I could do it again would I change it? And the answer is, NO. I mean I could do without all the drama, illness and disruptions, but I wouldn’t be the women I am now without being the sickly child I was—Severe Asthma and all.