Healing After Health Crisis
I don’t know she does it. I’d be so angry. Her poor family. I’d be so scared. You think you have problems…..
Perhaps, you’ve uttered some of these when you know a fellow mom is facing down something big, something unfair, something that is threatening her world or even her life. We don’t know. It’s a perspective we hope to never have. It’s one, however, we can learn from.
Three incredibly resilient women are giving us this gift by sharing their stories of personal health crises in their own words.
The holiday season is a time to be grateful for what you have, but what does gratitude even look like when you’ve been through hell and back — and may have an unknown road ahead. We asked them to share exactly that.
Unstoppable
Jaime Giordano loved to be active. From running and teaching bootcamp to lifting regularly and trying new classes, it was a way of life. It was also a way to deal with the stress of having three young kids and have something built into her life that was just for her. A sudden and shocking health episode changed all this. Here, Jaime shares her journey and how she found gratitude along her toughest road to a finish line.
A random Thursday
A little over a year ago, I was coming off a 10K that felt great and starting to work with a running coach for an upcoming half marathon. As a group fitness instructor, I taught early morning online classes and was always in motion throughout the day. I’m the default parent, so I do morning and after school duty, activity carpooling, dinner and even sometimes bedtime routines all on my own. Not that I’m not complaining, or maybe I am…but looking back on those days now it all seemed so easy, and I was so freaking clueless for what was to come.
On a random Thursday, I noticed some chest pain and tingling in my fingers, so I went to a local urgent care. My chest x-ray and EKG were normal, but they wanted me to go to an emergency room to have my troponin levels checked to rule out a cardiac event. So, I did as I was told and that was clear too. They gave me some medicine for reflux and sent me home. I drove myself home and two hours later I couldn’t use my left leg. My husband and I were confused – I had just left a Boston Emergency Department and they didn’t find anything seriously wrong, so maybe it was just a pinched nerve. I tossed and turned all night as my leg was too restless to actually sleep, and I fell trying to get up to use the bathroom. I pretended all was good as my kids went off to school and I sat in the kitchen, letting my husband take the lead getting everyone where they needed to be. Then we headed to a different Boston ED – where they called a stroke code pretty quickly.
I can’t even tell you how many clinicians swarmed my bed in the ED hallway, it was truly a scene from any hospital drama show only it was my husband looking on with tears in his eyes as I was clearly failing the assessments they were completing. My MRI was normal and there was some miscommunication regarding my two-hour MRI testing after which they sent my husband home saying it was a neurological issue and would be keeping me overnight. Then they sent me back for one more MRI and when I came out I learned that I would be heading to the ICU because there was a blood clot in my T2 (thoracic spine).
I got to the ICU just before midnight. I was alone, my phone was dead and I was so unbelievably scared of what was going to happen to me. Was I going to be able to walk? Is this going to get worse? Will my kids be embarrassed if I need a cane for the rest of my life? I had so many questions and no answers yet. It was just the beginning of an intense treatment protocol.
First, I had a drain in my spine and an arterial line with medicine to increase my blood pressure. I was so uncomfortable from the lack of spinal fluid and the elevated blood pressure. I didn’t want visitors., I couldn’t even focus on reading text messages on my phone. I truly was just lying in the hospital bed wondering how the hell this was my life now. The plan was to repair the damage to my spine by increasing the blood flow to that area and then figure out how a healthy, active 41- year-old ends up in this position. While I wouldn’t be able to walk at home, I remember crying to my husband to take me home and that I’d deal with not walking if the pain would go away. At some points, it seemed like the ordeal wouldn’t end. I was sent home after six nights in the hospital.
Slowly, but surely
At the time of discharge, I left with the knowledge that I had bilateral, chronic blood clots, but not a blood clotting disorder. The reason for this is still unknown today. I had a PFO (a hole in my heart valve that was supposed to close at birth) and the likely scenario was that a clot traveled through the hole and lodged in my spine. Several physicians told me that I would be able to run again. I rolled my eyes at them and just assumed they were being nice.
I sat in a chair outside my front door and surprised my kids when they got off the bus. It was truly the most emotional time of the entire experience thus far. They went to school on a Friday and didn’t see me again until the following Thursday afternoon. Months later, we were still dealing with the anxiety that left them with.
I had physical therapy at home for a few weeks while I waited for an appointment at Spaulding. It was humbling to go back to very basic bodyweight exercises after being a fitness instructor for the past couple of years. Exercise has always been an important part of who I am and yes I like the health benefits, but it truly is a key component of my ability to function as a human and that was pretty much just ripped away from me without any warning. I chose not to ruminate on the unfairness of this (too much) and I focused on slowly building my daily steps back up, knowing that movement and fitness had to continue to be part of my tool kit to deal with stress and anxiety. Plus, it was part of my identity and the piece that wasn’t about other people. So, I did my best to keep moving, but if I got too ambitious, I paid for it the next day and would be too weak to get up.
I didn’t want to run again. I knew I’d be slow, I thought I would trip. I was in great running shape when this happened so what if something happened again? What if my heart can’t handle the higher rate that I usually hit with runs? Somehow, I took the first step and ran on an anti-gravity treadmill at physical therapy – it was wild and so very emotional, a moment I won’t forget.
One of the other challenging parts of my recovery was that my husband who never exercised, let alone ran…had started to train. I understood the health and mental benefits of running and knew he needed to keep going, but that was quite painful to watch especially as I struggled to figure out how to walk more and not get too tired just from that while he started to ramp up his mileage and enjoy an activity that had been a regular and happy part of my life not too long ago.
In the end, I had to let go of my ego. I didn’t have to be fast, but I had to try. My kids were watching and they were very much aware how important running and exercise had been to me. At times, it felt like my family (husband and mother) were fixated on me running to prove that I was “cured” or something. But in the end, I did it for me. My first outdoor run was a lap around a local track with my husband beside me playing Eminem. It was a good day.
There’s nothing more motivating than hearing people share their Boston Marathon journeys - and it was that day that I convinced myself I was ready to run an actual race. It would be on my terms, not for time, just because I could.
Go time
Race day was exciting, I could feel my competitiveness coming out and knew that I was ready. When it felt tough I just kept telling myself “you get to do this.” Ironically when my motivation and energy were draining, Unstoppable by Sia came on my playlist and this has been one of the songs that always motivated me in the past. During the song, I was also passed by someone wearing a shirt for Brigham & Women’s Hospital – the place where I wondered if I would ever walk again – and just that combination really pushed me to dig in and carry on with my run.
I’m just over a year out from the day I was admitted to the hospital and I find myself forgetting that this all even happened. I’m almost in denial that it even happened. I do find myself using the reasoning of “I get to do this” as my motivation to go for a run or wake up for an early strength training class. I’m not 100% and I will never be, but that’s ok. I can run, exercise and keep up with my children and to me, that’s enough to be grateful for.
All Heart
After enduring four difficult rounds of IVF, Ali Barton got pregnant. She and her husband were elated and excited to start this new adventure after many disappointments. Almost six months into the pregnancy, Ali was suddenly hospitalized. Here, she shares what unfolded — an ultimate lesson in grief, gratitude and heart.
Always trust your gut
November and December are months that always cause me to pause and reflect on the gratitude I have for my life and my heart. Two weeks before Thanksgiving in 2013, I was hospitalized at 21 weeks pregnant. I was in acute heart failure, and learned the following week that the only treatment for my heart disease- an autoimmune condition called endomyocardial fibrosis- was a heart transplant.
It was recommended to me at that time that I terminate my pregnancy. This pregnancy was the result of four different brutal IVF cycles. At the time of my IVF, I was already in heart failure, though I had received a misdiagnosis and was told I could proceed with a pregnancy.
Early on in my pregnancy, I knew that something was wrong. I was massively swollen, as if I was nine months pregnant. I was getting winded going up the stairs at my house or walking my dog. I was open with my doctors about this, but many of my symptoms were blown off at the time, and I was told that I was fine. My biggest take away from all of my medical trauma is to always trust your gut, and if you feel that something is truly wrong, get a second or third opinion.
In 2013, I was a therapist in private practice, and a fitness and yoga instructor on the side. I loved my life, and was very content with my marriage, my new pregnancy, and my work. Being hospitalized threw me into a very negative mindset. It all happened so fast that I had no time to process any of the grief that I felt about spending the rest of my pregnancy in the hospital.
I spent Thanksgiving, Hanukkah, Christmas, New Years, and Valentine’s Day at Brigham and Women’s. My future felt very unclear to me. I was very much in denial about my medical situation, and thought that maybe once I gave birth, I would be fine. Things declined rapidly after I gave birth to my amazing son, Ethan , who was born at 3 lbs. 1 oz. I went on to receive my transplant when Ethan was almost 6 months old.
Not in the game
The hardest part of my entire experience was being sidelined from the things that I love. I am happiest when I am moving. I have always been very active, and being confined to a hospital room was incredibly challenging for my mental health. I found that I needed to have a daily routine in the hospital, and I developed a routine for each day to keep me focused on my recovery and the positive things that I had going for me in my life.
Recovery was tricky. I had an infant who woke multiple times in the night, and some of the side effects from my new medications were debilitating. However, the benefits outweighed the costs. To be able to move my body freely after my transplant (no IVs or or machines) and to not need to elevate my legs all the time felt incredibly freeing. My lips were no longer purple, my hands and feet were no longer blue and freezing, and I did not feel like I was constantly suffocating.
How do you do it?
When Ethan was three years old, we were lucky enough to be able to do IVF and use a friend as a gestational surrogate to give birth to our incredible daughter, Jessie. My heart beats for my children, and I wouldn’t have it any other way.
There have been many bumps in the road throughout recovery. Young women are more likely to have complications with heart transplant, since our immune systems are healthier in general. My body has identified this heart as being a foreign invader many times, which has led to hospitalizations and increased medications throughout the years.
People frequently ask me “how do you do it? How do you stay so positive?” The reality is, I’m not into toxic/forced positivity, I’m into living my life in the best way that I can while being a positive role model for my kids. I don’t get angry at myself if I have big emotions, I accept that it’s normal, and I should! I like to give back to my community, and support other people going through medical trauma. I want to be the mom that can play with my kids at the playground, go on bike rides and hikes, etc. I coach my son’s soccer team, and I love keeping up with his sports addictions! My kids keep me going.
“ I do not fear the day that I need another heart transplant (which I will- they don’t last forever), I fear how hard that will be for my family and worry about the level of anxiety that they have when I am in the hospital.”
My transplant changed my outlook on life in many ways. I would love to say that I do not ever sweat the small stuff, but that would be untrue! I thought after my transplant I would appreciate every single moment, but I also at times can feel a deep sense of overwhelm and stress with balancing all facets of my life. What I have learned to do is reel it in, and ask myself how much does the little stuff really matter? How much will this moment matter two years from now? Or even 2 months from now? Usually the answer is, it will not! I stress out about little things just like any other mom, but I have learned in many ways to go with the flow and be a little bit more flexible, because I never know what is going to happen on any given day.
Grief and gratitude are two intersecting things that I have experienced for 10 years now, since my hospitalization. There have been many points in my recovery where I think “why me? Why do I have to deal with this shit?“ but at the same time, I feel so incredibly grateful for my heart donor for checking yes on her driver’s license. I would not be alive today if she had not, and that feels too painful to even think about.
I think a lot of people who come out of medical trauma think that they need to be grateful in every single moment and can’t have any sort of grief or anger. That is simply not feasible or fair to ourselves. I think a very normal part of recovering is to feel sad and angry, but to hold onto the gratitude and love at the same time. That is me in a nutshell! I feel grateful every day, but I also have all the other normal emotions that come with being a busy mom with ongoing health issues related to my transplant. When we inflict guilt on ourselves for having negative emotions, the pain from the guilt feels even worse than riding out the emotion! This is one of my main points of focus as a therapist, to work with people on accepting their emotions as they come up with no guilt for feeling the feelings! Of course, it is not healthy to ruminate on negative emotions, but self-judgment can be just as emotionally devastating.
I wish I could say I had it all completely figured out, but the reality is, I’m at a point of acceptance in my life where I feel incredibly grateful for the health that I do have as a result of this transplant, but I still allow myself grace when I feel all the other big emotions.
To Boston And Beyond
Julie Critser was a busy mom to two kids under three, navigating a big move from Ohio to Boston and adjusting to becoming a SAHM after years of working full-time. She was so in the weeds of life that she wasn’t overly concerned when an odd symptom popped up. She figured she’d be seeing her doctor eventually. But a lunch with her husband’s colleagues suddenly launched her into a whirlwind of appointments and an unexpected diagnosis — one that would push her mentally, physically and eventually to a big starting line.
This might be awkward, but…
I ran my first marathon in 2009. That day I said that I ran 2 marathons - my first and my last. I viewed completing a marathon as an item to check off my bucket list before my husband and I started a family. I ticked off the training miles in the months leading up to the event, but every long run was viewed as a chore and endured until I could reward myself with some indulgence when it was over. I got to the start line poorly trained and mentally ready to be done logging hours of running on the weekends. You can guess how the race went.
We went on to start our family, welcoming our son in January 2011 and our daughter in December 2012. We moved our little family from Indianapolis (home) to Boston in the following summer of 2013 for my husband, Paul, to begin his residency in pediatrics. This was an insanely hard year for me. I went from working full-time supporting our family while my husband finished medical school, to staying home full-time with a toddler and a baby all while moving away from our family.
I noticed a fullness in my neck in the spring of 2014 and with no other real symptoms planned to ask my primary care doctor about it at my next well visit. A few weeks later we had lunch with some of our new friends who we’d met through Paul’s residency program. The next day at work his friend pulled him aside and said, “This might be awkward, but I sat across from Julie at lunch yesterday and her thyroid looks enlarged to me.” Knowing it was noticeable to someone else and not just me, we scheduled an appointment to see my doctor sooner rather than wait.
The next several weeks included doctors’ appointments, ultrasound imaging and finally a biopsy which came back positive for papillary thyroid cancer. I had surgery right away to remove my thyroid and many cancerous lymph nodes in my neck. Later that year I did a round of radioactive iodine treatment, and the following summer of 2015 I had a second surgery to remove additional cancerous lymph nodes. In between the surgeries and treatment, we were in the throes of daily life with young kids and a husband in medical training - a true “surviving not thriving” time of life. That year is still a little hazy in my memory. What stands out to me so clearly was the overwhelming feeling of fragility when my young family needed me, and the overwhelming gratitude I felt for the outpouring of support from our families and community.
Runner’s high
In 2016 my youngest started preschool, I had a whole year of good reports from my doctors under my belt, and I had regained my energy. I was anxious to do something for myself, and with the encouragement of my husband, I decided to sign up for the BAA medley of races - 5k in May, 10k in June and half marathon in October. It had been several years since I’d been able to carve this kind of time out for myself. Not only did it feel amazing mentally, I was crushing it physically. I got the hair-brained idea to apply to the fundraising team at Dana Farber to run the Boston Marathon in April 2017.
I spent that season logging miles on the streets of Boston surrounded by people who shared a passion to make a difference in the world of cancer care. I made close friends with people I otherwise would never have met and found that my body was strong if I put my mind in the right place. I crossed the finish line on Boylston Street more than an hour faster than my first marathon 8 years prior and with the help of our amazing support network, added over $13k to Dana Farber’s cancer research fund. I had never felt so alive. Remember how I said I’d never run another marathon? In shifting my perspective and giving my running purpose I found true joy in the endeavor. My experience facing thyroid cancer as a young mother gave me that perspective. What a gift.
Since then, I have run three more full marathons and 8 half marathons. I’ve qualified for Boston twice (2020 was held virtually due to a global pandemic… I will finally toe the line in Hopkinton as a qualified runner in 2024, God willing!). I have found a home in my local running community in Cincinnati where I’ve made lasting friendships with people who share this hobby. I have learned how to recognize when to push my body and when to rest, that it’s ok to have bad days and that there is always joy to be found if we choose to look for it - even when things feel hard. I’m not sure any of this would have been possible without a shift in my perspective.
Grounding in gratitude
In 2021 I had another surgery to remove more “pesky lymph node activity”. I am on daily thyroid hormone replacement for life. I have ultrasound scans & blood work every 6 months to monitor my progress. My prognosis is more like a long-term chronic illness. My doctors believe that I will likely always have traces of microscopic disease in my neck and that from time to time they will show themselves. We will continue to monitor and it’s very likely that I will need more surgery or other treatment down the line. This has given me a lesson in how to be present and how to deal with uncertainty.
There has been plenty of physical struggle with this illness – the pain of acute recovery from surgeries and the shift in my energy when having to adjust thyroid hormone doses. However, the uncertainty has been the most challenging part of my experience. While I am able to move about my days “normally”, there are times when the anxiety bleeds through. This is particularly hard around my biannual check-ups. My thoughts sometime lead to wishing I didn’t have to sit in waiting rooms, spend time scheduling appointments or chasing medical bills/insurance claims. I can’t help but worry about when the next surgery or treatment will be needed and how it will interfere with life whether training for my next race, a family vacation, one of the kid’s milestones, or starting a new job.
“When these feelings of anxiety or injustice take hold, I find it helpful to list the things I am grateful for. Some days this comes easier to me than others. However, I have found that practicing gratitude grounds me. In every phase of this crazy journey I’ve been on with thyroid cancer, there has been an undercurrent of love and support. When I choose to focus on that, I find peace.”
So, in closing, I’d like to share my gratitude list. Here goes, in no particular order…
· Modern medicine & those who dedicate their careers to its advancement
· A fresh pair of running shoes & body glide
· The many care providers I’ve worked with in the last 9 years
· My family - the many ways they’ve supported us and always love us
· A good cup of coffee
· My dog - the best snuggle pup around
· My kids - who give me a sense of purpose and a love unlike I’ve ever known
· Friends who share my joy in running and make the miles fly by
· Sunshine on my face & fresh air
· My husband - who knew I needed to find something for myself. Who makes me feel safe and loved.
· My body - for being resilient
· For you, who is reading this and sharing in my journey. May you find gratitude in whatever you are facing.