Dancing with Disease: A Memoir About Learning to Sway to a Different Beat

By Gerry Ugalde

Dancing with Disease is the story of a woman diagnosed with a rare autoimmune disease just when she is starting to feel grounded in life. As a new mother she must find courage in moments of intense fear and unknowing.

Instead of trying to understand the intricacies of a complex illness, she turns to her guideposts: motherhood, marriage and fitness.

Her healing process is complicated by a new career as a teacher that is ever-changing, on top of symptoms that appear seemingly out of nowhere.

This is a story of resilience, and of learning to sway to a beat you never chose, but grow to appreciate.

• Language: English
• Publisher: Balboa Press
• Release date: Mar 9, 2020
• ISBN: 9781982243975

Gerry Ugalde

Gerry Ugalde is a lifelong lover of physical activity and the outdoors. As a mother, wife and teacher, she uses the healing powers of fresh air and movement to help the people in her circle balance their days. After the first few years of living with Granulomatosis with Polyangiitis (Wegener’s Disease), a form of Vasculitis, Gerry created her own formula to manage chronic illness so she can live life on her terms. When not teaching high school, she is either swimming with her sons or cycling with her husband and friends.

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PART 1

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THE DISEASE

Shitting the Bed

The morning I woke up to cycle across Cuba (the first time in 2006), I had a weird feeling in my stomach. Nerves? Likely. I was about to embark on a 1,200 kilometre bike trek with only a bike computer and a map. I didn’t have a real plan or a GPS watch: no one except the military did (this was before the days that we all started tracking our every move so we could virtually compete with our friends in the Who Has More Steps This Month? challenge at work; a challenge that is normally won by the person who takes public transit, BTW!).

I remember looking in the mirror and seeing bags under my eyes and feeling SO tired. The drive into Baracoa the night before had been harrowing as we drove through the dark up and over a viaduct full of switchbacks, with no guardrail to keep our little car from going off the edge. One swerve to avoid a stray animal and we would have flown off the mountainside. It was freaky! This was way before motherhood and I was still in my late twenties so there wasn’t really any excuse for bags like that. Sure, I was tired from the travel, but this could only mean one thing: my period. I went back to the bedroom and said to Richard, I have news. I’m not ready to start this bike ride. I feel sick because I just got my period and day one usually makes me dizzy and weak. He understood: Cuban men aren’t shielded from the inconveniences and frustrations of menstruation like men in North America, from an early age they are privy to conversations about heavy flows, crappy sanitary pads and cramps. We both went back to bed for another hour or so in that beautiful deep slumber you can easily fall into when you don’t have any plans for that day. Once we woke up again we decided to get dressed in our cycling kits, go for a tour of the town and try the first climb out of Baracoa. Climbing over La Farola, the viaduct that separates this town from the rest of Cuba is a 21 kilometre stretch to the top. It would take lots of strength and patience so it made sense to have an idea of what our legs would need the next day.

At breakfast, our friend Antonio, who had driven us halfway across the island, showed up at the table surprised to see that we were still there. We told him we had decided to start the trek the next day and would spend the morning touring around. As we got on our bikes we allowed the gorgeous seaside town to dictate which direction we would head knowing we’d ultimately look for the main road toward the capital of the province of the same name, Guantanamo. I had already spent so much time in Cuba in my late teens and twenties and knew so many faces of the island. From dancing in clubs until moments before dawn, to waking up at dawn to do volunteer work in the fields, I knew the island. Baracoa offered a mystical feeling. Being so removed from the rest of the island made it feel almost sacred. We took our time cycling along the seaside streets, occasionally stopping to take pictures, and also realizing we were falling in love with not only the town, but with each other.

Heading toward the mountain we laughed, talked some cycling strategy and decided we would do the first two climbs and then wheel back and look for something else to do. Just as we hit the first climb we looked at each other and in unison asked, Listo? (Ready?) And up we went. The moment the climb started to get tough something came over me. It was as if the intensity of that climb was being beat out by the intensity of the feelings I was developing for this man who was cycling with me. I looked at Richard and realized that I had already fallen in love with him. I must have also known that at 30, I was in prime biological clock ticking time and had to decide if I was going to let my heart lead. This is why out of nowhere I asked, Would you have more children? In what felt like an eternity he replied, Yes, but it has to be two. I inquired about the number. He explained that he and his siblings had the same mother, but not the same father, and that his two older children had the same father, but not the same mother. He wanted a family with the same parents. That late June day in 2006 was the day I knew we would get married.

I gave birth to our son Gavin in late May 2009. Richard jokes that up until the last month I barely knew I was pregnant. He didn’t invent mansplaining, but he definitely has his moments! Sigh… My pregnancy, while planned, happened sooner than I expected. It began at the start of my journey to becoming a secondary school teacher. I was a teacher-candidate at the Ontario Institute for Studies in Education at the University of Toronto, or OISE/UofT. Classes had just started the day the little plus sign appeared on the pregnancy kit.

The original plan was to get my Bachelor of Education (B.Ed), work for a year and then start a family. Ha, ha, ha, ha, ha!! I love that I thought it would be that smooth. I was literally thinking: start teaching, get pregnant second semester, have a baby, take a year off and time it so that you get two summers out of it. At that point I was oblivious to all things related to conception, except the actual act - of course. Mr. My Sperm Swims Fast reminded me that both his older children were conceived with little preoccupation over timing or ovulation cycles. He urged me to decide on timing quickly because he wasn’t getting any younger. Having just arrived in Canada that January, I wanted to give him more time to adjust, and for us, more time to be a couple. But I also wanted a baby. I announced I was ready to start trying at the end of July, thinking it would take months. I was pregnant within weeks.

While learning about pedagogy and the ideal classroom (and trying to stay awake in class), I continued to teach swimming and spinning at The Athletic Centre at U of T. I even got another spinning gig at a boutique studio on Spadina Avenue. Having come off the previous five years of marathon and Ironman training and a cycling adventure across Cuba, I was still in go-go endurance mode. Being pregnant didn’t slow me down - until I passed out at the end of a spinning class while stretching to All The Things That I’ve Done by The Killers. It was scary for the participants, but hilarious for me! Luckily, my awesome friend was taking the class that day so I was awoken by her. I remember I was in a DEEP sleep state dreaming I was being called. I opened my eyes and looked at her in disbelief and asked, Kim, why are you in my room? Because I was in the middle of leading the stretch, some folks even tried to copy my slink into fainting! Thankfully this was before Instagram, though I’d like to think people wouldn’t bring their phones to their spinning class, much less take a picture of the unconscious instructor!

We went for coffee and food where Kim reminded me to take it easy. I made sure I got more rest, and calories, for the rest of the pregnancy. Apart from missing beer and having my husband strongly request that I stop teaching spinning in my seventh month, my pregnancy was the smoothest thing in the world. I didn’t LOVE it like some women do and I didn’t romanticize the mom-baby connection, I just knew that pregnancy was a step to motherhood, so I was happy that it was so easy.

I guess it was easy for my little one, too. He got quite cozy in there and didn’t want to come out. As the week that I was due approached, the docs were talking intervention. I sat there on the couch watching some telenovela or other with my Cuban drama king the Saturday before they would induce pregnancy and looked at him and said, It’s SO strange to me that two people who are so stubborn and set in our own timing for things are having a child that is being told when to come out. In true Ugalde form, Little Mr. I’ll Do Things My Way, started his journey out at 2 AM that very night.

I honestly have no idea how old most women are when they learn that during labour it’s common to push so hard, you end up shitting the bed. I learned that when one of my closest friends became an aunt when we were in our mid-twenties. I remember thinking it was kind of gross that the baby’s head comes out so close to where the poop comes out, but totally made sense. She was also quite serious when she said, You do NOT want your husband to see what’s going on ‘down there’…it will screw up your sex life! Though I didn’t have a birthing plan for Gavin, I did know Richard would be in the room with me. He helped put that baby there so he sure as hell was going to be there when the baby came out. Besides, Richard hadn’t been allowed into the delivery room when his two older children were born so he was curious. In Cuba, it’s more of a delivery ward than a room; men aren’t allowed in to protect the privacy of the women giving birth.

Gavin’s birth story is the perfect example of positive ignorance. The morning when contractions started at 2 AM, I knew it would be that day because they started coming every two hours. Just after 10 AM I got dressed, double checked my hospital bag, and decided to go for a walk around the block. Richard squawked, Alone?! I nodded knowing that it would be my last solo walk for a long time…or at least without having to worry about diaper changes and feeding before leaving the house. He half laughed as I waddled out the door stopping every few seconds to let a wave of pain leave my body. I clutched my cell phone, walked down the porch steps and decided a walk around the block would be just enough. I chose the sloping upward part first, while I still had lots of strength. It took me 3 minutes to walk half a block. At the top of that slope I decided that I didn’t want to walk alone, I wanted to walk with Richard, just the two of us alone, one last time. And I wanted a donut…a vanilla dip. The thought of the bright coloured sprinkles gave me joy. In grade 3, I used to buy myself and my sister a sprinkle donut at A&P with the leftover milk money. There is something about that simple childhood pleasure that brought me comfort in that moment.

I got to the house and Richard was concerned to see me back so soon. I explained I wanted to go for a walk with him, and of course, the donut. I just needed to use the washroom before we headed out. To my great surprise, and fear, I saw blood when I wiped. I came out, Change of plans, we’re going to the hospital. I saw blood. Will the baby be okay? I called the hospital and spoke to a nurse who told me that it was completely normal and a likely sign of the start of active labour. What were all the other contractions then, passive?! - She told us to sit tight until the contractions got closer, unless I saw more blood. Thankfully, she also offered, You can always come in now and we can examine you to see how far along you are. I needed that assurance. We called a cab and quickly made it to the hospital: gotta love Toronto driving on a sunny Sunday morning! I was admitted and told to chillax for a while. I was about 4 centimetres dilated: too early to push, but close enough to be admitted. That was just before 11 AM; by 3 PM and too many physical examinations later, no change. What about the blood? I asked. The nurse explained that it’s a mucous plug that pops out to start the birth process. The doctor came in and said, Do you want to get this moving along? I wondered how. We can break your water, it will help. Knowing what I know today I would have said no and asked to walk around the hospital until the baby broke my water himself, but I didn’t know, and Richard was too mesmerized by the modernity and cleanliness of a downtown Toronto hospital to help me make a better decision. Broken waters and all, baby was staying put. We’re going to help with contractions, the doctor offered. Code: oxytocin. Reality: imagine a garden weeder being shoved into your uterus every minute. I thought the universe would swallow me and the baby whole every time my body erupted. I was wearing a monitor and it fascinated Richard to be able to tell when I was having a contraction, so much so, that amidst my pain, he would tell me, LOOK!! You’re having a contraction. Had I not been writhing in pain, I would have punched him. An hour in, I asked for an epidural: I couldn’t handle it anymore. That’s when the Just say no to drugs twins made an appearance; my husband and sister both reminding me that I had said No drugs! I reminded them that I had made no such promise and that I had always said I would take it moment by moment. When the anesthetist was about to arrive my sister pleaded with me, This is so hard and it hurts so bad, I know, but once the baby comes out, it’s done. No complications or risks. The pain will end. Women were made to do this. Think of the earth. Every time it sprouts a flower it has to break. You can do this! I let out a sigh of exasperation. Earth sprouting a flower?!! FINE!! But if I say no, I don’t want to hear a single sound anytime I’m having a contraction. No deep breathing exercises, no hand holding, NOTHING!!! Everyone agreed. (Of course we forgot to tell Richard that silence included not crumpling the stupid Second Cup bag every single time he took a bite of the pastry in the friggen thing! To this day I laugh when I hear that crinkle.) I informed the nurse of my change of heart and she told the drug doctor who was now standing outside the room and I heard him say, Alright, but that’s it. If she changes her mind again, it’s too late. I am not coming back! Needless to say I was happy with my decision not to have Mr. Sensitive stick a needle in my spine!! Around this time the nurse noticed that my IV drip was set too high, to a contraction every minute. No wonder I was in such agony! Two hours into the intense pain I started pushing. I don’t know if I had been told to push, or if I told them I was going to start. I needed to do something with the pain; I couldn’t just lie there and take it.

As we approached the 3 hour mark of pushing the doctor very clearly said, I’ll be back to check on you in about 15 minutes. Your water broke a few hours ago; the baby has to come out. At this next visit he sensed the baby was in distress and warned, If he doesn’t come out in the next few pushes, we have to take you into surgery. I got so mad, so fast. You mean after a sleepless night with intermittent pain, 5 hours of intense pain and 3 hours of pushing you’re going to cut me open? No fuckin’ way!! I looked deep into the ceiling, practically broke Richard’s hand who was standing behind me physically pushing my upper body and said, Come on, please. Come on Gavin, we can do this! And yes, just like that, like something out of a movie, Gavin came into the world. He loves hearing how I named him without knowing his gender and without having a definitive choice for name. I tell him it’s part of the bond we now share; how we can read each other’s feelings without needing words to explain them.

For this beautiful baby to come into the world, I had to be completely naked as I felt restricted by the hospital gown, had more than 10 medical staff see me naked, and yes, I shit the bed more than once. (I guess it was fortunate I never got that sprinkle donut!)

That overwhelmingly natural act of birthing my child and having a few bowel movements would inoculate me against feeling any shame in the years to come as countless doctors, nurses, respiratory therapists and room attendants helped me stay alive. But I had no clue about any of this then, I had a gorgeous baby boy in my arms and was about to start the lifelong school of motherhood.

Postpartum Pains?

While the first few days were truly something I was not prepared for – the pain, tenderness, swollen body parts, exhaustion, and general anxiety of being totally responsible for a human life - I quickly learned the importance of food and sleep. My beautiful baby boy came into this world hungry! That baby wanted to eat, and eat, and eat. My personal quest to be a breastfeeding mother pushed me to the brink of insanity, and to be completely honest, I blamed some of the stress from that time for creating the condition that ultimately made me sick. From low supply to thrush, I had no idea what time it was or if I would ever sleep again. I used to fantasize that an elite team of highly trained military folks would swoop down in a helicopter and lift me out of this land of overwhelming responsibility. I wanted to stop being terrified. It did occur to me later that maybe I had developed postpartum anxiety. Fortunately or unfortunately, a much more pressing concern would present itself.

These days when I look at pictures on Instagram of new moms who are out and about or more, training for a marathon or triathlon, I’m dumbfounded. And as a mother, I say that with love, and nostalgic envy. I couldn’t even plan breakfast, never mind hill repeats! But as most moms eventually do, we found our rhythm and I slowly learned how to function on 4 hours of disturbed sleep. So, there I