My Why By Nina

I was living in my body but we weren’t on the same team.

I felt impatient or angry when it was sick or injured.

I felt pleased when it was lean and strong, a reflection of my (excessive) self discipline.

I grew up back east constantly competing for varsity - on and off the field. You didn’t just go to college, you went to the best college. You didn’t just play sports, you were the best player on the field. I was used to pushing through resistance even if it hurt. There wasn’t a lot of sleeping in, bench-sitting, rest or recovery. 

To be honest, it didn’t occur to me that I was allowed to struggle. That I was allowed to have problems. I just had to figure things out, mostly on my own - perhaps to a fault.

These were the stories in my head. 

Until I was diagnosed with primary lymphedema.

It took years to diagnose the peculiar swelling in my leg. It would come and go for the most part, but after my second pregnancy, it didn’t. I was in pain from the swelling, like when your fingers swell after a long hike, but worse. In my athletic pursuits I felt severely off balance as one leg grew larger than the other. Injuries sprang up as my body compensated for the imbalance.

Then, a blood clot made me investigate my situation with new urgency and I was diagnosed with “primary lymphedema.” There’s no cure and no finish line. It might only get worse.

Primary lymphedema is rare. Its sibling disease, secondary lymphedema, is more commonplace: many cancer survivors develop this chronic swelling from chemo and radiation treatment damaging the lymphatic system. But my form of the disease is different and doesn’t respond to care the same way.  Without proper management, the swelling can snowball out of control. I’m susceptible to infection in my left leg because of the poor circulation - challenging my outdoor lifestyle and love of mountain biking, hiking, camping and all things wild. I was recently hospitalized for an infection that started in my leg and spread to my bloodstream. I was on a four-week course of IV antibiotics because the docs thought the bacteria may have made its way to my heart. The infection cleared quickly, we caught it early. But I have to be really careful.

I found my way to a trained and certified lymphedema therapist who was supposed to help me design a plan of care and manage this disease for years to come. I was expecting he’d be a compassionate partner and advocate but I was completely wrong. This doc shamed me for needing compression equal to that of a stage four diabetic, and refused to put his hands on my body to carry out the lymphatic drainage massage that’s so critical in my care. He told me a female therapist would be best. I felt disgusting, deformed, ashamed, and alone.

I looked at my leg with pity and shame, and I treated it the same way the therapist did: as a disgusting deformity, unworthy of my touch and care. The voices in my head were telling me to “cover up… wear a long dress… throw the shorts away… I need to hide my fat leg.” And the swelling only got worse. 

I started to physically and mentally hide my disease. I pretended I had it all under control. I covered up my distress and stuffed the negative emotions away. In reality, I felt completely ungrounded and insecure. The sports and activities that fulfilled me so much were fading away - especially my love for running - it became too painful. My jeans no longer fit my left leg, I replaced all of my short cocktail dresses with long maxi ones, my shoes stopped fitting on my left foot and my tall winter boots wouldn’t zip. It wasn’t just my wardrobe, life seemed to tighten and compress around me, and I felt completely out of control. 

My patience with myself and my disease grew shorter and shorter, and extended into all of the other parts of my life. I was lashing out at my kids for being too silly, late or not listening. It took effort to participate in their playfulness and respond to their curiosity.  I just simply felt bossy all the time. I was evasive and pushy, unpredictable and sad. The relief I used to get from a workout or fresh air wasn’t enough anymore. I was isolating myself by pushing everyone else away.

I was totally consumed by the losses, they eclipsed the loveliness that still existed in my life.  I didn’t know what to do or where to start to get back on the rails.

Right around this time we went out for dinner as a family. I always wear long dresses to hide the medical grade compression stocking I have to wear at all times. I stepped outside to check on the kids when a gust of wind blew by. My dress flew up in the breeze and I quickly pulled it back down to keep my stockinged leg hidden. It took a few seconds and when I looked up my oldest son was standing in front of me.

“Mom, cover up! No one wants to see your fat leg!”

I felt heat in my cheeks and hot anger rise within me. I was completely stunned. But then I realized, those weren’t his words. Those were my words. He was just reflecting what he’d heard me say and feel time and time again.

Despite all of my self-discipline, will power and attempts to “muscle through” I wasn’t getting anywhere. I wasn’t at peace with my body. I rejected the possibility of a new normal. I wasn’t being honest with myself. I didn’t recognize myself. And what kind of example was I setting for my kids?

I thought I would look weak if I shared my truths. I was afraid to be seen and heard. 

This is hard.

This is stressful.

I’m sad. 

I’m embarrassed.

I feel ashamed.

I’m anxious.

I’m scared. 

I feel so alone.

I can’t hide anymore.

I need help.

When I finally let go, allowed myself to feel and acknowledged the emotions, mind and body started working together, life slowly started to fall into peaceful place. 

I started to listen and be gentle. 

Yes, modern medicine shows that I have poor circulation in my left leg, but I think stunting my emotions and stowing them away for so long also contributes to the physical congestion in my body. 

Put it this way: the swelling in my leg is a constant reminder that I need to continue to allow myself to feel the feels, delicate and heavy, to let them pass through me without judgement or punishment. To not be afraid of the dark. To be curious and sit with my discomfort and not stuff it away. To ask for help. To honor my needs.

I work on letting go a little bit more every day. I sleep in (a little), recover, am grateful even on tough days, and try to treat myself like a friend. Our boys take “rest days” when they feel the need to stop pushing so much and instead let go. 

Our kids have seen me in some of my darkest moments. And that’s ok. It’s up to me how to handle those situations, when my tank is empty and I feel like I have very little to give. It’s a choice and takes practice, and thanks to this journey my approach has evolved so much. When I’m not taking care of myself, not listening to myself, not respecting myself, I’m no good to anyone, including myself. I’ve learned it starts with me.

When I’m gentle with myself, I’m a gentler human being. I’m graceful and proud, playful and intentional, centered and grounded. When I serve myself and honor my own needs, I’m freer to serve those around me, and it feels so good. 

I became a coach in 2013 because I wished I’d had a coach myself. I was so frenzied and lost I had no idea where to start to get back on the rails, steady, strong, reliable, loving, playful and graceful. Intentional. What looked like a physical diagnosis and disability was truly so much more. It was just the tip of the iceberg, which is almost always the case with our clients, too. 

It’s scary to be seen and heard. This isn’t easy. I’m a coach, but I’m not a perfect human being. The work Kelle and I do is a most authentic extension of our own journeys. We’ve been there. We are there. I’m in-progress every day and hopefully this gives you permission to feel the feels and see yourself, however imperfect, lovely, messy or uncomfortable, too. 

XO Nina

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