Friday, February 19, 2016

Frostbite and MS: Building Resilience

One of my sisters is significantly younger than I am, and she’d never heard the story of my frostbite that occured over four decades ago. She knew I had it as a child, but it was only recently that it came up and I told her about my experience nine years before her birth. It was a story that was obvious to me, but it never occurred to me to tell her about it. Somehow it came up while we chatted, and I told her the full story.

At five years old I walked to school on the last day of class before winter break. Excited for our Christmas party, I carried a trash bag full of home popped popcorn in paper lunch bags for each student in my kindergarten class. We lived in Ontario, Canada, and I walked to school with another of my sisters three years my senior.

With the wind chill bringing the temperature to 20 below, my sister and I were bundled up with winter coats, mittens, and scarves for the cold walk to school. I carried the large bag of party treats in my right hand. On the way, I cried I was cold. By the time we arrived at school, my eight year old sister was carrying my bags and had given me her hat and scarf to wrap around my hands. I’m not sure how far or how long I carried the bag without moving my hand, but it was long enough to do irreversible damage.

My sister saw me wheeled out on a gurney from the school. I endured a month of soaking my hand daily for a half hour at a time in lukewarm water. For years I was convinced I soaked my hand in boiling water. With the severe frostbite on my hand, lukewarm water felt like it was boiling water. A large blister covered my right index finger from middle knuckle to fingernail. Twice doctors peeled an outer coating that grew and encapsulated my hand like a lobster shell to reveal raw skin beneath.

Years later I learned there was discussion of amputating my right index finger. They spared it, and I’m lucky I have full use of my hand. The bones grew in a way that stunted the length of my fingers and expanded the bone at the knuckles. My right hand is about ¾” shorter than my left.

People notice my hand doesn’t look normal, but rarely do they ask. Some people assume it has to do with my MS. Others are just shy and wonder. If they ask, I’m open about explaining why it looks odd. But mostly I don’t think about it. It’s just a part of the way I am. It’s a part of my history and experiences as well as my physical body. I don’t flaunt it, but I don’t hide it either. For me it’s a lot like how I feel about having MS.

We all have scars. Some are emotional, and some are physical and visible. I’m not ashamed of having MS. I don’t rejoice in it, but I choose to embrace it and rejoice in life. I can’t cure myself of MS, but I can accept the limitations it places on me and maximize my joy and life experiences. My MS, like my malformed hand, is a part of who I am. And given I can’t change either of them, I’m okay with them. I choose to look at the bright side. Experiencing severe pain as a young child that couldn’t be avoided helped me become resilient. My resiliency is probably my strongest asset in living with MS and living through adversity in general. While I wouldn’t choose the conditions that taught me these life lessons and built up my resiliency, I appreciate that something good can come from them. 

Sunday, February 7, 2016

Relationship Changes: How An MS Diagnosis Can Change Relationships

The personal growth that can come after an MS diagnosis affects our relationships drastically. In facing our fears, the unpredictability of MS, and grieving the future we envisioned, our relationships can’t help but change. The experience reveals the dynamics that no longer support our mental and physical health or the future we now need. A friendship or marriage can blossom, or it can crumble from the magnitude and pace of change. And the outcome doesn’t dictate the value of the relationship, determine the efforts taken to maintain it, or judge each person’s character. 

I may have been on a life path where my way of interacting would have evolved this way without an MS diagnosis, but I think the diagnosis definitely accelerated my need to take care of myself. 

I don’t relate to people exactly the same anymore. I strive to notice when I’m contributing to a poor dynamic, own my words and actions, and distinguish between my issues and other people’s issues. It allows me to have some control over my life instead of unconsciously reacting to circumstances. It also reduces the stress that comes from feeling responsible for other people’s feelings and actions and trying to fix everything.

Some people saw this as rejection or abandonment. Others embraced it, and our interactions flourished. To me it felt like I was supporting them with new behaviors that weren’t at my expense and inviting them to join me. 

I appreciate all of these relationships regardless of where they are today.  These people are all a part of my life and history. I want to support them in their own life paths that are best for them whether our paths continue to cross or not.