Bridging the Gaps

                                                           Photo CreditShakeelgilgity

Time has a way of moving forward.  It moves forward even in spite of the events that seem to stop the world for just a moment for those of us in it.  I am sure if you think for a second you can conjure an image of a time when you were so lost in the moment that it seemed like time was standing still.  A few of these moments come to mind for me and they are the richest moments my life has offered me.  


For instance, the moment when my eyes first met my children; when my ears were blessed with the sound of their cry or the moment after learning of a death that I realized I would never see my loved one again.  I imagine that for people who survive natural disasters there is a moment that is a blip in time when the shock of what was and what is to come fractures the past from the future in an cosmic surge. What was, is no longer and there is nothing to do but let time provide a bridge to what will be.

A bridge is a structure built to span physical obstacles with the purpose of providing passage over the obstacle.   The bridge is a perfect analogy for the chasm that existed between my illness and my recovery; my life before diagnosis and my life after.  My life before illness and after were starkly different lands and the journey that bridged the two was built with some very important teachings.  The planks laid out for each step to be taken were vitally important so that I didn't fall into the abyss below.  There were many people who acted as stabilizing forces encouraging forward movement like a loud ticking clock leading me and propelling me along my journey.


Embracing fear, and working through the grief process has not been a linear process for me.  I have moved between fear (of my unknown future in terms of health), anger at the loss of my social stature and career, worry about how my mental adjustment and my physical health are impacting my children, and I have learned to relish moments of acceptance that are hard won and don't seem to last nearly as long as I'd like them to.


One thing that has become exceedingly clear to me is that while our experiences are different our individual journeys hold some stark similarities.  We all have a cross to bear in this world and we all struggle to find worth and purpose.  We all love, lose, grieve, triumph and we all have something unique to offer this world.  My work in the Young Carers movement has brought some vibrant, committed people of all ages into my life.  It has given me a place to invest my time, energy and advocacy.  


I look forward to sharing some themes from the recent conference I attended in my next entries and thank you for bridging the gap between what was and what is in my life.

Visitor In A Strange Land

"You look so good."

Well meaning people say this to be reassuring.

Before I was living with a chronic illness I said this very thing to someone. The message we meant to convey is, 'you may be struggling but you put forward a good image'. You look good in spite of all you are dealing with. It is meant to be a compliment.

But a strange thing happens to people living

with chronic illness when they hear comments like this. Perhaps this shift in thinking happens as a result of perceived judgement, self deprecation, or a fractured connection to the "world of the well". When we hear this apparently kind comment the response that spills forth does so with a tidal force.

Thoughts tumble through our mind. Exactly what does that mean? Do I look too good to your judging eye to actually have a "real" illness? Are you questioning the legitimacy of my illness? How could I possibly "look so good" when I feel down right haggard.

When I was first diagnosed with MS, I became indoctrinated into a world of people who live with the effects of disease that are invisible. These symptoms collectively take a hefty toll and remain completely unseen to others. It is these symptoms that contribute to a sense of separation between the 'well' and the unwell almost creating a division of us and them. For me, living with MS these symptoms include numbness, fatigue, cognitive fogginess, vertigo and others. Sometimes I long to be ignorant again, to not understand.

The very best description of the divide between the well and the unwell is that when you are living with a chronic disease you are a visitor in a strange land. You have a vivid recollection of where you used to live, but here you are in a different environment. This is a land of wounded warriors who have had hard edges, whittled to soft curves in battle.  In this place the people speak a different dialect of your mother tongue.

The people here have a different lifestyle and have a greater focus on things that were given little attention before.  For a long time, all I could think of was my homeland. I yearned for it like a child away from their family at camp; taking part of activities, but keenly missing the familiar routines of home.

As I enter my sixth year since my voyage from good health, I have found some peace in this land. 

I have become accustomed to living slower.  In my previous work I learned about the concept of mindful living. This concept was a most challenging concept to integrate in a fast paced world that valued multitasking, output and productivity.  In living mindfully you must practice focusing your mind on those things in your immediate surroundings through observation or description.

I look so good?  I am good, as it is redefined in the world I live in today. 

Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of those things and still be calm in your heart ~ Unknown