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.

First international young carers conference!

I am so excited!  I completed my conference selections for the first International Young Carers Conference which will be held in Vancouver British Columbia in May.  The conference is called Child and Youth Matters and has combined three conferences in one.  They are the First national Family Mental Health Conference, the Third International World Congress on Children of Parents with Mental Illness and the First International Young Carers Congress.

The number of presentations to choose from made choosing the conferences difficult.  There were so many things that appealed to me from my previous life as a mental health Case Manager and  my new role as an advocate for care-giving children couldn't be a better fit.  The conference will bring together people from many different backgrounds to share and learn.

The Young Carers movement in the UK and Australia is well established.  In England the government has a national strategy for Caregivers.  Our Canadian group will be able to learn a great deal from these established programs.   I am looking forward to the experience and learning opportunities that will shape our Canadian commitment to children who take on important roles in their families and communities.  I will report back in a few weeks after the conference!

New Directions- Young Carer's Cause

As my health began to stabilize I was living in a world essentially unchanged, but totally unfamiliar. The career that I dedicated a good portion of the previous ten years to established slipped from my fingers. I had finally established my reputation and role professionally only to hear from my doctor that I would never work again. Forms were submitted with terms like "this patient is permanently, completely disabled. She is unable now, or in the future to perform any task related to her former job, or any job." Insurance forms responded by declaring me a victim of a "dreaded disease" and approved my claim for permanent disability.

I was grieving this loss of my career as if a child had passed away. My sense of self, my financial security, my connection to the world socially and career persona were all, in an instant gone. Physically, I needed help with the most basic tasks even on a good day. Achievements were no longer measured in professional designations, with degrees or diploma's, or came in the form of monetary compensation. Getting from my bed to a sitting position, getting dressed, eating food, holding objects in my hand became the challenges that I faced each day.

The people who were closest to me were my caregivers, my cheerleaders, my counsel and my strength. We found ways to infuse humor into the days. As my body began to slowly regain function I experienced what I would describe as shock like sensations throughout  my body. My daughter went out to buy lightening bolt earrings. She helped me get dressed, ran small errands, paid some bills and withdrew money to buy things that she needed. The independence was both exhilarating and overwhelming. My son carried the groceries,unloaded the dishwasher and cut the grass even though his small frame could barely push the weight of the lawn mower.

As a family we celebrated the insurmountable individual challenges of daily living growing closer despite the immense challenges facing each of us. During this time we reached out to the local Multiple Sclerosis Society for support and information. The connections we made at the office met our practical needs and far more. I was provided with assistive devices like a bath chair, a walker, a wheelchair etc. My children benefited from Kidz Club a recreation program that provided information and support during this critical time.

Politically, steam was being built in a collaborative community effort to recognize the needs of children who where in families such as mine. They gave a voice to children living in homes that provide care to relatives who faced chronic illness or language barriers. The group, The Young Carer's Initiative was made of professionals working in organizations who saw that a family centered approach was needed to address the complex needs of the families they serve. Most organizations focused on the identified client- the person in need of direct service while there is little done to acknowledge or address the complex needs of others such as young people who take on tasks far beyond those that are prepared for developmentally.

The MS Society was a share holder in this initiative along with 16 other services such as the Alzheimer Society, Family and Children's Services, AIDS Niagara, brain injury services, children's mental health programs and others. They pooled their expertise and lobbied for funding to create a service with a family centered approach to provide supports to children who were caregivers. They were identified as "Young Carer's".

My daughter secured a summer position with the MS Society and began creating educational materials that could be accessed by staff, professionals, volunteers and the community about MS. At the age of 17 she was given a role that allowed her access to critical information about MS and the opportunity for leadership overseeing a children's summer program. I began attending committee meetings for the Young Carer's Initiative. At the table I was invited to provide the perspective of families. This provided me with an opportunity to use the skills I had worked so hard to develop in my career in Social Services. It occurred to me that neither my life or my career was ending as I had previously thought perhaps the momentum of my life's experiences had not been lost but in fact redirected.

“I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you appreciate them when they're right, you believe lies so you eventually learn to trust no one but yourself, and sometimes good things fall apart so better things can fall together.”
― Marilyn Monroe

Rising to Challenge

There are times in everyone's lives when a change happens that is so great that life is defined in terms of then and now. These events mark time in a different way and change our perspective. The birth of child, marriage, divorce, death. These things change the landscape of our lives. They always come with a wave of change and adjustment molding and shaping the people we become.

Tuesday November 21, 2006 was one such day in my life. It started out like the days before with me driving my kids to school and going into work but it didn't take long to know that something life changing was underway. On that day went home sick at the urging of my boss and never returned. The astounding thing for me was that although something wasn't right, it didn't seem horribly wrong either. I didn't feel sick, or different than normal I was "just" losing the ability to use my left hand and leg. That is how it happened. I truely didn't feel strikingly different even as I progressed towards paralysis all the way along the left side of my body.

The next day I was admitted to hospital and to make a long story short I was diagnosed with Multiple Sclerosis. In the days that followed I continued to lose abilities that were innate. Within six days I was not able to sit, feed myself, dress myself, or move independently. My diagnosis was not clear and I was worried that my life at age 33 was nearing its conclusion. Visits from friends and family were celebrated like never before and my close family became my caregivers.

I knew that this monumental shift had a profound impact on those who love me. My mother and father stepped in to care for my kids who were in grades 9 and 6. The kids wanted so desperately to have any bit of normalcy restored. My mother took over most of daily care needs, maintaining my home, laundry, cooking, personal care etc. My kids, father and countless others stepped in to help as well. This was a time that called for everyone to give more then they had to give.

People stepped forward to help in ways I couldn't even have imagined possible. A Great-Aunt undertook a fundraising campaign generating funds to help offset expenses that were quickly piling up. My co workers did the same. People that I didn't even know banded together to ensure my kids had a Christmas like years previous. A local high school drew up designs, bought materials and installed a wheelchair ramp on my home so that I could return home for the holidays. A local team of high school aged boys brought gifts, food and money that came from their own contributions. So many people offered me such kindness I worried that I would be unable to remember them all to thank them due to my ever increasing symptoms of crushing fatigue, cognitive problems, and immobility.

I am forever indebted to the countless people who stepped forward with gifts of all kinds. Their kindness and selflessness were like a welcome blanket amid a terrible storm. In all this, of paramount concern to me were my children. The shake up in their lives caused in this stroke of time would forever mark their lives. I worked with Occupational Therapists in the hospital who coached me to ask my kids to take on responsibilities that they had never before had to do at a time when their entire worlds were upside down. Ensuring they had supports was foremost in my mind, but that did not change the fact that as life went on the things that needed to be done would have to be shared amongst them.

Our family could not even comprehend the kindness and generosity of people, many of whom were complete strangers who came forward restoring our hope, and allowing us to move forward. These acts of kindness, each and everyone was a reminder that each day is a gift and together we can rise to meet any challenge before us.