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

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.