Supporting our Supporters

Caregivers rarely beat their own drums.  As a group they don't see the things they do as heroic they simply plug along giving and providing in response to the needs that present themselves in front of them.  It is expected that families will care for the young, sick and frail.  As a society little value is placed on the tireless advocacy and care provided to those who need it.


I have been an active participant in programs that support caregivers young and old.  Trying to garner support for these groups has been an uphill battle.  People are reluctant to cast themselves as martyrs or to beat their own drums.  They simply meet the tasks before them and wade through one after another out of love, commitment or a sense of responsibility.


What brought me to writing this latest post is reflecting on the role that the local chapter of the MS Society has played in my life since my diagnosis.  I've served on the Board of Directors for the Young Carers Initiative and volunteer at the local chapter of the MS Society where meeting the challenges facing caregivers is a frequent discussion.  What is also difficult is reaching overburdened caregivers both young and old to give them support and replenish them to keep doing what the do.  They too do a poor job at the beating their own drum about the work they do and the significance of the contributions they make.


The local chapter of the MS Society has been a cornerstone in my life since my diagnosis.  At the local chapter I have been an active volunteer as I worked through my own grief cycles.  They allowed me to contribute and be a part of their mission to improve the lives of those living with MS as I dealt with the loss of my career, my image and grappled with my sense of self.  From the early days following my diagnosis they provided me with information, equipment, exposure to modified yoga and exercise programs, support groups and a friendly visitor program for people who can not get out. My children have benefited from the Kidz Klub program where they have had opportunities to attend amusement parks, and engage in activities with other children who live with a parent with MS.  I have participated in creating a newsletter, provided educational in-services to newly trained health professionals, provided office support, and assisted in writing grant proposals.  


The more I reflected on the role they have held in my life for the last six years, the more committed I became to supporting them.  The MS Society of Canada is experiencing some significant growing pains due to decreased revenue.  They receive no government funding and rely solely on public donations to enable continuing research goals and support at the local level to those living with MS.  They are in a position to need to make some serious decisions about where their priorities lie.  I only hope they are able to find a way to keep offering supports "on the ground" and to provided needed dollars to enable research to continue.


I would encourage you to complete this survey to let the MS Society of Canada know what is important to you: (Canadians only)


This 'renewal initiative' outlines the potential priorities.
http://mssociety.ca/en/community/mssc/Renewal.htm

Here is the survey (Click on the survey monkey link)
http://mssociety.ca/en/pdf/RI-Paper-...-Solutions.pdf


And finally to consider making a contribution to the local MS WALK in support of those who support people living with MS.
http://mssoc.convio.net/site/TR/MSWalk/OntarioDivision?px=1256015&pg=personal&fr_id=1296

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

From Grief to Growth- The Impact of Chronic Illness

Photo Credit: Julia Freeman-Woolpert, Concord, NH, US

Understanding the impact that significant life events have on those around us is particularly difficult for people who are living with a chronic illness or disability.  When I was first diagnosed with MS someone said to me, MS should really be called ME because it is so consuming.  Indeed learning to adjust to new experiences of what is normal is a difficult process.  It is one that can be viewed as akin to the grief process.


Elisabeth Kubler Ross describes the five stages of grieving as denial, anger, bargaining, depression and acceptance.  In grieving losses through death, these stages do not occur in clearly defined, neat sequences but they come in waves along the journey of recovery.  In dealing with chronic illness these stages continue along a person's life span as the illness continues to present different challenges, losses and imposes perpetual change on our lives.  All this grieving is hard work and it is often as consuming as dealing with loss of life.  After all the perpetual changes redefine, and challenge our self image, our ability to interact with the world, and our ability to function in day to day tasks.


As we work to accept these complex changes so many emotions rise up to the surface.  We question how people view us, we question our abilities and needs, we deal with layers of red tape to meet our basic needs and we struggle to manage our activities of daily living. 


Most people that I know would say that their illness or disability has had little impact on their friends, families and caregivers.  This ideology was perplexing to me to some extent. But as I opened my mind to hear their perspectives I learned how painful it was for some to see how people around them were impacted.  Others, tell me that their kids just accept that this is just how things are and they manage to live their lives without it impacting them.


I have always maintained a conscious effort to be in tune with how my disability was impacting those around me.  I was angry that my kids had to have this intrusion in their young lives and I was ever aware of the impact it has had on them.  My daughter was 14 when I was diagnosed.  She was entering into her grade nine year of school.  This was a monumental new chapter in her life.  High school is a big deal, and she needed me to be there for her. She wanted me to go shopping for new clothes to make sure she was putting her best foot forward.  She wanted to tell me all about her teachers, friends and the events in her life.  All this at a time when hormones and emotions were in high gear and life was becoming more complicated. 


I wanted so badly to be a part of everything in her life, but I was recovering from an aggressive attack of Multiple Sclerosis.  I was living with paralysis on my left side, very limited mobility, extreme fatigue, and a host of other scary neurological symptoms.  In addition, I was weaving my way through a host of powerful emotions and living with some daunting medication side effects.  Despite my greatest desires to minimize the impact on her and her brother, the fact is that this kind of event is not the norm.  As such it is uncharted territory for everyone involved.  My kids, my parents, my extended family and my friends all to a greater or lesser degree were impacted, molded and shaped by this unwanted, unexpected and unwelcome turn in my health. 

This intrusion has been a negative, horrible experience but from this we have all been aged like fine wine.  Inevitably some of the effects of living with chronic illness have made the weave that binds us a little tighter.  I am far more sensitive to the struggle and challenges of others.  I am less likely become angry and annoyed with others.  I am more open to hear and see things from the perspective of others. .... But enough about ME.  My children are showing how resilient they are in the face of challenges.  They rise up beyond my hopes and take on more responsibility time and time again.  They handle themselves well with people of all ages and abilities.  They are mature, responsible, reliable people who rarely take anything for granted.  I feel grateful to see them grow up.

"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These people have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern, beautiful people do not just happen."   

Elizabeth Kubler-Ross

Do What Works

Multiple Sclerosis has been an insidious thief gradually stealing my energy, flexibility, strength, coordination, sensation, balance and perception of where my body is in space. As a result I am no longer able to do many things the way I used to. I have had to leave a job I loved rather abruptly and make many modifications to my life. My career was such a focus in my life, when I lost it I lost much of my self definition.

In 2008 I was humbled yet again by this disease and bought a mobility scooter. I worried what other people would think when they saw me. This big machine made me so visible, yet I felt that society would classify me as invisible/expendable. What I found was that a blessing lurked not far beneath this hardship. I was able to move about freely and gracefully with out worry of falling. I could once again "browse" while shopping and I had energy to do more and BE more in this world.

I have decided  to dispense of my ego and just "do what works".

To my surprise I did not cease to exist. People were not mean or critical, dismissive or judging. In fact they often looked me right in the eye and met my smile with one in return. The "world" reflected back to me what I put out there. This world once again showed me that there was indeed a place for me.

I have been able to see that people will respond to me in just the way that they would have before despite my disability. They will see kindness as kindness, generosity as generosity, and genuineness for what it is. Although, the way I interact with the world in a physical sense may have changed, the world remains as it always was. Opportunities are plentiful and reasons for hope, abundant.

So my goal from here forward will be to continue doing what "works" and to find a new place to focus my energies, and talents. A place where I can begin to grow again. I am not sure where that place will be just yet but I now have renewed faith that there is indeed a spot waiting for me.

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.