Sunday, November 27, 2011

Gratitude versus Fear

Life since MS has been a journey of diametrically opposed experiences.  I have been challenged by extreme losses that span physical, psychological, emotional, social, relational and occupational spheres.  In contrast to the many dark, unsettling losses I have been humbled by some unearthly expressions of kindness, generosity, and humanity.  These amazing dialectics have given me much to process, to distill and to ponder.

MS has been described as a thief in the night.  He prowls through your most coveted possessions.  Rifling through the things you hold most dear and leaves with what he thinks are the most marketable items for resale.  The sun does come to rise again, but things are never the same.  You've lost things you once valued, but more than that you've lost a sense of safety, familiarity and those things are so much harder to replace.  Many parallels can be drawn between a midnight home invasion and living with a chronic disease like Multiple Sclerosis.  You just never know when it will strike and what its impact will be.

MS has ravaged my brain. At times, my physical state has spanned between looking well enough to pass as "normal" in a bystanders eyes to being bound to a bed with little control of my body or its movement and function.  The time span between the two has been shockingly brief, giving no opportunity to distill the changes into my self concept.  I recall in my early days, being no different in my mind as I was the month previous mentally preparing to attend a conference for work when in fact I was unable to sit, or transfer safely to a wheelchair.  There was absolutely no way I would have been able to attend that conference but I felt no different until I tried to move and there was no response in my body.

During this time my emotions ran high, my self image so out of sync with my failing body I can only imagine what it was like for people on the outside looking my way.  I remember feeling overcome with happiness when I saw the faces of people I thought I might never see again (if I didn't make it).  This prompted many raised eye brows and whispers.  People wondered if my responses indicated that I didn't understand the potential that the unknown disease process carried with it the risk of death.  But the opposite was actually true, the fact that I had the opportunity to see, to hug and to create new memories left me with a powerful sense of gratitude.

At the time I told my doctor not to worry, that I wasn't going to die. I had too much living left to do.  He left my room that day with a heavy expression.  In fact, I did not have an imminently terminal illness and I have been gifted five years since that day to carry out that living.    

In the days following my hospital admission and diagnosis in 2006 there wasn't a need that presented that wasn't met ten fold.  Worries about how I would afford to pay the bills were quickly followed up with worries about how I would acceptably thank the many people who offered gifts large and small. Many of these gifts came from people I didn't know, who didn't know anyone in my family but heard about our story and then there were the kind earth shattering offerings from those people who know and love me.

I sometimes find myself feeling lost without the structure, peer connection and balance that work provided in my life. But, during these last five years I have lived with a feeling of gratitude and indebtedness that has carried me through the rough times. It has given me cause to reach out and give back in as many ways as possible.   It has strengthened my faith, restored my hope and provided me with the courage to face fear and adversity. 

With this mighty arsenal that thief in the night can't possibly bankrupt me, can it? 

Thursday, October 27, 2011

Looking Back, Moving Forward

"Sometimes all you have to do is live long enough for things to get better."

This was the advice a colleague told me during a moment when I reached a low point in my life from which I felt emotionally devastated.  There were many people lending an ear to help me release the pressure that reduced me to an empty vessel.  But those words cut through my grief like a hot knife through butter.

He was so right.  In time I did bounce back from that difficult time and life went on as it should.  Days blurred into weeks and life took on familiar routines.  Without giving it much thought I tucked this useful "reframe" away in case I needed it again.

During the days and weeks  following my diagnosis and the devastation that was left in its wake I would tell myself to just live in this moment.  I would use skills that I taught others; familiar but a bit like trying on an outfit from a second hand store just like one you've previously owned.  The fabric feels familiar but it has taken a slightly different shape and you have to determine if you can "make it yours".

Reaching into my memory for those things that might help as I was dealing with changes that crossed physical, mental and emotional spectrum's I found I had much to draw upon.  "There is enough pain in life to live in the past or the future.  Just deal what is immediately before you."  These were things I had told my clients countless times and I was now telling myself to ease my heavy burden.  The bravery that my clients' faced their challenges was often reflected upon to buoy myself if my reserves were getting low.  The clients I worked with in an outpatient mental health program were 'ultimate warriors' who were living with severe chronic mental illness.

Living mindfully offered me freedom.  I found that when I focused my mind by observing my present environment it was a powerfully grounding experience.  I would allow my mind to drift off if other thoughts entered my mind, but always skillfully bring it back to the present moment and the task of being in observance of my surroundings.  When I finished  I always felt a little more able to deal with what was before me.  The exercise would take no more than a minute, and I could do it as often as I needed to renew my sense of strength, resilience and reserve to move forward.

As I reflect back now, I realize this was one of those times when "just living long enough" made something that seemed unbearable like living with a diagnosis of  MS better or at the least, bearable.

No matter how bad things are at any one moment, no moment lasts. good or bad, time moves on because it has to. And so do you.  Author Unknown

Sunday, October 23, 2011

Pride? Dignity? Ego? Never Mind...

Accepting help is difficult for most people.  Working in social services I saw that again and again in the many hats I wore.  Examples flood my mind with so little effort.  Working in nursing homes, providing visiting nursing support in the community, working with young "at risk" parents/families, for the social assistance office, in palliative care and in outpatient mental health services I worked with a variety of people from every socio-economic status.  Despite the different reasons people were in need, one thing was certain. That was asking for help and accepting that help did not come without a personal price tag. 

We live in a society that values autonomy, self reliance, strength, and independence.  The thought of losing control is terrifying to most of us.  It is imperative to our self construct that we see ourselves as whole, capable, and able.  When you are suddenly faced with being unable to do things it is a mighty blow weather you are an 80 year old senior, a young new mother, a successful business owner, or a middle aged person.  When I was first hospitalized with symptoms of multiple sclerosis the task that faced my care team was a mighty one.  I was a caregiver, that was my role professionally.  Beyond that, it was what I thought most defined who I was.

Accepting help challenges us to reevaluate who we think we are, and what makes that so. We are forced to see that we can't always be "givers" we must also be willing to accept help.  It makes sense really, everything in the universe must have opposing sides to enable balance.  Let me tell you, learning to be the recipient of help wasn't easy.  It required me to set aside so many roles in my life where I felt competent, capable and whole.  Allowing people to assist me with the most intimate things in my day or the most mundane required me to swallow my pride, my dignity and my ego.  Accepting help gracefully wasn't easy when I was the "client".

 As I was doing my research for the Resiliency in Young Carer's page of my blog I came across the work of .  The majority of his work is in the area of Post Traumatic Stress disorder.  He compiled a list of skills helpful in facilitating resiliency in the face of adversity.  As I look down the list it is easy to see how these approaches would lead to favorable outcomes, but what wasn't so readily seen is the personal struggle that so often is faced when you are the one dealing with the adversity.  As you look down the list can you think of a time when you struggled with any one of these?  What did you have to give up?  Were you successful?
  • The ability to cope with stress effectively and in a healthy manner (not avoiding).
  • Being resourceful and having good problem-solving skills.
  • Being more likely to seek help.
  • Holding the belief that there is something you can do to manage your feelings and cope.
  • Having social support available to you.
  • Being connected with others, such as family or friends.
  • Self-disclosure of the trauma to loved ones.
  • Spirituality
  • Having an identity as a survivor as opposed to a victim.
  • Helping others.
  • Finding positive meaning in the trauma.

Saturday, October 22, 2011

Miracles in recovery

I am here today because I am a child of an alcoholic.  No, that's not what I mean exactly.  By here I don't mean in this very place.  Perhaps what I mean to say is that I am who I am because I am the child of an alcholic.

When I was five years old my father made what I am sure was the most monumental decision of his life.  I can say that with a measure of confidence because I have seen him maintain an unwavering commitment to his sobriety for the past 33 years.  When I was five years old, my father made the decision to stop drinking.  In order to do that he attended Alcoholics Anonymous and joined a group of salt of the earth people in their own journeys to end the reign alcohol had in their existence.

My dad was never a preachy guy.  He quietly tried to learn the doctrine of the Big Book by living it.  As far back as I can remember our house was an open door to other people young and old who endeavoured to live out the guiding principles and philosophies of AA.  These men and women had a profound collective impact on my life, as I reflect.  Perhaps the people that came and went just reinforced the philosphy that I saw my dad taking great efforts to absorb into his life like a healing salve.

I remember these people vividly.  A man with a colourful presence that referred to me as "hotdog" and my sister as "hamburg" as he called to talk to my dad on the phone that hung high on the kitchen wall.  An elderly man who rode his bike all around town and smelled of cigars who sat one afternoon and helped me edit my english assignment.  A man in university who congratulated me about my new townhome and talked about how I was starting out life with all the things my parents had- a home with three bedrooms, a front yard and a back yard etc.  He challenged my thinking and helped me to see my accomplishments. He talked about philosophy, astronomy and astrology expanding my world with possibilities. 

All of these people contributed to my development and coloured my memories. They guided and shaped my moral compas.  They, in living out their lives in sobriety taught me to accept, to challenge, to rise in the face of adversity.  When I look at how I have been able to live through so many challenges I can't help but stop and be thankful for the wealth of the example my father provided in chosing each day to reach inside himself, reach out to others and reach up to the heavens in thanks.

"There is no magic in recovery only miracles." AA Slogan 

Thursday, October 20, 2011

In Living and in Dying

I tentatively entered room 314 and introduced myself as I was directed by the charge nurse one day nearing the end of my student placement.  I continued to do the things that I normally would do for the patients and families I had been working with.  I brought a selection of music to soothe weary souls, I sat with patients as phone calls were made, coffee was consumed and as loved ones came and went.  On this day, a family had specifically requested my services.

Their beloved husband, father and friend had slipped peacefully into a coma a few days prior and his breathing became very slow and laboured. There were long gaps between his breaths and a wheezy rattle escaped as the air moved in and out of his fluid filled lungs. I knew this to be called cheyne-Stokes respiration, a sign that the end was near.

Over the course of the day more and more family members joined his bedside. I backed out affording them privacy returning every few hours to see if there was anything anyone needed.  On one visit, the family asked me to stay as they felt he was about to depart from this world.  I stood quietly at the back of the room and was overcome by a rush of emotion.

I felt a panic that was difficult to suppress.  The rising tension in me was ever so slowly replaced by a feeling of love and joy that was so powerful it almost set me off balance.  The energy in the room was palpable. Each family member shared their story of connection to him and how he enriched their lives.  They told stories that evoked laugther, tears, and a world of emotion.  They expressed their gratitude for the ways he loved, challenged, and supported them and gave him permission to leave this world.

As I stood there moved by the stories, if felt as though every bit of air was sucked from my lungs.  The love and connection in the room was so powerful I felt like I was lifted back in time to a moment when I had felt a similar energy.  It was the moment my first child announced her entry into the world with a mighty cry. 

It would take me many opportunities of reflection for me to understand how I could possibly have had the same feelings evoked when a life began as when a life ended. In both examples everyone was united in love, faith and hope.  In that very moment as I stood quietly in the back of room 314, life and death became one for me. 

Sunday, October 16, 2011

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

Wednesday, October 12, 2011

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

Sunday, October 9, 2011

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.

Sunday, October 2, 2011

A Language That Transcends

Photo Credit: Ivan Prole  Zemum, Serbia
 During my clinical placement for college I worked on a hospital Palliative Care floor. I worked with individuals who were living with terminal illness and their families. One of the patient's assigned to me was a 44 year old woman.  She had a diagnosis of Multiple Sclerosis.  Visiting her was one of the highlights of my day.  She taught me a great deal, more than I could have learned from any book or guided exercise.

She was a tiny woman, ravaged by an unforgiving disease.  She was unable to swallow, barely able to talk above a whisper.  She looked so small, almost swallowed up by her hospital bed. Even though I could barely make out what she was saying most of the time her wisdom and depth of spirit transcended language.

As time progressed and her story nearing its final pages, she slept more and more of her days away.  I would retreat to her room so that she was not alone.  At first I did this to provide her with some comfort as she drifted in and out of sleep during our visits.  She didn't have any family or friends visit in the months I worked on the unit but she would share stories about the people who she held dear in her thoughts.

Her words came in breathy effort filled gasps.  Over time I learned about her brother, nephew and others.  As the memories played out in her mind, flickers of her spirit and beauty shone in her expressions.  So much of the time she writhed with pain from muscle spasms in her stiff contracted legs that it was uplifting to see her expressions as she shared her story with me.  She worked through waves of pain and grief in distant expressions or in quiet sobs with admiral strength.

In the end, I would arrive with music and books but she was not able to stay awake for more than a few minutes at a time.  I would sit at her bedside relieved to take a load off and let my own thoughts take me away.  One day when I thought she was sleeping she turned her head and told me that she had noticed that I wasn't as focused or engaged with her.  It was quite a reality check.  I realized how much a part of this world she still was.  Never again would I forget myself when I was with a client. 

Shortly after that day I dreamed one of the most vivid dreams I have ever had.  In my dream, I saw this woman.  She was off in the distance but I knew it was her.  She was wearing a beautiful flowing dress not a thread bare hospital issued gown.  She was running through a field of yellow flowers freely, without effort.  I was flooded with positive feelings as I watched her. 

When I woke up I stayed really still.  I could still see the image in my mind was still experiencing a flood of happiness.  I laid in my bed noting that the dream seemed more real than the feeling of my bed under my body.  I woke up for another day of work and on my arrival learned she had passed away.  As I was told I just nodded, but in my mind I thought, I know, she came to see me. 

It was only afterwards upon reading her death notice in the paper that I realized how many things I'd misunderstood.  Her voice was so weak, her ability to communicate so diminished.  Even though I misunderstood much of what she tried to tell me, I learned to speak a language that was so much more important. A language about seeing beyond what is before you, and connecting with the spirit of humanity that connects us all.

Saturday, October 1, 2011


I remember being young, really young and having a babysitter that made me laugh.  Having her come was so much fun, it was a special it was something to look forward to, even though I didn't like the idea of my mom leaving me.  At the time, I was around 4 years old. 

She had such an impact that when my baby sister was born, my parents asked me to help them choose a name for her.  They said that I could pick the babies middle name.  What an exciting task this was for me.  It made me think about this baby as a real live person.  Who did I want her to be like? 

Of course, very quickly my witty fun babysitter, Shelley came to mind.  When I imagined the characteristics I hoped to see in this new life, I thought, wouldn't it be great if she was funny and smart like Shelley.  Unfortunately for my sister (to some extent) her first name was to be Rachel.  Apparently Rachel and Shelley are derivatives of each other.

As it turned out, one the things I admire so much in my sister is her razor sharp sense of humor.  She has this witty, dry sense of humor that so often catches people off guard for an instant before laughter erupts.  She has an innate ability to see irony in everyday situations and to use her sarcastic characterizations as a tool to bring her friends to their knees in laughter.  This laughter has been such a tool for her to make tense, scary, and overwhelming situations bearable. 

So many other people who have the gift of humor have held my deepest regard.  It is such a gift. Laughter has the most amazing power to heal and unite people.  I often wish I was less of a ponderer and more witty.  But having people with these gifts around me has no doubt influenced me, washing my world with richness and color.

Friday, September 30, 2011

The Gift of Giving

In a hospital bed I wrestled with the belief that this was the last day of my life. I was 33 years old and a single mom to two children ages 14 and 10 years. I was paralyzed on my left side and recovering from a brain surgery that removed a portion of a tumor that had invaded my brain.

A shroud of uncertainty provided a stark contrast on which little miracles played out daily. Family and friends did a great job of making my children feel secure. Meals arrived at my parents’ house to nourish weary bodies. Each day was a gift. Each face that appeared with gifts of love and concern was treasured. Cards, prayers and love flooded my room, overwhelming and humbling me.

In the meantime, my physical status continued to deteriorate. Answers were out numbered by questions. I was unable to wash my hair or have a shower for the first weeks. All I wanted was a clean mouth but the hospital didn’t offer mouth wash or toothpaste. With my energy in short supply I was grateful for family and friends who celebrated small moments and hard won achievements with me.

My aunt thought long and hard about how she could help. She decided to give the kids money to buy something special just for them. I was relieved that people were keeping my kids in their thoughts so I could focus on my recovery.

The days in hospital were long and exhausting. One day I returned to my room from a therapy session and found a little box on my bedside table. It was made up in Christmas colours and adorned the Salvation Army symbol. It contained shampoo, soap, and a toothbrush and toothpaste. I was so moved by the gesture that unknowing people offered me during this difficult time. When my family came to visit that evening I told them of the kind gift I got from strangers.
Later that evening it was time for the kids to go and spend the money that was given to them. My daughter bought clothing and had a wonderful time with my fashion savvy aunt. They laughed and shared advice, both treasuring the time together. My son patiently waited for his turn to shop, thoughtfully considering how he would spend his money.

When his time came, he bought a pair of shoes from a discount store. Upon leaving the store the sound of a bell ringing caught his attention. He walked away from his aunt and sister and approached a Salvation Army bell ringer in the mall. My aunt and his sister were amazed as he deposited all the money he had left. He thanked the bell ringer and said here is some money so you can help other people like you helped my mom.

Thursday, September 29, 2011

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

Wednesday, September 28, 2011

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.

Life of a parent

I will never cease to be amazed by how my son's brain works.

His mind is this intricate little web of complex thoughts so rarely shared that he is easily and so often underestimated. Since he was young he didn't take any risk that wasn't carefully evaluated, thought through and planned. No step would be taken until he had assessed and measured the task to ensure absolute success. I can think of examples of his complex inner workings that date back to infancy.

Tonight, we were on our way home from a mom and son night out. We went to see Moneyball, a movie that I'd heard him casually refer to wanting to see. He has played baseball for the past several years and I assumed his interest in the movie originated with his own experiences on the baseball diamond.

The movie was thought provoking and it was a nice evening out for us both. As we drove home he said I thought it was going to be good. It was based on a true story you know. I didn't know that. He proceeded to tell me that the story was written by Micheal Lewis and that he had taken note of the story when it was released in print a few years ago.

He said remember when we went to Chapters and I asked you to buy me the book Liars Poker? This was a book I had looked at at the time and thought was well beyond his years (he was about 13 at the time). He explained that he really wanted the book Moneyball at the time but at $24 he thought I would say no, this book was being sold for less money so he was willing to settle for reading another work by the acclaimed writer.

He went on to talk about the personality assessment profiles that he is taking in his careers class and what they are teaching him about his strengths and weaknesses. The tests and measures indicate that he his an independent thinker with strong intrapersonal skills. He is introverted, thoughtful and likes to work on his own. Sharing his thoughts and feelings come only after great deliberation. He is very humble and reserved and the depth of his thoughtfulness is often cloaked in subtlety.

He explained that the results of the True Colours test indicated that he was an equal mix of green and gold. Green is an expression of the logic - the system of existence and the abundance of this color in nature. Greens are concerned with the world's challenges, such as preserving the wisdom of mother earth for the future. Psychological research has shown the color Green to have a calming effect and many Greens demonstrate a composed demeanor using mind over emotion to orchestrate and solve the mysteries of life. Where as Gold is described as by the test as being associated with a person who has reverence for traditions, dates and customs. Gold is a color with numerous metaphors associated with it. Think of the common phrase, “Good as Gold”. It represents value, stability and strength. The expression “Solid Gold work ethic” conjures up an image of someone who is very responsible... on time, organized, fulfills their obligations with stellar dependability, efficiency and thoroughness. The classic expression “sets the Gold standard” is also a suitable fit.

These characteristics so perfectly sum up his psyche. Another example of my tendency to accept on face value his underrepresented thoughtfulness comes immediately to mind. A few years ago he asked for a bird feeder. He had taken an interest in birds and was studying encyclopedias and any other resources (as he has so many other times in life) to learn as much as he could about the various species.

For Christmas I made sure that he had a nice bird feeder and seed under the tree. I thought he would be excited when he opened the gift. Instead he said that the reason he had been asking for one was that the activity of the birds in and out of the tree would dissuade the bee's from building nests in the tree. The previous year we had a bee's nest that made it hard for him to cut the grass under the tree.

Such wisdom for such a young man. I am so regularly humbled by his patience with me as I slowly uncover how complex and thoughtful he is. I am reminded of how much we stand to gain by listening more and asking the right questions.
“There is no greater agony than bearing an untold story inside you.” Maya Angelou