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

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 Matthew Tull, PhD.  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.

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 

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. 

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.

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.

Laughter

Image: Redsevenleisure

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.