I'm losing my nerve. That's how I feel sometimes in the middle of the night, and I think about what's ahead of me. I know too much from previous surgeries how much work I have ahead of me, and how many different things can go wrong. I trust my doctor fully, its my spinal cord and it’s history that makes me have doubt.

I was having one such day last week when the phone rang. It was my daughter's friend from high school. I recognized her sweet upbeat voice immediately. She had been reading my blog and had something she wanted to say. She read aloud what she was about to send me and as she did - tears streamed down my face. In fact she asked me to put it right here for you all to read. Here it is and I will give an explanation later in the post.

"One of the people I am most grateful for is Maureen Clout. Growing up, I survived an abusive home environment. In short, my father suffered from alcoholism, my mother struggled with mental illness, as well as, the emotional abuse my father inflicted on the both of us. At 16 I conferred with my friends and boyfriend; and my friend Jerri took my concerns seriously. She labeled my situation as abuse (which I had never admitted) and suggested I visit a women's shelter-which her mom had experience working at. I will never forget speaking with her mom on the phone, and the difference of a teenage girl venting to her friends’ vs a woman telling a fellow woman about her hardships. She treated me like an adult, inspired me, assured me, and validated my concerns. I left home that day. This was just the beginning of Maureen's (or Momma Clout's) kindness and care for me. In addition to being the kind of mom figurehead that a teenager's best friend's mom is, she went above and beyond for me, and one of my biggest fears in life is that I didn't; or will never be able to express the gratitude I feel towards her during this completely messed up time of my life. I wanted a mom to go prom dress shopping with me. Maureen was there, critiqued (in a sensible mom way), complimented, and even paid for my prom dress. She took as many (and as a mom excited) prom pictures as she did of her daughter, and my honorary sister, Jerri.

Before I went away for university, she took me out shopping and bought personal essentials to look out for me. Looking back now, it doesn't seem like much, but at the time, bulk shower gel and body lotion were things I never would've thought of, but Momma Clout knew I needed so desperately. These are just some of the things she did. She also cooked oh so many dinners, gave so many bear hugs, pretended to be my mom to authorize the piercing of my ears, and encouraged me to make good choices in school. And for that, and so much more that can't be put into words, she is someone I am so very grateful of."

That is the precious words of gratitude from someone I will always consider family. Her bright smile and clear eager eyes were one of the first things we saw each and every morning of Jerri’s high school years. She spent many hours with us, all of them were pleasant. She treated Meghan like a sister and Barry and I with respect always.

What she didn't say in that gratitude note was she was in a lot of pain. Not only the emotional pain of what she has told you, which is more than many will experience in a lifetime; she has serious physical pain.

I had always known that she had scoliosis -- it was visibly obvious. One day she talked to me about it and took off her shirt to show me. I had to hold back tears. I couldn't believe this beautiful girl had to deal with this incredible situation.... and alone. We talked for sometime that day, and with her university career about to start the following year I was nervous for her. A specialist had told her years previous, that she required surgery for her very large curvature of her spine. She said, just wasn't a priority in their household. She was a child, she had wanted it fixed, but didn't know what she could do for herself. That day we made a plan. She asked me to help her and I wasn't sure how, but I sure was going to. I felt she had enough pain in her life, some that couldn't be fixed, and some that could. I felt a surge of love and admiration for this young girl with all she had endured.

I had to find a way to help her without intruding on her broken family. Although at that time she wasn't speaking to them, I did not want to be a part of severing any ties she had left.

The perfect solution came to me, The Shriners Hospital in Montreal. Our local Shriners met and approved her for special care through their club. They brought her to Montreal assessed and cared for her and paid for everything. Right up until it was time for her to go for surgery, I had hoped one of her parents would accompany her. Sadly they did not. I couldn't physically make the trip because of my own health at the time. Her boyfriend's father stepped up and was there for her all the way.

She had a massive surgery. She recovered well, and also recovered her school year. She was accepted into university that fall and she hadn't missed a beat. That was five years ago and I am so happy to report she has graduated university with a degree in psychology. She has a full time job, but what is even more remarkable is she is very healthy, pain free and she has even started running.

In yesterday's post we talked about whom we looked up to because of their resiliency- there is no better choice for me. I love this girl and couldn't be more proud for all she has accomplished under such adverse conditions. She's small, but mighty and one of my personal heroes.

Disclaimer: I felt a little uncomfortable posting this, and gave it great thought. I did what I did for her as a service. It was a private and precious relationship. She however, took it to the next level with her courage and strength. To show that it was necessary to tell what others had done for her. It is she not I, that deserves credit. Many are helped but few soar to new heights as she did.

What is resiliency and why do some people seem to have it more than others.  That's a big question.  One that has been asked for many years, in many different situations.  When it comes to pain management it is a huge tool in your kit for making a happy productive life, despite being in pain or having a chronic illness. So I decided to explore it a little more.

According to Webster to be resilient is to: "able to become strong, healthy, or successful again after something bad happens."

Psychologists broaden that definition to include acceptance as a large part of resiliency. In an article in psychology today one of the components of a resilient person is this:

"Make connections. Good relationships with close family members, friends or others are important. Accepting help and support from those who care about you and will listen to you strengthens resilience. Some people find that being active in civic groups, faith-based organizations, or other local groups provides social support and can help with reclaiming hope. Assisting others in their time of need also can benefit the helper".

Avoid seeing crises as insurmountable problems. You can't change the fact that highly stressful events happen, but you can change how you interpret and respond to these events. Try looking beyond the present to how future circumstances may be a little better. Note any subtle ways in which you might already feel somewhat better as you deal with difficult situations.

Accept that change is a part of living. Certain goals may no longer be attainable as a result of adverse situations. Accepting circumstances that cannot be changed can help you focus on circumstances that you can alter.

Move toward your goals. Develop some realistic goals. Do something regularly — even if it seems like a small accomplishment — that enables you to move toward your goals. Instead of focusing on tasks that seem unachievable, ask yourself, "What's one thing I know I can accomplish today that helps me move in the direction I want to go?"

Take decisive actions. Act on adverse situations as much as you can. Take decisive actions, rather than detaching completely from problems and stresses and wishing they would just go away.

Look for opportunities for self-discovery. People often learn something about themselves and may find that they have grown in some respect as a result of their struggle with loss. Many people who have experienced tragedies and hardship have reported better relationships, greater sense of strength even while feeling vulnerable, increased sense of self-worth, a more developed spirituality and heightened appreciation for life.

Nurture a positive view of yourself. Developing confidence in your ability to solve problems and trusting your instincts helps build resilience.

Keep things in perspective. Even when facing very painful events, try to consider the stressful situation in a broader context and keep a long-term perspective. Avoid blowing the event out of proportion.

Maintain a hopeful outlook. An optimistic outlook enables you to expect that good things will happen in your life. Try visualizing what you want, rather than worrying about what you fear.

Take care of yourself. Pay attention to your own needs and feelings. Engage in activities that you enjoy and find relaxing. Exercise regularly. Taking care of yourself helps to keep your mind and body primed to deal with situations that require resilience.

Additional ways of strengthening resilience may be helpful. For example, some people write about their deepest thoughts and feelings related to trauma or other stressful events in their life. Meditation and spiritual practices help some people build connections and restore hope.
The key is to identify ways that are likely to work well for you as part of your own personal strategy for fostering resilience."

"They practice acceptance. Pain is painful, stress is stressful, and healing takes time. When we're in it, we want the pain to go away. When we're outside it, we want to take away the pain of those who we see suffering. Yet resilient people understand that stress/pain is a part of living that ebbs and flows. As hard as it is in the moment, it’s better to come to terms with the truth of the pain than to ignore it, repress it, or deny it. Acceptance is not about giving up and letting the stress take over, it's about leaning in to experience the full range of emotions and trusting that we will bounce back."

The full article can be read here.

The ability to look forward with hope, but to be accepting of what is right now seems to be a recurrent theme.  Even in the darkest moments a resilient person feels there is a small glimmer of light in the future.  

My Mother who also lives with chronic pain has a slow smile that comes, when she almost at the end of her rope - she quietly says "this too shall pass."  I admit I say that often to myself hearing her sweet voice in my head, as I do.

The reason I wanted to talk about this today is from all the reading I'm doing, it has become clear to me that some of us are more resilient than others -  but resiliency can be a learned behaviour.

On days when you feel like giving up, not getting out of bed or cancelling an event or social engagement because of fatigue or pain, reach within and see if you can find that inner resilience.
When you are a pain warrior, there comes a point along the way where it is just easier to disengage, to stay home, and to just stop.  That is where the danger of depression and you isolation creeps in.  Once you say no often enough, the invitations stop coming and you become impotent to more forward.  This not to be confused with a bad day or a bad period of time like pre or post surgery. I'm talking about settling. There is grace in acceptance that your life has changed and that in itself can help you move forward. Be careful though, that you are not accepting too little of yourself. Goals, moving forward, and a glimmer of hope for the future, is what keeps us engaging people.
Think about your own resiliency, think about others.  Is there someone you know who you admire or secretly envy because of their resiliency? I think about Christopher Reeves and Michael J Fox, and admire what they have done.  Believe me it doesn't have to be a movie star.  Tomorrow I will tell you a story of a 16 year old girl whose resiliency I have always admired, and I think you will too.  Stay tuned!

When I started this journey of a daily blog, it was on the persistence of my daughter to do so.  She had been back home with my husband and I, having finished an undergraduate degree in neuroscience and a three-month travel stint to South East Asia.  She hasn't lived at home for five years at this point, and it was a welcome short-term plan before she started a career in the city. 

Jerri has always been wise beyond her years, however she now has some science behind he wisdom.  She did a fourth year thesis on the perception of one's disabilities compared to the clinical findings.  Coincidentally, this paper, which is being considered for publication, is coauthored by my own neurosurgeon, Dr. Michael Fehlings.

This newfound knowledge of hers has not only been a sense of pride as her mother, but the credibility of her opinion on this topic has obviously heightened my interest. 

I write about her influence on me to write this blog, because she was able to convince me I had something to offer.  Something to offer.  That my friends is music to the ears of anyone with chronic pain and illness.  So much of our lives have been stripped back out of necessity, that one day you wake up and wonder where "you" went!

I loved my work in the social work field, it was where I felt most like myself, and many thought counselling was my gift.  I just know I loved youth, and in cases where they felt alone and in need, I wanted to help. 

I also loved my first career, that of a florist and flower shop manager.  It was my creative outlet, and became a great sideline work while raising kids.   When pain meant I couldn't work full time, the most wonderful opportunity came along. It was a job that didn't feel like a job.  It was teaching parents and families strategies for parenting.  I loved it.  I got to spend five mornings a week with young parents, who like myself, were raising children to be the best they could be.  It was a fantastic time in my life.  That was until pain griped me into such a knot that I was asked by my doctor to give up working.  After some convincing, I did.  It was right to do so, because it was the only thing in the end I could manage. I would work for four hours, go home and lie down until I did it again the next day.  It wasn't fair to my family.  I was just hanging on by a thread. I always thought I would go back to it, it never happened.

Through the years I have done short-term jobs and worked casually at a local flower shop on occasion, but now even that is on hold now.

Getting back to the purpose of the blog, it turned out to be twofold. Jerri saw me in a different light. Now that she had studied people's attitudes toward pain and disability, she thought I had a lot to offer people from my experience. It didn't hurt that the doctors included in the study used me as an example of someone who makes the most of their disability and continues to live life in a modified way. One of my coping skills through the years has been to find a purpose.  So the blog seemed to fit both.  

So my friends, for the first time I am issuing homework. Find a purpose.  It doesn't need to be a profound thing. I am talking about a purpose for here and now.  I don't expect I will be this physically incapable forever, but for now, writing is what I can do, one of the only things.  I will always write but I hope my life will be filled with canoeing, fishing, travel etc. in the future, but for now I have a purpose.

What I am asking of you is to find something for yourself now. It can be anything.  Maybe an organizational project, one in which your physical limitations does not hinder you.  It can be and I really encourage this, a creative project.  Do you paint, play music, knit etc.? One of my readers has said she will start to sew.  Creating something really does something for your soul, and you have a sense of completion, along with your creation of beauty.  It can also be a goal, something as simple as taking the dog for two ten minute walks a day.  There are many ways to find something that you can find purpose in, but the key is to make a commitment to it.  It may be that there is someone who needs you right now.  Be there for them, just one small thing every day. That is what this blog has done for me.  It has forced me to write every single day, and I am proud that so far I have not missed a day.  

If you are comfortable doing so please post in the comments section, what it is you will commit to. You can use your own name or somebody else's name, names are not important. I encourage others to continue to private message me or whatever is more comfortable for you.

Those of you who are reading and don't have pain, I challenge you to do the same.  Find one small or large thing that is new and do it with purpose daily.  Write it on our comments section and help inspire all of us.  Don't be shy, if you have a physically capable body and your tasks are using it, tell us about it. We can cheer you on, even if we cannot participate. Not everyone can run a marathon, dance a ballet, or create a piece of art, but will all can admire those who do.

Let's get to it.  Find something, anything, and make it a daily commitment, and let's see if we can create a surge of energy from it.

“He who has a why to live for can bear almost any how.”

― Friedrich Nietzsche

We stand in judgment every day, several times a day. As you read that sentence you probably thought, no not me, however most times we judge, we are not even aware.  His tie is crooked, her dress is too short, room is too cold,  this traffic is horrendous. All of those thoughts are judgments about “what is’. 

If we were to look at things with a beginners mind, those things would be normal to us because there would be no perceived notion of what or how things should be. 

It's an interesting concept and one I'm enjoying exploring through this mindfulness course I'm doing.

Many of the ways I am using mindfulness is to look at situations that would normally start out with a preconceived notion of being negative.  Situations like waiting for instance, is normally not a good experience for me.  Now I choose a beginners mind and go into the waiting situation feeling nothing.  I observe what's around me with the curiosity of someone who has never been in that situation before.  It is different I have to say.  It doesn't make waiting pleasant for me but it does take away the feelings of impatience I normally feel.

We have been asked to use a beginner's mind when it comes to pain. That in itself is a very different approach.  It forces you to focus fully on the here and now and not tell yourself the stories we normally would tell.  As an example you may be going to visit a relative who always manages to hurt your feelings and you leave the visit with angry or offended. If you walk into the situation without any feelings of what happened last time and all the times before, and what might happen today, can it change the outcome?  I'm not sure, but from what I am reading and learning about these things it tells me when we don't bring our baggage into a situation, it can in fact change the outcome. 

The next step is if the person acts the way they normally do, you are to look at the behaviour in a curious way, without the feeling that is normally attached to the incident.  It is a way of shielding yourself from their opinions and actions.  There is a saying I love, what other people think of me is none of my business.  Doesn't that just take the sting out of it?  It is a practice as with all things mindful, but one that I think might be worth trying.

I'd like to give that same example now with physical pain. When those of us with chronic pain start to have a flare up we have a little conversation about it with ourselves.  The conversation goes something like this: not this again, I can't believe that is happening now, it is going to ruin everything, what if it gets worse...I won't be able to go to work, school, on my date etc.  The stories in our heads can go on and on.  It creates discomfort in itself.  Muscles tightening, shoulders rise,  the mind becomes filled with negative emotions and stress hormones are released. 

The method of looking at pain with a beginner's mind asks that the story never start.  You feel the pain; you notice it for what it is, here and now. If you don't project what it will be like later or how bad it was yesterday, then you can sometimes stop it from escalating.  It is an interesting concept and one that I have been trying.  What I have noticed is, I do not spend as much time thinking about the what ifs’.  I recognize the pain I am experiencing at that moment, and don't worry about the hours and days to follow. 

I have heard from some of my readers that they don't have physical pain but what I am writing often describes the way they feel emotionally.  I hadn't made the connection but I can see it now, so thanks for pointing that out. 

Let's try approaching both physical and emotional pain with a beginner's mind.

Most things in life have a price of admission.  Some are overt, like a movie or a musical, others are not so obvious.  We fall in love knowing somewhere in the beauty and excitement of it that we may get hurt.  It is the farthest thing from our minds but it is there.  For those who have been hurt before it may even be a silent conversation in which you weigh the pros and cons.  Some back away, knowing they are too fragile to take that chance at that time.  Others bound in with the enthusiasm of the first time, forgetting what it feels like to be hurt and only wanting the love to embrace them.  They are in the moment. And still there is another, the one who feels the moment, loves it, and then decides yes I will do this and if I hurt I will do what it takes to put myself back together.

Why am I talking about the cost of love on a chronic pain blog?  It is so fitting I believe, with how those of us with limitations, access our social activities.  They are the things in life we still have some control of.

Energy and comfort must be spent as though we are on a budget.  We must decide carefully where it is spent and what the actual cost will be.  It's as though you see a beautiful outfit you desperately want in a store and you don't know the price, they won't give you the price, there's no way to find out, that is until- you buy it-then it's yours, no matter what the price.

To make matters worse, everyone gets to have a say as to whether you buy the outfit or not, If you buy the outfit and it turns out to be too pricy someone will always say, I told you so.  If you buy it and it is a good deal, someone will always tell you I told you so.
 
Enough with the metaphors.  When you have a disease or chronic illness you have to weigh your options when deciding on social activities.  It can be very difficult because it can be the things you love most you have to say no to.  The most frustrating is the inconsistency of what we are able to do.  One week an outing is perfect, the next it just can't happen.  Being inconsistent doesn't make for a good employee, and it can make for a challenging partner or friend.

When there is something I really want to do I have learned to make it happen to the best of my ability - here's how.

1.       Rest as much as possible before the event, for days if possible.

2.       Plan absolutely nothing for the day after the event.

3.       Think ahead and make things as comfortable as possible while you are at the event.

4.       Be willing to give it up if it turns out to be a very bad day for you. 

I'll give you an example.  This past weekend I wanted to go to my sisters in Ottawa and for my sister, daughter and I to spend a SPA for the day.  That was a big step for me with the kind of pain I was dealing with, however I weighed it out.  I rested most of the week before I went, and I haven't been out of the house this week until today, Friday.  It was worth it.  I also was willing to use a cane, which is something I despise because it causes me shoulder pain.  Better to have shoulder pain, then to fall.  I also did not do one other thing the whole time we were there on the weekend.  We didn't shop, didn't go out for dinner or any other event.  I knew the risk, I knew the pay off.  I loved it, and it was worth every minute of planning and adjusting.

There's another example this week.  There's a huge event happening here at our university called F.I.R.S.T Robotics for youth from around the province.  It is a fantastic event and one I love being a part of.  Last year I volunteered for three days and absolutely enjoyed every minute of it.  It is a high energy, very positive environment filled with both youth and dignitaries.  My role was the same this year and I was so looking forward to it.  It was with a heavy heart that I had to resign.  I knew it was impossible for me this year, yet there will be other years.  It doesn't make it any easier.  What does help however is there is a seat in the VIP lounge for me to come and be a guest this year, when and if I feel up for it.  That does help.

So the next time you are in the presence of   someone with a chronic illness or pain, know that it took a lot for them to be there and they will still be paying long after the party is over.

Did you ever notice it's the things you suddenly can't do that you miss the most?  For me it's going for a walk.  With the pain I am experiencing right now, walking is the last thing I can do. There are days when I put my foot on the floor for the first time in the morning and it burns so badly, that I have to wait to get up.  I just can't bear to stand on it at that moment. Walking around the house can even be too much for me. I often have to sit down long before I have finished a task. Whinnie and I are missing our much-loved shift as pet therapist team because walking around the hospital is not possible for me today. So, I decided to talk about walking.

To be fair, my outdoor walks were never more than twenty minutes because with fatigue, came a lack of balance and I fell more easily.  I therefore was always careful to not be gone too long.

I do miss it though. My walks were fortunate enough to be along a Lake Nipissing and filled with beauty.

Walking for me and I expect for many, is a form of informal meditation, a time to figure things out. There's a connection to self and to nature, not to mention one of the most approved forms of exercise.

What I have learned through my meditation course and various readings on mindfulness is that there really is a way to mediate while walking.  I expect for those who say they do not have time to do either -  this is a way to make it part of your life. According to the Anxiety and Depression Association of America, the good news is that ten minutes a day is deemed to be very helpful.

"Psychologists studying how exercise relieves anxiety and depression suggest that a 10-minute walk may be just as good as a 45-minute workout. Some studies show that exercise can work quickly to elevate depressed mood in many people. Although the effects may be temporary, they demonstrate that a brisk walk or other simple activity can deliver several hours of relief, similar to taking an aspirin for a headache."  Anxiety and Depression Association of America.

Some of my readers have said they would love to meditate; however they find it very difficult to sit still and keep thoughts out. Meditation does not mean you keep thoughts out. You acknowledge the thought and let it go, and it does take practice to quiet the mind.  Walking can be a great start for those who have the difficulty of not being able to be still.

"Most people in the West associate meditation with sitting quietly, but traditional Buddhist teachings identify four meditation postures: sitting, walking, standing and lying down. All four are a valid means of cultivating a calm and clear mindfulness of the present moment. The most common meditation posture after sitting is walking. In meditation centers and monasteries, indoor halls and outdoor paths are often built for walking meditation. On meditation retreats, regular walking meditation is an integral part of the schedule. In practice outside of retreats, some people will include walking as part of their daily meditation practice – for example, ten or twenty minutes of walking prior to sitting, or walking meditation instead of sitting."  http://www.insightmeditationcenter.org/books-articles/articles/instructions-for-walking-meditation/

Full instructions can be found on this website.

Furthermore walking is a way to calm the mind when little else can.  Have you ever had a disagreement with somebody and one of you has stormed off to "go for a walk"; and then came home calm, cool,  and ready to talk sensibly about the topic?  That in itself is a form of meditation, a form of coming back to oneself. Walking it off brings clarity and perspective. 

For those of you who can, I ask you to walk today for at least ten minutes.  Inside or out, it doesn't matter, both are effective.  Notice your breathing, feel your feet hit the floor or ground and feel the swing of your leg as your gait is adjusting to your stride. If you're outside connect only with yourself and nature keeping an intention present in your mind.

Walking is good for the soul...and the soles!
 

“All truly great thoughts are conceived while walking.”

― Friedrich Nietzsche

It has been a month since I saw my neurosurgeon and was given the news that another spinal surgery was necessary. I wasn't surprised that something serious was wrong, I had been down this path before. I was shocked however by the extent at which they would have to go to fix the problem.

This wasn't a planned surgery so I am being fit into an already full schedule. That is where the unknown comes from. I have to wait until it all works out to know when the surgery will be. It has made it very difficult to plan. It's been hard enough getting used to the idea of another surgery but the unknown has made it worse.

Another unknown is how long the recovery will be. It is said to be three to six months for this type of surgery, however with a pre-existing spinal cord injury it is not easy to judge. The spinal cord loses resiliency we are told, the more times there is surgery on those of us with injury. It doesn't mean it will not recover, it means there is no clear path.

I was told to prepare for rehabilitation in an inpatient centre in Toronto. It is not a definite, and once again there is no way to tell for how long. We are also uncertain about the areas of the body that will be affected. Will it include the legs, back, bowel, bladder? We are unsure.

To add to the mix of uncertainty we are unsure of where our girls will be when this happens. Meghan, having finished her university year, has applied to jobs in her field in Guelph, Toronto and here. Jerri is applying for graduate schools and jobs in Toronto and abroad.

Given some timelines, Barry may be able to work in Toronto while I recover, but without dates, he's at a loss.

What we do know is very little and much is out of our control. It is a lesson in life, we think we control a lot, but in fact very little is in our control.

I'm very happy I have started meditation and mindfulness because it has helped with the lack of control, and impatience I'm feeling.

What I know for sure is I have a great doctor, in a great hospital and if I need rehab it will be in a first class rehab centre. But I still wish I knew more.