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Day 384. Pride. 

3/23/2016

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Okay, don't laugh! I walked 2km on my own steam today with only a very short break. I know it doesn't seem like much but it really was a challenge for me. It is very deceiving how I can stroll around a grocery store or put in the same number of steps at other time without the feeling of fatigue. It all adds up and it's all movement but when I "went for a walk" the last time I had a walker with me. I had walked the 2km quite easily at that time. When the snow arrived I put that walker away knowing when spring arrived I would walk without it.
I have been steadily getting stronger and with the weather improving along with me, I decided to go for a walk. While Barry was surprised at my progress I was a little disappointed with needing a break. I thought I would do that walk easily. I hadn't realized how much the walker had helped me. I had put my pride away and used that thing to keep me moving. My physiotherapist and doctors all said it was the right thing to do but so many of their patients don't use a walker because they are embarrassed by it.
I have to say I was embarrassed by it too. I'm not sure what it is in our society that doesn't allow us to accept the tools and support we need to help us in our time of need, but there is something. I'm guessing it's pride. That said I am grateful I had enough sense to swallow that pride and use the walker. If I hadn't I now know I wouldn't have gotten up to that 2km mark. I am barely there now all these months later without it.
In my case it was a walker. In yours it may be a cane, a brace, a wheelchair or even a psychiatrist. Use the tools you need to get where you want to be. Put pride away. Thats a false pride anyway, the real pride comes when you can do it yourself after you have done the work with the support you needed.
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Day 379. Dancing Fool!

3/18/2016

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I come from a long line of dancers. We all love music and can't sit down when there's a song we love. Don't get me wrong, I'm not a skilled or trained dancer. In fact I have never had a lesson in my life. Nobody in my family has but that doesn't stop us. We are usually the first on the dance floor and the last to leave.

My brothers and sisters and I come by it honestly. My mother can't sit still when she there's music and although she is in a wheel chair now, she has been known to have a few dances in that chair. Last year at my brother's wedding she "danced" so much she had very sore arms for weeks afterward. At any wedding or reception where there is music our family is dancing and having a good time. Some of my favorite memories of my parents are them dancing in our living room.
Our girls seem to have inherited that love of dancing. They met last Thursday night in Toronto and went to a 90's dance party. They got on the dance floor at 10 pm and didn't leave it until 2 am. When I say they didn't leave it, I mean; not for a break, not for a drink, not even to pee! I was so happy to hear that story.

The last couple of years have been hard on me in many ways, but one I seldom mention is I couldn't dance. Lack of balance and nerve pain does not inspire dancing. With something like forty falls it would have been dangerous to even attempt it. My body just did not move in that way for a long time.
During that time my husband had played in a band many times and many times I'd go out to watch him play. I watched as others went to the dance floor hearing their favorite songs and unable to sit down. For me it was an awful feeling. I would sit there and want to dance so badly, but just could not. Many times I was asked to dance and just had to say no and that made me feel even worse. The wives of the band members are such fun loving people and love to dance, so often they were on the dance floor too.

I remember one night in particular. It was a fiftieth birthday party and the band was playing and everyone, I mean everyone was dancing. I wanted to so badly. It was close to one of my upcoming surgeries and I was in a lot of pain. I had considered not going, but I wanted to be there for the birthday girl and at least stay a while. It was a tough night. I felt on the outside looking in. Not only could I not dance, I needed to sit and while some didn't dance all night they stood and watched the band. I remember thinking this is why some people don't like parties. I couldn't find a way to fit in.
That night and many others after, I decided I was determined, I would dance again. I knew in my heart that music was a part of me and I needed to heal well enough to be out on that dance floor while my husband played. It didn't happen for a long time. Then four months post op Barry's band was playing and we were all out watching. Everyone was dancing and having a great time. I was sitting knowing I wasn't ready yet when Jerri's boyfriend Shayn took my hand and brought me to the dance floor for a slow dance. It was so sweet of him to see how badly I wanted to dance and he saw an opportunity. I was a nervous wreak. So was Barry I could see it in his face. There were so many people - we were afraid someone would bump me and I would crumble. Shayn was hanging on pretty tight so I knew that wouldn't happen.

It was there and then I made a solid plan. The band was playing again in six weeks. I had six weeks to get stronger and be up there on my own steam.

Six weeks came and went. I went to Physio, twice a week and saw an osteopath another time during the week, and I worked my exercises at home. I'm happy to say, last Friday with my sister Mary, friend Lynn and daughter Jerri there to support me I was on that dance floor. I not only was on that dance floor, I hardly left it! The wives of the band members, Darlene and Mannon were up there with me and all those doctors, surgeries and rehab seemed a million miles away. What a fun night!

Probably needless to say I paid for it the next day, and the next, etc. But when I went to Physio I told him I had actually earned my aches, pains and muscles spasms this week. He asked me how, and when I answered I heard the most genuine belly laugh ever. With a shake of disbelief, he started working on me. At my osteopath appointment, I had to explain the damage, and from him I got a huge smile and a high five!

Life is meant to be lived. It is not always easy, but it can be fun if you take advantage of the moments of celebration. Sometimes they are birthdays, anniversaries but sometimes they are ordinary days in which you can dance! I hope you dance too, when you can.


Here's my inspiration for me as a senior. Watch it to the end it is so perfect.

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Day 375. One year of Friendship.

3/14/2016

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In the past, I have discussed the losses of chronic pain, one of those losses is not being in the workforce for many of us. That in itself, can cause isolation but couple it with the need to bow out of social events from time to time and it leaves many lonely.
I've always been aware of the fact that I don't have many opportunities to meet new people and socialize, therefore I work on it. I volunteer when I can and don't miss anything unless I really have to. Coming from a background of social work I know the risks and signs of depression and avoid them at all cost.
Many of my friends in the early years spent time together skiing, walking and going to the gym. None of which I was able to take part in. We adjusted our social life to make the accommodation. We like to have people over for dinner, play games, or go out to a movie. During the long winter months it can feel especially isolating. In the summer however it is much easier to be out and about without the risk of falling, and there's so much more to do.
Last winter having had a recent surgery and facing another, I knew it was going to be a long one. My back didn't allow me to do much at that time, and my legs were so unreliable I was falling with frequency. I also knew the pain was at a peak and I needed some more tools to deal with it. That's when I saw information about a course called The Mindfulness Solution to Pain. It sounded interesting to me because I had meditated on and off in my life, and I did like it. I knew there wasn't enough pain medication to take away the nerve pain I was feeling without knocking me out, and I knew I had to get out of the house. With this in mind I registered for the course.
Those who know me, know I have taken part in programs, courses, etc for pain management. I was a little reluctant, based on my previous attempts. Some of my pain management programs had become group bitch sessions about people's lot in life. I didn't want or need that. Not that I'm not interested in other people's perspective and situations, I am. It just didn't help me to sit in a group and talk about how badly I felt. I always felt worse afterward.
I had high hopes that this wasn't going to be the case with this group. I had promised myself I would stay for two of the thirteen sessions no matter what, then I would make a judgement. I was pleasantly surprised, right at the first one. This course was about meditation and how it could help with pain, and not about everyone's problems. While there wasn't time to talk casually throughout the sessions we soon began seeking each other out on breaks, and more than once we had a good laugh or two in the classroom.
As the weeks went on, even in that structured setting, personalities emerged and a core group formed. A group of five of us became friends. We are a lighthearted, fun loving group of woman who happen to have pain. Pain does not define our friendship, our personalities do.
We have been meeting for coffee, lunches and dinner. Tonight my four new friends and I, will celebrate our one year anniversary with dinner at our house. It will be a good time, it always is when we are together.
We are a support for each other and we are genuine friends. We laugh a lot, talk and listen a lot.
It goes to show pushing yourself is the right thing sometimes. I found four new friends who are very special to me in the least likely place.
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Day 372. A Journey of your own. Part II.

3/11/2016

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Seeing the pain in parents faces at Lyndhurst always left me wondering how much support there was for families.

I knew in our case I had one visit from a psychologist and that was it. I could have used more, and I'm sure my family could have too.
Why is it that the medical community and the psychological community are so far apart?  Shouldn't there be a counselor of some kind available for these situations? I certainly think so. I would also say having spent many days in I.C.U there should be one there as well. Having been a patient on the brain and spinal surgery floor for many hours I know one is needed there as well. Patients, families and loved ones are dealing with life changing things in hospitals every day, yet we don't offer any psychological support whatsoever in most cases. I don't understand.
Nurses, physiotherapists, and doctors see and hear all kinds of emotions with no time or expertise to deal with it. I would say having a counselor on hand for requests would help in so many ways, including freeing up the staff to do what they are good at. I n turn, a patient could better focus on what was at hand, such as Physio, if their emotions had been looked after by a professional.
So much of the time the medical community is expected to deal in black and white. What they can see and touch. Emotions for the patients and even of themselves, are not factored into the treatment. How many times can you deliver bad news to a patient and not be affected by it. How can you see a patient suffer to the end, time and time again, and not let the emotions for their loved ones affect you?
These are all questions I have without answers. I know patients and medical staff alike, do not get the emotional and psychological support needed when dealing with a life changing illness or injury.
If you are ever in this situation look for the support you need even if it has to come from outside the hospital setting and remember family need that support as well.
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Day 371. A journey of your own. 

3/10/2016

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What life is without strife? None. It is difficult for many to deal with their own strife when faced with it at an unexpected juncture in their lives. Many spend countless hours asking why, yet others simply deny until it can no longer be denied. Families on the other hand see the struggle and want to help, but are dealing with their own grief, and their help is unfortunately not always so helpful. They can do all the practical things that need to be done but sometimes the emotional support has to come from elsewhere because their grief and sense of loss has left them requiring that support for themselves.
Having to give up a favourite pair of shoes, becomes giving up a favourite activity becomes giving up a job. Many grieve for years for the loss of things that they feel make up themselves. They feel struck in the why and trapped by their own denial and grief. Too miserable in their new existence they cannot move on. Yet there are others who appear to handle it seamlessly. They are struck by an illness or injury and they are not only willing but quite able to move forward without much of a kink in there existence. They seemingly take what life has given and rework attitudes and activities to match it. Resiliency!
I'm reminded of my time at Lyndhurst rehab centre. It's a renown spinal cord rehabilitation centre for those with spinal injuries. I was there unexpectedly are my first spinal surgery, having woken up after surgery to find I was partially paralyzed. I spent three months as an inpatient there and I struggled with my new existence.
I entered Lyndhurst by stretcher unable to walk on my own, though there was hope that I would again. I was completely overwhelmed. I had a young family and was four hours from home and no idea of what was ahead of me. I was traumatized.
Time and time again I watched as young men in their twenties showed up. They seemed depressed at first but within days they had found a buddy or two and was carrying on with what was in front of them. They watched sports, they hung out in the gym, played games etc. They were loud, they were young. I marvelled at them. Their resiliency impressed and actually inspired me. Watching them, knowing they wouldn't walk again, handle their situations by facing it dead on was quite something to see.
I was equally puzzled by the difference I saw in them when their parents visited. The pain was palatable in their eyes. They looked worn and beaten. The boys looked different in that environment. They would be showing their parents around, going for a meal or just hanging out but one thing was always the same; they were not carefree, they were quiet and pained. I saw the pain from the parents directly transferred to their sons' faces. I wasn't sure if they were more themselves with their parents around or had simply taken on their pain, but as time went on I believed the latter.
I can't pretend to imagine how difficult it would be to see someone you love in a wheelchair knowing that's their new life, especially a child. What I saw time and time again was that incredible pain being unknowingly passed down to the child.
It would have done the parents good to see their sons with their new friends; trying out tricks with their new wheels. That never happened there, the grief was too thick to penetrate.
The resiliency it takes to move forward in this case is incredible. What I know would have helped those young men, more than a fussing parent, would have been to see their parents love and acceptance just as they were in that moment.
Believing in our kids, and their ability to face whatever comes their way is difficult because it means they don't need us the same. And we all want perfect lives for our kids without strife, without pain, without illness. That will never happen, we all have our own paths, it will contain both happiness and struggles. It is up to us to deal with both, and up to parents to teach us how.
What it ultimately says to them when we hover, and try to fix, is that we think they can't handle whatever it is we are fixing. Stepping back and asking what you can do to make this easier for them may be the most important question you can ask a child of any age, who is struggling in anyway. It gets them what they need without us making them feel they are incapable. It may
also be the hardest thing you do as a parent but believe in them and their ability to handle what is in front of them, and their trust in you to ask for what they need.
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Day 365. One Year of Blogging.

3/4/2016

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It's hard to believe that I have been writing this blog for over a year now. When I reluctantly started to write about my journey of pain, spinal injury and surgeries I honestly wondered 'who the hell is going to want to read this stuff'. My darling daughter encouraged me. Jerri was at home at the time and was writing her travel blog, she showed me her beautiful blog and said I should do the same.
I couldn't imagine what I had to say that hasn't already been said. She assured me plenty of people will want to read, get tips and would be quite interested. Her point that writing will help me sort my own feelings of loss and frustration hit home. I had been writing on and off my whole life and she was right on with that comment.
So, I started writing. Never knowing from day to day where I was going with this 'Blog thing'. She put the site together for me and I had to admit it looked quite nice with my original photos and I did like the purpose it gave me. Then something happened. People I didn't even know started to contact me. They were saying they liked to read what I had to say and often it related in one way or another to what they were going through. I felt more purpose knowing somebody was out there checking in to read the next post. As time went by more and more people told me I had something to say. At first I was conflicted talking about pain, and the negative emotions around it. Wasn't it counter intuitive to our positive at all cost society that we live in? Yet I wanted to be authentic if I was going to go this. More and more people told me they loved that I told the gritty truth and that I had an overall positive approach they could relate to. I had made the connection I wanted to being truthful with a positive approach.
Here I am a year later and I have had 19,807 people from all over the world read my blog. That equates to 109,480 times someone has logged on and read what I had to say. There are readers from Canada; the USA, Japan, United Kingdom, Australia, New Zealand, all over Europe, China, India, Mexico and the Netherlands and many many more. I am astounded by that because I truly believed there wasn't much to say.
I'm not sure what resonates with readers or even how they find me. I'm just glad they do because it has helped me through an incredibly difficult time.


One year ago I didn't know that I would be having another serious spinal surgery; I didn't know that it would put me in a rehab hospital for five weeks afterward in Toronto, I didn't know I would be learning to walk again, I didn't know it would be so very difficult emotionally and physically. I didn't know that after all my hard work that it would not be successful, that I would have to do it all again. Only weeks after returning home feeling like I had been to battle and won, feeling as though I had conquered and was on the road to full recovery, I didn't know I would have to go back, in my weakened state and do it all again.
I walked into my surgeon's office having had the cat scan, thinking we would celebrate the victory, instead the blow was hard. The screws had let go, I had Osterperosis and a threat that the hardware could move again and possibly cause paralysis. There was no decision, no choice, we had to start over.
Today as I write this I am so glad I couldn't foresee the future, so glad there wasn't a crystal ball to show me all of this. I wouldn't have been able to see my strength, the love and support of my friends and my incredible family. All of you carried me through when it became too much for me. I wouldn't have been able to find my spirit and fight without you. So thank you for being in my corner when the fight started and staying there till the final bell was rung. It was a long hard road; but knowing so many of you were there for me, reading this blog, waiting for updates and offering everything from flowers, cards, and letters to week long stays at our home pitching in, kept me and our little family in the fight. Words can't do it justice, but I want to say how every supportive comment, to every act of kindness is the wind beneath a person's wings when they are going through something like this. Many times I have heard about people with serious illness and how in the beginning everyone is there and how lonely it gets when it drags on. I get that; hospitals, ICU'S and constant medical battles are not the top on anyone's list of places to visit but for those on the other end, it makes all the difference. Days are long, and only dotted with medical challenges so when somebody brings the outside world in, it reminds you of what you're fighting for.
With that thought in mind, I ask all of my readers to remember somebody who is going through a difficult time, and do something to help: big or small.
There were days when I felt exhausted, worn out and unmotivated, then someone would say or do the nicest thing. It encouraged me to try a little harder, to keep plugging away, and the next thing I knew I was smiling again.
My friends and family not only thought of me but of my wonderful caregiver, my husband, Barry. Even though I had the best medical care, a lot is expected of immediate family. Friends and family, saw how much fell on him, how tired he was getting and offered support and kindness for him as well.
We live in a world were we are encouraged to show our best self at all times. Just look at Facebook, Instagram and other social media. We are all models, and pictures of health, wealth and wellness in every aspect of our lives, but that's not real. We all suffer from time to time, we all need a helping hand, even on our good days. So when something happens to shake your world, don't be afraid to ask. Even more importantly, don't let the pictures and status fool you, your friends need you when life has handed them a challenge, be there.
I feel such a sense of gratitude for the wonderful people in my life. I have the best MD, the most wonderful neurosurgeon, but nothing compares to my family members and friends who stayed the course, saw what was needed and never tired of cheering us on. 
Words are healing. Writing has always been my vice and the blog as Jerri promised has been a wonderful thing for me.
So thank you Jerri, thank you readers. For those of you who write to me, it has been the lifeline that has shown me we all have something to say, and we all have our struggles, but the human spirit moves through them with our connection to others.
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Day 361. Bathing Suit Weather. 

3/4/2016

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Somehow pulling on my bathing suit at 9am didn't feel like such a chore in the last couple of weeks as it does this morning. Having spent two full weeks in Florida with beautiful weather a bathing suit was the attire most mornings and straight to the hot tub.
We returned yesterday to find it was 14 degrees in Toronto, that's Celsius for you American readers. It was shocking to have such wonderful weather in February, as we drove North the thermometer continued down until we hit -4. The bare roads and clear skies changed, first to rain, then sleet, then wet snow and finally snow. The sides of the road when from bare to snow covered to snow banks.
We pulled into a perfectly cleared driveway(thanks Manoli) just after 10pm. When we opened the car door, winter hit us in the face. The warmth of the sun miles away in Cape Coral we unloaded the car, hugged our friends and let reality sink in.
And sink in it has right at this moment as I look out at the combined 50 centimetres of snow that fell this week. Putting on a bathing suit suddenly is a chore, and a big one. I know I'm not strolling out to the hot tub with a coffee in hand to discuss what adventures we will get up today. Instead I am having an argument with myself about getting to Physio on this cold, wintery morning. I don't want to go, I want to snuggle under the covers of my own bed and ease into the day. I talk myself into getting up putting the suit on, venturing out into the cold air, and going.
Once at Physio I gave myself an imaginary pat on the back, that wasn't so bad after all.
I get my usual "Good Morning Maureen" but then a confused look stares back at me.
"I don't have you on the schedule for today." she says.
I groan, and shake my head. I got myself up and out for nothing!
So that's how I got the day after holidays started. I shopped for groceries with my bathing suit underneath my clothes and it was the fastest grocery shop ever!
I'm glad to be home but sure wish there wasn't as much snow.
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    Maureen Clout

    I'm going in for a 4th neurosurgery; this time it's a repair to my lumbar fusion. Here, I will post my daily updates on dealing with diagnosis, surgery and recovery. Join me on my journey.

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