Saturday, November 7, 2015

Fund Raising Campaign

Just a brief update.....a fund raising campaign has been started to help me buy a used vehicle to modify so that perhaps I can become somewhat mobile again.  Since my surgery in January I have not been able to drive.    You can find the campaign information at the following link    under   Elizabeth MacLeod - Modified Used Vehicle - Handicapped

Friday, November 6, 2015

Signing off for awhile.........

I have decided to back away from this blog for the time being.   It is harder and harder for me to write directly about my journey in this way...perhaps I have moved to a different place or I just need to do something different.

On that note I have started a second blog:   Cancer Diplomacy....this will be a topic specific blog which allows people to learn that interacting with a cancer patient/survivor (or someone else with an terminal illness) can be like trying to  walk through a mine-field.    One never knows exactly what to say and what not to say.......

Let me help you ......Cancer Diplomacy is 365 tips on how to have a healthy and positive relationship with someone who might hear you differently than you intended.....

Tuesday, November 3, 2015

Darkness.....a new definition

Darkness.  Perhaps the current understanding of darkness is untrue.   What if darkness is absolutely necessary for life as is lightness?    Why do we treat the darkness as a foreign state, as if it is not natural but rather the opposite of natural - unnatural?

Most of our thoughts or definitions of darkness come from someone else.   Depending on how comfortable your parents were with the darkness will definitely have an effect on your feelings toward darkness.   My daughter has always been very comfortable in the darkness.  Unlike myself, she has always closed her door at night.   She never really cared whether or not there was a 'night' light.  We never had a light on at night.   I enjoyed sitting outside at night looking at the stars.  Loved walking in the dark, partly because you can see inside the houses and see the decorations and colours etc .   Some people think that is 'peeping' but I figure if they didn't want you to look they would close the curtains or close the lights.   It was best in Germany because the houses are right beside the road and not far off with huge lawns in front.   For anyone who loves to camp the darkness is the best part.   Although that is when we light fires, sit around them and allow the dark to circle us.   Walking back to the trailer is so beautiful because the stars are so brilliant.....a light against the dark!

I digress.    I have always been very comfortable in the darkness. I have found myself sitting in the dark of night on the worst times in my life.   I have found myself walking the streets at night when I am stress or anxious.   I find the darkness like a and warm not frightening and dangerous.  I have even been very at ease with looking at the darkness that exists within me.   I know that we have two sides to us.    The one we are happy to show and the other we keep hidden.    We use the expression 'our darkside' because again we are inculturated to see anything in the dark as negative.  Our faith takes us there....the devil lives in the dark, God in the light.   Well the book I am presently reading debunks that understanding.....finally something that resonates with me and the dark.

In the Book of Exodus we find that Moses came face to face with God in the darkest part of the mountain.   Imagine that.   Hmmmm....God being found in the dark.   Not a light in the dark but in the dark.   So I don't have to find a light in myself before I can meet God in my own darkness.   For this time in my life I find this very encouraging.   I don't have to move out of the darkness before I can come to see and meet my God.    Perhaps while I am here I will try to look more closely for God, rather than trying to run from the dark.

Will keep you posted on how it goes.

Monday, November 2, 2015

tired and very very sad

I don't know if I can continue writing in the same way as I have been .   It seems that I have gone to a dark place and the lightness and humour that have been my solace  are no longer retrievable.   I am grieving !   I am saying goodbye to so much .   Until now I was able to accept the Cancer , never believing it was any kind of blessing, but accepting its presence.   I have never owned it, I have never allowed it to become me.   I have always looked at it from the outside , knowing it was there but not allowing it to enter my being.   It had my body but not my soul.

I find it harder now to view this disease from a distance .   I am tripping over it at every turn , literally as well as figuratively .

I am sick of the platitudes, the up lifting speeches. The ' there but for the grace of God' sayings and beliefs.    I am not grateful I am alive ... I deserve to be alive.    I am not grateful for what I have.... Physically I want more.   I want to walk, to drive, to have my life my independence back.   I am tired of having to be careful how I behave because some are uncomfortable with my sadness, my tears, my anger, my pity.   I am tired of having to be there for others comfort at the expense of my own.
I no longer have the energy nor the desire to make everyone feel ok around me.   I no longer want to be there for anyone.  I am tired, soulfully , spiritually exhausted.

I no longer feel hopeful... In many ways I feel I have tried to hard to live and now I am alive physically but dead on the inside .

I have chosen to be the way I was.... I thought that would help . Make me better.   Be positive, as if sadness would kill me.    Cancer doesn't care .... I realize that now.... It eats you one piece at a time and just leaves you to die .   I am so very  tired .

Wednesday, October 21, 2015

Darkness ....... an in between time

I don't know why I have been avoiding keeping up with my blog.  It isn't that I don't have tons of things to say.   My mind spins like a top most days with so many different feelings and emotions that  I am twisting myself into a pretzel.   I think about going on line and writing and then I find something less important to do.

Darkness!   What does that mean to us?    Is it an absence of light or is it a veil  that covers the light? Does it matter? I am not sure but learning to navigate the darkness is a difficult task.   You are never really sure if you are going in the right direction or if something is sitting in front of you just waiting to trip you up (lately even being in the light hasn't prevented me from tripping lol).  It's that feeling that no matter how gingerly you step forward there could still be an abyss that will suck you up .    The fear, the uncertainty, the need to trust is so strong that you almost want to just sit still and not move because somehow that seems so much more comfortable.    The word 'seems' is what is important.   It really isn't more comfortable, it is just less dangerous.

Darkness has been a big theme in my life lately, and rightfully so.    I can be sitting in the sunlight and still feel like I am in a dark room, or walking in the street in the dark and feel like it is the best place to be,  even brighter than the sun.   I think when there is light around one feels that one should match that feeling.   Yet even in the midst of glorious light, the darkness prevails.   That situation is much scarier than being in the actual dark and feeling like you belong.    Belonging, the one thing all human beings desire more than anything else.   That search to find where we belong, feel at home, know our minds.   That place where we are travelling to  the whole of our life, and yet never really arriving.   I don't know where I belong anymore!!!!   

Do I belong among the healthy?   Keeping up with all the activities and events as if nothing has changed?

Do I belong among the sick?   Giving up all past expectations and just existing within the limitations that I have been left with?

Do I belong somewhere in between?    Not sick enough to absent myself from daily living but not truly feeling the energy or the desire to participate in a limited way.

There is a really good book written by Arthur Frank (can never remember which is his first name so I had to look it up) called "At the will of the Body".   It is a great book for those who are sitting somewhere 'in between" .  Not healthy enough to return to their previous life, but not sick enough that society can accept them as they are.   He explains that the advance of medical technologies has been so fast that the societal advances and understanding has yet to catch up.  Not only in physical ways such as accessibility issues, but in emotional and psychological ways.   Many in our society have been able to put their diseases into 'remission' allowing them to live longer lives.   Society however doesn't quite get this status.   We want people to be either healthy or sick.....being ill yet still capable of some form of participation is not understood, its confusing, doesn't fit into the categories which we have set up for people.

This lack of understanding on the part of our community, and society on the whole, is what often makes the darkness a safer place to be.   Sitting in the darkness, fearing the future is a more acceptable and more convenient place for the 'able' bodied. They sense we belong there.  They can understand, they can help when convenient, but they don't have to examine their own ways of being in the world and wonder if that is truly how it should be.   It is funny to see what an 'able' bodied person considers accessible.   If there is a ramp then its good.  Never mind that the ramp has been installed at such an angle that travelling it is like skiing down a slop or climbing a steep hill.    Accessibility is covered if there is an elevator , never mind that you have to go up or down to the floor that it is at to access it.    I am laughing as I write this because these have been my personal experiences lately.   My sense of humour has been a blessing because I can see the people who are trying really hard to be helpful realizing the absurdity of it all!!!!! LMAO.    That in itself has tempered my new experiences.

I have managed to try really hard to be grateful for my life...and I am in many ways.   But to be reminded on a constant basis about how lucky I am to be alive is really starting to take its toll.   Don't get me wrong, I am happy to be alive.   I enjoy my daughter and my granddaughter on a regular basis.  I recently travelled to see my sister and had the best time I have had in years.   There are many wonderful things going on in my life but there are also many things going wrong.   So to be told by people who are uncomfortable with my situation to focus on the good stuff is getting really tiring.   Sometimes I just want to sit back and say 'life sucks'.   Because you see in many ways it does.   But then again so does everyone's life at some point.   Why is it ok for some to complain and rant, but for others it is not.   It really comes down to whether or not the rant is fixable.    If it is, then we are all ok with it.   If not, then we don't really want to hear how awful things are.   Ultimately it is whether we are comfortable with the reality of what is in front of us.    Maybe it is all my own projection too.   Perhaps the lens I am looking through is shaded (or jaded) and the feelings I have toward the outside world are really the feelings I have for the inside but am too frightened to accept.

As I write, I am realizing why I haven't written lol.     I tend to become too philosophical and introspective and obviously need to gain the strength to do it.    Well, now I have much to think about and so I will probably go and do something less important......hmmmmm  I think I have a knitting project that needs my attention.

Friday, May 29, 2015

Just take a cab.....

I just realized that is has been almost a month since I last wrote anything.  Normally, that would tell me that I have probably been too busy to bother but I don't think there is a normal anymore.  I guess I have just been trying to find a new equilibrium in my life.   It's a slow process but I do have faith it will come!

What I have learnt lately is how many older people must feel as their body deteriorates yet their mind remains sharp.   I often think of my Mom.   After my Dad died she was often unable to get out and about as much especially after she moved to Halifax.   We, meaning her children, would say " just take a cab or ask someone ". Making the solution sound so simple.    It was the lack of independence that was the problem I realize now, not the lack of solutions !

I have many people I can call.   My daughter has performed Yeoman service of late.  I am not house bound for lack of solutions but rather because now I am dependent on others goodwill, schedules, and  various other things.   The day of spontaneous decisions on running to the store, visiting someone, going to the dog park are over.     Even making plans to go to the trailer must be done days in advance in order that rides are organized .   It is not that I have no one to help..... It is the fact that I constantly need that help to live an active life.   Which brings me back to my Mom.    I acutely know how she felt.   Sometimes it is easier to just stay home than admit how dependent you are.    Then there is the feeling of not wanting to be a " bother".    It is not that I think that is how people think.   It is just how I feel sometimes .    Wish Mom was here so I could apologize for all those times I just dismissed her loneliness as her own making.    I realize now exactly how she felt !

So I have learnt an important lesson and hope I can share it.   People do not want to sit home or avoid going places.   It's just sometimes it takes too much energy to arrange, seems like a bother to others, or intensifies the reality of the loss of independence.    No one has to solve these problems all the time .   Sometimes all that is needed is to acknowledge the feelings and to let them know they are loved and important enough to be helped .

Mom, to you I wish I had really understood ..... I do now as I am living it !

Thursday, April 30, 2015

From Tears to Laughter :)

Some times my thoughts and feelings are dark and scary and writing is the only way I can put them out there honestly.  I have that sort of personality that makes me smile when I am with people.   Generally, I am truly happy and sometimes, rarely, I do it and hide my true feelings of the moment.   But the main thing is feelings are fleeting.   Often they are in the moment and then gone and the next feeling comes along.    We can make feelings continue by replaying the story in our heads but if left to their own devices they usually move along leaving room for another feeling to fill the void.

Yesterday was an especially difficult day but with the help of a wonderful daughter, a gorgeous granddaughter and friends that understand me, I made it through barely scathed and was able to start again today.   Now today was a little slow at getting to be better.......but sometimes the God of surprises has a very interesting way of waking up the funny side of life.   God can have the dark and ominous humour that I am familiar with and other times God allows the silly side of life to make you lighten up.

I decided to take a shower.   Not necessarily a fun idea with all that is now involved and so the decision to do this often takes awhile to percolate in my mind and then find its way into the body to get me moving.     So, off I trudge to the basement, down 17 stairs with my cane, organize everything with in reach, the towels, soap, shampoo and of course the lift for my leg.    Of course my menagerie of animals must also follow me into the bathroom.  So I am dodging and stepping, yelling "move" and "get out" as I arrange my stuff.

Then sitting down, taking the brace off, lifting the leg into the tub and closing the curtain.....or I must say attempting to close the curtain.    The reason for this is that I have a cat that is walking behind me on my shower chair and then along the tub and a dog who is pushing her head into the shower and knocking everything over.  Squidjet is just watching all this from a distance!  So, first I start to get frustrated and then decide to just spray them all.   Well, they loved it.   They thought this was a great game and Maize (the dog) kept coming back and sticking her nose in and trying to catch the water out of the wand, and Curia was batting the spray and Maize's nose having a grand time.    Well, then I could feel this laughter just start to gurgle up from deep within me and I too began to enjoy the fun.     Needless to say we were all soaked by the end, shower taken, hair washed and didn't even mind the extra effort involved.    An aside, I had to be really careful getting out and dressed because there was quite a mess on the outside of the shower too.   I know, I know, I have to be careful!   Lighten up and enjoy the visual!!!!!   

Curia (the cat) and Maize (the dog) BFF's

So I have gone from tears to laughter in the last 24 hours.    How amazing is that!    I guess living in the moment means the good and the bad, just as long as you recognize the good as much as you do the bad.    Imagine if I had decided that taking a shower was just too much work I would have missed all the laughter.    Many people thought Maize would be too much for me after surgery, including myself.   There were times when I thought "what was I thinking getting such a big dog".   Even thought I would have to give her up.   Well, she has been a blessing in my life during this time for many reasons, and one of them is the silliness a puppy brings into a household.    As I write this she is curled up on the day bed fast asleep from all the fun we had a little while ago.    The cats well they have tried to kill me many times going down the stairs but that cane has found its place enough that now they just 'get out of the way'.   So we have all found our space in this little apartment and today we all had a little bit of silly fun.

So God has taken me from the despair of yesterday to the hope of today.....for that I am truly thankful.    God has also shown me that the ups and downs of life have always been there just at this time they are more obvious.   Hopefully I will remember that the next time I am feeling blue.