Thursday 11 October 2012

The house on the hill

Recently a good friend asked me if we ever thought about moving.  It's a good question.

We live rather rural.  We have neighbours but most of them are seasonal.  The closest, some what adequate, grocery store is at least 15 minutes away.  The kids go to school and participate in dance and karate 30 minutes away.  Shopping and a wider variety of recreational opportunities are an hours drive.  My team of doctors just a three hour road trip.

Still, the answer was pretty simple. No.

Later on, as always, I reflected. 

Why not move? 

Would our life not be so much simpler if we lived closer to the village? a city?
I would no longer be so isolated.
I would regain some independence.
I could walk everywhere and not depend on others to drive me. 
I would be closer to my family and have more access to my friends.
I could take a taxi to the grocery store and local medical appointments.
John would have far less responsibility and burden.

Same question. Same answer - no. 
We would be miserable!

When John and I moved in together, 17 years ago, we began designing floor plans for the house we would someday build.  A lot of thought, time, energy and dreams went into those tentative plans.
Nine years later the foundation was poured.  Today its our reality, our home.

The land we built on is a mix of pasture and forest.  It borders on a a quiet road, more pasture and a large beaver pond.  Today we are still designing floor plans.  This time for green houses, bunkies and barns.  We dream about gardens, aquaponics and turkeys. We talk endlessly about sustainability and homesteading.  Of leaving something behind for future generations.  BLACKberry Fields.

Pretty picture isn't it? 

Even prior to getting sick I claimed to be born in the wrong century.  I love nothing more than hanging laundry on the clothes line, reading a great book, finding a great new recipe and digging in the garden.  I lose time daily watching the chickens and talking to the pigs.  The place is slower but there is still plenty to do.  Lots to keep my brain active and body alive.

I don't deny that moving would make life more convenient sometimes.
However, I don't think we could ever trade quality of life for convenience. 
I have probably said it here before but for the first time  I feel like we are living very authentically. 

I am only as isolated as I want or need to be.
I am still very independent but I have to be more creative in order to achieve it.
Even if I lived in town I wouldn't be able to walk everywhere unless I had a shadow.  It's not safe for me to travel solo in the event I lose the use of my leg or my sight.
I have close friends that live near by. We also have a steady stream of people who visit our little farm to purchase eggs and visit the animals.
Family can find me.
John willingly gets us everywhere we need to go.
We have learned to ask for help when we need to.

This is what real looks like.



Tuesday 9 October 2012

If you love me...

If you love me...
  • See beyond the humor and sarcasm.
  • Be kind to me.  I'm very sensitive.
  • Listen to me even when I am hard to understand.  I'm still intelligent.
  • Don't assume anything.  You really have no idea unless you are also Monster fighting.
  • Please don't compare your experience with mine.  This is like nothing you have ever experienced and it can not be compared to other diseases or disorders.  When you do that it devalues your experience and mine. (I may be repeating myself)
  • Know that I am not a text book case study.  Nothing that you have read is even remotely close.  I am real.  My journey is unique to me.
  • Don't pretend you understand when you don't.  Ask me questions.
  • Be patient.  I can tell when you are not and it hurts my feelings.
  • Respect my choices even when you don't agree with them. 
  • Support me without conditions or a timeline.
  • Love me even when I am not very lovable.
  • Be my friend and remember I can still be yours. 
  • Acknowledge I have limitations but I try very hard.  Everyday.
  • Remember who I once was.  I do.
  • Respect who I am now.
  • Note I am trying.
I in return will...
  • Try harder.
  • Be a good friend.  I can still listen. 
  • Be patient and respectful of your feelings.
  • Try and control my frustration and anger.
  • Try extra hard to think before I speak (or type).
  • Recognize this is scary and challenging for you too.
  • Acknowledge you are doing your best.
  • Love you back.


Monday 8 October 2012

Falling into Fall - Literally

Our children have been back to school for about six weeks.  Everyone is settling nicely into their new schools, classrooms, activities and routines.  I miss their company but I welcome the silence.  It's the first time since becoming a parent I was happy to see my children return to school and it broke my heart to admit it, especially out loud.

During the past six weeks I could have written several blog posts but not one of them would have been nice.  I have heard myself say several times recently that if I don't remain angry then I will start to cry.  If I start to cry I may never stop.  It's a short fall. 

Did you know I spend all day most days alone but its not safe for me to be alone in public?
For a woman who is fiercely independent that is huge.

My brain to mouth filter is broken.  I swear more than a pirate and say what ever, when ever it comes to mind.  My friends accept that and therefore me.  Our children definitely have a more colourful vocabulary but are quick to scold me when required.  At times I am insensitive and unkind to the people I love the most.  I hope they know that is not my intent, ever. 

I apologize (kind of) to the well meaning family member who called and claimed she thought of me often during the past 2 years of zero contact.  I'm glad she was strong enough to accept my response through my blind rage.  I hope she shared my thoughts with other members of the family.  Two things will happen as a result.  I will stop receiving unwanted, guilt dripping telephone calls (too little way too late) and John will start getting the support he so desperately needs and deserves.

** PSA - for anyone who loves someone who is suffering the worse possible thing you can do is tell them you think about them all the time but then never act on those thoughts.  Send a text, email, pick up the phone, tell them you love them - do something. **

I continue to wander from symptom to side effect aimlessly.  Daily seizure activity is normal despite my high dosage of anti-convulsants.  No answers to why or how much longer this will go on are forth coming.  If I ever do have a stroke I will probably never recognize it for what it is because my face and arm are always numb.  The clinic where I received treatment for my AVM appear to be uninterested in my new limitations and abilities. As long as their treatment plan is on track they are pleased.  In an effort to preserve my remaining sanity I have asked my family physician to advocate on my behalf.  Maybe yet another opinion is required.

We have also been in touch with Sick Kids Hospital and a Specialist there will be taking the lead on  HHT testing for our entire family.  I'm tired of waiting for answers but the thought of further trips to the hospital is exhausting.  The thought of more testing, procedures and the 50% possibility of both the girls also having this terrible disorder leaves me paralyzed with fear.

John's mother has recently been diagnosed with brain cancer and has been scheduled for a craniotomy and followed by full brain radiation starting next week.  Once again my husband will sit alone in a hospital waiting for neurosurgeons and radiologists to determine fate of a woman he loves. 

It doesn't seem fare that one man should carry such burden.  He is the strongest man I know. I am grateful everyday he is mine.  Despite more than a year full of frustration, grief and hardship he still carries on without complaint.  He has accomplished so much professionally and here on our farm.  I am so very proud of him.



** John's Mother passed away exactly two months post diagnosis and 1 month after having the tumor removed from her brain. (1/1/13)