Dad Chapter 1A - FTD

This morning my family and I walked in the London Ontario based walk for ALS research.  We decided to do this earlier this year, and managed to raise well over $2000 for the foundation, and we all walked under team leader, Mom, for team "Mr. P's People".  That's what a lot of my father's students had called him.  We all sported purple attire in honour of Dad's fave colour, and hit the 5K trail in Sunnybrook Park.  It was a great morning!  I managed to cry only the once....as my sisters and I watched a fellow about Dad's age rise up from his wheelchair to take the final few steps across the finish line.  He had ALS.  He was able to do the walk this year.  Dad would have loved to have been there too, smiling and giving a big "thumbs up" to everyone he met along the way.....

With my Dad, the ALS came second.  First it was the FTD.

REWIND

Wednesday, February 10, 2010

I receive and email from my mother that day that would change my world:

"Doug and I had an app't with the family doctor and we have found out that Dad has FRONTOTEMPERAL DEMENTIA.  It is not reversible and we cannot do anything to stop it from progressing.  If you want to know more about it check our WebMD for more info and the dr tells me that we will read stuff there that we do not want to hear.  I have not yet looked it up so I cannot tell you what there is.  His brain showed shrinking of the frontal and temporal lobes.  Dr. tells us to go off to Florida, because there will not be any episodes that we have to worry about.  When we get back we are to see him after seeing the neurologist on April 1st.  I was going to call you but I could not get through a conversation with Bronwyn without crying.  I will also send this e-mail to Steph and we can talk later when I get my head around this latest info.  Love, Mom"

I didn't get it.  I had never even heard of "FTD".  Immediately, I hopped online and began researching...I needed to know.  Of course, within minutes I found out things I didn't want to hear.  Dad was going to die.  Not right away, but a lot sooner than anyone ever plans.  He was a retired teacher; such an intelligent, wise, witty, clever guy.  He was an athlete, playing slo-pitch, volleyball, hockey and golf his entire adult life.  How could this have happened to him?

My family got together the following weekend to discuss.  That just so happened to be "Family Day" weekend.  The five of us gathered to eat, drink, snow sled at the local hill, chat, laugh and be as we always are.  We played with my niece and nephews, lazed around the house, and did as we had always done while all together.   One evening we found ourselves all huddled in a group in the middle of the kitchen, crying.  We knew things were going to drastically change from that point on.  I will remember that moment for the rest of my life.

Looking back in time, we tried to recall any hints pointing to Dad's intruding illness.  It was June of 2009 that we began to suspect a hearing problem; Dad would often respond to us by asking, "what?", rather than answering the question.  This was strange for a couple of reasons...with daddy, it was never "what", but always "pardon".  And he clearly wasn't hearing us, right?  No - now we know it was not because he didn't hear the questions...it was that he didn't know how to answer them.  His brain had already begun to jumble up words.  Shortly after that, he began misplacing them, not knowing how to verbally express what he knew he wanted to say.  Soon it got to the point that he could only answer yes or no questions...and then by December 2010, he lost his words entirely.  At this point it was a lot of "Pearson family sign language" and "thumbs up or down" that got us by.  

It makes me sad to think that my father knew what was happening to him through all of this.   This wasn’t Alzheimer’s.  My dad never really forgot anything.  He knew who we all were, who he was, and what was happening to his mind and body.  It must have just killed him to not be able to talk about it.

But we all stood by, saddened by what was going on, but firm in our resolve to support and stay positive as long as possible.  This was FTD.  We could handle this.  In truth though, I was scared.  Terrified.  

That was the beginning of our family's 15 month journey with FTD & ALS.   I have a newfound disdain for 3 letter acronyms.

POST 2.

I sat with my new therapist Tuesday morning.  We met at 7:30am in her pretty, safe, and comfy Parkdale office/yoga space.  We spent an hour chatting, sharing our backgrounds, and feeling out whether or not we were to be a good "fit".  Because as well all know (or at least those of us that have explored the world of the psychotherapy), you need to feel right and at ease with your doc in order for it to be worth your while (and theirs).  I had been seeing another "relational therapist" for the past year on and off, and we were like a square peg and a round hole.  So I call my new therapist, my new therapist,  because I liked her.  Alot.  I think were are going to be a great fit.  :-)

Now back to Tuesday morning.....I woke up and went for a run before sunrise.  I ran and thought.  I swore to myself that no matter what, I was going to be 100% honest, raw, and real that morning.  No more hiding, no more shame, no more putting on a show.  And that is what I did.  I told my new therapist things that I have not talked about in years.  I told her things that I have been too ashamed to say out loud.  I cried, I laughed, and I shared.  And it felt good. 

That is where I am now.  Finally.  I am 30 and ready to tell the whole truth.  The last 15 years have been a bit of a scam.  But I have really only being fooling myself.

I Cry

I cry a lot these days.  Good, necessary cries.  Tonight I thought a lot about my Dad and cried.  It's healthy.

Sneak Peek - Inspiration/ Learning

The following is a list of a few of the books I've read in the last year...In late summer 2010, I spent a few weeks at my folks house in small town Ontario.  I literally spent 8 hours a day reading under my mother's beautiful and peaceful pergola, in her exquisitely tended garden backyard.  All in the attempt to gain inspiration and learn.  

Here is a taste of my reading list, a few cliché picks, a few of my faves; it continues to grow.

1. Eat, Pray, Love - Elizabeth Gilbert

2. The Happiness Project- Gretchen Rubin

3. The Ultimate Happiness Prescription: 7 keys to joy and enlightenment- Deepak Chopra

4. The Happiness Make-over- MJ Ryan

5. The Power of Now- Eckhart Tolle

6. Quantum Happiness- Kathy Freston

7. US: Transforming Ourselves & the Relationships that Matter Most - Lisa Oz

8.  The Power of Kabbalah: Thirteen Principles to Overcome Challenges and Achieve Fulfillment - Yehuda Berg

9. Happiness: Essential Mindfulness Practices - Thich Nhat Hanh

10. Tuesdays with Morrie - Mitch Albom

11. How to Befriend Your Shadow – John Monbourquette

12. Bulemia: A Guide to Recovery – Hall & Cohn

13. A New Earth – Eckhart Tolle

…the list goes on.  Thanks to Toronto Public Libraries!!

Post One.

I said I would never blog.  And I would certainly never “blog” about writing a “blog”.  But here I am.  I will reflect upon the past, look to the future, but will exist in the PRESENT.  Because that is where I am choosing to live my life now.  NOW.

I started this Blog in September of 2010 (note the timestamp?).  I made a few posts.  Today I looked at them and was saddened.  I had written them while I was at a pretty low point, and they were angry, spiteful and full of grief.  I have decided not to post them, but re-work them into my latest process of writing and sharing.  Here we go......

REWIND.

I was at brunch with a dear, albeit somewhat distanced friend in the late summer of 2010.  We were in the throes of an impassioned discussion of our individual life battles that past year, when my friend suggested I write a blog.  At that point, I had been going through what I thought was the roughest year of my thirty year life, and I had hit rock bottom.  I was 29, unemployed, bankrupt, homeless, and teetering on the brink of depression.  My fiancé and I had just broken up for the second time, having called off our wedding a month previous.  I had moved out, with no money and nowhere to go.  My father was ill.  I felt alone, terrified, and hopeless.  I wanted my "Eat, Pray, Love" cure; to create my own "Happiness Project"; but it just isn't as clean and simple as they make it out to be in all these self help books.  As my friend pointed out, there are a lot of women that want to make huge change in their lives, but the fact is that most of these great inspirational books are written and published by individuals with money.  Lots of money.  And the ability to take twelve months off from real life to "find themselves", or the cash flow handy to thrive in their Manhattan flat whilst working from home and pursuing their new goals, is inaccessible to most.  The reality is that most women are just like me. 

FAST FORWARD to today.  The PRESENT.

A lot has happened since that chat over eggs and mimosas.  And I mean a lot.  I don't think I am going to function in a linear way here on this blog....no time lines, no rules.  I am going to share with you the events that have shaped me from my teen years until now; the secrets, the truths, the pain, the joy.  This is a therapeutic outlet for me, and hopefully a relatable medium for those who may be going through the same things, but feel like they are so alone. 


So this is my story......

Stay tuned.. this is only the introduction.  I have been working feverishly...and chapter one begins on September 21, 2011.  Exactly one year to the day from when this BLOG was originally mind mapped.

BYW - this blog is about my experience.  My ups and downs, my transitions.  It is not here to place blame, name names, hurt or upset.  It is not about anyone else but me.  It is my journey.  And it feels good to write about it.  One lesson I have learned this past year, is to stop assuming that everything is about me.  Because usually it never is.  Except this.  :-)