RIP John Wright

John passed away the 18th of February at 7:35 pm.  After my last blog I received the most wonderful Grace from God.. My anger was gone.  It allowed me to be compassionate and loving, to be present to his care and needs.  On the 31st of January, he went to bed, and couldn't get out again.  He went rapidly down hill after that.  I was able to keep him at home as I had promised and he died peacfully with our Norfolk Terriers and the cat by his side, as well as myself.  I sang to him the only song I could remember at the time.. Jesus Loves Me... and I told him that God was waiting for him and loved him.

Now, I am alone, and I feel as though I have done my very best to the end for a fellow human, my husband and a friend.  Asperger's still permeates mylife to some extent as I have started going through John's clutter and collections which include every phone bill for 24 years meticulously saved, every bank statement, every utility bill as well as anything he was interested in on the computer, printed out and filed.  It's alot of paper.. but I'll get through it a bit at a time.


I didn't realise how deeply exhausted I was and still am.. both physically and emotionally, I haven't slept longer than 2.5 hours for so long that now I don't.  But it's getting better, I have had a couple of days of good sleep.  And I know things are going to be alright.  The worry, the stress the anger is gone.  I am aware that there is a big hole in my being from this loss.. and I am not going to let it be filled up with the same.  I am grateful to God and our Lord Jesus for giving me the Grace to see this through.. even though I complained all the way.  I am a bigger and better person for it and authentic in my relationship with God.  I don't have anything to bitch about anymore.. and I am not going to go looking for something.  I am going to bring and feel the Joy in my life.. and do so with an immense amount of Gratitude and Love.
Below is the tribute I wrote for John, to be read at his memorial service 16th of March in Southport, his home town.

John’s Memorial Service

Our John was a genius.. a master of many facts and figures.  Skilled at concepts that most of us couldn’t pronounce the name of. He was in a word: Brilliant.  But, the most common inter personal things could leave him frustrated and angry.  His understanding of human nature, behaviour and nuance left him frustrated and many times blank.  John had Asperger’s.  It permeated Our  life together long before we both knew what that was.  It permeated his relationship with everyone who knew him.  We all thought of him as an eccentric, awkward academic who was first out of the taxi and last up to the bar and at times, very hard work.  But we loved him just the same.  

One place he could inter-act freely and not be mis understood was with his animals, and he loved them dearly.  When I first met him he had his Cat Charm, a sweet little black cat who came from Steve Trawley who is here today. John took his responsibilities to Charm very seriously when he got her as a kitten he took two weeks holiday time to stay home with her and her brother, Strange, to make sure they were settled in.  John used to live in Didcot during the week and come home on weekends to London.  When I moved in, Charm and I spent the week together and every
Friday night at 6:00 she would place her self at the front door waiting for John to come home. Charm lived to be 21 years old.. a testament to John’s good care of her.

Later he began a life long love of Norfolk Terriers and each one we had he loved very much.  But none compared to the one we called Buffy.  Buffy chose John, crawling out of the litter pen and into his ruck sack the day he went to choose a puppy.  From the time she came home with him on the overnight train to Inverness from London, she sat on his knee when he drove.  She never moved and they went everywhere like that.  When Buffy died, it was the only time I saw John cry.

When we learned the prognosis of John’s illness.. he calculated that the odds of having both Asperger’s syndrome and Cholangio carcinoma were 3 million to one.  That was John’s approach to life, one of facts, figures and knowledge.  I told him, you should buy a lottery ticket then.

John loved his work, his computer, and knowledge, he soaked it up contributing regularly to Wikipedia as an author and editor right up until 3 weeks before he died.  Even after he was too weak to talk, he could still use the computer.

I will miss him, even today, I thought, I should tell John this.. I knew I might not get an immediate response from much of my observations, but eventually hours, or days later out of the blue there would come Printed out pages of what I had mentioned and every thing you ever wanted to know about the subject.  Whether it was person, place or thing.  

We loved him, not because he was smart and clever, but, because of his child like honesty and innocence in his approach to life.  And I will miss that.  

Tragically Funny

I have mega stress.. huge stress.. the top of my head feels as if it is coming off. My neck has horrible spasms and I have chest pains.. I've lost my sense of compassion yet again, and in a huge blow up I yelled at my dying husband yesterday:

"Are you trying to take me with you when you go?"

 he replied

  "Go where?"  

It's that kind of context literalism that can drive one absolutely around the bend.  It's not the personal caregiving, or work.  I can take that, I am used to that, to hard work.  It's the Asperger's it permeates everything I do.  It is being the translator and communicator.  It is all of these things.. and more.  I want to yell, 'Hello in there? Don't you know that this is the end for you, don't you want to do more than surf the web?  Read and Edit Wikipedia and listen to Lord of the Rings for the 54th time?'  Don't you want to talk???


Well I guess that's all I have to say about that.  But, on the physical side, John is thinner if that can be possible. Did you know, that one of the last places that fat goes is your nose?  John, has no fat or tissue padding on his nose, it's just a piece of cartiledge covered in skin. Pain is basically under control as far as we can tell.  Continence is part time.  and his mentation is still clear for the most part.

We don't use a bell or buzzer when he needs something.  He IM's me.  We do have good conversations via IM, with me downstairs and him upstairs.. but, then we always have.  It's how I came to be with him in the first place.  How all that articulation can be so fluid in many ways in type, and not verbal sometimes just completely bemuses me.

THE WAITING TIME

It's been a year.  It's been a rough year here.  It's been a time of some wonderful gifts and some horrible trying times.  Times when I lost all grace, compassion and kindness.  Caring for a person who is terminally ill and has Asperger's syndrome is hard.  There's just no other way to put it.  I am not whining.. I am telling you it's bloody difficult. 

When I was in Florida again this spring.. visiting and house sitting.. I ranted and raved and cried at God, I did not want to go back.  Well, you know I did.. and I made it through the summer, I think in part, because, I had a small tour guiding job, taking out busloads of tourists once or twice a week.  Just the interchange with normal people helped alot.

In October, John started to go down hill quite rapidly.  The tumor had returned and that meant visits to the surgeon, the oncologist etc. That also meant that I had to play translator with the medical community who, just, has a really hard time dealing with John's Asperger's.

This time, at the surgeon's we had to force a prognosis out of him.  During his errming and arrring I realised it was he, not us that had the issue with death.  John's linear, matter of fact, non emotional discussion of less that 6 months to live disturbed all of them.

Living with this is harder than you think..  It's empty.  There's no discussion of our shared life together.. there's no acknowledgement.  It is empty. and it is the emptiness that eats me sometimes.  He doesn't know what he has missed on God's good earth..

There are no little ironic moments, no nuanced conversations... it is empty.  In my prayers at the beginning of the year, after I had finally gone a bit crazy from no respite.  God said to me 'I wired him, I'll take care of him'.

That profound little statement has given me much peace.  My internal scream, and feeling of implosion has lessened.. and I continue to learn.. learn to live moment by moment.. in this place of waiting time.

The Adventure begins.. sort of..

I am about to begin something I thought I would never to again.  I am going back to school.  I have enrolled at the Highland Theological College.  Getting ready today, and fighting the war with my thoughts was a big battle.  I was filled with doubt, worry, and self talk that was down right nasty.  But, I did make it out the door, walked the mile to the train and waited.. No train.. Great.. by the time I realised there would be no train, it was too late to walk another mile to catch the bus to get to the school.  Luckily today was just an introduction to the tutor and Chapel.  I wanted to go to chapel.. it didn't happen.

But, what did happen was my realisation about controlling my thoughts  and a victory over the self defeating self talk that goes on in my head.  At least today, I had a victory.. which brings me to this verse..:

And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day Christ Jesus returns.  Phillippians 1:6

I hold that verse in my heart today..  cling to it.. and cherish it.  And for today I will practice, contentment and self control.. of my thoughts.. and be grateful. 

Salvation Lived Out

I've found a new blog,Fulcrum Express, by Jim Wright (no relation). Another person who speaks to my condition.. and understands why it is that I and others search for an authentic relationship with Christ Jesus. Its worth a read or three or four. Today I was particularly moved (in the Quaker sense) by his 'Regeneration' post. A youtube video of Paul Washer. Now the man, Paul Washer, has a radical message. It is counter to what is comfortable to me.

I could fill this space with all that I did, and learned, and observed during my 30 day respite. But, I can sum up the total very easily. It became quite clear to me as we landed in Edinburgh, that I can only sustain if I have a church, or body of belivers for fellowship AND the last and most important is this: I can do what is asked ONLY with Jesus by myside ONLY in his Grace can I be sufficient.


That's all, stay tuned..the jouney continues...

For I know the plans I have for you..

Jeremiah 29:11 ~ 14

For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. 12 In those days when you pray, I will listen. 13 If you look for me wholeheartedly, you will find me. 14 I will be found by you,” says the Lord. “I will end your captivity and restore your fortunes. I will gather you out of the nations where I sent you and will bring you home again to your own land.”

I Seek you Lord.. first and foremost.. let your love shine through my every pore.

Hold my hand Lord, hug me and comfort me as I walk in the direction you have set.

Heal me my Lord, replace this grief and sorrow with your Light, compassion and Love.

Help me Lord to seek only you.. take my hand and let me walk with you.

Amen

Thought for the Day...

“A woman’s heart should be so hidden in Christ, that a man should have to seek Him first to find her.” Maya Angelou

I am pondering this.. and what that looks like, what it feels like to have one's heart hidden in Christ.. Today, I had some glimpses of it. A feel for it.. I want to cultivate that feeling.

The kindess of others that I have experienced during this trip has left a profound imprint on me.

In my head I am contemplating writing on Caregiving some more, I wish, that every caregiver could have this kind of respite.. I think that it would make a world of difference.

Let the Son Shine In

I have spent so long walking on a knife edge with one hand reaching out for God and the other hanging onto the Black Dog.. I have forgotten what joy is. God has blessed me with Respite.. actual Respite.. by giving me the chance to be away from the pressure cooker of my existence ... And I have grasped it with both hands.. letting go of the Black Dog for now.

A while back I had the opportunity to go to Florida this month for ten days and meet my friend Marylee from Oregon at a friend of hers in St Petersburg, Florida. So, I did, I said YES, with out thinking where the resources would come from. Two weeks ago, Carolyn, Marylee's friend asked, would we be willing to stay on and care for her cat and house sit.. MaryLee couldn't.. But again I said YES..with out knowing, how or what.. and so.. I:
Called John's doctor, asked if I could be away for 30 days.. he said 'YES do it now while you can' I asked my daughter if she could cope with John alone, she said 'Yes, mom you need this' and then I asked John, and he said 'ok'.

So here I am, in Florida, in the SUN and Light, in the USA.. for 30 days.. away.

Today, I went to church.. a contemporary, Happy music filled service, and I got my Jesus fix, and It was wonderful.. it is so extravagant to me, to have time, space, warmth and FREEDOM to be.. to ponder, and to get perspective. God has blessed me with this time.. and I want to use it well.

One thing that I am pondering.. is how as I left Inverness.. the sadness that has covered me began to drop away.. Another is.. How, the only Person that really fills my heart.. the way I want to be filled.. is Jesus.. The rest.. is not in my purview to worry about. My future is not in my hands, my responsibility lies only with Loving God, Letting God's extravagant Grace fill me, and Trusting.

I don't know what is to come.. I don't know if the Black Dog will return .. and I am not going to contemplate it.. nurse it or chew on it.. I am going to be present.. in this moment of Respite.. and with that I give you this:

Ordinary Things

The odds of having both Asperger's Syndrome AND Pancreatic Cancer are 20million to 1. John figured this out today while we were in the waiting room at the doctors office. Now how in the world can anyone be so brilliant and so head blind is something that I marvel at daily. And Bless him, I think John does too.

Trying to tie my circumstances with what God has in mind for me on a daily basis is the hardest thing I have ever done. Whilst I know that this is where I am supposed to be, I can not for the life of me understand it all. I know, now that it's not just John's soul that's being saved but, mine too.

The ordinary things of my day, bring me the greatest joys at the moment. And I contine my conversation with God, continuously nagging and talking, arguing and repenting.. I guess that's what a personal and authentic relationship is all about.

And again I fall on my knees...

I stopped writing here when things became so overwhelming that all I could do was cling to God's love for me and hang on. John, my husband 'son' had his surgery, has denied chemotherapy and continues to function at a fair level. Although, he is getting weaker.

My only hope and comfort is that I know that I am where God wants me to be. It's not easy, but learning to wear that task in my own skin has become easier. My summer was thankfully peaceful, prayerful and quiet. But with the loss of the light comes the dark times of my soul once again. And I struggle with an un named fear as we move towards the inevitable outcome of this disease and situation.

Learning to live without having much control in one's day today life is a true excercise in trust. It continues to be a roller coaster. Everyday struggles with the NHS, doctors, health visitors, and John become exhausting.

The good things in my life are the dogs, my on line friends and my neighbors here. John continues to hold fast to his belief that there is nothing after death, and there is no God. Having him remember and recall his days in the hospital as something totally different to what happened is a sharp pain to me. Being told that his boss was at his bedside more than me was a great shock to my ego.

Learning that God does give us more than we can bear.. but Does give us the comfort we need has been an amazing lesson in Grace.

AND I have become God's Nag.. I pray, I nag and I appeal daily to my Lord and the Spirit to give me the grace to care for this person whom part of me still loves and I know that in his Asperger's Autustic way depends on and loves me.

Well, I will try to be more faithful to my blog again. Perhaps there is someone out there that reads and this will help.

Pax Christi