Monthly Archives: November 2013


Tomorrow would have been mine and Steve’s Silver Wedding Anniversary. That’s twenty five years in old money.

Had Huntington’s disease not been inherited, or took hold so young, I expect Steve and I would have been booked on a cruise or doing the New York and Vegas trip we always wanted to do.

Then again… would we have stayed married for so long had we not been bonded by being faced with adversity? Couples split up for any number of reasons, but when I married Steve I always wanted to be there for him if times got hard. He seemed such a kind man and so vulnerable in many ways.

Looking back on things, Steve was the emotionally stronger of the two of us. What I thought of as ‘denial’, be it of Huntington’s or things that were going on in our marriage, I am now sure that clever denial was all part of Steve’s defence mechanism. He knew what was going on, but more so what lay in store for him. He knew that he needed me to stay because of my bitch/mother- tiger gene. He needed someone to protect him and fight his corner.

Below is a link to a slideshow made for our 24th Anniversary. I still can’t believe another year has passed and I am not laid in the ground with Steve.

See slideshow HERE

No new poem but I have repeated below my poem from my post And the Wisdom to know the difference which marked our first anniversary apart.


We didn’t marry in a church,

Yet still the vows were spoken.

And somehow one remained intact,

Among the many broken.


“In sickness and in health” I vowed,

I did walk out that door,

But always came straight back to you,

Then loved you more and more.


And when the mistress of HD,

Decided she would fight;

I held on to your heart and love,

And fought with all my might.


The HD mistress grabbed at you,

She clung with no release.

Caught in the battle, you grew tired,

And looked to me for peace.


The night you died I let you go;

No longer pulled apart.

The Mistress won your body but,

She didn’t win your heart.


I also want to add this beautiful song which makes me cry The book of Love    It was used in the last episode of Scrubs which, interestingly, had a Huntington’s disease storyline.

At 4.15 pm on Monday 25 November 2013 I shall place on my middle finger right hand a silver ring. It’s a ring I commissioned through Johnny Rocket. Steve and I previously had matching wedding rings made by them when Steve’s poor fingers were getting so skinny from weight loss. I make mention of our local jewellers and a link to HD in the intro to my poem – The Prevalence.

The new ring has mine and Steve’s initials either side of a sparkling round blue topaz. The topaz is to match my engagement ring. Every time I look at it I will see the sparkling blue of Steve’s lovely eyes. Inside the ring is engraved 25/11/1988. Our wedding date.


Saphire Blue Park House Cruise Steve








So how else am I spending my day?

I have a day booked off work. Yes, you read that right. I am working at the moment. It’s in an office at a temping assignment I got shortly after my last post. Whether the job lasts another few weeks or months, it’s with a wonderful group of people helping me with learning new skills and building confidence. I think Steve read my last post and took pity on me bless him. Hopefully more on the new job in my next post.

For now though… of me and Steve from 1988

And thene they  were two