It sure does take it out of you


We are 16 months into the journey post diagnosis. Julie is living with Huntington's disease but it doesn't define her. She is not afraid of death and is doing her best to live at peace everyday. There are things she is very much aware of, and things she is not, and I being her husband of 23 years and having known Julie for closer to 24 I pick up on these things straight away.

Those people who have not seen Julie for some time are sometimes shocked when they encounter us. In fact it has been my normal for years now without knowing it, looking for ways to work with whatever the fuck was going on in Julie. The constant tiredness, the weight loss, the sometimes regular psychotic episodes and rage which would surface, the threats of suicide and the threats to leave me. I got past the point of counting these incidences. I guess my way of adapting was to adapt to them and always be prepared.

Sometimes the bear would hibernate and Julie would do her best to control what was going on inside of her and the tension would subside but without warning like a lurking monster from the deep, it would appear sometimes with ferocity, sometimes just obsession and demands; like walking on eggshells there would be time when nothing would satiate it's appetite, with attempts to devour everything in it's path and like a tornado would rip through physical and emotional territory without discrimination leaving in it's wake a swathe of destruction. Sometimes as suddenly as it appeared it would disappear plunging beneath the waves to lick it's wounds, often unconscious of what was left in the wake to cowl and deep dive, to self loathe and even self harm when flashes of the reality came to mind. "They are better off without me"; "I can end it all myself", or to numb the mental anguish with a greater pain there may be head banging or hitting or pinching. At least this was some small relief but for a short time as the dive would go deep it would plummet to the depths. This power creature would sometimes resurface for oxygen with such force and physical force that it could be described as having immeasurable power and as suddenly as it appeared it would plunge even deeper to rock and plummet the total depth of despair and self hatred and deeper and deeper to discover ocean trenches whose depths are as high as Everest. In these depths there is little light and so the other creatures have adapted. It can be terrifying and formidable to attempt to assist or rescue such a ferocious power, yet gentle and caring creature from such a pit. It is like going where angels fear to tread and I have done so, so many times that I forgot to count. Long rescue missions appearing to be complete, there is often a total unawareness of the utter destruction and as Julie emerged from the hibernating state other things are a distraction; weight loss - body image and need to gain weight and a raft of other distractions. No answers are given to the investment in counselling! They thought they could pray out of her the demons and hurt, with the enthusiasm which with a child buckets water from the ocean to fill the moat of the sand castle. With a pipe dream to fill the moat thus fueling their enthusiasm regardless of cost. Until I realized the futility of it all. It came to an end! The completely normal blood tests, I guess they didn't know what they were looking for. I realize now they didn't know what they were looking for, certainly not a mutation or an elevated CAG count. It's hard to find the needle in the hay stack if you don't know it's the needle in the haystack you are looking for, but search the haystack anyway. The powders, the potions, the supplements, all to no avail. Well, not lasting at least. All the while neurons are misfiring and slowly melting away leaving a mere shell of what they once were, in appearance, but like a fluorescent over head light flickering; they flicker, a mere shadow of their past life, like the battery of flouros in the central warehouse they glow and flicker and burn out.

I have spent many years doing my best to run the infrastructure maintenance program. Alas no longer is this a sole charge position, but I am having to add to the team. Recruiting suitably qualified staff to trust with knowing how to continue the maintenance and care program. Because this warehouse is precious to me and it's hard to let go, but I'm tired and worn down. And I fear but know I must sometime soon, release this beauty to their care. I still get to admire and love this wonder! But, I realize I have not the energy to maintain and care as I once did...(sigh). I have found some wonderful and skillful maintenance workers/specialist technicians who share my love, and I will slowly transition my oversight to them. This will mean I can sit back and admire and love and journey with. It also means my life is no longer totally consumed by the shadow of such a beauty, and I can emerge with colour and life and simply "BE"!


Profoundly Yours Hemi




51 views