I had someone recently remark that they didn’t understand how JD’s mental illness manifested itself. That is a very fair statement. Having lived with OCD for so long, I have forgotten that most people would not have a clue as to what this means. If you watch Hoarders on TV, you will see what the outcome is (as hoarding can be one of outward manifestations of what is going on inside the person’s mind) but that show does not even begin to touch on what it is like to live this way.

Since I have of late begun to speak more openly of my late husband’s mental illness and behaviours on ye olde blogge, I think it is only fair that I flesh this out so that people reading can have a better understanding of what this was and how it impacted our lives together.

From what I have researched, OCD can manifest in many different ways. I don’t claim that what I experienced is the definitive experience of OCD in a loved one. It is just my story.

I knew JD was quirky already from when I knew him in high school. But that attracted me to him. That he was unafraid to be himself. That he was not a conformer. That he thought for himself instead of accepting and following the status quo.

So when we became reacquainted in (much) later life, I was not surprised that he was still quirky. Although I didn’t know it during those early stages of our courtship and romance and even eventual marriage, JD was a savant when it came to deception and manipulation. He possessed a genius-level IQ. Apparently I am no slouch in the IQ department either, but he could think circles around me. And I let him. Because I came to love (and with that, to trust) him so deeply, I believed what he told me about why he did the things he did. He always had a rational, somewhat believable excuse for his irrational behaviours. So I over-rode my inner voice – my gut, my intuition – and believed him, for many years.

And to be fair to JD (and me), his OCD was not as pronounced when we first became reacquainted. But it progressed over the years and became much, much worse. To the point that I did not believe I could continue to live with him if he did not seek treatment. But then the cancer struck and I never did take that step.

Towards the end of his life, JD’s OCD manifested itself in the following ways (“Reader’s Digest” very condensed version):

• Contamination fears – there were times his hands were red and chapped from incessant hand-washing. He had long and involved showering rituals to cleanse himself before performing especially stressful (to him) tasks, such as opening the mail that came to his building. Mail was not opened for months or years at a time due to this, and only after a lengthy set of showers and only in the nude, his skin glowing white from the dried soap film. He was hinting that when we finally moved house to his building (my current residence) that we shower and change clothes before entering the apartment and that no one else be allowed to enter…ever. We were to have 2 sets of clothes – one for the outside world, and one for the apartment. He wanted us to set up a visiting lounge downstairs for friends and family and to keep the apartment “clean” from contamination.  Anything that touched the floor was contaminated and could no longer be used…but couldn’t be thrown out either – it had to be added to the hoard. Animals were contaminants and anyone that had animals was contaminated. If I visited someone who had animals, the clothes I wore had to be segregated so as not to contaminate any of our possessions further. He took over the laundry duties so as to make sure it was done well enough for his needs. However “un-contaminating” an item was impossible to do, according to him. Because of his OCD, our washing machine and pipes were often blocked due to his overuse of laundry detergents (and soap when showering). Our water bills were pretty impressive for only 2 people. His clothing had to be washed differently and separately from mine. Eventually I too was considered a contaminant in his mind as I was no longer allowed to enter some rooms he considered “clean” at his building. I was banned from cleaning – especially dusting and vacuuming as this could stir up contaminants and blow them around our house. So I had to resort to “stealth-cleaning” when he was not around…cleaning just enough to keep me sane but not enough to alert his hyper-vigilant awareness of everything around him.

• Superstitious/Magical Thinking – JD saw omens and portents in everything. If he saw a certain transport company’s trucks pass us on the highway, that was a sign that something bad was going to happen. I learned to try to distract him if I saw those trucks before him, in the hopes he wouldn’t notice. If something fell (on the contaminated floor!!!!) or broke, that was a portent also. He thought he was communicating with dead relatives regularly (mine too!) and that they were sending him these omens and signals to warn him or help him.

• Lateness – We were chronically late almost everywhere but specifically for social events involving his family. These were stressful for JD and he usually had some “very important tasks that had to be done” before we could go, and these would take forever for him to complete due to his need to check and recheck things. I would become very anxious about being late and by the time we got to the event we were both frazzled and exhausted as a result. It was  easier to find a reason not to be social, because of this and everything that went with the whole contamination issue. This, along with JD’s requirement for absolute secrecy about what was really going with him and us, on was very isolating for me.

And last but certainly not least:

• Hoarding – most items of JD’s (and then by association, mine) had a memory attached to them and could not be thrown away. Even if he forgot the so-called importance of an item, it could STILL not be thrown away because he thought it might have been important at one time.  I had a bunch of old margarine containers full of food his mom has prepared for him, taking up valuable space in my freezer. She died in 2002 and I have no idea how long before she died that she made these meals. Eventually this meant I could not throw any OTHER containers of prepared food out of the same freezer because it might have come from his mom but he had just forgot about it. He was skeptical when I affirmed that I had prepared the food in question and I had to defend it by saying those containers did not even exist when his mother was alive. He sorted through the household garbage each week to ensure nothing of “value” was being thrown out so I often found items I had thrown out reappearing in another section of the house like the basement or sun porch (where he kept most of his stuff, and where I was allowed limited or no access so as not to contaminate their contents and stir up dust). Food waste was allowed to be disposed of, but little else. And especially not paper, unless it was shredded first. Even if it was blank paper, it had to be shredded first. And of course he had to view it first to decide if it COULD be shredded. Which he never had time for, so the papers just piled up and up.

Here are some visuals of the clean-up of the hoard at his building in the year following his death. They don’t really do justice to the reality, but it gives the reader an idea. There was a proportionate (to the time spent there) level of garbage at my house (mostly basement and garage) to clean up as well, in first 2 months of widowhood. It took 2 very full rental truckloads to the dump and putting out about a hundred bags of garbage to clean my house up enough to put it on the market.

I could go on (and on and on and on) about the impact of JD’s OCD on our lives and the lives of those who knew us. I hope this is enough for now to gain a better understanding of what people with OCD and their loved ones might be going through.

Rock on,

The WB

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