A little collection of poems centering on intrusive thinking ocd and the restoration of faith. It all started with a couple of poems that just came up on the page and were left at the bottom of a tray for ages, as they had a different voice and feel to my usual ones. They spoke of inner struggles, ones I didn’t have. When a few years later my youngest son was diagnosed with the “pure O” of ocd, I remembered the two poems, they were describing what he was going through. I must have picked on something at some point, without realising…We probably do that a whole lot more than we think, quite literally!
Those not familiar with that type of ocd: very often, some of the most troubling thoughts are to do with blaspheme and unsharable scenarios of all kinds, to the horror of the sufferer. And those thoughts inevitably show in the thinking life of the persons of faith, as it all hems and spirals from extreme forms of anxieties, creating voices and images at the opposite spectrum to the nature and cares of the person. They end up creating the very thoughts of what they abhorred the most. It’s quite an entanglement, and because they think they’ve “turned bad”, they keep it all to themselves, with very often a complete melt down around the age of 20, give or take a couple of years either side.
For the last few years, there has been a significant increase in information made available online and in bookstores etc. I shall paste some links at the bottom of the page. For the UK, ocd.org.uk is a wonderful place to start, a lifeline to so many, with teams of people with big big hearts. The book that sparked the change towards more understanding and less panicking, has been Brainlock, by Pr Schwartz. His faith is part integral of the book, and it was invaluable to us, that and the mention of how brains glitch, they work on the information and associations made, but they are not the mind. the mind is intact, that’s why it reacts in a sheer panick to the unfiltered random thoughts that seep through the faulty sieve. And why our Matthew started to come up with things like “God will never forgive me”, “I am not a christian, I can’t be any more”, I can’t tell you what’s in my mind, but God knows”, “I refuse to pray” or “I prayed but it gets worse” and “I’ll never be able to tell you what the thoughts are”. But then it escalated into voices and characters as the whole thing grew out of control. Self harm in panick moments was almost every day for a year too. No one, including us, knew what was happening. One insighful medic told us it wasn’t schizophrenia, and to remember that if we ended up seeing a psychiatrist, which we did. Just before I picked up the one book on mental health at our small local library: on ocd, which I almost put back on the shelf, then “intrusive thoughts” caught my eye on the back cover blurb. And I just knew we’d found what it was. The psychiatrist, against all my doubts, made sense of what Matthew was trying to convey (at that point he was unable to put 2 sentences together without going in a panick about it all, even “distressed” seems a mild word for it.) At the end of the meeting, Dr K. read his interpretation of the interview, and Matthew said “Yes, that’s it.” ! Unfortunately, a week later, Matthew had a spike in town and rammed into a granite wall…quadruple fracture of the C1 (Jefferson’s fracture), followed by 6 months of recovery at home, when we did pretty much everything for him. But… I had also bought “Brainlock” and although Matthew still had spikes, he couldn’t really harm himself at all as he wasn’t mobile and quite weak. So we went through the book and the exercises and the studying around it. That’s when the “your brain glitch but your mind is intact” (I used this in the end poem) became a light bulb moment for Matthew. “So I’m not mad?”, he said, and everything seemed to calm and settle noticeably, that and the coloured diagrams of brains’ hotspots during episodes, and how retraining your brain can turn the reds and oranges into cool blues over time.
We eventually opted for small doses of medication too, after discussing it with Matthew. He still spikes, and while he does, it’s best to use all the safety nets. Matthew is also on the autistic spectrum, which makes the anxieties harder to shift. In other ways, he is very trusting of us and is willing to give things a go if it makes sense to him. We are looking forward to the days when he can fully apply the coping strategies on his own and regain independence. But one thing he has recovered so far: His faith in a good God who indeed knows all his thoughts, but more importantly, knows his heart, and loves every one the same anyway. Matthew never says ‘God can’t forgive”, we pray together, he prays for me if I’m not well or struggle with something (he tells me afterwards 🙂 ) , he prays in the spirit again if he chooses to, he asks the Lord for help, for good ideas about his velo rail dream project, he prays after he watches the news, he is fully back in his relationship with God, and that’s such a massive thing for him and for us. The walls have fallen at last. Now he comes up and says “my brain’s glitching, I need help.” And we go through the 4 steps from brainlock, especially the redirection, we do something else. The spikes can be strong, hard to shift, but they go all the way down again after a day or two. That period is still one to watch and can be critical still. I cannot emphasise enough how resilient Matthew has been throught it all.
Thought I would give a little bit of background, and it ended up as reams of it, in my true style, and I’ve gone into Matthew’s ocd story. I’ll keep it as such, it may be helpful in some way…
So to go back to the writing, I knew I had to write a set of poems to complete the initial ones. I followed the flow and trusted that some pieces that seemed so random would find their place within the journey and that there would be coherence in the end. It’s only when I wrote the final poem that all the others came together as one final voice. Associations in writing go so far, but you know when you get a little (big) help from above and within. I cannot normally gather ideas together without loosing my thread and confusing those around me with a flurry of tangents; that last poem … I was discovering each line as my pen kept writing. Left once again in awe and wonder of His ways. Never mind that I longed to see Matthew smile again, His heavenly Father did on a cosmic scale! And suddenly the two most random and surreal poems which obedience alone had kept in so far, revealed their place and purpose. From pointing out signs, they became the signs, and God’s fireflies and azure butterflies’ love message, a simple line, moved me in the long buried places of the heart. If anything, I would like to encourage you to write (or move, draw, paint, sing…) believing, or at least opening up to the possibility that, He can use your expression to reveal His message, His heart, His beauty, His goodness, His ideas for making a difference…to yourself, and to others at times. At the turn of many scribbled pages, look out for the simple line that feels so close in its whisper, so warm into your heart, that you know you never have to write alone. Ok, the “telegraphic” style lasted… a couple of lines…many lines ago…. 🙂
This is what the cover looks like. Until I try to change the link to a widget, the URL below comes out as a humongous box, that can’t be minimised (since CreateSpace was moved to Kindle Direct Publishing.) It shows all three formats available on Amazon. It is also available on Amazon.co.uk (cover quality slightly inferior to the US one, have raised the issue, but allocated printers in each country, can’t be addressed easily, I was told….)
This was published through Findaway Voices. It is included within the paperback option above, but only for Audible/Amazon. I am yet to find an overall link to its full distribution (32 platforms, including Apple Books/itunes, Kobo, Audible, Audiobooks, Google Play, SCRIBD, Authors Direct, Bibliotheca etc.) I will pursue the link quest! The narrator is James Masterton; a really nice tone to his voice as well as a down to earth approach to reading poetry. He made sense of it all, for which I am very grateful!
Useful links on ocd
http://www.ocduk.org ( the best source of info and support so far, run by a wonderful team, big hearts, their chief executive, Ashley Fulwood, is one of the most dedicated and compassionate people I have met. He has been breaking walls down and help sufferers get their life back in such a significant way. OCD-UK has been a lifeline to us, providing the knowledge, the human contact and the ressources that just weren’t available anywhere else at the time. Grateful beyond words.)
http://www.ocdaction.org.uk (I am adding this link I have just noticed in the search results. It looks very good too, but I am yet to visit the site properly. So much progress in ocd support in the last few years, it’s encouraging.)
This is a video that we watched with Matthew. There is a second episode too. It was a eye opener to him to see that he wasn’t the only one having those struggles, it really helped to know other young people, with or without autism, were desribing the issues with the same words, and desperate to “have their life back.” The “Pure” O is when all the complusions and rituals are happening inside, so you notice the change in the person in terms of loss of peace, smiles, cheerfulness and growing irritability for the smallest of things at times. And unwillingness to share what’s happening. During spikes, the facial expression just changes, it freezes with anxiety, so you learn as a family to discern it and be ready to help and redirect. A really good programme with a lovely group of young people.
“Brain Lock” by Jeffrey M. Schwartz
” You are not your brain.” Was the catalyst to starting to get better. It is available on many platforms and as an audio book too. You can find it on the ocduk.org site (this was where we found it).
There are videos on the 4 steps described in the book, by the author himself during conferences etc. It goes beyond distracting from the intrusions, into effective redirecting.
Dr Schwartz was Leornado Di Caprio’s ocd adviser during the filming of “The Aviator”.
Leading expert in OCD. Author of books. You can find him on youtube too. Committed, passionate, caring. Has cycled the John O’Groat to Land’s End trail several times to raise funds and awareness. Like Ashley Fulwood from ocduk.org, he has been raising concerns about the uninformed misrepresentations of ocd in the media, including entertainement and films, that sometimes grow into ridiculing the condition.
Final note from me; It is a severe disorder, that affects daily functioning, independence and plans for the future, in a significant way. Anything in the order of “I have to have my cake at 3 pm every Friday, it’s my ocd” and failing to do that causes a tantrum at the most, and life goes on after the storm in a tea cup, is in the order of personality quirks and inflexible habits etc. but is nothing to do with ocd. If someone’s whole living space is perfectly arranged by colours, letters, numbers, codes etc, even to extreme levels, but they are happy to do so and can get on with their lives as long as no one else messes their system, if they can leave their neat alignements without the distressing feeling that they are never certain they have truly done it right and therefore must do it again (yet their mind is telling them it’s madness) and again and again, if they not are desperate to leave for college or for work yet caught in the checking spirals for extreme lengths of time, then they do not have ocd.
The same goes for any disability, any tragic event, any difference in people or groups, we should be better than making fun or ridiculing. Let’s get informed.