Messages from the Editor: Epilepsy – Conditional Publications

Understanding DOESN’T Mean Accepting Abuse

Vrinda Pendred — Wed, 13 May 2015 16:10:56 +0000

Editor and Founder Vrinda Pendred discusses when we should show patience and understanding – and when enough is enough.

Friends and long-time readers will know I’m an advocate of learning and understanding, when it comes to neurological conditions. Those closer to me will also know my strong anti-abuse stance, and I’d like to take a moment to explain how I think this fits in with having patience and an open mind.

I grew up with an abusive father. He was very violent toward my mother, both in word and deed, and when I was ‘old enough’ he edged dangerously close to moving on to me. When I became a mother myself, I took the view that he wasn’t going to change, no matter how much I tried to help him, and I couldn’t have the poison in my son’s life. It has now been five years since I last spoke to my father.

My father has the sort of old-school pride that won’t allow him to see a psychologist, so he’s never been diagnosed with anything. But I’d put money on him being autistic, with OCD and borderline personality disorder. My own diagnoses and experience leave me wishing there were something I could do for him. ‘He almost can’t help it,’ I used to tell myself. ‘He finds emotions challenging. Be patient; he’s lost inside himself. You can see how unhappy he really is. He regrets the past, deep down, but is too scared to face up to all he’s done. He was abandoned and abused by his own parents. He just needs someone to love him unconditionally, like his parents never did.’ And so on.

I still think all of that’s true – except for one thing: he can help it. How? By seeing a doctor.

It sounds trite, but you can’t help someone who isn’t willing to help themselves. I recall a time when I was talking about my OCD and my father asked, ‘Where did all this come from?’

‘It’s genetic,’ I told him. ‘I got it from you and Mum.’

‘What are you talking about? You didn’t get it from me.’

I was incredulous. ‘Are you kidding? When I was growing up, you would sit down for breakfast, notice a fingerprint on the glass coffee table in the next room, and have to clean ALL THE GLASS IN THE HOUSE before you would eat with us.’

‘I – ‘

‘AND,’ I interrupted, ‘every time you came home from work, the first thing you’d do was go around the house fixing things. My best friend and I once deliberately ruffled the curtain a little, left a cupboard door open an inch, that sort of thing. You noticed everything within a minute. We timed you.’

‘Vrinda – ‘

‘And what about the time when I was nine years old and was so excited that my friend had loaned me her roller skates, I wore them all over the house. When I say on the sofa, I rested my feet on the coffee table and the wheels of the skates made the tiniest little scratch on the wood of the table. You went nuts. You screamed at me in my face and said we’d have to sell the TV to pay for a new coffee table. I was so scared. In the end, you found wood filler and fixed the scratch, but I never wore roller skates again. I was terrified.’

Even after listening to all this, my father grew stern and said firmly, ‘Vrinda, I do NOT have OCD.’

I tried a different tactic. ‘Do you realise that as I’m a girl, in order for me to have Tourette’s Syndrome, I have to have inherited the genes from BOTH of my parents?’ Silence. ‘That means you HAVE to have SOMETHING. Feel free to look it up in clinical psychiatry books.’

When he didn’t respond, I asked, ‘Why are you so afraid of admitting it, anyway? Do you have any idea how that makes me feel? It means that despite all your usually supportive words about my medical problems, you secretly feel these things are something to be ashamed of.’

He had no response for that – but he didn’t deny feeling that way, either, and he never saw a doctor, not for the OCD and certainly not for the more dangerous problems he suffers from that made my childhood a living nightmare. Naturally, this meant he never changed – so I changed. I stopped putting up with it and walked away.

I’ve had to walk away from a number of people, over the years, out of self-preservation. The number of birthday cards I get has diminished, but I’m much happier for it.

We can’t allow ourselves to get dragged down with people who are willing to let themselves fall apart. This was one of the main themes of my novel The Ladder. Something I think my father will never understand is that I still love him; I always will. And I pity him, because he is ultimately a prisoner of his own ego. But that doesn’t mean I have to keep him in my life, if his presence is destructive to me and my family.

It’s important to remember that no matter how much you love someone, you are not their therapist. If you are being mistreated, get out. It doesn’t matter if the abuser ‘can’t help it’. Point them in the direction of therapy and distance yourself until they’re better – if that ever happens. We should all try to exercise understanding for these people who may be in our lives, but we can understand and pity from a distance. Patience should be reserved for those who are really trying, and who really are getting better all the time – for those who want to get better.

I hope you all have (or can find your way to having) the healthy relationships you deserve. And if you found this article helpful, be sure to subscribe to our blog for more insights, as well as personal stories from our readers.

Vrinda Pendred is the Editor and Founder of Conditional Publications. Additionally, she does freelance editing and proofreading and provides private English tuition. She is also a writer, and you can learn more about her personal work here.

Vrinda has been diagnosed with Tourette’s Syndrome, Obsessive-Compulsive Disorder, ADHD, Autism and Bipolar Disorder. Her ambition is to help others with such conditions find their voice through creative writing, and spread awareness to the general public.

Be sure to read her contributions to Conditional Publications’ debut release Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD.

Making Relationships Work, When You’re Neuro Atypical

Vrinda Pendred — Tue, 28 Apr 2015 21:13:33 +0000

Editor Vrinda Pendred shares the importance of being entirely yourself, in all your relationships.

I’ve been with my husband twelve years, now, and we have a lively nine-year-old son. Things are good for us – very good. But for a long time, they weren’t, because aside from the usual issues of growing up, money problems and emotional baggage, I’ve been diagnosed with Tourette’s Syndrome, OCD, bipolar disorder, autism, ADHD and mild dyslexia – not to mention post-traumatic stress from being raised by a father I’m convinced has borderline personality disorder, on top of autism and extreme OCD. (I like to think everyone at my office regards me as charmingly eccentric, but I can’t verify this.)

I was diagnosed with Tourette’s when I was seven. A friend used to call me Bunny and point out every time I twitched my nose…and tell me to stop. I laughed it off and kept secret the fact that I’d torn the inside lining of my nose by scratching too much at an itch. It had bled and scabbed over, I kept picking at the scab, and now I felt the inexplicable need to stretch out my nose repeatedly to check if the scab had healed. It resulted in tearing open the wound over and over again with my twitching, and it was very painful. Yet somehow it felt satisfying. That, more than anything, I felt unable to share.

It wasn’t until I was 13 that I admitted to any of my strange thoughts and was finally diagnosed with OCD. Until then, I was convinced I was sick and crazy. I held my diagnoses close to my chest, terrified they meant I was broken, and certain all my friends would abandon me if they knew the depths of my insanity. This secret was eventually revealed in the most irrevocable way possible, when I developed symptoms of schizophrenia in response to prescribed medication and became convinced all of my friends were figments of my imagination – you heard me. What I didn’t know at the time was that you’re not supposed to give SSRIs to patients prone to manic episodes, as it can tip them over the edge, chemically.

See, I wasn’t diagnosed with bipolar disorder until I was well into my twenties. The diagnosis would have prevented a lot of heartache. I would have known, for instance, that the mood swings are made more extreme by pregnancy hormones. As I hadn’t yet been diagnosed, I spent the entirety of my pregnancy falling to pieces, screaming at my now husband, and nightly imagining all the ways I could kill myself. Visualising it brought relief, even though I had no intention of going through with it. Again, I felt unable to tell this to anyone. I genuinely feared the doctors would decide I was unfit for motherhood and take away my baby, so I hid the extent of my suffering for nine long months.

I was diagnosed with autism at the same time as bipolar. I’d suspected the ADHD a long time, so that came as no surprise. Dyslexia shocked me, as I’ve always been an avid reader, loved to write and I have excellent language skills. However, I have learned dyslexia is yet another of these conditions that is widely misunderstood, and I fit a less widely publicised description.

Returning to my marriage, my husband and I used to argue all the time, in our early years together. Now, we might have an argument once a year. What changed? Me.

That’s not to say my husband didn’t have his own challenges to overcome. He did. But there were many ongoing issues that were resolved simply by me learning to accept my diagnoses and stop keeping everything secret. I was so conditioned to hide myself, I would lock myself in the bathroom to cry in the dark, alone. I would smile and pretend everything was fine, because I was convinced no one would want to hear that I was suffering from intense muscle pain due to tics, or that I felt ugly and stupid because of the way my face kept contorting. When I failed socially, I believed people would think I was making excuses if I explained it as autism. I thought I’d be regarded as mad if I said I thought I was suffering a down-swing and expected to fall into a month-long state of depression, soon. And when those excuses sounded old, there was always the classic: I didn’t want to feel disabled. Talking about my problems would make it all too real and force me to acknowledge my lot in life.

These thoughts still run through my head, but these days, I choose to live by the principle: feel the fear and do it anyway. I’ve started answering my husband honestly when he asks how I am; if I’m in pain, I tell him. And you know what? He sympathises and lets me know he’s there. When I sense a mood shift I think will affect him, I warn him and he is understanding, accepting that at times I may be highly strung and at others, I may lie on the sofa watching TV every night for weeks, without motivation. When I don’t understand something social or I close off, I tell him I find it hard to open up and he respects that, gives me time – which, incidentally, encourages me to open up. Sometimes words get stuck in my throat and I can’t speak, if I’m seized by social panic. He helps me through those moments.

Of course, I’m fortunate beyond measure to have found such a husband. That said, it’s helped by the fact that he relates to some of my quirks, without qualifying for his own diagnoses. In fact, most of my close friends – including those who have stuck by me since we were little kids – have gone on to receive related diagnoses. My conclusion is that there must be certain personality traits we all share, as a result of our chemical imbalances. This allows us to connect on a deeper level, even when we seemingly have nothing else in common. We ‘get’ each other, as people. However, as children, we all argued like mad, too. Again, the difference has lain in maturing enough to talk about these things and try to understand each other. Before we developed that openness, it was easy to misunderstand each other’s quirks as deliberately hurtful. For instance, I used to think one of my friends was disinterested in what I had to say. I now know he’s very interested, but highly distracted because of his ADHD; so when I tell him something and he responds by changing the subject, I no longer take it personally. I know how hard he’s trying, and that he’ll address my comments in time, after he’s offloaded everything else fighting for attention in his head. He used to apologise profusely for seeming so rude, and get really down on himself. Now, we’ve learned to laugh about it and stop giving ourselves such a hard time for things we can’t really help.

Relationships are notoriously difficult to maintain when you’re what people like to call ‘neuro atypical’. But I don’t think they have to be. I think the secret, as in any relationship, is self-acceptance, honesty and trust. Be open about your challenges right from the start. If you experience rejection or general lack of support, it’s not a relationship worth pursuing. But if it is worthwhile – be it romantic or platonic – maintain that openness. Be wholly yourself, and return that acceptance when they’re open with you. Stop imagining your problems will burden your loved ones. They want to be there for you – as they know you want to support them.

If you have any tips for making relationships work, please share them by making a comment, below – and be sure to subscribe to this blog to read more insights and personal stories from our staff and our readers.

Vrinda Pendred
Editor & Founder

Be sure to read her contributions to Conditional Publications’ debut release Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD.

Suicide Awareness Week: A Message from Jennifer Scinto

Vrinda Pendred — Tue, 09 Sep 2014 19:22:15 +0000

Sometimes openness is necessary to promote awareness and hope for others. Sometimes your journey is meant not to be hidden and kept secret out of fear of judgement, but instead be shared. I admit it’s uncomfortable and a bit frightening, but I have a great passion for erasing the stigma that surrounds mental illness and suicide, and I am not ashamed of my journey. If judgement arises, I am confident enough to know it is ignorance or lack of knowledge and understanding that on another’s part, and not me. My journey is not one I wish to remain silent about because of the stigma, but one I wish to share throughout my lifetime in hopes that it may inspire and bring hope to other sufferers similar to myself.

With that being said, today marks the start of National Suicide Prevention week. On the way home from class tonight, I was flooded with images and thoughts about my journey thus far and what I wanted to convey. I am eternally grateful for all the people in my life, even those no longer part of my journey, who have been by my side during the lowest times. For the times they have talked and listened to me, and the times no words were necessary – just the act of being there was enough. I am thankful for the countless times they have held the hope for me when I had so little of my own. I am thankful for the times they have literally saved me from succumbing to my illness. I am thankful for the tools they have given me, the love (albeit sometimes tough love), and the few who have never left my side or given up on me. Not only have you saved me throughout the years, but you empowered me to want to save myself, which is huge.

The journey continues, and with that, the struggle continues; the struggle to find hope in perhaps even the smallest things…a laugh, kind word, hug, song…something that will sustain me until I have the strength to get up and continue on. As far as I have to go, I am happy and proud of myself for how far I have come. It’s been a long, vastly painful journey, but what I have learned from the pain is priceless. It has moulded me into the person I am, the person I am coming to love more and more. There’s a reason we’re all here, and I am determined to keep fighting and hoping so I can find my purpose.

So with that, I want to thank those who have shared in my journey and will continue to share in it. You all are the biggest blessings I have. In a world of immense pain, you have helped me see there is also immense joy and hope. Thank you.

I challenge those of you who see suicide as a mere selfish act to really reach out and get to know someone with mental illness. You will soon realize there is more behind the stigma that is so pervasive in our society. There is great pain, but also a yearning for hope, understanding, and acceptance. Reach out and be the face of hope to someone who might be thinking of ending their life.

Just listen. Don’t judge.

Jennifer Scinto, Conditional Publications

Contributor to Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD

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The Importance of Asking for Help

Vrinda Pendred — Thu, 04 Sep 2014 06:22:06 +0000

Recently, a ‘Check Mate’ of mine sent a bunch of us a group message saying they were struggling to cope on their own and needed help. Around the same time, another friend made a public announcement that he had lost a loved one. Dozens of people flocked to show support. Some of us (like me!) haven’t even met him, but we care just the same, through the friendships we have formed online.

The key here is that while our support won’t help my friend grieve, or fix my other friend’s circumstances, neither of them is alone. They both have an outlet to release their difficult emotions.

So many of us – myself included – are afraid to reach out when we most need to. I was discussing this in that group message and we all agreed a lot of it comes down to fear of rejection. We worry we’re a burden on others, or that people will tire of our problems, or simply not care, and our feelings will be invalidated. We find it ‘easier’ to go it alone.

Message to self: this is STUPID.

It has never been easier to do anything alone. On the contrary, it’s stressful and overwhelming. And no one EXPECTS you to do it.

There’s a term in the world of investments that applies here: ‘diversification’. It refers to the art of investing in many different areas, each uncorrelated to one another, so if one area does poorly, the others will hopefully pick up the slack and you won’t lose all your money. The point? It’s a well-proven fact that putting all your eggs in one basket is a RISK.

None of us knows everything or is the best at everything. That’s the beauty of the world. There are so many varieties of people and lifestyles out there. They’re meant to complement one another. When you start a company, you don’t do it all on your own; you have a team, each member with different strengths to balance out each other’s weaknesses. I’m sure all of us would agree with this principle.

So why don’t we apply it to our lives?

We’re constantly told to be strong. When people ask how we are, we’re expected to say we’re ‘fine’ even when we’re not. If we’re unhappy, we’re meant to take some pills and shut up. But hiding your struggles / suppressing your sorrows until it’s too late is NOT strength. Admitting you find something hard takes courage, and being vulnerable with someone is a form of bravery. Swallowing your pride and fears and asking for help when you need it is one of the strongest things you can do.

I challenge you (and myself!) – instead of waiting until you collapse to ask for support, ask for it when you’re going through little challenges. The smaller the challenge, the simpler the support request. It doesn’t need to be drama all the time; regularly talking about the little things is just making conversation. Get people’s insight right away, when the problems are still tiny – before you feel like things are spiralling out of control. It will actually be less of a weight on your friends’ shoulders that way, too

Neuro-Atypical: We Are All X-Men

Vrinda Pendred — Mon, 24 Jan 2011 20:24:37 +0000

Okay, who watched X-Men 3: The Last Stand and felt like, in many ways, it was the story of their life? Not with me? Let me explain.

In a nutshell: the authorities have discovered a new drug to ‘cure’ the mutants of their ‘abnormalities’. Mutants queue up in the thousands to receive this ‘cure’, but Magneto does everything in his power to sabotage it. Magneto believes the mutants are special for their ‘unnatural’ abilities. He thinks they should revel in their differences. He takes this view to the extremes, sadly…but each time I’ve watched the film, I couldn’t help thinking how much it was like the struggle of living with a neurological condition.

There are ‘cures’ out there, and they are unarguably a godsend for people who can’t function in life without them…but for those of us who – if properly motivated – could find alternative means of dealing with these conditions…do we need a ‘cure’? Are we that damaged, or do we just have different types of brains that lead to different thinking styles, different ways of feeling and responding, different abilities (just like everyone in the world, really)?

They called it ‘The Last Stand’ – I know where I stand on these issues, but where do you?

I suppose I’m a bit more like Professor Xavier: I believe in allowing the ‘mutants’ to make up their own minds on this subject, rather than tricking and bludgeoning them into agreeing with my perspective, as Magneto did. But for what it’s worth, I like to think that there are darker sides to these conditions that we should fight. It’s wrong to sink into them until they consume us and we lose ourselves. That is illness. Some people can’t help falling prey to this illness, because their brains won’t allow it, and I appreciate they need the drugs.

But for the rest of us, perhaps we’re overmedicating – and not just with prescriptions. Perhaps we spend too much time feeling shameful about our brains being a little bit different, and we forget that all brains are different, that there is no such thing as a normal brain. Perhaps we forget that our brains have made us who we are, through chemicals, neurons and the life experience they have given to us. Do we really hate ourselves so much that we’d risk losing our personalities (those drugs are definitely mind-altering – I speak from experience) just to remove symptoms that are often only so bad because others around us don’t accept them?

I have said for years that if the world accepted our differences, we could find a way to live comfortably enough with a vast proportion of our symptoms. This was the inspiration behind my story The Royal Bank of Scotland. To add to that story, perhaps in such an acceptant world, we would also feel less afraid to seek help for the symptoms that aren’t so easy to manage, because there would be less stigma involved.

What do you think? Vrinda Pendred Editor & Founder

The Royal Bank of Scotland can be found in Check Mates: A Collection of Fiction, Poetry & Artwork about Obsessive-Compulsive Disorder, by People with OCD, available on Amazon in paperback and Kindle.

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