5

First there is a mountain

Well fellow travellers, we’re here. I made it.

It’s anniversary day and if we are to pay attention to conventional timelines it’s been 4 years since my accident and my brain injury. I say conventional timelines because after brain injury time becomes somewhat irrelevant, it’s all wibbly and wobbly and can stretch and contract at will.

Firstly I wish myself a

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I couldn’t forget this date even if I wanted to, my body reminds me. In the lead up to today over the past few weeks I’ve experienced the anniversary effect, a strange remembering by the cells in my body of some distant thing that happened that was traumatic and life changing. Trauma is a somatic experience and It’s not something I consciously switch on, it just happens. The past few weeks I’ve been exhausted and crying and extremely sensitive but these things aren’t something to fight they are simply what is. 

I have found this past 6 months that acceptance is a lot more present than it used to be, there are still days (such as yesterday) where I want to scream and shout and pull it all out of my body, where I get angry and feel sorry for myself and grieve for what once was or could have been. This is especially present when doing something that I would have just got on with in the past that now gives me a pay off in days of sludgey, treacle-like, emotionally painful fatigue. An example being I started college at the beginning of September (studying Horticulture, so I can deepen my love of plants and nature), just 3 hours a week on a Thursday but by jingo for 3 days after I’m a mess. The difference being now, more often than not, I ALLOW myself to be a mess. Isn’t the messiness from where the beauty germinates and begins to grow?

As I sit here and write this and take a deep breath and try to think about what I want to say to encapsulate the past four years, there is so much contained within me that I don’t know where to begin. I suppose I just want myself and others to know that I’m still here. I still dance with the injury but after 4 years of lessons my rhythm is improving. I also want to give thanks, to my husband, my family and my brain injury community for being understanding, supportive and full of strength and love. I’m lucky. I know this. To have people around me who let me be, who let me expand and shrink and ebb and flow as I need to without looking at their watches or tapping their feet. For those of you who don’t have this support, I’m sorry and know that from the confines of the Internet I am holding the space for you should you need it.

I know there’s a part of me that’s lost forever, a reminder of that part, on occasion can break my heart into pieces, suddenly and swiftly, but I’ve also (mostly) said goodbye to her and let her disappear off into the sunset, her time here with me, for now, is done. I want to no longer talk of ‘battles’ and ‘fights’ regarding my trauma because if I’m fighting who am I fighting? Who am I hurting? Usually myself. There is no need to fight if I let my suffering go. A battle only becomes a battle if I make it so.

There’s still so much growing for me to do,  I need to build trust again, in my body and the world. All of this was stripped away by trauma. I’ve not got my energy expenditure balanced yet, there’s still a lot of famine and feast in my cycles of energy. There’s a huge part of me resisting this because just existing isn’t good enough for me, I want to LIVE. But as with everything throughout this ride, everything evolves and has a lifecycle of its own, I’m letting resistance run its course until it morphs into what comes next. In brain injury terms I’m STILL young, there’s plenty more healing and shifting to come, a fact that both frightens and excites me. There’s also a potential official PTSD diagnosis to come, though giving me a label only helps when dealing with infuriating red tape but not so much on a personal level. Doesn’t really matter to me what this ‘thing’ I have is called, its impact and subsequent learning is dealt with the same way regardless.

As always I’ve chosen a song for this post and I’ve chosen ‘There is a mountain’ by Donovan mostly because it’s a cheery little number but also because with brain injury “first there is a mountain, then there is no mountain, then there is” this song speaks to me about perception and how magic can be found if we look at things differently. 4 years ago my mountain appeared, but through love, compassion, determination, hibernating, sitting with myself and searching and changing my view, the mountain is something that undulates gorgeously, something that becomes a beautiful part of the landscape instead of an obstacle to tackle.

(if an advert pops up at the start of the video, I do apologise. YouTube meh)

17

But now you’re here, brighten my Northern sky

I wanted to wait a few days to write this but got too excited so I’m just diving in and getting it done. A few days ago (29th July to be precise) myself and Mr braingirl went and did this.

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We had kept this fairly quiet, planned it over the past few months and then on a glorious sunny day in the north of Ireland we had a beautiful handfasting ceremony. The numbers were kept small (close family only) with a few wonderful generous friends, whom I wish to thank through this post, who contributed to make the day special by playing music, taking photos and conducting the ceremony. The whole day was held in our beautiful garden courtesy of our landlady and we had a scrummy all vegan buffet by Sarah’s world fare .

But, I hear you cry, what does this have to do with brain injury? Well, everything and nothing. Those of you familiar with my story so far will know myself and Mr braingirl met a mere month before my injury you will also know how he has tirelessly cared for me for years. It is also known that my fatigue restricts many things in my life including big stressful events like …well….weddings. On the morning, I had a few moments of feeling like I couldn’t do it but I told my brain to get itself together because THIS IS ON. But this is also absolutely nothing to do with my injury, it’s a day separate from that thing that happened, it’s a day we used to reclaim ourselves back as a couple without the third wheel in the relationship having anything to do with it. Let me tell you it was a day full of joy, love, beauty, nature and friendship.

It was a time when both our families could get together for the first time that didn’t involve intensive care and hospitals. A time for me to reconnect with my niece and nephew who are wild wolves in the best way that children are supposed to be, full of fun and wonder. I sit here now full of happy tears because my family have gone home across the sea and I got a glimpse, a reminder of just how good life is. I sat for a few times at the wedding and looked around and thought to myself ‘THIS is what life is about’.

I want to share a few things about the day with you, firstly we did it without spending massive amounts of money. No wedding needs to cost thousands of pounds. A few people told us it was the best wedding they have been to ( not family members, so no obligation to say this) and I think it was because it transcended the actual act of the mechanics of marriage, it became about the meaning of it and the heart present within it. It was handmade, rustic and simple, no fussy dress code, no formal speeches, no present list, no long drawn out hymns and the only rule was to relax and have fun. My mum in law stitched reams of bunting and made our cake, I made table decorations from bundles of twigs from the garden, confetti from dried rose petals and lavender, tree decorations for pence and a bouquet from garden trimmings put together on the morning.

I sneaked in a secret speech that I’d written that made my mum cry snort as it was a thanks to Mr braingirl for the nearly 4 years of care and safety and support. It was my time to try to give back to him a little something for diverting all the attention for all this time.

All in all it was a magical day (and I use that word as it’s literally intended, I had goddess blessings from a witchy friend, hidden and not so hidden about my person). A day I wish I could do all over again, there was something very special in the air two days ago and thanks to Shirley our pagan officiant we spread it around to all our guests like magical beautiful confetti.

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Just before it started, what a beautiful setting. (Photo by my sister).

 

 

8

You look so tired, unhappy

This is my June post, very late in the month and not what I intended it to be. I had an outline of a script written for a video but I’ve been defeated by fatigue. I wanted to get something out there though so I’m just writing where I’m at today.

I’m fed up today, I’ve been fed up for the past three weeks. I’ve been fatigued for the past three weeks. Minimal activity, days and days of sitting in bed in my pyjamas staring at a screen watching reruns of tv shows that won’t tax my brain. I’ll not lie I’m demotivated, overwhelmed, sad and really really f****d off.

This is the thing with brain injury, initially it defines you completely, you are each other. You lose who you are and become one with the TBI. This then subsides into a more cooperative existence, you know each other are sharing the same space and some of the time can rub along together quite well.

THEN THIS HAPPENS

This descent into fatigue, this life stopping, mood changing and all round annoying aspect of my brain injury. I said on my support group the other day of all the things that my brain injury took, I miss my energy the most. This is true, without energy EVERYTHING becomes difficult. It’s also a time when you realise that to some degree you are still defined by the trauma. What happened to me over three and a half years ago still runs the show, it’s not as strong as it used to be but overnight it can firmly and stubbornly put the brakes on.

There’s been a few triggers; hospital appointments, general busyness and then the current political state of the UK. I don’t want to talk about it too much here but the recent vote in the Uk triggered my Post Traumatic Stress. The feeling of being vulnerable and unsafe combined with the catastrophising on social media and the terrible rise in racist incidents sent my brain into an exhausting and fear filled panic spiral. I can’t stop this happening, it does it all by itself. What I CAN do is accept that’s how I feel right now.

I KNOW it’s part of recovery, I KNOW it will pass, I KNOW it’s for my own good but can I just say right here right now in this moment I hate every stingy, mean, exhausting and boring minute of it. I hate being stuck and trapped, I hate feeling my brain literally shut down after ten minutes of any concentrated effort. I HATE IT, I HATE IT.

There’s a certain expectation to be used to this by now, to just go with the flow. Well, I am used to it but I still hate it. I do go with the flow, but ‘going with the flow’ doesn’t mean denying my anger and frustration. As I sit here with my ears constantly clanging with tinnitus, my eyes leaking and my brain just refusing to connect up, this is TBI nearly 4 years on. This is my reality. This is the time to rage against what’s happened.

So I’m resting, switching off, avoiding social media as much as possible, eating well, drinking water, trying to connect both sides of my brain up and waiting this out.

And then, one morning soon, I’ll wake up and be able to get out of bed. I’ll have energy and joy. I’ll be able to read a book or have a conversation without feeling like my body wants to shut down. I’m telling you this because each subsequent episode of fatigue is a launching pad, it’s the hibernation period before you take off into your next chunk of recovery and this is what’s waiting for me at the end of this tunnel and this is what keeps me going, I hope it keeps you going too.

1

ABI week 2016. The end.

 

The deeper that sorrow carves into your being the more joy you can contain. Is not the cup that holds your wine the very cup that was burned in the potter’s oven?” — Kahlil Gibran

So here we are, the end. Massive thanks to those who endured my constant posting, those who read, shared and commented and the guest writers who entrusted me with their stories. It’s been a busy week for me and I know why I don’t blog more often than once a month! I’ve enjoyed bringing you different voices this week and showing you some of the different ways that brain injury can be sustained and dealt with.

The overall theme of all the posts is one of hope and strength. I’ve met people that have really been through some devastating situations but they are all brave, strong, caring and incredibly empathic. The role that community plays in recovery must never be underestimated. I run a support group on Facebook (that includes thrivers and care givers) and whilst we have never met each other in person we hold each other up when needed, swap information and ideas and generally get to take off our shoes and be ourselves in a little corner of the Internet. Having a group of non judgemental people who are ready to encourage and help when needed is a great boost. No one questions what you’re feeling or doing they just accept. This has helped my recovery very much and I know it’s helped theirs too.

I want you the brain injured to take away from this week that you are never alone and there is hope, I want the care givers to understand their loved ones a little better but to also know they have a voice too and I’d love the general public to have come away with more awareness of brain injury and it’s invisible nature but to also be a little more careful with their one and only brain.

Brain Injury is many things, it’s sad, frustrating, the biggest loss, fatigue, pain, change, fear and anger inducing but it can also be heart and mind opening, rebirth, compassion, love and kinship. I truly hope yours eventually becomes more of the latter than the former.

If you’d like to connect more here’s some links for you

My braingirl Facebook page is here

The closed Facebook support group (for survivors and care givers) I run UK and Ireland brain injury support is here

I look forward to meeting you

thank you

0

ABI week 2016. A care givers story. ‘He survived’

 

Today’s post is written by @poorlittlenell (her Twitter handle) she is sharing her experience of her sons Acquired Brain Injury that he sustained at birth. This really captures the fear, the frustration and then the blossoming that occurs. I’d like to thank poorlittlenell for sharing such a beautiful story with me.

Trigger warning: contains a distressing description of the birth.

 

The weather that week was unseasonably cold for Sydney in November but as I looked out of the hospital window, sunshine broke through the clouds. I watched a man in Chris Evans glasses make his way purposefully across the car park. Beyond him, vehicles whizzed by on their morning commute.
“Don’t they realise,” I thought, “that the world has changed?”

My son had been born half an hour before. He was not with me on the recovery ward. Only thirty minutes previously, after a nightmarish birth, I had watched him die. Then medical staff poured into the delivery suite. A nurse tore the small alabaster body away from me. Slumped on the delivery table, all I could see was an emergency doctor holding up a pair of heart-starting paddles, the kind they use in medical dramas.
“Clear!” someone instructed.
“This isn’t happening,” I thought. “This type of thing doesn’t happen to me.”
I asked the nurse beside me if my baby was OK but her eyes were fixed ahead, her expression filled with horror. She did not reply.
“Why shouldn’t it happen?” I realised. “What makes me immune from losing a child?”
Ten minutes later, fitting, eyes rolling, my son was rushed to Intensive Care.
They had brought him back from death. He had survived.

Eight years later, on a dazzling October morning in Scotland, I faced my son’s paediatric key worker at the day programme he was attending for his anger issues.
“He has Acquired Brain Injury,” she explained to me, “caused by his oxygen deprivation at birth.”
Mystified, I asked: “What’s Acquired Brain Injury?”

My son’s diagnosis should not have come as a shock to me. From the moment of his traumatic birth, his medical problems had been numerous. As soon as his fits were under control, his high muscle tone and favouring of his left side led to him spending a year in physiotherapy. A skull x-ray for suspected craniosynostosis had come back clear but an MRI scan had revealed him to have enlarged ventricles and possible other brain abnormalities. On top of this, until he was almost four, he was hospitalised at least once a month with his severe asthma. At the same time, he diagnosed with multiple life-threatening allergies. Once these were addressed, his asthma began to improve but by then we had left Australia for a new start in UK, leaving his medical files to take the slow boat after us.
On the day my son was born, I was told there was no guarantee he would ever walk or talk. Later, when he showed the doctors he was bouncing back from death with astonishing aplomb, they reassured me I had cause for cautious optimism. This prediction, at first, seemed to play out beyond my most fervent hopes. While physically slower to develop, my son had vast energy and, apparently, uncanny mental sharpness. When he was a week old, he would follow me around the room with his eyes. At three weeks old, he was smiling, laughing and verbalising. After that, he was never, ever quiet or docile. He was always “on”, every dial in his personality turned to the max. The out-of-control tantrums began at six months old and from eighteen months old he stopped sleeping.

At this point I began to realise that his level of activity, intensity and emotion was beyond a range that could be described as “normal”. But, due in part to us moving house five times, his age and the severity of his other medical needs, the doctors were reluctant to give a concrete diagnosis.

I spent every available moment reading about paediatric conditions, desperate to find an answer for his concerning behaviour. With his hyperactivity, he could have had ADHD but this was not the full picture for him. His intense obsessions, rigidity, heightened anxiety and “ticking” with certain words and phrases, made me suspect he was on the Autistic Spectrum. Yet despite having many social blind spots, he was extremely sociable and capable of strong empathy. Being so intensely curious, he even seemed to match the profile of a Gifted Child. Except that he had never been able to memorise nursery rhymes or learn the simplest of songs. He would forget basic instructions the moment they had been given.
Eventually, it was his aggression that drove me back to the doctors and to Child and Adult Mental Health Services. His frustration had reached such unbearable levels that he would lash out, kicking and punching me up to sixty times a day. He pulled the bathroom door off its hinges and flew into rages where he would smash his toys and throw the contents of his bedroom down the stairs. My journey to have his behaviour addressed led us to the day programme and to his diagnosis of Acquired Brain Injury.

Nowadays I give a wry smile, thinking about my years in the dark over my son’s Brain Injury. When I see a checklist of the symptoms, he ticks every box. He is the Poster Child for ABI, a walking description. His impaired working memory, his processing delays and concentration problems seriously affect his day-to-day life. They mean that although he is currently attending mainstream school, he is nowhere close to receiving an adequate education. He has Executive Dysfunction – the brakes are off on his emotions and anxiety. While he is aware of certain “norms” of behaviour, when he is swept onto the emotional rollercoaster he cannot simply step off. These and his other symptoms are invisible. The outward signs, spotted by those around us, look like weirdness, naughtiness, even delinquency.
“I’m just wondering why you do that?” a small girl asked us the other day, pointing to the ragged sleeves of my son’s school jumper, where he had gnawed the cuffs completely away.
At Legoland, a father with teenage children frowned at us when my son, frustrated by a long wait in a queue, began repeating an inappropriate word at the top of his voice.

A neighbour was concerned and baffled recently that my son, out of my sight for less than five minutes, had failed to warn some younger children away from a dangerous activity. “He’s ten. He should have known they could have been hurt.”
When a person has Acquired Brain Injury, there is a hesitation to explain. I live in dread of his schoolmates discovering the name of his condition and adding “brain-damaged” to their list of insults. On the other hand, when I have been pushed to inform outsiders that he has a neurological disability, I have been met with scorn: “He’s not disabled!” or “Looks fine to me!” Acquired Brain Injury opens the door to a new level of complexity in understanding disability. To have a barely-functioning short-term memory is, of course, different to having barely-functioning legs – yet is, in its own way, as debilitating.

The insulting and dismissive reactions to Acquired Brain Injury are in the minority. The most common response is the one I feel the biggest need to challenge.
“He has a Brain Injury?” The listener’s expression becomes bereft. “But how awful. How sad. How terrible.”
No. My son survived. He is with us and he is so much more than the sum of his brain cells. He has huge energy and enthusiasm, boundless creativity, a sense of humour that has me laughing every time we are together no matter how challenging the day might be. I am frequently left in awe at his tenacity and determination. He has worked unbelievably hard to learn ways to handle his frustration, to the extent that he is no longer aggressive towards me. Yes, the child who would pull doors off their hinges in fits of rage no longer shows violence towards me. I find little incomprehensible notes scattered everywhere that he has written to himself as reminders of Important Things – Important, to him, almost always means Minecraft. School is difficult but despite the stress he is under every day, he keeps soldiering on, with the work, with finding friends, with his allergies, with everything.

I remember the brilliance of the sun on the day he was born and on the day of his diagnosis, a tactless contrast to the darkness of our circumstances. But in my memory, the sunshine has come to symbolise hope. Not a day goes by when I don’t give thanks for my son’s life. To see your baby die in front of you then be resuscitated, to learn he has irreversible brain damage – that is traumatic. The shock will stay with me forever. But the alternative for him was death.
In the ten years since he suffered the brain trauma, one grief has stood out in my mind: “What was he meant to be like? What did the brain damage take away?”
Last week, my son answered this question himself when we were talking about the Science of the Future. I had heard a proposal for a computerised implant for people with brain injuries that could repair the damaged part of their brain.
“If that technology ever came about,” I asked my son, “would you use it?”
“No,” he replied without hesitation. “Because if I did, I wouldn’t be myself.”
I realised then that he is a whole and complete person. My son with Acquired Brain Injury is who he is meant to be.

0

…and then the sun came out

 

“In the depth of winter, I finally learned that within me there lay an invincible summer.”
― Albert Camus

As you saw in Wednesday’s post (which if you haven’t read is here) things got very bleak at points after my TBI. I’ve documented many times through my writing and videos the loss that occurred that day. I think it is important not to hide and dismiss this aspect of injury, loss, ourselves but I also want to show that if like me you are or have been in those depths following a brain injury, there is hope.

Hope is a funny thing, it was at times just about the only thing I had to cling onto. Where that reserve of hope comes from when all seems lost, I’ve no idea. But for me, the thought that maybe just maybe in 5 minutes, or 5 days or 5 weeks I’d start to have some lightness or joy was enough to keep me going. Sometimes all it took was someone to whisper ‘you’ll be ok’ and I clung onto that like a steroid addled limpet.

This is me, telling you, that you are safe and you will get there.

There was no one defining moment when everything just clicked, it’s been a gradual unveiling that still continues to this day but I notice in my private writing things stated looking more optimistic

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I became more aware of my ‘wholeness’ the fact I could contain all of what was happening inside of me without trying to favour one over the other and fighting myself to push the ‘sad’ away. This is a regular occurrence I see within brain injury survivors in those initial years, the exhaustion we put on ourselves by fighting ourselves constantly. Even the language we use like ‘battle’ ‘war’ and ‘struggle’ do us no favours. I try not to use these terms now (they do slip out occasionally but that’s ok).

So once I’d started to learn to lean into myself, to just let things be, it became easier. It didn’t go away, of course not, but sadness and all those associated ‘negative’ emotions become part of ‘what is’if you just remove the label. This took time for me, it meant a lot of unraveling of learnt thoughts and behaviours around my emotions but I’m getting there.

I began to write less about how awful everything was and started to make lists of things I’d like to achieve, things I’d like to have in my life, an unheard of idea in the first 2 1/2 years post injury. Also, I know it’s a cliché but time, wonderful time has been an ally. Now I’m not talking a few weeks here, you need more patience than you ever thought existed in the entire world, but time has carried me further away from that place towards one that looks more comfortable. I found looking through my notebooks I was writing less now, the need to find solace on the page was lessening and I found a phrase that just was a complete lightbulb moment for me

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POST TRAUMATIC GROWTH. I had never even considered such a simple concept, I was stuck in the trauma and as far as I was concerned that was it.

I can only speak for myself and how things unfolded for me but there is growth after trauma, it takes time and effort but it’s possible. You fall over many times but that’s part of it. I fell and still do but I get up again and keep going, I don’t want to sound like one of those ‘pull your socks up’ types, I’d never say that to anyone. I know how it feels to give up, I know how it feels to be exhausted and empty, so give that part of you a little space to do its thing then try again. It’s not a race, if you aren’t feeling it for a week then have a week off. I had months (yes months) of complete inaction, berating myself for being useless. If I’d have known then to just be ok with that I’d have been less distressed and tired. We humans are funny creatures we are perfectionists, we like things done as quickly as possible, the concept of drifting and letting things unfold fills us with terror. Good! Let if fill you  with terror then once it’s gone, slow down, breathe and grow from your trauma.

 

1

ABI week 2016. Chris and Annie. All change.

 

This is a guest post from Chris, a caregiver for his wife of 39 years, Annie. Annie had a Subarachnoid Haemorrhage in 2014. This is his story about finding a new normal after such a devastating event. Thanks to Chris for sharing this with us to help raise awareness.

 

Gone are the days when a visit to my local Pharmacy saw me walk away with a small white bag with Annie and my medication in. When I visit the Pharmacy now it’s generally a large box or two filled not only with Annie’s medication but also various types of much needed equipment and items that have become an every day item.

When I walk through our apartment I am faced with changes to our lifestyle, home and routine. The hall is now a car park or I should say Wheelchair Park, complete with large charger and other accessories. The changes to the bedroom are obvious, Annie’s bed (you hear it before you see it) My single bed. One thing I have always said to Annie is no matter what we will never have single beds, now here we are forced to apart although side by side. Then there is the other equipment, hoist, Annie’s armchair and shower chair. Annie’s armchair lives in our bedroom at night and transfers to the sitting room by day. The bathroom is full of bottles of lotions and potions for beauty, bathing showering, cleansing, moisturising and other things that chivalry prevents me from disclosing. like any other bathroom I hear you say not this one. Then there are the bags, yellow, orange and black and lastly white ones. Then there is the sitting room with one real change and that’s Annie’s pride of place. I remember as a child my fathers chair it had his smell and it had his hand marks on the arms and it sat at the side of the fireplace, when he was home no one dared to sit in it. Annie’s chair as I said moves from bedroom to sitting room and has pride of place, a focal point in the sitting room. Then there is the spare room/second bedroom the bedroom tax room. It’s a store room for the nurses and the carers, it also houses Annie and my wardrobes. Finally the kitchen, the kitchen that we would have shared, the kitchen where Annie would have spent so much time. Its funny it seems that with all the change throughout our little home it’s the kitchen that reduces me to a blubbering wreck, so simple but so poignant. It’s not that the kitchen is where I cradled Annie when she had her SAH but where we would chat, sing, laugh and share life. The kitchen is now my domain, yes I cooked more than in the past, but the kitchen was like out meeting place.

Then there is Annie. These changes are huge and don’t become easy to swallow even two years following her SAH. Annie is quadriplegic and every aspect of her life is supported, however, since her Stoma and Suprapubic Catheter the personal care issues are less stressful for her. Annie tolerates me having to feed her and meal times are quiet. Any distractions can cause Annie to loose concentration and swallowing becomes an issue.

Annie and I have been married for 39 years this year and the things that people in a loving partnership take for granted are lost. So what do I miss? I miss Annie holding my hand, I miss Annie’s cuddles, I miss our closeness and love. There are also things that people don’t understand because again it’s taken for granted that these issues remain constant in our marriage. Conversation and yes arguments are lost in the recesses of Annie’s brain. Annie has lost her ability to initiate, therefore she is unable to start a conversation or an argument in fact Annie can not initiate anything from talking to moving. I miss my friend, lover and Boss.
No one likes change especially a retired Social Worker. Sometimes change is important, lets say “for the better”. As a Social Worker I promoted change, made people change or face at times pretty harsh outcomes. I feel bitter about the forced change that we have witnessed. I resent its power and its ability to mess with Annie’s life and turn my world upside down. Now I must face it and use it to benefit us and not eat us away “Our New Normal” is the tool to make the changes more appealing and give us the encouragement to fight the inevitable changes and use them to our advantage and not get us down.