People Will Never Forget How You Made Them Feel

“People will forget what you said, people will forget what you did, but people will never forget how you made them feel.” – Maya Angelou

Have you ever thought about how you make people feel?

I guess it’s quite a hard question to answer unless you ask people directly. And perhaps it’s a question which might sound pretty strange.

‘Excuse me, how do I make you feel?’

You might have to prepare yourself for all sorts of answers (if people choose to be honest with you that is!!)

Could you guess what some people might say?

It’s a really good question in self awareness. Am I aware of how others might feel around me? Do they feel safe, valued, inspired, loved and cared for. Do they feel good being around me? Or might they feel intimidated, insecure, embarrassed, frustrated or angry when I am about.

Do people like being with me? Or would they rather get away from me given half a chance?

(I am sure people have felt both with me – none of us are perfect. And to be honest some people just won’t like us however hard we try).

When I first saw the Maya Angelou quote, it really struck a chord with me. I first considered how true it is as I thought about different people I have met throughout my life.

However, it also really inspired me to want to be the kind of person that people like to be around. I want people to come away with a positive feeling from being with me. I want people to feel like I am interested in them and care about them.

“Whatever you want for yourself, do it for others. If you make even small acts of compassion a daily habit, you will feel empowered & liberated from your own hurts & disappointments.” – Nick Vujicic

I don’t think we consider enough how we make people feel.

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(Image borrowed from PINTREST )

Over the past 21 months I have spent a lot of time in hospital and seen A LOT of different doctors and medical professionals and to be honest there is whole wide range of feelings I have experienced from being with or around them.

Some doctors made me feel valued, cared for, like they wanted to help, that I was a person not just a patient, that they were interested in my case, that they wanted to understand my condition and were there to support me on my journey.

Others made me feel intimidated, scared, anxious, doubted, misunderstood, inconvenient and frankly really upset!

Same job title,
Different people.
Contrasting responses.

Some people make us feel good, others can make us feel bad.
Some have a way of doing things and saying things that helps you to feel valued.
Others make you feel very under valued.

Now I have to say here that I think we need to be careful about letting other people dictate how we feel. We can’t ALWAYS blame others for making us ‘feel bad’. We can sometimes misunderstand others because of our own insecurities.

Sometimes it’s not actually them with the issue.
It’s us!
And we need a level of self awareness to know the difference.

We need humility to keep ourselves in check. To ask ourselves if we could have done or said things better. Pride will always leave us feeling hurt and we then blame others for it.

And yet it is inevitable that we are not going to feel good when the experience is bad. I am not going to feel cared for and safe if the other person seems disinterested or I feel under valued and misunderstood.

However, all this is only relevant if we understand that we can rarely change the way others behave towards us. We can perhaps influence it by being respectful, understanding and kind.

But we can’t MAKE others treat us well!

The only thing we can control is ourselves. We can only take responsibility of our own behaviour and responses. Sometimes we could all learn a bit more self control.

“Any fool can criticise, condemn and complain – and most fools do. But it takes character and self control to be understanding and forgiving.” – Dale Carnegie

So lets keep asking ourselves that question and pondering:
How do I really make others feel?

Do you try to look for ways to encourage, appreciate or compliment others? Perhaps saying “You look great today or you did that really well.” Do you try and look for the best in people, rather than just seeing the worst? Do You appreciate what they DO do for us or just point out all their failures and faults?

How can I make others feel comfortable around me?
What do they take away from time spent with me?

They are really good questions to chew on, ponder and consider. To be aware of next time we meet someone new.

We won’t always get it right, we have all had people misunderstand us. Or heard that people felt intimidated by us. I also believe people can sometimes completely misread us as we can others.

But it’s all about our hearts. I have to think about how I am acting around others and do my best to give people a positive vibe to take away. I want to be more self aware so that I get it right.I need the humility to see things from others perspectives rather than just my own limited understanding.

I want to be understanding instead of judgemental.
I want to learn to listen better rather than ‘speak my mind’ and ‘share my opinions’ AT people.
I want to think about how I can encourage others and appreciate what they do instead of criticise what they don’t.

Most of all I want to be a person people feel good being around. I know I may not always achieve this or get it right.

 BUT I SURE CAN TRY!!

How about we try together!

It’s amazing how differently people respond when we are kind. You never know, you might just become the highlight of someones bad day and your small act of kindness may well subsequently send ripples throughout the conversations and actions of many others throughout their day.

“People will forget what you SAID, people will forget what you DID, but people WILL NEVER FORGET how you made them FEEL.”

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You don’t focus on what you DON’T have you celebrate what you DO

Yesterday I watched a deeply moving and beautifully filmed advert (yes an advert!) for an American energy drink of all things. 

Adverts have certainly changed over the years. 

It’s about a top ladies basketball player from the U.S.A  called Elena Delle Donne and the intense bond that she has with her special needs sister who cannot see or hear and has various other health issues and learning difficulties. 

It is such a beautiful and moving film showing how they deeply communicate and bond through touch and other senses. 

The basketball player speaks about how the simplicity of feeling the wind against your face becomes something so profoundly beautiful when you imagine not being able to see or hear. 

It fills her sister with “pure joy.”

But there was one line in particular which touched me deeply. It spoke to me so loudly and grounded me in this difficult season I am in. 

“You don’t focus on what you don’t have, you celebrate what you do!”

Wow! 

How often do we forgot this profound yet simple truth? 

How often do we focus on everything that is wrong with our lives and then miss celebrating the wonder of what we do have?


At the moment I am in quite a lot of pain. Sometimes my spinal fluid leak seems to flare up my nerves in my head, down my spine and throughout my body. So that even when ‘lying flat’ (which normally brings great relief) my whole body just feels ‘in pain’. 

It’s not helped by the fact that I am trying to write this on my phone whilst lying flat. 

Which just seems to exacerbate it. 

And yet, when I feel inspired, when I have something to write, I just want to get it out. So that I don’t forget. So that the stirring within me is not lost and the words that are bubbling inside me don’t go flat. 

So what do those words from the advert mean to me? In this moment when pain meets a different perspective? When I have to try and see differently than how I feel?

“You don’t focus on what you don’t have, you celebrate what you do!”

There are two opposing perspectives through which I can see my life at the moment. 

The first focuses on the disability of this condition and what I DON’T have. Everything I have lost. The uncertainty of the future. The challenges of getting medical treatment. The endurance needed whilst waiting months for hospital appointments. The constant pain, fatigue and limitations. 

The second focuses on what I DO have. The blessings of a loving and supportive husband. A roof over our head and food on the table. Of my two beautiful girls being old enough to not need me to do everything for them. The fact my accident didn’t paralyse me or cause lasting serious brain damage. That I can be ‘upright’ more than I used to. That I can see and hear and get to write, listen to and watch things on the wonderful handheld computer that is my smartphone. 

Two different ways of seeing. One that can quickly lead to despair. The other that leads to gratefulness. 

Both true, both real.

And yet one can lead you to darker ways of thinking. The other to joy and bright memories. 

It is so very hard to keep perspective when you are in pain. The more you endure pain, the more strength it takes to stay positive and thankful.

Your body screams at you: 

“But this is too hard! 

I’ve had enough!

I can’t take this anymore!”

 

But your heart pulls at you whispering: 

“You can STILL love, 

You STILL have purpose, 

You WILL have better days, 

Things CAN get better.”

When I take my eyes off what I don’t have and move my gaze to what I do, it transforms my thinking. It brings light into dark places. It reminds me that although things are tough, they could be worse. 

A thankful heart is not only the greatest virtue, but the parent of all the other virtues. ~Cicero

There is a verse in the bible that says: “Be thankful in all circumstances,” -1 Thessalonians‬ ‭5:18‬‭

If your life is going well it’s easy to be thankful, but when things don’t go well gratitude is so much harder.  This bible verse can then just feel like a kick in the shins. 

“It’s alright for them with their happy, easy life (like we really know what battles others face). If I could just be fully well – THEN I will be thankful.”

And yet, I do believe there is ALWAYS something we can be thankful for. In ALL circumstances. Even when we are hurting and in pain. 

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I can remember early on in my CSF leak journey, when I still thought I had Post-Concussion Syndrome and was literally stuck lying down in a dark and quite room, I couldn’t even look at my phone screen or listen to music. One day I was feeling really fed up and self pity was knocking on my door persistently and wouldn’t leave me alone. 

I had some pistachio nuts to eat that day, the ones that you have to remove the shell. And I decided in a bid to deal with my self pity, I would think of something to be thankful for as I opened each and every nut. 

Something so simple really did change my perspective at that time. 

It’s amazing the number of things we can be thankful for when we are disciplined to remember them. 

It’s not always easy. Each and every day there is some point when my thinking can start falling into ‘woe is me with all my burdens and pain.’ Pain screams despair at you. When it’s particularly bad you wonder if you will ever make it through another day. 

And yet I do make it through those days and those dark hours. And then I stumble upon videos like the one above and the words jump into my heart reminding me: 

“You don’t focus on what you don’t have, you celebrate what you do!”

And yet again I find that I have to dig deep to find the gratitude and strength to press on and keep fighting another day. 

We then find that we are perhaps stronger than we think. Gratitude gives fuel for the fight. It grounds us in a better perspective. And reminds us that although things are not necessarily going well – there’s STILL so much to celebrate in THIS moment.

“Gratitude turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity…it makes sense of our past, brings peace for today, and creates a vision for tomorrow.” – Melody Beattie

What could you be thankful for today?

What are the things you DO have that you can celebrate? 


To read more about my story of living with a chronic spinal CSF Leak click here.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Living With a Spinal CSF Leak.

“There is no greater agony than bearing an untold story inside of you.” – Maya Angelou

I started this blog at the start of January 2015. For a while I had wanted to write. But in all honesty I was scared.

“What if I write and nobody wants to read it?”

I soon learnt that writing isn’t just dependent on others reading it. It’s a great form of self expression in its own right. It’s the attempt the find the right words to tell our own stories about our lives.

One of the first momentous, yet deeply personal stories that I shared was the first anniversary of my Mums death in a post called ‘A Journey Through Grief and What I Have Learnt.’ I had felt that in telling my own unique story, people might just connect and maybe they could relate as they struggled through their own story of grief.

Little did I know that the same week I started this blog and wrote the above piece, would be another life altering week for me.

That was the week that I sustained a brain/ spinal injury I am still battling now –

21 months later.

That day I was painting and needed to reach high up near the ceiling. So I used a relatively small step ladder to stand on, but it was resting in a place that wasn’t completely stable. I had already used it that way for hours and felt confident it was ‘stable enough.’

But my confidence was misplaced.

I took a seemingly small risk, the type that we all take everyday. But on this particular day my risk taking didn’t pay off. It was that day I had an accident. It was that moment where it felt like so much went wrong.

I have been living with the consequences of that decision ever since.

In one horrible moment the whole ladder had toppled over and took my feet from under me with it. I fell onto my back and hit the back of my head….

But,
It’s OK!
I am fine!
A bit dazed!
A bit bruised!
No real damage done!

Or so I thought!!

So I finished that painting. Exhausted & aching all over, but obviously to be expected after painting all day and having a few bruises from the fall. But within 48 hours it became obvious,

I WAS DEFINITELY NOT OK!!!

Two days later I was diagnosed with a concussion.

“You should be better by next week.” they told me.  But I wasn’t….It got WORSE!!
So we went down to A&E.

“I am sorry Mrs Hill you have Post Concussion Syndrome. You are looking at about an 8 week recovery time.” they said.

No surely, not me.
Give it four weeks.
It can’t be that bad.
That is such a long time!!! (I confidently, yet naively thought!)
I’m sure I can bounce back like any other time I have been ill for a few days.

Eight weeks later of being pretty much bed bound, in a dark and quiet room, and things still getting worse.

We head down to A&E for the third time since my fall.

I was finally admitted that time because I was so unwell, in severe pain and vomiting after being given morphine which didn’t touch the pain, only made me feel even more ill. I was finally seen by a Neurologist the next day and she moved me to their ward to look for evidence to support their initial diagnosis of low pressure headaches caused by a spinal CSF leak.

I am not going to list all my symptoms because I have done that all before. But what I will say here is that I am so very, very grateful to a handful of people who in the midst of their own pain and struggles decided to help others like me.

I have to tell you about the wonderful team at www.csfleak.info who helped me to understand more about my injury and helped me to realise that the fact I ONLY ever felt remotely well LYING FLAT IN BED for those two months, was not due to post-concussion syndrome after all,

It was probably due to a  SPINAL CSF (Cerebrospinal Fluid) LEAK!

This meant that somehow the accident had caused a small tear in the membrane in the centre of my spine (the dura) that holds in your spinal fluid. This means that my spinal fluid leaks out and is absorbed my body.

So when I am upright sitting or standing, due to gravity, my brain drops in my skull, because it lacks enough fluid to hold it in place.

Twenty One months after my fall.

I am still not better!

I have had some ups and downs along the way. Bad months in 2015 of being almost fully bed-bound. And other months after epidural blood patches (I have had 3) of being mostly upright.

But since that fall I have never had one single day of being…

Fully
Symptom
Free.

Such is the journey to full healing with this unusual and often under-diagnosed condition. Many people do get diagnosed, receive treatment, get well quickly, and never look back.

But many others face constant battles, discouragements, set backs and difficulties throughout their journey of being diagnosed and treated. Often a lack of knowledge by the medical profession makes getting fully better hard for many.

stone wallRecently, I have become so acutely aware how little many doctors, and the general public, know about spinal CSF leaks. I have heard so many stories of people struggling to get a diagnosis and, even when they do, facing many barriers to treatment.

There are many hospitals that really don’t know what to do with ‘these rare patients’ and this often makes delays in treatment an unfortunate reality for many.

I am so grateful for an amazingly supportive and well informed group of CSF leak sufferers who form an online community through the ingenious invention of Facebook groups. Many of us cannot imagine how we would have faced this journey without one another and I honestly think that some people in those UK and US based groups would not be alive today without that wonderful resource. Despair and suicidal thoughts are very prevalent within this group of patients.

Having someone tell you “I get it” whilst you both spend yet another day staring at the ceiling, flat in bed, can mean everything to someone really struggling. Even when that other person is half way across the country or even the world.

We face the daily struggles together!

It can be a lonely and difficult road battling a chronic illness. That road sometimes feels impossible when you slowly begin to realise how little knowledge a lot of doctors have about your condition.

I recently watched a very moving video, that is on the wonderful US spinal CSF leaks charity website. www.spinalcsfleak.org/resources/patient-stories/ About a lady who got a spinal fluid leak from a very badly placed epidural for the birth of her second child. She got two dural tears from the needle which caused spinal fluid to leak from her spine.

It took her 2 1/2 years to recover (she had a new born and 4 year old at that time) and she had to have 11 epidural blood patches (where they inject your own blood into the epidural space in your spine) and two surgeries to get better.

But what struck me the most was that even though everyone knew the area of her spine the leak would have been in (which is half the battle with traumatic (or spontaneous) leaks like mine) time and time again doctors refused to listen and often implied that there is no way she could be leaking CSF, and perhaps it was instead, ‘all in her head’ or something she would ‘just have to live with’.

I cried so much watching it because myself and many other leakers have faced similar battles to hers.

I find it heart breaking when people are suffering and needing help and support. And yet due to a lack of knowledge and understanding by the medical profession AND the general public, people are often told things like;

‘We have got nothing left to offer you,’
‘Try your best to get on with your life’
‘Perhaps you should try and get out more.’

Which is just a slap in the face when you are literally stuck lying flat in bed!

And yet, it doesn’t need to be that way!

There has been so much research done about spinal CSF leaks already. There IS knowledge out there. There are specialists who are leading the way, publishing medical papers and providing hope that many people CAN fully recover and perhaps don’t have to just learn to live with it after all.

Peoples minds need to be opened.

Medical professionals need to know that there is more information out there than they might realise. That there are a whole range of diverse symptoms. That people can still be leaking and debilitated, yet still function (well sort of) upright most of day. That there are many different kinds of treatments available and things that can be done to help.

  • Recently I have been thinking; how I can spread awareness?
  • How can I do my bit to help make the way clearer for those patients coming after me?
  • What skills can I offer the cause that might make a difference for both me and others?

One thing I have chosen to do is write. I can use my words to draw attention to this condition. I can tell my story in the hope it eventually reaches the people who need to hear it.

“Well, everybody’s got a story to tell and everybody’s got a wound to be healed.” Plumb

So today that’s what I want to do. I want to welcome you in to my world. I want to share with you a snap shot of what it is like living with a chronic CSF leak. So that you might have some more understanding yourself.

These days I am so very thankful that I get more hours upright than I used to. It really does make it that much easier to deal with. It helps me to feel more a part of the world around me and connect better with my kids. But it is still very very hard and debilitating to live like this.

stone wallHere is a typical start to my day….

I got up about 7:30am this morning. Lying in bed in the mornings I can actually feel pretty normal. But that feeling never lasts for long!

I get up, shower, get dressed and have breakfast, including a cup of tea and 2 pro plus caffeine tablets (because I can’t stand coffee!!)  – which can help to give me a bit more up time (although I often find it can be an artificial type boost feeling). During this time I already feel the neck stiffness and occipital (bottom back of the head) pain beginning to build up, but it’s manageable and relatively mild.

I drive part way and then walk my youngest to school. Chat to the other parents/ carers, go back to the car. Then this morning I decided I would pop to the shops.

My head is getting worse bit by bit, the pressure is building, the pain in my neck/ occipital region is increasing and my head is beginning to feel more full and a little cloudy.

I go into the supermarket – only to get a few things so it’s not too heavy. I don’t use trolleys, I don’t use a basket. I don’t take a handbag – only my purse – so that I can get as many things as possible and carry them without making my symptoms much worse.

So depending on what I have that might be 4-8 lightish items that I can hold in my hands/ arms without dropping them. If I do drop one of them (like the other day), I have to leave it or ask a shop keeper to pick it up for me. (Because bending down might make my leak, and will certainly make my symptoms, worse. At home I use a grabbing stick like the one below).

FullSizeRender

The nausea is setting in.

I pay for them on the self service check-out which is at an awkward angle so you have to bend a little to put them on the counter once scanned.

This increases my symptoms.

I bag them up and pay and by this point – just carrying the weight of those few things is making the nausea worse, so I start gagging in the lift to the car park, feeling like I want to vomit (although I don’t think I am ever fully sick).

Thankfully there is no one else in the lift with me!

I drive the short distance home – put the things away. Talk to my husband while he’s making a cup of tea (he is working from home today). During our conversation my head and neck is getting worse (I feel like someone has whacked me round the back of my head with a baseball bat!!) and I start gagging again uncontrollably – but thankfully I don’t actually vomit.

So my husband says, “you’d better go and lie down.”

I walk up the stairs and can feel my legs beginning to get very weak, I have to think about the steps I am taking, willing my legs to keep moving. The cloud in my head thickens. That feeling of not being able to cope with the intensity in my head floods over me! 

It’s 9:30am – I have been up two hours and can no longer function upright!!

I am now lying down flat in bed – feeling a lot better and writing this. I will stay here for probably an hour or two before getting up again to do some more jobs at home for maybe half an hour to an hour before the same thing happens and I have to lie down flat again.

That’s how it goes throughout the day every day although later on in the day the up times are often less and the down times can get longer.

If you saw me at the school at 8:30am, even though I had symptoms, you would think I looked fine, chatting to people (which is great because some days I don’t get to see many people).

So this is me on a good day – last year during my worst times the above would all happen with my symptoms within about 10mins of being upright.

I couldn’t even have a shower.

I would have a shallow bath once a week which I would have to lie completely flat in. As soon as I got out I would have lie on the bed with a towel round me, with my wet hair on a towel. It would take at least 1/2 hour to 1 hour before I might manage to be upright enough to put some clothes on and dry my hair a bit with the hairdryer. Or often my husband would help try and dry it whilst I lay flat.

When I was in hospital, a year ago, waiting and battling for more treatment (a second epidural blood patch) – I was in a bad way. I would spend all day lying in a head tilted down bed to alleviate symptoms and keep my brain in the place it should be. I could only manage about 5-10 mins upright at a time which makes things very hard.

We were facing lots of barriers and delays at that time (which I write about here), because the anaesthetists didn’t want to blood patch me a second time (after 5 much better months following the first) they instead wanted me to try an occipital nerve block done by the pain management team. (I did have the nerve block, it didn’t work at all, but it did leave my head, neck and hair covered in the sterile cleaning stuff.) Following that it took me two whole days to find the strength to get my husband to take me into the shower in the hospital bathroom so that he could help me wash all the chemicals from my hair and neck and help me get changed. He then dried it with a hair dryer whilst I lay flat again. (That would pretty much do me in for the whole day!!)

It’s an utterly debilitating condition. It’s not good for anyone’s physical and mental health to have to lie flat in bed all day. And yet some people are left that way, long term, because doctors don’t know what to do with them. They don’t understand how to treat them.

They do not seem to realise how impossible it is to live like that!

People are just not aware that many spinal CSF leak patients end up feeling suicidal (as I did at Christmas and write about here) because of the physical and psychological toll of the condition. Which is often exacerbated by the battles to find doctors who understand the condition, show compassion and actually do their best to help you.

There can still be an ‘old school’ mentality at large in the medical profession, even following correct diagnosis, of trying one epidural blood patch (and sometimes not even one) but if it fails to fully get you well, then they recommend that they should just try to help you manage the pain.

‘Manage the pain?’

I don’t have a sore leg, or a mild headache that goes away with some pills or a even a worse headache and stiff neck that is solved through a nerve block.

My brain drops in my skull when I am upright, wreaking all sorts of havoc in my head and body until I literally can’t physically or mentally cope. You can’t just ‘manage’ that kind of pain. And actually I wouldn’t always describe it as ‘pain’ it doesn’t do it justice. It is an intensity that can actually only be described as a sensation that is ‘beyond pain.’

(And just to add here that no painkiller I have had (Including IV morphine) has ever touched it)!

IT’S REAL!
IT’S HORRIBLE!
IT’S DEBILITATING!
BUT – IT IS TREATABLE!

Things ARE changing, patients are speaking out and coming together as a force to challenge conventional thinking about CSF leaks. And thankfully, little by little there are more wonderful doctors who are meeting enough well informed leak patients to see how great their suffering is and are slowly beginning to offer them new opportunities for diagnosis and treatment.

When someone with a leak meets a doctor who understands, or at least tries to understand, it’s truly a beautiful thing. It honestly means so very much to us.

Those doctors will never be forgotten.

We don’t expect miracle workers. We know we may not be easily fixable. But to meet someone with a willingness to try, an ear to listen, a humility to learn and a compassionate heart can make all the difference to someone on such a difficult road.

stone wall

In February this year (2016) a video was posted on You Tube that is doing so much to help change people’s minds and hearts about spinal CSF leaks. In the video Professor Ian Carroll from Stanford University Hospital in the U.S. gives a passionate lecture in which he is trying to enlist the help of doctors and medical professionals to help find and treat those suffering from spinal CSF leaks.

Through this video Dr Carroll has become our spokesperson, bravely, boldly & passionately challenging conventional thinking in the medical profession at large. And joining others in the quest to change current practice and stop people suffering unnecessarily from a mainly treatable condition.

I know for me, and many other longer term suffers, Dr Carroll’s video on YouTube is a breath of fresh air that reminds us that we are not going completely mad. So many patients have taken great hope through the impact it, and other recent information, is slowly having on awareness, diagnosis & treatment of spinal CSF leaks.

I am so very grateful for this wonderful resource from a doctor who is wanting to reach both doctors AND patients. I have gratefully been able to share this resource with some of the many doctors who have cared for me over the last 21 months. Some who have gone to great lengths to understand the condition more and do their best to support and treat me.

It is always a special moment when you meet a doctor who does watch the video or reads though the websites. People’s hearts and minds CAN be changed and it is wonderful when you see that happening.

Change does not often happen instantly. We are not all going to wake up tomorrow in a world where every person with a spinal fluid leak is going to get properly diagnosed, treated and fully recover. These conditions are complex and it takes time for understanding, research and practice to filter through.

But we can all play our part!

So today I want to ask sufferers and their families to think about;

  • How could you speak up and tell your story?
  • How can you be part of raising awareness too?

We might not all be able to write blogs, create websites, volunteer for the charities, fund raise or spread the word on the street. But perhaps we could post on social media, share a link, wear a t-shirt, or tell something of our own story.

Or perhaps you could respectfully share with a medical professional a medical paper on leaks, tell them about the UK and US CSF leak charity websites, or send them a link to Dr Carroll’s video.

You never know, they might just take a look especially if you approach it well.

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.”  – Mother Teresa

Change will only come;
little by little,
step by step,
patient by patient,
doctor by doctor,
hospital by hospital.

By individuals and groups choosing to raise awareness and helping to challenge and transform conventional perspectives and opinions.

Perhaps we can all work together to enable patient and doctor to compassionately help one another to understand this debilitating yet treatable condition. So that even if we have had a tough and difficult journey ourselves, we can seek to build bridges with others that can open lines of communication. That might just change people’s hearts and minds for the future.

That way, we are building a legacy for the future. We are making the road that bit clearer for those following behind.

Mindful of the fact that they may never fully know the difficulty, struggles, sacrifices and battles of those who went before.

“Do not go where the path may lead, go instead where there is no path and leave a trail.” -Ralph Waldo Emerson


For more posts about my story of living with a spinal CSF Leak please look at the subject heading on the menu bar above.

Here is a brilliant 2 min animation about Spinal CSF leaks.

For more information about spinal CSF leaks please see the UK charity website at www.csfleak.info or the US charity website at www.spinalcsfleak.org.

Here is the link again to Dr Carroll’s video.