We Are Not Meant To Be Alone: Individualism vs Community

“I can do things you cannot, you can do things I cannot; together we can do great things.”
― Mother Teresa

In my last blog post: Surviving the Storm I shared some of the story of the last 3 months of my life. During the post I wrote about the journey I had been on following a fall off a ladder which, for a while, left me with a debilitating brain & spinal fluid injury which stopped me in my tracks for a number of weeks. (And included a two and a half week stay in a local hospital).

It was an immensely challenging time for us as a family. Suddenly I found myself lying in bed pretty much all day, for 10 weeks, and if I did get up, for a minimal amount of time (usually 10-30mins) I was so lightheaded, dizzy, uncomfortable & in pain that I couldn’t function normally and quickly had to return to bed. Even lying in bed I battled various unpleasant symptoms.

My husband Matt, whose job can take him all over the country, as well as being one of the leaders at our local church, suddenly lost the day to day support of his wife (and our girls (age 8 & 10) mum) and had to take on many of my roles whilst coping with his own. Anyone who knows what a ‘full’ life we normally lead knows what a challenge that was for him. One to which he stepped up to and executed so well and calmly amidst a very challenging time.

However, in this season one thing we knew early on is that we could not face this alone – without our daily life falling apart.

We needed help.
We needed support.
We needed others.
We could not cope on our own.

It’s a humbling process when you can no longer manage day to day life on your own. Having to ask for and accept help from others so that life can somehow keep moving forward each day.

For this season we could no longer be the ones to offer help. Instead we had to accept others help daily. And that brings a new level of humility as well as a new level of gratefulness for family, friendship and community.

from darkness

It was the:
love,
kindness,
service,
sacrifice
and generosity
of so many people around us that made our storm bearable. This combined with the inner strength and peace that came from our deep relationship with God allowed us to push through our weaknesses and somehow weather the storm.

We are not meant to be alone.
We are created and built to be together in family and community.
We are built to show and share love even beyond our natural families.

It is so sad that our western societies often place individualism over community. I believe that individualism is often a fruit of selfishness and self preservation and it robs us of the joys of true community. Our societies have lost so much community spirit and although various people attempt to revive it, it can be a challenging battle to fight. People are so busy with their own lives & families that we can easily loose a sense of community on a wider level.

Although myself and my husband are big advocates of community; sharing our lives and journeying together through life with others through local church and in our general lives, the last three months revealed that even after years of advocating community we too could still be too self-sufficient, individualistic and prideful in our own thinking.

How did we recognise this?

Simply that we soon discovered that early on during my illness we didn’t find it easy that suddenly the roles reversed and so many people had to help us in so many ways. That we were the ones struggling, the ones in need of help and support.

I realised that I was so used to being self-sufficient, getting on with life, facing challenges, keeping going and often the one helping others that it was a challenge when we became the ones that people rallied around to help and support.

You can feel weak and helpless, a bit of a burden to people who are already so busy with their own lives and commitments. That you are letting others down by them having to find the extra time and energy to cover your roles. 

Matt and I are great advocates of grace and generosity. We believe in giving without expecting a return, loving whether or not someone is deserving and serving others without expecting anything back. We constantly do our best to teach and model all this within our church community.

Why then can it be such a challenge for us to receive others help and generosity ourselves?

Please don’t misunderstand me: we were utterly blessed by it. It touched us deeply to have so many people look after our children, get them to and from school, prepare us beautiful meals, shower us with flowers, cards and gifts, clean our house, step into our roles at work, church and school and offer up prayers and words of support.

We were and are so very grateful and thankful for the support of so many wonderful friends and family. It was a lifeline at a very difficult time.

However, I realised that sometimes we may not naturally allow others the joy of giving and helping us because of our own pride and self sufficiency that says we are OK and can manage, even when in reality we are struggling. This is often because we do not want to trouble other people and so we think we are helping them by not letting them share in our struggles.

from darkness

Thankfully in our case we have friends and family who know us well enough to know we needed help regardless. We hardly needed to ask because the offers came pouring in which was truly a God send and a wonderful blessing. However, we still learnt that people will not always have room to be the blessing they desire to be if we do not allow them into our weaknesses and struggles. One of the reasons we don’t always let people in is because it is not easy to be vulnerable.

It is not easy for self sufficient people to be the ones in need. 

Perhaps many of us are too used to being individualistic and self sufficient.
Maybe we are more a product of our western society than we first thought.

I have realised that my own self sufficiency can actually get in the way of us building the community that I believe God created us to live in. And that community is not healthy until we begin to lay down our own self sufficiency and learn to both GIVE and to RECEIVE with grace and humility.

When you are used to giving, it is not always easy to receive. On the reverse, some people are so used to being in need and receiving that they do not find it easy to give. Which is a challenge, because we need to be doing both for community to work.

Our own individualism and pride can stop community working as it should, if we do not allow others to share in our STRUGGLES as well as our VICTORIES.

As I wrote in a recent blog post about the anniversary of my Mums death I believe that:

Sometimes our hearts need to be exposed.
Our weaknesses need to be seen.

I believe it is important because it’s often our vulnerabilities that bring us the greatest connection to other people. It’s in our weaknesses that we realise:

That we all need others.
That we are not built to live life alone.
That pride & self-sufficiency are the enemies of true community.
That if we want to be part of a community that we need to let people into our lives – warts and all.

The challenge of community is to become people who are open about our lives and will choose to both GIVE and RECEIVE graciously.

The beauty of humanity is majestically displayed when we are loving & serving one another. For it is love that creates real community. At the heart of love is humility & generosity. And it is humility & generosity that breaks down pride, individualism and self sufficiency.

Which, in turn, opens the way for true community.

We may impress people by our strengths; but we connect with them through our vulnerabilities. – Nicky Gumbel

How can we allow others to share in our lives in a way that builds true community? Do you find it easier to give or to receive? How can we embrace the humility needed to model healthy community to others?


Community is not healthy until we begin to lay down our own self sufficiency and learn to both GIVE and to RECEIVE with grace and humility.


 

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Surviving the Storm: My Battle With Concussion & A CSF Leak.

‘The longer I live the more I realise the impact of attitude on my life. Attitude to me is more important than failures or successes, than what people think, say or do, it is more important than appearance, giftedness or skill. The remarkable thing is that I have a choice everyday as to the attitude I will embrace and I am convinced that life is 10% of what happens to me and 90% how I react to it.’  – Charles Swindoll

It’s been a while since I wrote on this blog. In fact, only a few days after I started the blog, I had (what I considered at the time) a little accident and fell off a step ladder and hit my head, neck, & spine as well as sustaining some other minor bruises.

The end result of this little fall was two and a half months of, at times, severe symptoms which were diagnosed by various medical professionals, firstly as Concussion, then Post-Concussion Syndrome & Whiplash and finally, about 3 weeks ago, I was diagnosed in hospital by neurologists as having a spinal CSF (Cerebral Spinal Fluid) Leak. (This is a tear in the membrane that surrounds your brain and spinal cord. It results in the spinal fluid leaking out, reducing pressure and causing your brain to drop in your skull. Mine was possibly in my neck – although this was never confirmed on MRI scans).

I am not sure we really fully know which of my symptoms could be attributed to what diagnosis, at what point. However, in the end, the CSF leak seemed to fit many ongoing symptoms, a lumbar puncture confirmed ‘low pressure’ spinal fluid and I received treatment for this which helped a lot. (This included an epidural blood patch following over 2 weeks of lying flat in hospital whilst taking caffeine supplements & pain relief).

In short I had battled for weeks with an array of symptoms which included:
Severe dizziness
Lack of balance
Pressure headaches
Severe head and neck pain
Cognitive (thinking) impairment
Sensitivity to light and noise
Nausea
Body shaking and spasms
Struggling to walk very far (and only with support)
Struggling to talk at times
A constant need to lie down flat to alleviate/ ease symptoms. (typical of a CFS leak)
Exhaustion of body & mind

Over the last 11 weeks I saw multiple NHS doctors & consultants, nurses, physios, had 3 trips to A&E, one ambulance to the house, a two and a half weeks stay in an NHS neurology ward, a CT scan, X-rays, 3 MRI scans, (all inconclusive) 1 lumbar puncture and 1 epidural blood patch.

I am currently still on the journey of recovery and building up my strength. Not fully back to normal and still have to lie down at times during the day, especially in the evenings, but I am so much better than I was.

It’s certainly been a challenging 11 weeks which totally disrupted my, and my family’s, normality. I spent 22-23 hours a day, for the first couple of months, lying in bed in a dark room, mostly on my own, doing very little and then two and a half weeks in hospital lying flat as much as possible whilst I waited for various tests and procedures.

Grunge Background

After starting my blog in January, the third blog post I wrote was about Perspective: Stepping Back From The Detail To See The Bigger Picture. I wrote about how our perspective is really important and how we sometimes we need to step back from the details to see the bigger picture. I spoke about how sometimes it’s not circumstances that need to change but the way we see what is happening. Sometimes we have to choose to see things differently, we have to see with new eyes.

Who could have known that the words that I wrote at that time could be so significant for me in the days, weeks, and even months after I wrote them. Sometimes it’s our own words that become powerful in speaking back to us. The words we say or write in one season of our life becomes so applicable to another season of our life, in a new way.

So over the past few weeks I’ve learnt a lot about perspective. Many hours, of many days, I’ve had to step back from the detail to see the bigger picture. I have had to step back from the symptoms to get a larger perspective.

Some days you have to fight for a better perspective.
Sometimes you have to push your way through the details to gain a better understanding.
Sometimes you have to step back from the circumstances and choose to change your attitude.

Especially when things can be:
Scary
Unknown
Different
Exceedingly frustrating
Exhausting

When you can feel:
Very unwell
Naive
Helpless
Weak
Uninformed
Mentally impaired

When the new season requires new:
Patience
Endurance
Wisdom
Strength
Faith
Determination

Grunge Background

The past number of weeks again opened my eyes to new perspective. I can’t recall in my life ever being ill for more than a few days. I’ve never had a brain injury before and I really didn’t know a lot about them. I now have a much better understanding, and a better perspective of people who experience them and similar things.

The challenge of mild traumatic brain injuries, is that they are often unseen. They are not a visible injury. Concussions, whiplash, and often CSF leaks, don’t appear on normal CT or MRI scans so it creates problems in diagnosis, all you have is the symptoms to go on.

It’s a humbling process as you try and work your way through the symptoms, often having to rely on the information you seek out yourself, to work out what on earth is wrong with you and how to get the right treatment. It’s a challenge when you are diagnosed with something that people don’t know a lot about. When your illness or injury is not fully tangible, yet so debilitating, and can often only be diagnosed by the symptoms that you experience and have to try and communicate to medical professionals.

So it’s been a season of learning.

Challenge and hardship are often a place we grow, a place we learn, a place we develop. If we choose to approach them in the right way and with the right perspective.

The Bible NLT Translation, James‬ ‭1‬:‭2-4. You can experience joy through challenging times because you know that it is stretching your ability to endure.
The Bible NLT Translation, James‬ ‭1‬:‭2-4. You can experience joy through challenging times because you know that it is stretching your ability to endure.

Sometimes:
We just have to be patient.
We have to keep walking through the storm and trust the calm will come.
We have to face the challenges of life and then use what we learn to make us stronger and help other people.
We have to keep holding on to hope without knowing all the answers.
We have to fight to stay thankful and see the positives within a difficult time.

It’s all about having the right perspective.

It’s not easy.

Some days you have to fight through the frustration, the fear, the worry and the negative thoughts. Until you can again see with a better, more positive and hopeful perspective and step back from the details of your circumstances.

When I stepped back from the detail in my situation, I could see that it could have been worse. Yes this accident interrupted my life, yes it was frustrating, a real challenge. It totally changed my life for a number of weeks and months. However, I had so much wonderful help and support from my family and friends. I have learnt so much and gained a better perspective and more appreciation of life. And I am now coming through my storm, I am doing well in recovery and I am getting back to some kind of normality day by day.

There is never any point in wasting energy on the ‘why me?’ or ‘what ifs?’ A negative mindset, looking backwards or forwards, just destroys you from the inside out. Even amidst very difficult times there’s always something to be thankful for and others worse off than you. I always chose to believe that my storm would pass (even when I seemed to be getting worse rather than better), others don’t have that blessing, the storm just gets worse and doesn’t go away.


Some days you have to fight through the frustration, the fear, the worry and the negative thoughts. Until you can again see with a better, more positive and hopeful perspective.


So again, with new insight, I say that so much is linked to perspective. We can choose to see the positives or become consumed by the negatives in our lives. We can choose remain thankful for the good things, even when we are going through a dark time.

Often it’s not the circumstances of our lives that need to change. It’s our perspective, it’s our attitude, it’s the way we ‘see’ and think about our life.

Sometimes we need to step back from the detail to see the bigger picture. We then realise that often the storms in life come and go. And with the right attitude and a hopeful perspective we will come through it:
a little stronger,
a little wiser,
a little more thankful for daily life,
and have a little more compassion for others.

It’s all about perspective!

I am convinced that life is 10% of what happens to me and 90% how I react to it.’ – Charles Swindoll

Lets keep asking ourselves: What parts of our own lives could we see with a more positive perspective? Self awareness is always the first step to personal change.


I have now written two update posts about my recovery journey at 6 months and at 8 months; I then have a series of posts about a relapse at 9 months  when it was decided that I probably never had a concussion and all my symptoms could be attributed to a spinal CSF Leak

To read more about my 20 months on 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.

Please see this new May 2018 medical paper about the 10 most common myths and misperceptions about spinal CSF leaks. It is by some of the top world experts in treating this condition. I was told so many of these myths by various neurologists, anaesthetists, radiologists and many other doctors during my lengthy and traumatic nearly 3 year battle with a spinal CSF leak. This kind of misinformation caused many delays, misunderstanding and great distress on my already immensely long winded and difficult medical journey.

Click here to read more about my spinal CSF leak recovery following my 4th blind lumbar 40ml epidural blood patch in September 2017 and subsequent ‘rebound into higher CSF pressure/ hypersensitivity to higher pressure’ following that treatment. 

A fantastic informative video that you can refer to about spinal CSF Leaks, their symptoms and treatments is The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak? by Professor Ian Carroll at Stamford University Hospitals.

To find out more about Concussion and Post Concussion this video is a great resource: Concussion Management