Waves of Grief in Chronic Illness

Yesterday was a hard day. A day where the horrible constant pain and nausea nagged and taunted me the whole day. A day where grief again came as waves that wouldn’t stop washing over me.

Reminders of loss, of restriction, of the shackles of chronic illness.

Grief doesn’t just come when people die. (Although that is one of the worst kinds.) Grief comes wherever there is loss in our lives of things that were important to us.

There is often a lot of things lost with chronic illness.

Grief brings an anxiety that attacks you. An inner pain that can take your breath away. A deep sense of loss and forced change. A feeling of being somewhat out of control. Not knowing what the future will look like. Unsure that you will always find the strength you need to hold on.

The grief is real yet unwelcome.

Grief is the uninvited visitor who barges into your life, to brutally remind you of everything that has gone. You don’t want it there – you fight, resist it and want to chase those thoughts and feelings away.

Sometimes you can: You find a way to refocus. To remember all the good things still left to enjoy. But some days the battle rages: You spend all day exhaustingly trying to dodge and jump wave after wave…

Until in one moment – it catches you unawares – and crashes over you again. You want to scream, cry and shout out all your pain. All the heartache. The weariness of the constant battles. You want the world to know that you don’t want to be like this. You don’t want to live like this. This is not how it was meant to be. You don’t have the energy to keep facing these levels of pain and suffering.

But there is absolutely nothing you can do but try to flow with it. To try and wade through the turbulent waves. In the fight to find that deeper peace again.

Sometimes you just have to grieve. Sometimes you have to allow yourself to lament as David did in the Bible Psalms. Sometimes you must take a moment to face the reality of the struggle. To say how much it all hurts. To acknowledge how unfair it feels.

To speak the REALITY, that these days you perhaps rarely share.

I honestly get so tired sometimes of the relentless battles I have no choice but to fight.

“Confessing weakness is the doorway to hope. It marks the end of self-reliance and the beginning of letting grace do in you what you could never do for yourself.”

Paul David Tripp

Grief is such a painful word. It’s even more of a painful feeling.
It takes you over from the pit of your stomach. As you remember how things used to be. How you hoped they would remain. The person you thought you were and would be. The life you always had in mind.

Which no longer exists… Like it did before.

A significant part of my life died five years ago. My health was shattered after one fall. I have honestly forgotten what good health feels like. I don’t remember how it feels to have a body and brain that works normally. To not have this constant pressure and pain in my head and spine. It’s constant screaming for my attention. Pulling me to distraction.

I want to be present… Here with you in this moment… With others. Focusing fully on the things I need to do. Focusing fully on this time with you. But this illness, the never-ending pain keeps pulling at me. Taunting me. Shouting at me. Demanding my attention. Trying to take over my thoughts. The relentless noise in the background of everything I do.

Sometimes I just need to speak it out. To get it outside of my own mind.

To tell you how it feels. To let someone else struggling know that I go through it all too.

And in this moment I feel it with you. You are not alone. I am present with you in this distressing place. I am here with you in…

The grief. The pain. The shame. The constant distraction. The doubts that you will make it. The exhaustion of the fight.

But that is not enough is it? To acknowledge such a terrible thing and then to leave it there with no hope. With no way forward. Because that place is too hard to stay long term. That place leads to darker and more deadly places where despair takes hold until all life is squeezed out from you.

We can’t deny it. But we must find a way through it.

Otherwise we might drown.

“Occasionally weep deeply over the life you hoped would be. Grieve the losses. Then wash your face. Trust God. And embrace the life you have.”

John Piper

Some days the battle is harder. Some days it is a little easier.

But when those horrible waves of grief do come, I am learning to let them BE for a moment. To acknowledge them – to voice them. Denial never helps – it only builds then bursts you open one day to levels that are unbearable. So I must learn the patient endurance again as today I attempt to rest as much as I can, and wait for the waves to still a little more. Returning to a more steady place I can again find the strength again;

To re-frame. To refocus. To SEE with new eyes the beauty that is still here.

It’s in the facing and accepting of grief that we find a new way forward. A journey of many wrestlings where we MUST learn how to accept the things we cannot change, whilst having the wisdom and courage to change the things we can.

Neither living in denial nor getting pulled into the pit of despair.

Gratitude helps that. To see, remember and focus on all the wonder still around me. My loving husband, family, a beautiful home, food on the table, amazing friends. The opportunity to write, to see others, to encourage and teach different people through church, to make a small difference in someone else’s life. To remember all the things I can do amidst all the restrictions…

… To continue to love and to be loved.

To see beyond my own pain and allow it to produce a deeper sensitivity to others pain –physical, mental and emotional. To know that learning how to deal with my own personal battles – gives me new wisdom to help others deal with theirs. The goal that in overcoming each day – I can help someone else overcome too. To stay and fight to see the wonder still around us, the hope that can still be found.

I have to again remember that my life has purpose and meaning within all its restrictions and despite its debilitation.

This is not always as easy as it sounds. The theory is good, the practice can be so hard. Because when grief comes – it not only reminds you of what is lost, it also tries to steal everything you have left. It can paralyse you as it attacks your confidence, your peace, your mental stability, your ability to know you still have purpose and worth.

“Suffering is never abstract, theoretical, or impersonal. Suffering is real, tangible, personal, and specific.”

Paul David Tripp

Grief can pull us into itself – into ourselves.

It’s suffocating. Distressing. Disconcerting. Disconnecting.

But we have to both accept it – whilst also finding a way through it. We know we can’t stay here. Without it pulling us into dark places that are full of despair.

We have to choose to wrestle our way back into brighter places. Where we can see and be thankful for what we do have. Where hope for the future can return – despite what that actually looks like. A place where we can again see that our life matters, it has purpose and can lead to new adventures, to new places.

However, to embrace the new we must first let go of the old.

That is why we grieve.

It’s in the letting go.

It’s in the feelings of loss.

But it’s also in the letting go that we discover more freedom. In accepting what has now gone – we become more open to discovering a different way of life that is still worth living. It may not look how we imagined it. It will probably still be full of a multitude of challenges. It doesn’t mean the pain will all go.

But as we again let go of the reigns, as we stop trying to stay in control. End trying to compare our lives to an idealistic fantasy that doesn’t actually exist. Whilst we learn to accept that life can be full of things that seem to go wrong. We can also learn to ‘let go’ and discover a glorious deeper surrender in the here and now. Surrendering to a new way, a new plan and new purpose that is ordered by One who is greater than we are – if we will seek Him. A way forward in hope – even in midst of the brokenness of our world and our fragile humanity.

A way that is full of love and life. Despite the pain and restrictions.

But to embrace the new we must grieve and lay down the old. Otherwise we will never see the beauty in this season. We will never witness new birth coming from dead things. The new shoots of spring, of new life, coming from the death and desolation of the winter.

So sometimes we just have to let the waves of grief come. I have to simply allow them to break over me. And even though sometimes I may rawly feel their brutality. I hope that I can keep holding on through them to discover the beautiful horizons, that although perhaps currently hidden, still remain to be explored and discovered on their other side.

“I know it’s all you’ve got to just be strong. And it’s a fight just to keep it together, together. I know you think, that you are too far gone. But hope is never lost. Hope is never lost. Hold on, don’t let go. Just take, one step, closer. Put one foot in front of the other. You’ll, get through this. Just follow the light in the darkness.”

Jenn Johnson ‘You’re Gonna be OK

To explore how I find a deeper strength to face the reality of living in a broken world with a debilitating chronic illness please see “Suffering Into A Deeper Spiritual Awakening.”

To read more about my 5 year journey with a spinal csf leak please click on the SPINAL CSF LEAK heading above or read this post: Living with a Spinal CSF Leak.

3 thoughts on “Waves of Grief in Chronic Illness”

  1. “One Single Fall” – those words are still ringing like a bell. Thank you for this post, I found it very warming. My fall was in 1993 and it was many years before i knew of CSF Leaks, and so you can imagine the journey. It changed my career from professional programmer to musician. Programming, sitting in a chair growing pain VS standing playing music, the pain grows much slower and playing music takes me completely away from the pain while I’m doing it.

    Liked by 1 person

    1. Wow ‘Musical Brain’ thank you so much for sharing that. I can relate so much especially to the sitting vs standing thing. I am MUCH better standing than sitting generally. It seems I perhaps leak less quickly when I stand. But other spinal CSF leakers don’t really mention that as a symptom much. It all depends where the leak is I guess. I am so glad you found a way to help the pain. Music is great for that (although I struggle with noisy music). Can you sing much. I used to sing a lot and lead the singing in church but I can only sing quietly and in short bursts these days. My head is very hypersensitive to any increase in ICP which singing causes!

      Like

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