Two lovely ladies weigh in on two important topics for people with chronic illnesses – defining success and the ‘battle’ talk that often accompanies illness.
When success doesn’t look like extreme sports
by Cindy Baldwin
I am not heroic
by Tanya Marlow
When running a bath makes me wonder if I have enough energy to get in it.
When taking something out of the freezer makes me need an half hour rest.
When I work hard to eat enough to keep me going and I just can’t keep it down.
When I watch my oxygen saturations drop and my heart rate rise.
When I phone the hospital in defeat and ask for an appointment as soon as possible.
Then I truly know that my life is not in my hands.
Again, I realise that I have no resources of my own to fall back upon.
Here is weakness.
Today I have nothing but my God.
I love to help. I love to be the one that people come to when there’s a problem. I love the idea of cooking meals for people, driving people places, looking after their children and other great things.
I don’t love to be helped. I’m a very independent person. Doing things alone means a lot to me. I love being in control and getting things done.
Which means that the last year has been very difficult for me. Gradually I’ve found myself in the position of someone who needs to be helped. The help-ee, you might say. Family and friends bring us the odd meal and take me shopping, help clean our house and drive me places. It’s pretty hard. I always found it easy to be the helper but this new role is one that doesn’t fit me. It’s like putting on a new dress and realising that it’s too short and the sleeves are in the wrong place. It just looks stupid on me. I’m not the help-ee. This isn’t who I am. It ruins my own view of myself.
It takes a certain sort of grace to be helped. It requires a tearing down of pride. At times, I just can’t bear it. It feels as if everything is being taken away from me right down to my ability to cook and clean in my own home. After all, I should be able to do things for myself, right? Wrong.
I think I’m learning the real meaning of ‘The Lord gives and the Lord takes away.’ Sometimes I’m tempted to have a chat with the Almighty and set him straight: ‘You know, Lord, I’d much rather be able to do things for myself. I’ll trade back again. You can have your grace back and I’ll have my little independent world in order again. Thanks.’
But in my sane moments, the ones where I’m looking to my Lord, I realise that in the taking away itself there is a new giving. God never leaves you with nothing. That’s not His nature. When He takes something away he replaces it with something new and something better. Just like you’d expect from a ever-loving, gift-giving, cup-overflower like our God.
And so, my job is to pray, ‘Lord, thanks for the taking, thanks for the giving. And for now, give me ever more grace to be helped.’
Call me strange, but I struggle with having an easy life.
I know, I know, my life doesn’t look that easy. But after a bad spell even the simplest things make my life easier. Being able to get up in 2 hours instead of 3 or 4. Not feeling ill all the time. Having a bit of energy to have people to visit or chat on the phone. Not being tired and thinking about bed all day long. Tiny things they may be but they make a big difference. And the difference they make is not just one of a slightly easier practical life but one of a slightly harder spiritual life.
The thing is, when I have quiet after my storm, when I have downhill strolls after my uphill hike, I slip, quickly and easily, into dissatisfaction. I have time and energy to think about the things that my life is missing. I notice the differences between my life and other people’s. I begin to think that things would be better if only I had a baby, a career, a long life expectancy, or whatever that day’s gripe might be.
You see, when I’m in a hospital room or sitting in our flat able to do nothing, I have to run to God. There’s no other way. When things are hard, it’s obvious we can’t do it alone. When illness pervades my life and my mind can only focus on one thing, it fixes on my Lord.
And that’s why David and I sit on our sofa in the evening and thank our Father for the trials and the hardships. That’s why we feel a little scared when we’re thrust into the world of easy living. And that’s why, in a strange, the-world-wouldn’t-understand kind of way, we look forward to our next lesson. No, we’re not being masochistic or martyr-like. We’re just learning lessons. And right now we’re realising that the best place to be is focusing on God and it’s worth whatever it takes to get there.
When ill people die the phrase that often gets thrown around is that the ill person has ‘lost their battle with their disease’. And I find that such a sad way of putting it. I know that’s often how it feels but it’s not the reality.
Before I came into hospital this time someone asked me if I was scared. My fairly unhelpful response was to burst into tears and abandon the phone. But it was a good question.
I’m not scared of death. Why would I be? I firmly believe in an eternity of glory. Bring it on.
Dying, however, is a different thing.
I’m scared of a long and painful dying.
I’m scared of years of watching life go by, as I’m able to do less.
I’m scared of the pain things cause my family.
I’m scared of leaving my husband alone.
So, yes, I’m scared.
At times I think that I’ve lost my faith. After all, how could someone who is so scared and worried be truly trusting in God’s plan? A friend said this to me: ‘Faith is still faith even when you are holding on by your fingertips.’ And it’s so true.
Every day I find something hard. It’s usually health related. And often I can’t find the words when it comes speaking to God about it. In my latest really not great spell, I could hardly make sense of anything. I went in and out of consciousness. But all the time two words echoed round my head: ‘Please Lord.’ I didn’t know what I was asking. I was scared. I didn’t know what was going to happen. But in my fear, I went to the one safe place. I ran to my Father. And that was enough.
God doesn’t demand total and perfect faith and hold it against me when I don’t deliver.
He doesn’t lose his temper when I don’t learn my lessons first time.
And He listens to my prayers when I cry out to Him. Even if those cries are just two words spoken into silence.
In my life, fear isn’t a barrier to faith. It’s a bridge. When I’m scared, I need somewhere to run. And my Father has shown me that in those times He’s the kindest, He’s the best and He’s the safest place to run.
One year ago today, I was putting on my beautiful ivory wedding dress, picking up my bouquet and speaking words of wisdom and comfort to my Dad (who was a lot more nervous than I was!) If you’d told me at that moment what this year would bring I would either have not believed you or, if I had, I’d have sat down and cried. Because this has been the most difficult year of my life.
Some would think of the whole thing as a sad coincidence. We get married and then I embark on the worst health journey I’ve had. So far in our marriage there have been 4 weeks when I’ve been pretty well. Not what we planned. One day we’re hoping to enjoy our honeymoon. It just keeps getting postponed. It’s been hard. Sometimes almost unbearably so. I won’t lie, there have been times when I’ve wished God would just take me home. It’s got to be better than a future of this. Even as I get better this time round, there’s a sadness because it’s only a matter of time until it all happens again.
But in the midst of the health rubbish, there’s a constant figure. And he’s my husband. This time last year, I was hearing him promise ‘in sickness and in health.’ We always knew that that would be our hard bit. Some people have money troubles but health, or rather the lack of it, is our thing. If I’m honest, I didn’t always believe David could do this. Oh, I never doubted his willing but I knew how little he knew about real life with me. But I underestimated him. And I’m so glad I did. All the time, I’m seeing more of his love and as I go deeper, I’m more amazed. David’s love for me is beautiful. When he brings me flowers and tells me he loves me. Or when he goes and gets the car so I don’t have to walk so far. Or when he hugs me when I cry. Or helps me shower in hospital. Or looks into my tired, ill eyes and tells me that I’m beautiful. And there’s more.
If you’d told me a year ago what this year would bring I would either have not believed you or, if I had, I’d have sat down and cried. But then I’d have picked up my bouquet and run as fast as I could to the church. Because if I knew then what I know now, I’d know that I needed to be married to David. I could never have done this on my own. God knew that. And so, in His kindness He gave me a sacrificial, loving man.
One year has gone and I love him more than ever. I can’t say I’m looking forward to all the next year will hold but in one thing I’m certain. There’s no one I’d rather share it with.
I love you, David.
On Sunday evening I thought I might be going to meet my King. But He said no. Apparently there’s more for me here. And when I look into my husband’s eyes, I know that it’s right. When I read emails from my sisters, I know that I need more time. And when I realise what such a thing would be to my parents, I’m glad I’m still here.
But this is not the story I planned. This isn’t the 2.5 children, nice house, easy life that I wanted. I have no answers. What is going on?
I know there are good things even in the pain. And I know there are great things ahead. But still, when I wake up at night, I just want to say, ‘Lord, why? Why is this story for me?’
I had a shower today. My first in a few days. Disgusting, I know. But today I managed to stay off oxygen long enough. And I feel clean and happy. A lot cleaner and a lot happier than I do after my usual daily shower. The thing is, when you get really messy, getting clean again is glorious. That’s the way the world works. Loving makes pain worth it, like joy makes sadness worth it and emptying a full bladder makes needing the loo worth it. You laugh, but you know what I mean.
It’s ok to cry. It’s ok to come before the throne and ask what’s going on. Faith doesn’t mean blindly accepting. Faith involves grieving and pain. Faith involves hurting and asking, pleading and screaming.
‘My God, my God, why have you forsaken me?’
But faith knows there is an answer. Because faith trusts in a promise. And in the midst of the questions and the weeping, faith whispers:
‘Your will be done.’
‘What is wrong with you?’
A simple question asked by a small, simple child.
I smile to myself at the horror on his mother’s face. With a quick aside to let her know that all is well, I choose my words carefully.
‘Some of the parts of my body don’t work very well. My tummy and my lungs don’t do what they’re meant to do and so I have to take tablets.’
The little boy’s eyes open wider. Perhaps in amazement, perhaps in understanding, perhaps because he enjoys shocking his mother. I guess I’ll never know.
‘And the tablets will make you better?’
I smile again, this time a slightly sadder smile. Oh, to have the faith of a child.
‘They’ll help. They help my body to work properly.’
‘So you’ll be ok then?’
Yes, small child, I’ll be ok. Maybe not in the way you meant. But I’ll be ok.
Thanks for asking.
And she said, ‘I’ve been ill and weak for so long now. Surely this can’t be right.’
And her Father said, ‘ My power is made perfect in weakness. And you weren’t weak enough. Don’t worry. This is right. This is in My plan. I planned this just for you from before time. And My plans for you are good.’
~~~~~
2 Corinthians 12:9
Matthew 6:25
Jeremiah 29:11
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