This is perhaps my most brutally honest post, straight from my heart and has taken me a few attempts to write… do me a favour please, before you go any further, click on the song below and let it play in the background as you read this post, it’s spoken to me and helped me a lot recently:
I’ve really found July a tough month and even the start of August. I can’t quite put my finger on it – I’ve had moments where I think I’m getting out of the rut only to be pulled straight back in again. And it’s no-ones fault but I think I’ve had my first real moments of self-pity and feeling alone. I have such amazing support and people around me as I keep saying, and that has not changed one bit… in fact quite the opposite, I get more support and encouragement each day… it’s just within myself the fear maybe takes hold a little more now that everyone is trying to find their new normals again.
Lockdown wasn’t easy by any means and I apologise if I offend anyone if it sounds like I’m glorifying it – but looking back on it for me, it was amazing. Just me, Sindhu and the girls – no distractions, just us 4. I know it sounds silly but when you are blessed with an amazing set of parents on both sides that continually want to do everything for you, you almost let them take care of certain aspects of your life. We would always have about 3 out of 7 days of the week covered in terms of food! Either my mum or mother in law would (lovingly!) send home cooked food which is a God send after coming back late from work but equally meant we didn’t have to sort out food for half the week… But through lockdown my wife has rekindled her love for cooking and tried out loads of different cuisines! Even I unlocked a hidden talent- the ability to make incredibly fluffy pancakes from scratch! We missed our cleaner SO much! But it meant we did all the deep cleaning and cleared out loads of clutter in the process! And the best bit was there was no additional pressure to go anywhere, see anyone, do anything! I sound like a right misery guts, but I mean it in the nicest possible way… we just had some time to concentrate on us and work things out together.
People keep asking me how I am – and I’m not even sure what to say anymore, because in all honesty, the answer to that question could go on for about 20 minutes! I’m learning… I don’t want to be pretend but I don’t want to worry people unnecessarily… I think a fair response these days is ‘I have my ups and downs’. As crazy as it sounds, I also feel like the weather has played it’s part – I’ve had many more focal seizures over the last few weeks and I sense it’s because it’s been so hot and I’m constantly de-hydrated but I’m not sure whether I need to up my medication or whether I need to just drink more water! It’s all just most ingredients in the pot if that makes sense.
Here’s another really honest feeling: not wanting to be treated any different but also hoping people are sensitive enough not to forget I’ve got a lot on my plate – it’s such a weird feeling to try and explain… I really don’t want to be a special case, I just want family and friends to treat me normally… but I also hope they find it within themselves to remember how much of a difference it makes to me when they do encourage and support me – acts of random kindness be it a text or your time literally has the power to change the course of a day.
Some days I feel like a car engine that keeps starting but then stalling. I can get myself going but the smallest of things makes me stop and contemplate – and that really frustrates me! I hate stopping and restarting, it really does frustrate me! What I’ve also realised is that as supportive as everyone is, they don’t always understand that it takes a lot to get restarted again – just like an engine drinking fuel after stalling and restarting… finding the energy and motivation to keep restarting is exhausting. I’m just trying to be very transparent with this journey and so far I’ve really tried hard to stay positive despite the negativity that naturally comes with the diagnosis – it’s just for the first time in this journey I’m in a place that’s not familiar to me and I’m just working out how to get out… and I really want to work it out because I know it’ll come again and I need to now how to help myself move forward.
I have to say one thing that got me recently is knowing that my oldest daughter Avaana knows I’m not 100% – we were watching something on tv the other day and they mentioned ‘cancer’ and she asked me if that’s what I have… and it really broke my heart. I didn’t really know what to say to her – partly because I don’t really know myself! But I’ve always wanted to be a dad that’s honest with my kids, protect them from what they don’t need to know but not lie to them about important things. I thank God for my daughters every second of everyday, not only do they give me purpose but I feel like they’re these little angels from the big guy himself… recently after the ‘cancer’ conversation with Avaana, she told me we’re going to ‘beat the cuckoo in Daddy’s head’… I don’t know where she got the word ‘cuckoo’ but she said ‘Daddy, it’s like a bird… it’s going to fly away… the cuckoo is getting weaker and Daddy is getting stronger’.
That’s my heart laid out on a blog post! I want to end it by bringing it back to what keeps me going… of course my 3 girls are my inspiration! But what anchors us all to keep fighting and believing is our faith in God – I really feel at peace when I think of the fact that he’s holding me and he’s got me… those are the moments I feel refreshed and have a purpose to get on with life. I appreciate it’s a strange concept to find peace in something that seems intangible – but I think that’s just it, faith. He’s always loved you… open your heart, take a step out in faith and he’ll find you.