Rebuilding yourself

I have got to be honest in saying this rebuilding process is rather daunting and exciting all at the same time – is that weird?! I’ve put down what I consider are a few of my essential building blocks.

Starting the day & having a plan:

It’s been 4 months now but in many ways I feel like I’m having to rebuild myself every day still. Getting up in the morning knowing that you’ve got this “thing” in your head is not easy. Sometimes I look in the mirror and that’s all I see- this large tumour but I’m learning to hand it over to God and just get on with my day. Feeling sorry for myself doesn’t help me and it doesn’t help my girls – so as my Neurosurgeon said to me: “put the tumour away in a box and let me worry about it, and you try and resurrect every aspect of your life”.

This is where having my daughters is brilliant (although not always easy!) because they have a routine – they wake up needing their morning milk in their designated bright pink/ orange no spill cups, then they need to be washed, changed and fed! It get’s us through to 8.30am and I’m usually ready to get back into bed!! But hey it gets the day started!

I’ve found that I don’t like having too much time to think – don’t get me wrong, you need physical and mental “down time” but I like to have a ‘to do’ list every day and I like to keep busy- its the way I’ve always been. Having a rough plan & organising yourself the night before or even early in the morning I find so useful as it gives me little goals and focussed targets for the day. Those that know me well will not associate me with any form of organisation or planning – but this is Sam 2.0 and we plan!

Rest & Sleep:

I have an alarm on my phone that goes off at 7am and 7pm as a reminder to take my seizure medication. In the first few weeks of coming to terms with everything, sleep was really hard and very often I would be up from about 5.30/6am just waiting for that alarm to sound- nervous that I would forget to take it, worried that I may have another grand mal seizure as a result. But as the weeks have gone by, sleep is beginning to come back to me and I am SO grateful! Another thing I’ve struggled with is listening to my body and appreciating that it needs rest. Before February I would comfortably run on 5 hrs sleep and caffeine with a packed week/weekend schedule but all that has had to change. Lockdown has been a blessing as its cleared our social calendar and made me realise how much I love just being at home with my girls with NO plans. That plus my wife making me have mid day naps and sleeping at a decent hour- its a game changer and I feel so much better for it. Tiredness lowers your seizure threshold and I realise now how badly we abuse our body when we deprive it of sleep!

Something else about my 7am/7pm alarm – as the days have gone by, instead of it being a reminder to take the medication, I’m trying to use the alarm as a reminder that God loves me: I am important to Him and he’s in complete control of this situation. It’s a strange concept I know but it really is an incredibly powerful way of flipping something with a negative association into something comforting. Even my brother has put an alarm on his phone in the same way now, just as a reminder that God loves him!

Controlling Emotions:

I’m not sure whether it’s the medication or the situation – probably a combination of both – but my mood can be a bit of a roller-coaster. Sometimes I would feel extremely high and optimistic and other times very low, flat and downbeat. I was told that this is one of the side effects of the meds but not having control over my emotions is unnerving. I initially kept it bottled up and tried to deal with it all myself but I’ve found chatting about it with my wife really cathartic and she’s able to help me through it. I think subconsciously I’ve always thought that asking for help will just make your loved ones worry and I’ve wanted to come across as strong for them but how wrong was I. Your loved ones want you to talk to them and help in your rebuilding/ healing process as much as you need them to hold you up.  

Rediscovering your Passions:

Oddly enough in the 12 months leading up to my diagnosis, I got myself into the best shape of my entire life from a fitness perspective. Until 2019 I saw the inside of the gym maybe 5 times a year! But last year I started going to HIIT classes/ gym sessions where it became a healthy addiction and the mental boost was amazing. I also started cleaning up my diet and eating healthier. Between my friends and family we have a couple of great Whatsapp groups where we motivate each other to get our workout in for the day and it made all the difference knowing we’re in it together. It’s like my body already knew I needed to get in shape to face the biggest battle of my life so far! When I had my seizures in February this year I dislocated/fractured my shoulder so getting back into fitness was not a quick or simple process and again mentally, this was quite demoralising. Initially I wasn’t even sure if I was going to be allowed to put my body under that kind of physical strain, but my medical team wanted me to get back to the things I love – so without going full pelt, I started edging my way back to doing short workouts and strengthening my shoulder (thanks Joe Wicks, The Body Coach)…to the point where as I write this, I have just completed 6 Weeks of the Insanity Training Program online (love ya Shaun T)!

Just also very quickly whilst I write about rediscovering passions, I couldn’t leave out my love for writing and playing music – it plays such a big part in my life and my recovery that there’s a whole section in this blog dedicated to it! Needless to say this has been a fundamental part of rebuilding myself.

Tumour or no tumour – finding your passions and giving yourself time to do what you love or try something new that interests you is just a pivotal part of living. I’ve always loved writing music. Being locked up in my studio is “my happy place” but for too long “life gets in the way” had been my get out clause and I delayed releasing some of my work. But lockdown and this tumour  has allowed me to refocus and realign what’s important to me.  Creatively and spiritually music lets me be ME. Finding something that gives you drive and purpose to push you forward in a positive direction. Music does that for me and I’m grateful for it.

Finding the right team – medical & spiritual:

Getting people in your medical team that you are comfortable with and most importantly that you trust is key. I’ve already spoken about the importance of having a strong support team but your medical team are equally important to this journey. That team starts with your GP, your first port of call (I cannot praise mine enough! Dr LB you legend!) to your Neurosurgeon who’s going to potentially cut open your brain! I’m grateful to say every player on my medical team is a 10/10 in my eyes – they’re all very different personalities but all equally willing to listen and help. I trust them to help me beat this.

I’ve already spoken about my A Team family in a previous post – but outside of my immediate family, the force is so strong! In some ways I have my own dedicated worldwide prayer team! I think it’s really important that you keep the right people around you- and that’s whether you have no faith or nothing but faith. Prayer is an incredibly powerful weapon and I always feel a sense of peace around me knowing that I have all these people upholding me in their prayers.

The Bucket List:

This is an odd one because I’m continually thinking of things I’d like to see and do before the clock runs out – but as the days have gone on, I actually find myself thinking more about what my purpose is and the kind of legacy I want to leave behind. I think this comes from a deeper connection with God – I really think God wanted my attention and I have rightly or wrongly found myself asking the big guy, why did this happen to me? Surely there was another way. But I’m learning that his plan is so much bigger than we can imagine and to quote Princess Elsa, i’m learning to “Let it go” and trust him completely to take care of me. I think my so called bucket list is more of a desire to work harder, be more passionate, use my time wisely, inspire people, support my family and friends and ultimately give thanks to my God in everything that I do. And so my only actual wish is to see my girls grow up.

Appreciating time:

I read something recently (to those that know me well, yes I’m actually reading things!) that really stuck in my mind – for all the things we try to gain more of in life, the one thing you can’t earn or buy more of is TIME. You can get wealthier, you can get fitter, you can give more, you can take more – but you can’t get more time. We all have 168 hours in a week and we’ve all been allotted a certain number of days on this earth and I for one have wasted a number of those hours and days on things that have not enhanced any aspect of my life. I’m not sitting here with regrets but now time feels so much more precious to me and I’m determined not to waste anymore of it. So I’m really trying to focus on working out what is important and what is trivial – like spending more face to face time with my grandma, supporting my siblings to achieve their ambitions, actually having deep and meaningful chats with my mum rather than just palming her off! (Sorry mum!) Tumour or no tumour, the truth is we’re all in the same boat- we just don’t know how much time we have, so make it count.

What I’ve learnt the hard way… Never be afraid to fall apart because it is an opportunity to rebuild yourself stronger than ever before. Sam 2.0 is up and running!