Long time no speak!
Christmas is a busy time of year for me nowadays – in between spending time with my loved ones, whilst also fitting in time to take a little planned trip to Prague for a few days. It has been hectic!
I have been a part of Facebook groups for people with ICDs and pacemakers for quite a long time now, but recently a certain post caught my eye. It was posted by a lovely lady called Melissa wanting to do some research into people with these devices – but I thought it was a great opportunity to post my submission into this blog. It may be useful to both myself and others trying to understand situations from my perspective. Although I have not had an ICD for a long time, I want to write this letter to a younger me who had just received a pacemaker and didn’t really know what to expect of life post-op. I will try to keep it short(ish) and to-the-point and hopefully learn some lessons of reflection as I’m writing.
Here is the post below (I have blocked out any personal information as I don’t know if she wants this information shared outside of the group):
To a younger me,
At the time, there was nothing anyone could say to make things feel better and I wish you had someone to give you a true perspective about what life would be like after the operation.
I know you didn’t expect to find yourself age 18 in a hospital bed being told you have heart disease and need a pacemaker, but please remember this does not effect your life as much as you thought it would. Although there will be some ‘shocks’ (literally) along the way, you will find you’ll learn a lot more lessons about life in these next few months than you ever did in those other 18 and a half years on this planet. During the journey, you’ll find friends who you thought would be there aren’t there anymore and this will hurt you a lot – but you’ll see who your true friends are in times like these.
On the topic of friends, you will learn that not everyone understands. You are allowed to say no to things because you don’t want to go, rather than going and putting yourself in a situation which makes you feel uncomfortable. People won’t understand why you don’t want to, but they don’t have to, because you’ll see life is way too short to be doing things which make you unhappy. Sometimes you have to put yourself first and stop pleasing people as your health (both mentally and physically) comes first.
You will probably also find that you will have to mature quicker than most people your age. You will feel like you’re 20 years older than you should be, yet you have to remember that this has shaped you into you! People will question your choices but you never have to justify them to anyone and if you choose not to drink alcohol it’s because of your health and not because you’re boring. Don’t be made to feel like you’re doing wrong by protecting yourself.
As for your device, it may look ugly now and seem like you’ll be scarred for life – I promise you that’s not the case. You will learn to love your little scar because it shows your bravery. Your device will also become a big part of you and you’ll eventually thank it for keeping you safe when things could have gone terribly wrong. Don’t be afraid to wear off-the-shoulder tops or put your hair up rather than wear it down to cover it because who cares if you have a scar? If it means that you remain healthy then you should be proud of it, not try and hide it away like I know you want to – this confidence comes with time though.
Also, don’t push people away, especially your closest loved ones. They just want the best for you and are hurting almost as much as you are. They will soon see that life won’t change too much from what it was before and you can live a good-quality life, despite some struggles along the way. When you get upset, stop saying that ‘no one understands’, they may not understand completely but unless they are in your shoes they never will fully get it, so be patient and know that they are trying as much as they can to see things from your view.
Most importantly, do not worry. I wish more than anything that you would have known this at the time. Everything works itself out eventually and you will find yourself in a place where you are almost completely content with just taking each day as it comes. Your boyfriend won’t leave you, your A-Levels won’t be completely ruined and your heart will settle down over time. If life throws something else at you then you have to learn to take it and carry on!
Just remember that if you have got this far then you can get through anything! I am proud of you for continuing to try and remain as positive as you can when you have felt like you are so ‘different’ to everyone else. You are ‘different’ in a good way – getting a pacemaker has definitely benefited not only your health, but your perspective on life. Being a young person with an ICD is hard, however learning that you are not alone is the best thing you can do for yourself.
From an older (and a little bit wiser)