I would like to preface this by saying that I am incredibly grateful for the second chance I’ve been given. Without the immense support I’ve received from countless people, who knows what state I’d be in right now. That being said, I started this blog to help others, which I can’t do if I’m not honest.
So, what’s going on inside my head…
I imagine everyone has their own hang-ups right? Insecurities you’ve never quite been able to shake? A fear of things you don’t understand? The crushing weight of expectation?
Like everyone, I’ve felt the stress of these at some point in my life. Since my transplant however, I’ve had a few things on my mind which I only recently realised are the same thoughts other transplant recipients are having. I’m sure this is different for everyone, but one of the biggest worries I have is not being able to give back enough.
It might sound ridiculous, and I know if I wasn’t living it I’d laugh it off and tell myself to stop being stupid. It’s a little hard to explain, but I honestly feel like I’ve relied so heavily on so many people that I’ll forever be indebted to everyone who got me here. These people literally saved my life, and short of becoming a doctor or a vigilante, I can’t see me doing the whole “a life for a life” thing either.
I’ve joined support groups, attended awareness events, set up this page, and am looking at joining wider initiatives to help people going through similar life events, but I don’t know that any amount of community engagement will completely reconcile the debt I owe. I doubt it helps that I’ve always prided myself on being independent, and now I’m the most dependant person I know. People make excuses for me, saying it was unavailable or that some were doing their job, but it doesn’t change the fact that I have a better life because of them. Just being grateful doesn’t really help anyone.
To be honest, I don’t know that this is entirely a bad thing. Actively wanting to contribute in a positive way can’t be all that terrible, and I think learning to accept help is fairly important in itself. I guess I just want to find a balance between making the absolute most of my life and giving back in a way that helps other in a significant way.
Then there are my concerns about getting back to normal. On one hand, I want what was normal before. I want full-time work, I want to be able to run, I want to travel – I want to rely wholly on myself again. On the other hand, I want something more than the normal I know. I want to truly enjoy what I have, do things I was too unwell to do or were just too risky – but where do I draw the line? Is it irresponsible of me to do things like ride a motorcycle? Should I not consider opportunities which may take me away from my support network because it will make it harder to support them if needed? Or is it disrespectful to everyone who worked so hard to get me here, to restrict myself because of what could happen? This doesn’t even take into consideration the potential for recurrent PSC or any change in my Ulcerative Colitis. How do I prepare for those risks without limiting my ability to make the most of my renewed health?
I never considered any of this before my transplant. It just never crossed my mind.
While these thoughts aren’t constantly running through my head, they’re there, and I often find myself second guessing the decisions I make as a result. I know I’m not alone in questioning myself, especially in the transplant community, so it’s all that bad. Knowing other people have these worries validates them in a way, and I’m sure many more people have similar concerns but perhaps find them harder to voice.
There’s a good chance this isn’t you, but if it is, find people who will actively listen to you, and talk. I’ve found online groups (Facebook, Reddit, etc.) are a great help, but close friends, family, and even strangers, can add some legitimacy or perspective to your thoughts, if not resolve them entirely.
Or just start a blog and tell everyone your problems!
I hope this helps someone else understand it’s not just them.