I'm not here. I’ve disconnected a bit today and I’ve left the place where I usually hang out. My safe place. I am struggling to get back into that room, back into the moment. I’ve been shoved out and thrown back into the past with the future also hurtling around in my head. It’s not that I don’t normally notice what’s going on around me, I really do but I don’t always feel it so intensely. I tend to deal with one thing at a time, acknowledging, observing and accepting each sensation, each experience, thought and feeling as it arises, from moment to moment. But sometimes too much happens at once and I can’t process it all and it becomes consuming . That’s where I am right now struggling, struggling to make sense of a few things.
I’m finding myself back in different rooms, dark rooms with difficult memories. I can face these rooms normally but today I don’t really want to. Swirling rooms, think of the Wizard of Oz tornado with the houses flying around and that’s what these rooms are like. The room in A/E where Eloise was diagnosed, the bad news room on PICU at Bristol Childrens Hospital, the cubicle where she lay cold like death, the parents room, the small room outside cardiac intensive care at the Freeman, the anaesthetic room, Ladybird Ward, Ward 32, Cardiac Day Unit, Walrus Ward........Hospital rooms merging into one. Loud conversations, bad news, diagnoses, the look, the frown, the knowledge that you’re not going to like what you’re being told, the gut feeling, the stress, the sickness, the pain, the insomnia, the fear, the chill, the whispered conversations, the blips, the bleeps, the alarms, the dread......This is a chaotic list because that’s how it feels, you feel all of these things. Nothing is ordered, nothing is normal or taken for granted. I keep sighing, breathing in deeply and exhaling slowly. Everything is taking a lot of effort, but that’s ok.
This emotion I’m feeling isn’t really mine, yes I’ve returned to my difficult place but it’s because I’m thinking of members of my transplant family. I know I’m overly sensitive and it’s a blessing usually . I’ll be honest though sometimes it’s a struggle as I naturally want to fix people and their problems. I’m an emotional empath and I’ve known that for quite some time. So even though I’m feeling sad , I do realise this sadness isn’t my own, but my body is aching today and my head is foggy. I actually feel a little guilty for feeling this and saying it. I know these feelings will pass for me and I hope my friends will be ok too, but I know we will never be the same again.
Our transplant world is a unique one, you seek out others who are in the same situation as only they understand the road you’re on. Sometimes you wish you could 100% forget about transplant life but you can’t the little black cloud follows you, so you have to make the rest of the sky brighter. Bad news and sad news is shared in our community as well as the best news. We invest in each other emotionally , a lot of the people will remain strangers, just names that pop up in our support groups. Others will become so much more, you love them and care about what they’re going through. Then you hear or read the worst news, that one of your transplant friends has lost their fight. You cry for them, for their loved ones, you cry for yourself and for the person you love whose had a transplant. You reach out to others and you all share your grief and then your memories of better days spent with the person who has died. This is how it is, we’ve lost so many friends over the last 16 years and they’ve all died too young. You wish that life post heart transplant was easy, you wish you were guaranteed a long life, to live to old age but nothing is promised not even an extra day. Every day is fought for, some don’t even get to receive a transplant, some die in surgery or immediately afterwards, some get months, others years, we all hope for decades. When you or your loved one is dying though and a donor heart becomes available you gamble , you take that one chance, that potential life line. As our dear friend Stacie said #LifeisWorththeFight 💔
