In the past few weeks, I've been described by a few different people as 'brave' and 'stoic' and things like that. And that's lovely and everything, but I don't really think it's true. It's not like I've chosen this life. It's not like I'm doing it for charity (sponsored breathing, anyone?!), or like I've stepped in to take on someone else's health issues so that they can live life again - and yes, I know that one's not actually possible, but what I'm getting at is that I didn't choose this. I'm not brave, I'm just someone who is trying to make the best of life in a difficult situation, like countless other people around the world. I don't know anyone who has a perfect life, who doesn't have some issue of some sort that they have to endure. I'm not brave, I'm just human.
You know who is brave, though? My husband. And anyone else who is a carer. They have a choice. They don't *have* to stick around. They could walk away, but they don't. They are true heroes, and they deserve the highest honour their country could bestow.
I have been through various different serious health issues, and I've always believed (and still do) that it is harder to be the person watching than to be the person who is ill. Don't get me wrong, I'm not saying it's easy to be ill or that I'm OK with it; I have been through many times of sheer agonising unrelenting torturous hell that I wouldn't wish on my worst enemy. But. As the person going through that, you have no choice but to go through it, and you just survive from one second to the next. You have one job to do, and that is to Just Keep Going. For the partner or parent of someone who is seriously ill, though, it's a different story. You watch your loved one in agony, and you know there's absolutely nothing you can do to take away their suffering. And for you, life doesn't just stop; you have to keep working, keep paying the bills, keep coordinating care of your loved one, keep putting food on the table, keep doing the housework, keep dealing with your own health and emotional issues, etc etc etc - and all while desperately worrying about and grieving for your loved one, and while probably bearing the brunt of their emotional response to the agony they are in.
I don't have rose-tinted glasses when it comes to my husband Andy. We've been married for twelve years now, and I know full well that he's not perfect! However, he truly IS a hero. He deserves so much more out of life than to be my carer, to be constantly juggling the fractured pieces of our lives and trying to hold everything together. He looks forward to going to work as a break from his duties at home, and he shouldn't have to live that way. He's had to do things for me that no husband should have to do for his wife, and he's had to put up with things that no husband should have to put up with. I've told him to leave, not because I want him to go but because I want him to find a better life for himself; he refuses. I have given him the choice, and he chooses to stay. *That's* bravery.
My Mum is my carer too, even though she lives 100 miles away. She may not be involved in a hands-on day to day way, but there is rarely a day that goes by when we don't talk. Among other things, she helps coordinate the care of me and my daughter, especially on crisis days; she makes phone calls for me; she has often had to talk me through how to do basic tasks or help me make simple decisions; and she and my Dad must have covered thousands of miles in travelling to collect my daughter to give my husband and I regular respite breaks. And she has chosen to do all this. Yes, she's my Mum, and she can't just choose to stop being my Mum, but that doesn't mean she should have to be providing such an in-depth level of support to her grown-up daughter. And, indeed, many parents don't; I know I am incredibly fortunate to have such a supportive family. (And my Mum isn't the only one; the rest of my family have been amazing, too.)
And then there's friends. It's true that I've lost friends since my illness, including people that I counted as my closest friends, however some very special ones have stayed and have chosen to support me. They may not be my carers in an official sense, but these precious people have believed me, have done their best to understand my illness, and have given practical and emotional support. They've also allowed me to continue being a friend to them, to give them emotional support even if it's just by text message; they've made me feel like a human again, not just an ill person. I also have friends who take my daughter to and from pre-school; help me with her on non-pre-school days; provide meals; and support us in various other ways.
Just today I was reminded of how amazing my husband and a particular friend are. I can't cope on my own with my 3 year old daughter E for long,
and she doesn't currently go to pre-school on a Tuesday so even
though I have help it's always a very difficult and exhausting day. This evening, my husband Andy told me that he'd found out last week that he needs to work late on Monday and Tuesday evening next week; before I could freak out he said something along the lines of, "It's OK, I've sorted it out with Laura". He hadn't wanted to worry me, and anyway I was in a bad way over the weekend so wouldn't have been able to take in what he was saying even if he'd told me, so he contacted my beautiful friend Laura and they've come up with a plan. Laura has a gorgeous one year old boy, and she works four days a week; she has her hands pretty full! Her one mid-week day off is Tuesday. Next week, she's going to try to leave work a bit early on the Monday so that she can collect E from me as soon as she can after E wakes up from her afternoon sleep. She's then going to take E back home with her, have her to stay over night, look after E all day on her precious day off with her son, and have her fed and bathed ready for Andy to collect on his way home from work on Tuesday evening. How amazing is that?! And that's just one example.
I could go on and on about how blessed I am and how amazing my friends and family are, but the point I want to make is that carers are incredible, wonderful, brave people who deserve our gratitude and respect, but who are all too often disregarded as the needs of the 'ill one' take precedence. They frequently bear an unimaginably heavy weight of responsibility and emotion; it's a thankless task, and they do it by choice. To all my family and friends, and especially to my long-suffering husband, THANK YOU. Those words seem so inadequate, but they are all I have. Thank you. Each and every one of you is a hero and you deserve a medal.
And to anyone out there who is a carer, or involved in some way with supporting an ill friend or family member, please never underestimate the value of the job you're doing. You cannot begin to imagine how much it means to an ill person when you just believe and try to understand what they are going through. By choosing to stick around and support them, you are giving them a priceless gift. Thank you.
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