Aid4Amara YouTube Channel

Sunday, 14 December 2014

Don't Give Up

Dear Me/Amara (aka Marzi to my friends or variations of that – Marzipan, Marzipants, Marz, Marzsticles, Mara – or to my family RaRa or Aunty Ra Ra or the dreaded Tomato Jane and Fanny – as in the old ye English version of bottom - Fart Draws)

I wonder if that quote is true of humans as well as cats, that the more nicknames you have the more loved you are? I have loads. Maybe it's more that I give them out with regularity and it induces loved ones to respond in kind.

Anyway I digress, it is rather weird writing to oneself, so likely I'm hopping on a tangent as a form of distraction. But I do want to have a bit of a serious chat with you. Since I am you, well, I know what that brain and heart of yours is feeling. And you are struggling quite badly.

To be honest I don't believe you have ever had it quite so bad as you have it right now. In fact were it not our reality, I would not think it possible to even live this close to death for so long and to have not died yet. That you suffer the way you do, in the manner that you do, breaks my heart and you do yourself a disservice sometimes by being so strong. Although I am aware of you faltering now, in this moment, and that is why it is important to say these things to you.

You have to stop doing so much and distracting yourself from your reality by throwing yourself into helping others. Yes, stop, I know that's who you are in your very core and I know you can't be anyone else, but you are no good to anyone else dead, or worse still suffering even more than you are now.

I know you want so badly to be a mother, to lead a meaningful life, to write that book and to help people who are like you and can't help themselves, but how can you do and be all that if you won't stop and just first look after yourself?

I am terrified that this time you've gone too far. What does it take? You already suffer daily with seizures, Tourette's, dystonia, paralysis, risk of death from exposure to chemicals even just transference of them to your environment and now you've suffered your second minor stroke, they have found some sort of artefact in your right temporal lobe that travels into your frontal lobe (which thanks to the lack of any neurologists in your team means you are relying on the public hospital – CRINGE – to ensure they have read all relevant scans and understood the gravity of the situation and will action it appropriately) and to top it off, you've been advised you have cerebral atrophy. Then there's the low blood volume, the clogged arterial veins to the heart, your suddenly visible veins when you were never able to see them before, your inability to be upright without falling into paralysis after just minutes, your worsening dementia symptoms, frequent and innumerable dislocations of bones and joints, small and large, the cyclical vomiting syndrome, acidic blood, rashes over your vital organs, yucky overgrowth of bad bacteria in your gut, very low oxygen flow to the brain... and well really do I have to go on?

This is not the life you wanted. I know that. In the absence of life has been moments, minutes, hours, days, months and years of endless suffering. Decades. To have made it this far is, well pretty damn impressive. Most would have checked out by now. But you still laugh with your Ma and your loved ones, just not as often or not as freely as you did before. Because it's really hurting isn't it? You wanted to fill your life with meaning. To nurture life and mother a child, more if you were gifted with them and yet you lost your baby. That makes you a Mum still you know? No one can take that from you. And you wanted to help people – which you have done simply by sharing your story and starting Change for ME with Lee and the gorgeous team – it may not be all you wanted it to be but you did something and you did it while so sick you couldn't bathe yourself, that's no small achievement. I know you wanted to write too. To publish a book or books. To really tap into your soul and let out one of the gazillions of stories that travel around your brain and you have done that too just in a different way. You bare your soul in your blog. And it gives those who are not sick like your community an insight into their reality. That's something. Stop minimising it. Plus you let people see all of you in your most vulnerable state. That's no small thing.

Ever since you were a child, a tiny innocent child, you have been more like an adult. You always had a lot of emotional responsibility and you know how to be good friend and to look after others (just not yourself). And I know it kills you to not be able to participate in your friends lives the way you would if you were well. You used to juggle so many friends. And you loved them all and were in all sincerity close to them. But why do you judge yourself when no one else is judging you and you wouldn't judge them if they were sick? In fact you'd be making all the effort if you loved someone who was sick. So why do you still feel like it's your job? It's not your job. And those who have let you down or worse, been unkind and self involved are not worthy of your love or another moments thought. People are not perfect, do not worry if they are not there all the time, worry only that they are there at all and when they are they are they are good to you.

*Don't give up
 'cause you have friends
 Don't give up
 You're not the only one
 Don't give up
 No reason to be ashamed
 Don't give up
 You still have us
 Don't give up now
 We're proud of who you are
 Don't give up
 You know it's never been easy
 Don't give up
 'cause I belïeve there's the a place
 There's a place where we belong

Don't give up, you are loved. Don't give up, things will get better. Don't give up, hang onto hope. Don't give up Marz. You are a good person. You try very hard to help others. You are not perfect but you are NOT supposed to be. Yes I know you hate caps but I need you to hear me. You don't have to be perfect, stop trying so hard. No one else is perfect and you're okay with that so why do you think you have to be?  Be your beautiful imperfect self and own it.

I am begging you, please, don't give up, I need you to fight. Don't give up, because around the corner could be the answer. Don't give up, you are not alone. Don't give up, you are not on this journey alone.

I love you because despite what your inner voice says, that toxic inner dialogue of yours, you are innately good, ethical, moral and giving. Ignore the bugs that riddle your brain and taunt you with their lies and paranoia. Ignore the stroke induced doubts in your brain berating you and clouding your instincts. Listen to your soul, tune into the love in the universe, it's tangible, it will cocoon you and keep you safe, give you a soft place to land if you'd just let go and tap into the network of people who love you and their connections act like a safety net. Don't give up, I need you to survive, we have got shit to do. Please, don't give up.

More love than you can handle and squishes to crush you with

PS You may still have all you dream of. Don't give up.

NB Thanks to Jayne for dedicating this song to me and inspiring me to let this out xxx

*Song Lyrics by Herbie Hancock - 'Don't Give Up' (ft. P!nk and John Legend)


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