Every day you can make a difference #StarfishStory

Do you ever wonder what will happen when you’re gone? I know a hard and delicate subject but after the past few months (and past four years) sometimes it comes into my head. Like what difference have I made in the world? Will people remember me? Will I leave my mark? I want to leave a legacy, I want my life to count for something.

I think all of us want to make a difference in the world we live in, whether we speak loud and proud about it or don’t mention it at all but feel it deep within in us. There’s always a feeling of being wanted, loved and needed. We’re human beings and we come with a multitude of feelings and emotions to deal with and express. When I was younger I had so many dreams, I knew exactly what I wanted to do I wanted to be a paediatric specialist nurse working firstly in general wards, then a CF ward then hospice work. I grew up with friends who were very unwell so CF (cystic fibrosis) means a lot to me and still does. Although I’ve always been unwell when I was growing up it wasn’t clear what was making me ill and because it came from so many different areas like the joints, bowel, bladder, heart and immune system we managed what we could (the doctors weren’t exactly helpful) and carried on. But then in my teenage years it slowly went downhill and so did my studies too. Then fast forward to turning 18/19 and my body fully deteriorates on me. Four and a bit years later and here I am. I know I can’t change where I am and I can’t change my situation. All I can ever do is try to make the most of what I do have. I’m here, alive and half functioning and maybe I still can make a change in this world.

For so long I grieved where I wanted to be before I got seriously unwell, I mean to be honest I still am there I’d be lying if I said I wasn’t. Grief is a very long process. You grieve the person you were before, the things you were able to do, the way you could walk and run and now wheels is your legs, lifting is painful and pain is your best friend. I miss so, so much of ‘before’ and sometimes I can find myself thinking about it for ages and next minute I realise there’s tears streaming down my face because I know how ever much I sit and reminisce I can’t get it back and I can’t explain how heart breaking that is. From losing the dream carer I planned since I was a little girl to losing out on my studying, to spending over 24 months in hospital as an inpatient including multiple stays in intensive care not knowing if I would pull through, to losing some bodily functions and knowing I’m never going to be able to run again and feel my feet against the pavement or on the sand and walking in the sea. To going from a full days work, being productive and having energy to go out when I wanted to; to then getting showered and dressed being an amazing achievement of the day. My energy is precious and from the moment I wake up I am on a time clock of how much I can use until I crash/need to sleep/get very unwell. From being able to relax to being on constant alert monitoring my body as it so quickly can change and with my immune system and infections I have to be on red alert as hours make the difference between life and death and I know that much too well.

My life has changed dramatically over the years and watching my partner and friends in the midst of their career paths and lives although I’m so happy for them it makes me gulp as I smile but inside try to hold back the tears and the feel emptiness of ‘well what about me? If I could work all those hours and do what they do I would in a heartbeat but I can’t. Where’s MY life going?

I always loved helping people when I was younger and I wanted to carry that on through my adult life yet since I’ve been an adult 90% of the time it’s people helping me, caring for me and saving my life which I am of course so grateful for but I want to help too. Just because I’m fighting a serious and chronic illness doesn’t mean I can’t be of help to others? It doesn’t mean that I can’t make a difference?

Does it?

Well.. years ago I would have said it does. But that was my depression talking and I’m still fighting the demons of that to this day now but the right answer is no of course it doesn’t. We ALL make a difference in our lives whether big or small and whether we realise it or not we all do. Making a difference means having an social impact on someone, sometimes the best way to make a difference is to open your heart and be a friend to the person who needs one. The most meaningful acts are often the ones we commit without prompting or expectations. We have such profound power when we lend an ear, a hand, or an act of kindness because it reminds the recipient that people are good. People DO care and we can and will help each other. That’s what gives life meaning, it’s the people who touch our lives and the people whose lives we touch.

For me with my illness there is many days where my biggest accomplishment is getting out of bed and having a shower, washing my hair, taking Willow for a short walk or not even moving from my bed because of the excruciating pain I’m in. So how can I have an impact on the world when some days (most days) I’m barely able to leave the house or my bed? Often I dream of doing something more important or what my peers seem to be doing and achieving with their lives. But the point is we ALL leave a legacy every single day and it’s not from the biggest things we all think it should be (of course those things matter too) but you can make a difference by just being YOU. Yes I did just say you, it may not seem like it but each one of us can make a difference in our own homes, to families, friends and strangers. To work, passions and projects we all have a chance at making that difference. From just smiling at someone as you walk past to holding the door open and telling someone they look nice today. To offering to help someone with their work, listening to your friend’s struggles and being a shoulder to cry on. Sending a text to someone you know is feeling down, giving hugs out and making someone laugh. To inviting someone out or staying in when they can’t and taking the time to talk to someone who’s isolated and for them you could be the only person they’ve spoke to in days. To writing a blog that reminds someone they’re not alone, to checking up on your friend you’ve lost contact with and helping with projects whether online or face to face. I could go on forever but there are hundreds of little things you can every day whether in bed, at home, at work or out, these things may seem small but to that person you’ve made them smile, laugh and a lot of times made their day. I know I’ve felt that when someone has reached out to me, done something kind and selfless, that is making a difference. Yes it’s not changed the world but it’s helped that one person and to help explain that further I’ll refer to one of my favourite stories my dad used to tell me:

Once upon a time, there was an old man who used to go to the ocean to do his writing. He had a habit of walking on the beach every morning before he began his work. Early one morning, he was walking along the shore after a big storm had passed and found the vast beach littered with starfish as far as the eye could see, stretching in both directions.

Off in the distance, the old man noticed a small boy approaching. As the boy walked, he paused every so often and as he grew closer, the man could see that he was occasionally bending down to pick up an object and throw it into the sea. The boy came closer still and the man called out, Good morning! May I ask what it is that you are doing?

The young boy paused, looked up, and replied ‘throwing starfish into the ocean. The tide has washed them up onto the beach and they can’t return to the sea by themselves, the youth replied. When the sun gets high, they will die, unless I throw them back into the water. The old man replied, But there must be tens of thousands of starfish on this beach. I’m afraid you won’t really be able to make much of a difference.

The boy bent down, picked up yet another starfish and threw it as far as he could into the ocean. Then he turned, smiled and said, ‘It made a difference to that one! 

I love that story and from the first time my dad told me it when I was young I’ve never forgotten it and it’s always popped back into my head when I’ve felt doubt in what I was doing reminding me every little thing counts. But we ALL have the opportunity to create positive change and when you feel ‘well how can I with my illness/bed bound/busy work and home life?’ remember this story.

You might not be able to change the entire world but at least you can change and impact a small part of it, for someone.

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