Medicine for your soul

#14 How I learned one of life's most important lessons

Cleo and my wheelchair “Grantley Blue lightening”, who, poetically, props me up —just like the people who helped raise the money for her do.

Hi, friend! 💌

Just over a year ago, I ran a birthday fundraiser, within my friends and family, to raise the remainder of the money I needed to buy my custom wheelchair.

For anyone who doesn’t know, having a wheelchair suited to your specific needs is lifechanging for many reasons (including safety as it reduces the chance of dangerous injury by a lot)…but it’s also very expensive. After an NHS discount & contribution, VAT relief due to it being a disability aid, plus I applied for some grants (some successfully, some not), I was still just over £700 short of the amount I needed, and I decided to try and raise some of this money.

It felt odd to me doing this. I had never asked for this kind of help. I have worked on (and am continuously working on) my own shame around asking for help because I don’t have a choice but to ask for and accept help from others, but the financial element of this made me go all funny inside understandably.

I didn’t expect to raise all of the money, but my thought was “every little helps”, y’know?

Well…within days, I had everything I needed. My beautiful, wonderful support system had come together and done something incredible for me, and on my birthday, I was able to order my chair — the whole situation and everything I’ve gained from it was THE best birthday present I’ve ever gotten.

It changed me in a huge and irreversible way

I was dying. Honestly, I sometimes look back and wonder why we even worked towards getting the wheelchair when I was unlikely to get much, if any, opportunity to use it. But I know we were still fighting so hard…and lucky thing we were.

What I was and am going through…I had felt so alone — my brain had me convinced I was. I had felt like a burden. I had felt like a waste of space. I had felt like all I did was bring others down and make their life harder.

I didn’t/don’t really get to speak to people much because of energy and capacity limits, and I thought people would…forget about me? I thought this whole “thing” I’m going through would mean I’d lose everybody for various reasons.

In a post I did a few months ago, I talked about “seeing the signs of love around you”, and that lesson, for me, was learned through this experience with raising the money for my wheelchair.

I had more people helping me than I ever thought possible. People that I never would’ve expected to help me, helped me; their contributions, big and small, accompanied by the most beautiful messages reminding me of who I am and the value I have in their lives, impacts I didn’t even know I’d had...it was completely unexpected.

It changed me. It made me look much more closely at what people are doing.

You see on social media sometimes “’are you wearing your seatbelt?’ means ‘I love you’” and “’have you eaten?’ means ‘I love you’” and “’be careful’ means ‘I love you’”, and I think deep down, we know this,

but day-to-day, most people do not embody that knowledge. Most people do not take the time to see these things and to notice and acknowledge them even internally.

People will say they don’t have time or whatever, but it’s bullshit. It’s bullshit. They just haven’t learned it properly yet.

And I can’t say anything, I only learned it properly a year ago! Up until then…I’d notice sometimes, but most of the time…I’d let these things pass me by without a thought.

Now I know with my entire being, it’s a message I want to spread everywhere.

I did that fundraiser, and it showed me that I was loved, that I was cared for, it gave me some will to live back — not just because I needed to survive the 6-8 weeks that it would take for this wheelchair to be made😅 — mostly because I saw that I had people in my corner, that my absence would impact others in a way that I didn’t realise before, and that people would help if they knew how, if they were given the opportunity. I am far from alone, and now I get to notice evidence of that in the every day things.

It changed me.

It allowed me to get more out of every single day instantly

The thoughts and feelings I referenced earlier about being a burden, in the way, bringing people down…those are still present in a lot of ways — it’s inescapable in a situation like this. When you’re so ill you’re unable to take care of yourself, and on top of the torment of being this ill in the first place, you’re reliant on other people, you need so much from them, you’re stuck in one room, in bed, with constant reminders that you’re everyone’s biggest stress, their lives are more restricted because of you, that you are more than a full-time job, and there is no positive end in sight…

Lessons like this one are so important to learn.

Before even getting the wheelchair, that experience of raising the money helped me to get more out of every day, because every day, I’m looking at what people are doing, and the meaning behind the things they say, the things they don’t say, and I’m looking deeper into people’s actions and seeing that the love is there if you look for it. It’s there. And it always was there.

I am endlessly grateful for that experience and all of those wonderful people for teaching me one of the most important lessons that I’ve ever learned.

Notice the “I love yous” all around you

If there’s anything you can take from reading my writing, it’s this:

Look for the signs of love. Your brain will already see the signs that you’re alone or unloved or whatever. It will see them, create them, enlarge them. Counteract it.

See the signs of love — they’re everywhere.

For me, it’s waking up in the morning to see my mum and dad both doing their respective tasks regarding my health — something that at one point made me feel shame…an instant reminder of ”why do I need so much help? why am I such a burden?”, but now I just see 2 people who love me and want to do what they can for me without me even needing to be awake to ask; it is a joy to see them and I am just…grateful.

It’s the videos I receive every single day from my sister, just to say (and sign) “good morning” and “I love you”.

It’s the memes and videos and pictures I get from my support system of something funny or beautiful that they’ve seen or experienced, showing me again and again that they think of me all the time.

It’s the multiple-times-a-day “just call if you need something” and “shall I close this door?” [so that the smell of our food cooking doesn’t bother your 3-years-unable-to-eat self]😂 and “is there anything I can do?” or just gentle silence but being here while I deal with the constant physical and mental consequences of my sickness.

It’s when my parents panic when anything is dropped on the floor because they worry I have fallen again…and when they (half-jokingly) scold me to stop dropping things because it makes their heart drop😅

It’s everything I said in this piece.

Nothing changed. But I did. I see it now. And I am so grateful to see it.

For you…

It might be/probably is completely different things.

So notice the “I love you” when someone offers you a cuppa.

Notice the “I love you” when someone sends you something out-of-the-blue that they believe will brighten your day or make you laugh.

Notice the “I love you” when someone is excited for your good news, or sits with you in the bad.

Notice the “I love you” when someone indulges your passions, even if they don’t fully understand them.

Notice the “I love you” when someone has a go at you for doing something dangerous or not taking care of your health…instead of getting fed up with them😅 understand that that screams “I love you, and I want you to be okay”.

Notice the “I love you” when someone notices what you do, notices things about you that others don’t.

Notice it everywhere. Revel in it. Soak it in. I promise it will change you.

Lots of love,

Cyrene💘

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