16 minute read
Life has a habit of taking us full circle.
It had been 36 years since I’d last seen Maddy, a best friend of mine from junior school days. Yet as we sat in the upstairs room of Ashley’s Bar in Shrewsbury, it immediately felt familiar.
The last time we saw each other we were most likely running around the school playground or trying to get a grasp on basic mathematics. But those simpler times were long behind us now, lost in a haze of life’s realities and adult responsibilities.
There was a lot to catch up on, and one of the first things that Maddy addressed was the wheelchair that she had arrived in, with her husband, Duncan, standing proudly behind her. It’s something that she’d put off for as long as possible, but the worsening conditions of both ME and Fibromyalgia have made it necessary.
“It makes getting around a lot easier, but we’ll talk more about that later.”
While Maddy’s story is one of significant heartbreak, mental health struggles, and two chronic health conditions; it is also one of hope, resilience, and gratitude.
Before I continue with Maddy’s story, I need to take things back a little and share one of my own.
I grew up in a small town nestled in the middle of England, and like many others before me, I eventually became desperate to leave my home town behind me. I knew that the world had so much more to offer and I just wanted to get away from everything that I’d once known.
But after two decades of travelling and adventures, and happiness and heartbreaks; I eventually found myself being drawn back there. In fact, it’s where I’ve now humbly and very happily put my roots down.
As a result, I’ve now found myself starting to value my earlier years more than I ever did before, yet something had still felt incomplete; it was as though something was still missing.
A few months ago, I put a post on social media in an attempt to connect with people who have a story to tell.
I couldn’t help but think that while it’s great having access to inspirational stories from famous people and online personalities, to me they come with an element of detachment; there’s their world, and then there’s ours.
Instead, I wanted to tell the stories of everyday people that are overcoming life’s challenges and that are battling against pain; to celebrate the unsung heroes amongst us, and most importantly, to help people feel seen and to let them be heard.
I eventually got a response to my post, but it was a response that I’d never expected to receive. And it was a response that was allowing me to complete that full circle that I mentioned, taking me right back to connect with my earliest childhood years, and placing me here, on this day, in front of Maddy.
We began our conversation in light-hearted fashion, reminiscing about our school days and the opposing directions that life had taken us. I’d spent my entire life living in the Midlands as a childless bachelor, whereas Maddy had moved over to Wales, married young, and became the proud mother of three children.
Maddy beamed as she spoke about Lauren, Alfie, and Lucie, but it was also in talking about the children where the conversation takes on a bittersweet tone.
Daughter, Lauren, was the first born and was a wonderful baby, and she was also the result of a perfect home birth.
But despite doing everything that she possibly could in order to be prepared for Lauren’s arrival, becoming a new mum proved a shock to Maddy.
It didn’t actually surprise me to hear this, because it’s a statement that I hear frequently as I speak to different parents; yet it’s an admission that often carries feelings of guilt with it. There can be tremendous amounts of pressure on a new mother; for everything to be so perfect and magical, yet it’s often not the case.
So few dare to admit this, but on reflection maybe it’s something that should be shared a little more often, even if just to help new and struggling parents feel less alone.
But it was about more than just struggling for Maddy, as she found herself in the throes of post-natal depression. She’d known something wasn’t right, but it was completely missed by health-workers and it took nine months for the diagnosis to be made.
“I can barely remember the first year of Lauren’s life because it got so bad.” Maddy reflected.
“She was a really good baby and there wasn’t any real reason for it, apart from the shock I suppose. I was young and we’d just moved to a new place.”
Maddy had tried to figure out what may have led to the development of post-natal depression, and she became convinced that it may have somehow been linked to breastfeeding. But after giving birth to Alfie three years later, she developed post-natal depression for a second time; despite having changed her approach.
“At that point I thought, if it’s not because of breastfeeding then maybe it’s just how I am.”
Maddy had a much more difficult time with Alfie in comparison to Lauren, and the birth had been a difficult one, taking place at the hospital rather than at home. After this experience, Maddy and Duncan made a decision.
“We decided that was it now, no more children. We have a boy and a girl. And we’d just moved house again. So, that’s it.”
Following these experiences and now being a mother to two children, Maddy got involved with Sure Start; a government-led initiative that opened centres in deprived areas. Amongst other things, these centres ran groups for women with post-natal depression.
This allowed Maddy to take her experiences and use them for good, supporting other women who were facing similar situations to her own.
But on the back of this, Maddy began to want another baby. And then four years after the birth of Alfie, her third born and second daughter, Lucie, arrived.
The birth was perfect. It took place at home.
And thankfully, there was no post-natal depression.
We’ve all experienced loss. And we’ve all experienced grief. It’s unavoidable, and it’s also something that we’ll go through a number of times over the course of our lives.
If we’re lucky enough we just might be granted a period of respite between these events, which allows us the opportunity to process our grief.
And if we’re really lucky it might be that the losses were, to some degree, expected; because these losses aren’t so much of a shock and acceptance can be easier to find.
But what happens to a person when significant losses and unexpected trauma occur within a short space of time?
It was thirteen years ago when the worst period of Maddy’s life began, starting with the passing of her granddad in the first month of the year.
Then, in July of that same year, her nana passed away.
This in itself is a considerable loss; two grandparents in the space of six months. But a few months later, her grandma (wife of the granddad that had died in the January) passed away also.
“I believe she died of a broken heart.” Maddy explained.
“She wasn’t right from the day he died. She died on Halloween, which was her favourite time of year.”
Maddy was admirably candid about this period of her life, although the worst was yet to come; because during this eleven-month period of loss, all her grief was compounded when she found out that her husband had been having an affair.
“We separated and I dealt with it, but I think it was the kids that got me through, because I had to be there for them. I had to get up in the morning, for them. To take them to school. I had to just carry on.”
Yet despite all this loss and heartbreak, she still managed to use it to her advantage. She worked hard and got herself to a good place in life.
“We eventually got back together and we managed to work through things. And we came out of it stronger.” Maddy said.
And this seemed very apparent to me, because the two of them appeared to be solid and were always respectful and considerate of one another. But it was a series of events that clearly left their mark.
“It was a horrible time, and I still get flashbacks of the things that happened.”
But this period of loss and betrayal in Maddy’s life soon led to complete devastation when in April of the following year she lost her dad to suicide.
“It blew the whole family out of the water and was the worst time in my life.” Maddy began. “At the time there was no warning, but when I look back at photos now, I can see the decline.”
Maddy talked me through exactly what happened; the details of which really shook me, and which were clearly painful for her to talk about. I didn’t ask any questions, and instead just left her to tell me as much or as little as she felt able.
“It was easter. And so easter has always been a bit…”
She cut off for a moment.
“We used to love easter. It was always a big celebration for us. And Alfie was born on easter Sunday.” Maddy said, reflecting. “Now it’s not so bad, but…it’s been eleven years now.”
I felt the need to say something. “And this happened the following year after everything else that…”
“It all happened in the space of just 18 months.” Maddy continued. “It was a hard time, and I had quite bad depression for a while afterwards. Everybody knew about it where we lived. And they knew about the affair. That we’d got back together. Everybody knew everything about every part of my life, which is why we moved again.”
Maddy was beginning to struggle at this point and so I began to assure her that we didn’t need to hang on this point for any longer if she didn’t wish to, but she quickly stopped me.
“No, it’s good to talk about it. Because it’s good to bring awareness to other people. At the time you feel as though you’re the only person it’s ever happened to, and so afterwards I became obsessed with looking into the subject, and actually it’s far more common than you realise, especially in men of that age.”
“He was in his fifties and was from a generation that don’t talk about their feelings, or about what’s wrong with them. He had diabetes for 30 years of his life and yet he never accepted it, to the point that he’d have a hypo almost every day and would have to inject himself all the time. So whether that was a factor in things, we don’t really know.”
Maddy tells me that the impacts rippled throughout the family, and it had a massive impact upon her mum. But, just like when Maddy had to be strong for her children, her Mum did exactly the same; throwing herself into supporting Maddy and her brother, Will.
It’s hard to imagine how difficult all of this must be for Maddy to carry; the loss of her grandparents, losing her dad to suicide, then having to battle her own mental health struggles along with the chronic fatigue of ME and the physical pain of fibromyalgia.
“My 30’s was the worst decade of my life.” Maddy says, understandably downbeat.
But after a moment of quiet reflection, I see a spark appear in her eye…
“But since I turned 40 I’m more at ease with myself.”
“Things I put up with in my 20’s and 30’s, I no longer put up with. People. Things. If I don’t want to go somewhere or do something, then I won’t.”
Getting older comes with the ability to apply a filter to our lives. The older we get and the more we experience, the greater that ability becomes. Life is hard and there is plenty that we have no control over, but when things arise that we can control, we do so with intensity.
We’re less willing to put up with the crap. And we’re unwilling to accept people’s bullshit.
I sit forward and smile too.
“Yeah.” I agree, raising my coffee cup. “Our 40’s are pretty damn awesome.”
Mental health is something that we’re becoming increasingly aware of, and for good reason. Yet it’s also an area that many will easily dismiss and be critical of, citing that some people will be quick to use mental health as an excuse for their poor behaviour, to make themselves unaccountable for their life choices, or as a reason for their inaction towards change.
The real truth, as always, is not so black-and-white.
There are valid opinions from both camps, yet these opinions are not applicable to every situation. We all have different backgrounds, face different situations, belong to different ethnic or socio-economic groups, and our support systems aren’t the same.
We have different tolerances and levels of resiliency, and a traumatic event may hit differently depending upon whether it’s a one-off event or is being compounded by multiple stressors and ongoing struggles.
Some people are naturally outward with their pain, while others internalise it and wear a mask that hides this from the outside world.
As such, it’s a subject we can never be dismissive of, yet it is also an area that is open to manipulation, which leads to the subject being trivialised and the worst affected people feeling invalidated.
This is something that Maddy and I both agreed upon, and we spend a good portion of our afternoon talking about mental health, and in particular, depression; not just about the effects of it, but how best to manage it.
Like with myriad illnesses in life, a decline in mental health and the fall towards depression usually comes with early symptoms.
The first time we’re affected by it we don’t always understand what’s happening. It’s often a slow erosion that takes place as we gradually slide down that long and slippery slope into a dark and seemingly bottomless pit.
Once we’re there, it becomes a cold and lonely place in which all hope has gone, the ability to feel joy has disappeared, and it’s like your internal pilot light has flickered and gone out. An escape from this seems impossible at first.
We all have our own ways of dealing with it, but eventually most of us manage to somehow find our way back out. The problem, however, is that we’re always prone to slipping again in the future.
And this is where education becomes vital; to understand our own mental health, to be aware of what triggers us, how the decline presents itself, and how to steer ourselves away from it. It’s about coping mechanisms, support systems, strengthening our resiliency, and taking care of ourselves. (1)
For some people this may be through exercise, watching uplifting films, or listening to upbeat music. To others it may be therapy, meditation, or a tightening of boundaries in our lives.
Some people scoff at the mention of wellbeing and us Brits in particular believe in the ‘stiff upper lip’. Yes, we do need to be strong. And yes, we do need to fight back against life. Our resiliency is an essential muscle that we must actively seek to strengthen, but ask yourself this…
If we can accept that by not taking care of our bodies we will eventually experience physical ill health, then why is mental health any different? The two are not mutually exclusive.
Despite all that Maddy has been through, and is still going through, she is an amazingly positive-thinking person. She reminds herself each day of the wonderful things in her life, and she practices gratitude.
“You can change what you expose yourself to. Change what you listen to. Change what you watch. And most importantly, change how you speak about yourself.”
We discuss how people get seemingly annoyed by positivity, as though it’s somehow healthier and more natural to focus on the bad rather than on the good.
An awareness of what’s bad and the risks that we face is crucial to survival, but that doesn’t need to take over and instead we can allow it to tick over quietly in the background, like a silent watcher. But it’s our positivity and optimism that must lead the way.
It makes you wonder whether society doesn’t exactly help itself a lot of the time. Are we actually more accustomed to think poorly of ourselves? Many people do think that way, and they become toxic energy vampires that we must protect ourselves against.
But Maddy is definitely not one of those people.
“I wear bright clothes. I’m always smiling.”
And this is undeniable, because when Maddy arrived, dressed in a bright lime-green outfit, she was carrying the warmest of smiles. And she did, in fact, bring sunshine to an otherwise cloudy afternoon.
“Your mind believes what you tell it.” Says Maddy.
And this is a point that I think we should all reflect upon.
Our conversation ultimately takes us back to the subject of the wheelchair, and the two chronic conditions that led Maddy there.
ME (or Myalgic Encephalomyelitis) is more commonly known as chronic fatigue syndrome and carries a number of symptoms that can vary from person-to-person.
This can include extreme exhaustion and tiredness that can lead to difficulties in carrying out even the simplest of daily activities, and it also affects the body and the brains’ ability to recover after expending even the smallest amount of energy.
ME would be bad enough in itself, but when combined with the widespread pain that is experienced with fibromyalgia, it becomes something else entirely.
For Maddy the fibromyalgia shows itself in the form of a severe aching form of pain, which she experiences particularly in the arms and legs where even the gentlest of touches can hurt. This pain will affect her ability to sleep, which must feel like a torturous combination when the chronic fatigue of ME makes you feel the need for sleep.
I try to put myself in Maddy’s position, thinking about how sorry for myself I’ve sometimes felt when I’ve been run down or stressed, and when I may have a few aches and pains to deal with at the same time. But this is only short lived, it’s controllable, and then I eventually get beyond it.
But I now imagine that amplified to the extreme, and realise that this is something that Maddy has to deal with on a permanent basis. Being so tired that you cannot get out of bed, and then to be in physical pain with that too.
This really hits me, and makes me feel ashamed for my complaints.
As with other things we’ve talked about, there is often a lack of understanding about such conditions, the ignorance of which can sadly lead to discriminatory behaviour; because Maddy tells me about how some people are dismissive of it and will sometimes use derogatory terms such as ‘yuppie-flu’.
But ultimately, for Maddy, the effects of the conditions have continued to worsen and have led to a continuing reduction in mobility.
I’ll be completely transparent here and admit that when I first saw the wheelchair, it was something of a shock for me. Maybe it’s because I still looked at Maddy as the same girl that I used to run around the playground with as eight-year-olds, or maybe it’s because part of me saw this as resembling a lack of freedom.
Maddy explained to me how she’d been excited about getting the wheelchair, and at first this had confused me; but it soon became clear that my ignorance had led me to believe that a wheelchair symbolised limitation.
I was very wrong about this, and I quickly realised that the wheelchair actually symbolises freedom.
It means being able to get out into the world and to do the things that she previously couldn’t.
“With having the wheelchair I’ve actually been getting out more.” Maddy explained.
“We recently went to the park and Duncan pushed me around, and I hadn’t been there for over a year. To walk there and back would’ve been too much, so now he’ll push me there and then I can get out and walk a little, and then he’ll push me back home. That’s amazing for both of us. Just to be out. And now when he’s going to the shop he can ask if I’d like to go with him.”
Maddy continued enthusiastically.
“Just the other weekend we got on the train and went to a place that was an hour away from us. I’d never been there before, because we’d have had to have gotten a hotel and stayed overnight, plus the beach was another 10 or 15 minutes away from the hotel. It would’ve just been too much of an ordeal and so we never bothered. But now, with the wheelchair, we could just head out and go to the beach for a couple of hours.”
“It was the best day I’d had in ages. The sun was shining. I walked on the beach. I sat in the sun, ate some chips, and had an ice cream. And then we came home.”
“Don’t get me wrong, it still feels weird and I think it will for some time. It took me a long time to come to terms with it. Days and nights of crying. I didn’t want to be disabled or to feel that people were judging me.”
But after some time of feeling this way, her attitude towards it shifted. And when she explains it to me, it’s delivered with confidence and passion.
“I was worrying so much about what people would think, but then I thought, you know what…I don’t give a shit what people think about me. I’ll dress how I want. I’ll be how I want. I’m happy in myself. So what does it matter what other people think.” Maddy says.
“Duncan loves being out with me and pushing me around in the wheelchair, because he feels proud.”
And despite the ups and downs that they’ve experienced, it’s clear that they have a really good partnership. I comment on this and she smiles.
“Yeah, we have. He’s great. And he does all the cooking too.” Maddy laughs.
“I’m loving life, even though it’s hard. And when I’ve had a really bad few days and I haven’t slept, and I may be crying because I don’t want to have this illness, I mean, that’s not exactly loving life. But the next day when I’m feeling a lot better, I think, do you know what, my life really isn’t that bad.”
I sit and reflect on what Maddy has just said, because there’s a lesson to take from this.
While positive thinking and optimism are wonderful things to have, there’s also no avoiding reality. There’s no point pretending that everything is perfect, and sometimes it’s okay to accept that things aren’t so great right now. That it’s-okay-to-not-be-okay, as the saying goes.
Because denying our reality is also not healthy. It’s a very fine line. But sometimes we have to face our challenges and sadness and perceived negativities in order to process them, to conquer them, and to move beyond them. Even if a month from now we have to do the same thing over.
Sometimes we need to pick ourselves up and think positively, and other times we need to stop and sit in the darkness for a while. Or, as Maddy says, to put on a sad film and cry for a little while.
“It’s okay to be sad, just as long as you don’t unpack and live there.”
When speaking to Maddy it is clear that she has a natural creative edge, and there is a real passion for learning too, having taken up all kinds of online courses over the years. But one of the things that she misses the most is the freedom to go out into the world and work the kind of full-time jobs that she previously had.
While in town one day, Maddy found herself visiting a new shop that was linked with the organisation, Designs in Mind.
At the time she’d never heard of them, but following a conversation with a lady that worked at the shop, Maddy found herself becoming a member.
Designs in Mind is a working studio in which adults with mental health challenges can come together to work on ambitious and experimental art and design projects. Over the years they’ve been commissioned to work on some prestigious projects, and Maddy speaks proudly, yet also very humbly of their achievements.
Maddy also tells me about a gardening club that she’s started at Designs in Mind and of the many mental health benefits that it brings. And she also tells me about a programme that they have called Listen and Connect, which provides a safe space where people can share whatever is on their mind.
Maddy and the other volunteers are not trained counsellors, but that doesn’t matter, because all they’re there for is to listen. And that’s something that we all need at times, yet very often fail to get. It’s amazing just how difficult it can be to find somebody that will listen. And I mean, really listen.
We often spend so much of our lives feeling isolated and unheard, which is exactly the reason as to why I started writing features like this.
We all have a story.
We all deserve to be heard.
We all deserve to feel seen.
And in return, we can all do that for others.
As our afternoon together draws towards an inevitable close, we end things on a light-hearted note, talking about our childhoods and what it was like growing up in the 80’s.
We talked of a pre-digital world where the internet and Facebook didn’t exist, and we reminisced about coming-of-age in the 90’s in the town that we both grew up in; the pubs we frequented, the people we knew, and the infamous local dialect.
Maddy commented on how strong my accent was and as the afternoon passed by it was clear that both our accents were beginning to align, growing stronger the more that we talked.
It made us both feel proud of our origins, and as I sat in the upstairs room of this bar in Shrewsbury, I began to miss home. And it was in that moment that I began to realise what I’d been missing.
At some point in my life I’d cut myself off from my childhood, but as I sat here reconnecting with an old friend from a time that had long been forgotten, it felt as though a void within me had somehow been refilled.
When I first set about writing this feature I did so with the sole intention of telling Maddy’s story. Yet somehow, inadvertently, I’ve also managed to understand my own.
Please check out the Designs in Mind website by following this link. If you head to the SHOP section of the site you’ll find all kinds of amazing things that are available to buy.
Maddy also has her own Etsy store for her own crafts that she sells independently, and you can access her page by following this link. There are some fantastic gift ideas here and maybe pick up a treat or two for yourself (and no, I’m not on commission).
(1) Those of us that have a tendency to always put other people’s needs before our own are especially at risk. Because sadly there are a lot of people that will gladly take from us but without giving much, or anything, in return. By giving them the support that they need but while ignoring our own wants and needs, our mental health can begin to decline before we even realise it. We can, in fact, make ourselves ill by doing this. Because of this you have to ask yourself, if we are looking out for people who are only looking out for themselves, then who is looking out for us? Take care of yourself, because a situation like this can destroy you.
Did this article resonate with you and do you know of anybody that would appreciate reading it? If so then please do feel free to share this article wherever you can.
Do you have any thoughts or opinions on anything you’ve just read? How does Maddy’s story mirror any events in your own life? Do you have any words that you’d like to share with Maddy or to any other readers that you feel may benefit? If so then please feel free to leave a comment below and we’ll begin a conversation.
And do you have a story of your own that you may wish to share? Or do you know of somebody whose story you feel should be heard? If so then please send me a direct message.
If you’d like to receive more content like this direct to your email inbox, then please sign up to the Lossul.com newsletter by following this link. It would be an honour to have you as part of the Lossul.com community.
Maryanne Pope “A Widow’s Awakening”
I’d Forgotten How To Live (in Praise of Feeder)
Turning 40 (and the 12 Biggest Life Lessons That I Learned in my 30’s)
Share this article:
Loved, loved, loved this blog!! Hearing Maddy’s story touched my heart. The sentence that leapt out at me was about depression & how it feels like our pilot light went out & we can’t get it started again. Thank you for sharing!
PS I also love Maddy’s Etsy shop!
Hey Maryanne, thank you so much for reading and commenting…it’s always appreciated, even if it has taken me ages to reply.
I’m glad you took something from this. I think there’s a lot in here that people can relate to and take some comfort from.
Maddy, thank you for sharing something so personal. Sharing your journey including the pain is so powerful, It takes courage. Invisible illness is the toughest to connect with for common people. Empathy and hope is all we are looking for. Being an invisible illness, its never taken seriously which is very frustrating, i can imagine the pain.
You Maddy, are a survivor, much stronger than most people you will probably encounter in your life, don’t ever forget that. My heart breaks for anyone suffering chronic pain. Our journey of life is filled with ups and downs, which is what shapes us into the people we are. When you’re having a bad day or a good day, remember that people do care about you, you are here for a reason, and the world would not be the same without you. I so appreciated your heartbreaking story and I am sending hugs and warm healing thoughts. Thank you for sharing! “And here you are living, despite it all.” – Rupi Kaur-
A quote that has always inspired me, especially in dark days Hope you and everyone else that goes through this better days!
Elliot, excellent and valuable story that you’ve written here. This article’s empathy level is the highest I could feel. You have an amazing gift, your writing is truly captivating. One sentence in particular hit me; “It’s okay to be sad, just as long as you don’t unpack and live there.” Let’s just cry it out, straighten our crowns, and move forward having faith that we got this!
I think pain is often the greatest source of writing. This only comes with gentle and persistent commitment to the mastery of craft. You see the value of being a good listener. I love your sensitive way of writing. I look forward to reading more of your inspirational „people who have a story to tell.“ articles.
PS. Great picture of you both. <3
Thank you Katy, as always, for your thoughts. And your words for Maddy are wonderful and I’m sure she appreciates them very much.
Keep shining as the bright star that you are. 🙂