The ebb and flow of chronic illness

It happened in the middle of a class about pain management. Which in these Covid times means it happened in the spare room, that we've turned into an office, while I was on a Zoom call.

Before a mindfulness meditation, we were asked to silently rate our pain on a scale of 1 to 10. Afterward, we were asked to rate our pain again. The hope was that each of us would experience some reduction in pain, however small. 

I didn’t. 

Because for the first time in years my pain had been at zero, to begin with. Something I hadn’t realised until that moment. 

In chatting to P about it later, I figured out that this wasn’t the first time. I had been speaking about my pain in the past tense for a couple of weeks — including at a hospital appointment — but it hadn’t sunk in enough for me to be fully conscious of the lack of pain. 

Pain had been normal for so long that I didn’t immediately notice when it disappeared. Which is weird, but also not. It is a strange sensation, being completely pain-free after 3+ years. 

It has been a few months, yet I am still adjusting. ‘I am not in pain today’, I find myself saying out loud a few times a week. Sometimes to P. Sometimes to the dog. But mostly to myself.

When the world went into lockdown in March 2020, I half-joked that nothing much was changing for me. I was two years into an arthritis flare-up that refused to play ball, no matter what medication I threw at it. It was a long time since hanging out with groups of people was a thing I did with any regularity. 

I was already only leaving the house when necessary. 

When the increased restrictions were announced soon afterward, leaving the house only when necessary became not leaving the house at all. While daily exercise within a certain radius from your home was allowed for everyone else, those of us at higher risk were not allowed to go further than our gardens. Cocooning was the term chosen to make this measure sound palatable or at the very least less doom-laden. 

Not leaving the house at all was also an act that was familiar to me. 

During my mid-20s, a depressive episode associated with my undiagnosed bipolar disorder caused me to hide from the world. The days, weeks, and months blended into one as insomnia prevented me from sleeping and my days were spent doing absolutely nothing. All from the comfort of my own home. 

Again, I half-joked that I’d gotten a headstart on cocooning before it was the must-do thing for spring.

This time cocooning meant moving in with my parents-in-law. P’s job meant that he was in contact with too many people for me to stay at home.

I don’t remember the first time I experienced pain. Considering the impact it has on my life it seems like something I should have a vivid memory of, but I don’t. What I do know is that the index finger of my right hand has always been the most painful. 

I’m not sure when I realised my tiredness was something other than not getting enough sleep. Instead, it was unrelenting and painful fatigue that I could not shake. It was accompanied by a foggy mind and feeling like my entire body was bruised. 

Chronic fatigue syndrome was the diagnosis reluctantly proffered and even more reluctantly accepted. By process of elimination, it was the only thing left. If it’s not all of these other things; it must be this collection of unexplained symptoms thrown together seemingly without connection wreaking havoc on my body and mind. 

The problem with diagnoses of elimination is that there are often differing opinions between doctors. And thanks to my local hospital and its revolving door of rheumatologists I have seen more than usual in recent years. That CFS diagnosis has shifted into treating chronic fatigue as part of my inflammatory arthritis rather than a standalone condition. This change makes sense to me. But, then, the CFS diagnosis began to make sense too. 

If the last few years have taught me anything, it is that knowing that your immune system is attacking itself and understanding why your immune system is attacking itself are two different things. Doctors don’t always understand why, either. Which is frustrating, to say the least.

Autoimmune diseases affect women at a rate almost four times higher than men, I am told. The reasons why are not fully understood. My questions garner a different response depending on the doctor. Testosterone protects men from malfunctioning immune systems, says one. The numbers are evening out, says another — as if that is explanation enough. When men fall ill their symptoms are usually worse, a particularly defensive junior doctor announces. 

I do not have the energy to ask whether this is true or whether men’s description of the pain they experience is taken at face value, while women’s pain is dismissed. Women are more likely to be prescribed sedatives and antidepressants instead of pain medication. That we may not have an underlying mental health issue does not deter many medical professionals. Our pain alone is a mental illness. If we do have a psychiatric diagnosis it is acceptable to wash your hands of us. To treat us as other. To not treat us at all. Instead, I reassure him that this isn’t a game where the person with the most pain wins.

Paternalism rules the day, or at least it rules inside the hospital walls. 

I’ve been thinking a lot about control, particularly when it comes to our health. We all want it. Until the pandemic, many people took it for granted. You know how your body will work on any given day. You know you will be able to complete the tasks you need to. Your body acts as it should. You expect it to and it does.

Until Covid-19 entered our lives. 

Lockdown meant — and, for many people, still means — that decisions about our daily lives were no longer within our control. People were confronted with the idea that your health is more precarious than you think it is. Which is a familiar experience for anyone who lives with a chronic condition or disability. People with long Covid are adjusting to long(er)-term symptoms, brought on by an acute illness, that science and medicine don’t completely understand yet. 

Easing restrictions and the rollout of vaccines means our sense of control is returning. Slowly, because we aren’t in control of when we’ll each receive our vaccine. Seeing family and friends and spending time in places we couldn’t this past year allows us to regain some of the normality we’ve lost. 

The pandemic is not over. There are people who, for a variety of reasons including a chronic illness or disability, remain in their version of level 5 lockdown. Not everyone can meet groups of people yet, even outdoors. 

We are all figuring out what does and doesn’t work for us. 

A combination of burnout, that arthritis flare-up, and grief meant I spent 2019 questioning everything. Add in the pandemic and 2020 was another year full of questions. This time about how to ‘do’ life when you can’t leave your house. 

We’re halfway through 2021 and I am finding my way back into the world. 

Slowly, ever so slowly, I am also finding my way back to myself.

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I Wish Someone Told Me Grief Would Mimic My Bipolar Disorder

In the aftermath of my father’s death last year people told me that grief would mess with my sleep, my appetite and probably my ability to carry out day-to-day tasks, such as making sure dirty dishes don’t pile up in the sink. 

I nodded, smiled and thanked each one of them for the information they shared. Telling people I would be extra kind to myself and that I have my husband to support me.

What I didn’t realise because I hadn’t put all these friendly warnings together or spoken to anyone who was experiencing grief alongside a mental illness, is just how much grief reminds me of going through a bipolar episode. 

No one sat me down with a checklist of warning signs for bipolar disorder and a checklist for the grieving process and pointed out that they are basically the same. For me, at least. 

My previous encounter with insomnia was coupled with hypomania. The last time my appetite disappeared it was the beginning of a major depressive episode, which saw me eat nothing but my husband’s risotto for the duration of it. When dirty dishes piled up in the past it was because the only task I could manage was moving from my bed to the couch. 

I cry a lot when I’m depressed. I am crying a lot due to grief. 

Whether grief itself is a mental disorder has been the subject of much debate. For everything I read from one side that makes me nod my head in agreement, I read something saying the complete opposite and find myself agreeing with that as well. Maybe the most complicated thing about grief is the time spent trying to fit it neatly into a box. 

The World Health Organisation’s International Classification of Diseases (ICD-11) includes prolonged grief as its own mental disorder. The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) removed the bereavement exclusion for diagnosing major depressive disorder, meaning that in psychiatric terms grief can trigger depression. The DSM-5 introduced the category of persistent complex bereavement disorder. Both of these disorders acknowledge that for some people their experience with the main symptoms of grief lasts longer than six or twelve months. 

This is not to say that you should recover from your grief within a year. It is common for some healing to have at least begun by the six-month mark and these persistent, complex, and complicated grief disorders recognise the negative impact on people when they, for a variety of reasons, have not yet begun the healing process. 

I worry that my grief will become complex grief. I worry that worrying about it means it is already complex grief. I worry that I’m heading toward a mixed bipolar episode. I worry that worrying about it will make it happen. I worry that all this worrying means I’m not processing my grief properly, which will only prolong the amount of time I spend worrying about these things. 

I have taken proactive steps by contacting my psychiatrist seeking reassurance that I’ll be able to differentiate a bipolar episode from grief. I have checked in with my GP so they know to keep an eye on my sleeping habits. I am attending grief counselling. Yet, the worry remains.

I worry that I have deliberately, albeit unconsciously, shifted the focus to my bipolar disorder so that I do not have to deal with the complexities of grieving. As if I can postpone it forever. As if that won’t negatively affect my mental health. 

There is no blueprint for managing your grief while managing bipolar disorder. It may be out there, but I haven’t found it among the many articles, books, and podcasts about grief that I have read and listened to since my dad’s death. 

I try to stick to my finely tuned evening routine; a long bath, no time on my phone at least one hour before bed, and getting into bed at the same time every night to read for at least 30 minutes. 

My morning routine is equally important; trying and failing to get up at the same time every day, taking the mood stabilisers and antidepressants that enable me to be myself, writing in my journal, meditating for ten minutes, eating breakfast, and doing yoga. 

Grief rearranged my life the same way that active bipolar disorder does. I have to force myself to do things that I know are crucial to my self-care. They feel impossible, despite the fact I have completed them many times before. 

I will continue to take it one day at a time, knowing that my life will adjust to accommodate my grief. I also know that if my grief does trigger a bipolar episode I have the tools to cope with and recover from that as well.

Everything I Thought I Understood About Grief Was Wrong

My dad died last April and everything I thought I understood about grief has proven wrong. I have lost relatives and friends, but nothing prepared me for the realisation that I will never hear his voice again. Yet, losing a parent is the natural order of things because the alternative is the unbearable situation of a parent losing their child.

In The Year of Magical Thinking, Joan Didion wrote “Grief turns out to be a place none of us know until we reach it. We anticipate (we know) that someone close to us could die, but we do not look beyond the few days or weeks that immediately follow such an imagined death.” In the days following my dad’s death, I found myself asking my siblings if they were OK even though I struggle to answer that question when people ask me. Years of conditioning have made it my default along with “I’m sorry for your loss.”

The early days are structured; people need to be informed and a funeral must be arranged. Ritual, whether religious or not, has a rhythm to it. A way of ensuring we do what needs to be done.

The Stories They Told

I think of them often. The people who told me their stories. Mainly women, but also men. 

Their experiences of miscarriage and stillbirth at a time when Irish society didn’t do much to recognise either. If they were told anything at all, it was simply to go home and work on having another baby. Because producing children was clearly their most important job. 

Their experiences with mother and baby ‘homes’ and magdalene laundries. These particular stories came from men more often than women. Men who had been born in mother and baby ‘homes’, ending up in orphanages and industrial schools as a result. They were resolute in their support of women having every choice available to them when facing a pregnancy. 

Their experiences of travelling for a termination. Often without telling anyone close to them. Often they hadn’t spoken about their abortion in years but felt compelled to share it with us because they were tired of pretending it hadn’t happened. Tired of pretending that Ireland did not turn its back on them by insisting they leave the country to access reproductive healthcare. 

Their experiences of seeing friends, family members or colleagues deal with a diagnosis of fatal foetal anomaly and the agonising decisions that awaited them. They still could not comprehend that the Eighth Amendment meant their loved ones could not be given all the help or services they needed. They assumed cases like these were exempt from our abortion laws. They were angered when they realised they weren’t. How could anyone support putting women through that, they wondered. 

Their experiences of doctors not taking their decisions about not wanting to have children or any more children seriously. That those doctors refused to carry out the tubal ligations they requested because they might change their minds. Or because their non-existent male partner deserved the right to have children in the future. 

Their experiences of not being able to travel for an abortion. Of not having the money they needed. Of not knowing travelling was an option they had. 

Their experiences of complications during pregnancy and childbirth, which meant the right to make decisions were taken out of their hands. Their right to informed consent or refusal of care no longer applied as doctors worked under the Eighth Amendment. 

Men telling me about their wives experiences and how they desperately wished they could change them. They couldn’t. But they could help ensure that other women in similar circumstances received better care. 

Their experiences of being made to feel like their experiences were not valid or were just plain wrong because of everything they have heard from the anti-choice side and anti-abortion politicians. 

I think of them often. I wonder how they are doing. I wonder whether the overwhelming Yes vote helped them feel slightly less alone. 

I wonder whether they know that we stand with them. I wonder whether they know that we desperately wish things could have been better for them. I wonder whether they have been able to begin the work of healing. 

I think of them often and I feel honoured that they felt comfortable telling such personal stories to a stranger in the street or on their doorstep. 

Most of all, I hope that sharing their stories lightened their load a little bit, even if only for the moments in which we spoke.

On Realising I Am Bisexual

I never questioned my sexuality growing up. I didn’t struggle to figure myself out. I was gay until I wasn’t. My late 20s had a different idea. A confusing idea. An idea that left me feeling lost and alone. Uncertainty followed by the realisation that my queerness evolved to include men.

This revelation didn’t come without a price and that price was me having said and done some things that were incredibly biphobic. I may not have realised it, but that doesn’t excuse my actions or the now deleted words I wrote about how I thought it was possible for a lesbian to sleep with men and still consider herself a lesbian. This mess of words made sense to me, in a trying to figure out my sexuality way, but they were hurtful and disrespectful to both bisexual and gay women because their sexualities are not the same.

Channelling The Things I Know, But Don't Yet Feel

“Maybe now it will actually begin to feel real. We actually did it.” I type, not for the first time. Clicking “send tweet” as the tears begin to fall. Opening Facebook, I type a similar message. The Kerry for Choice WhatsApp group is next, followed by an expletive laden text to P. My phone is buzzing so much it scares Arwen (the dog).

President Higgins signed the Thirty-Sixth Amendment of the Constitution Bill into law. The Eighth Amendment has officially been Repealed. Yet, the joy I expect isn’t there. Relief and exhaustion are all I have. They are all I’ve had since May 25th.  

*

Shuffling isn’t my strong suit, so I split the deck in three and restack. Repeat this twice more and it’s time to draw a card. Grabbing my journal, I sit cross-legged on the floor and write the first thing that comes to mind upon the seeing what the Tarot has in store. The Nine of Wands is a recurring card. Courage. Persistence. Resilience.

Feet now planted firmly on the mat, waking my body up. Acknowledging that my body is capable of movement. It may not work like other bodies do, but it is pretty good at getting me through pain flares even though it insists on causing them in the first place.

Deep breath in. Deep breath out. Deep breath in. Deep breath out. Deep breath in. Deep breath out.

Yoga for the body. Meditation for the mind. Tarot for channelling what I know, but don’t yet feel.

Morning ritual.

Eat.

Breathe.

Canvass.

Bathe.

Sleep.

Rinse.

Repeat.

*

My phone beeps. The messages flashing on screen as I reach to silence it. “There is nothing Catholic about supporting abortion and anyone who says differently is going to hell for murder.” reads the mildest of them, although it is accompanied by a graphic and deliberately misleading photo of an aborted foetus. I’m a few comments into my deleting spree before I realise this is my personal inbox, not the public Kerry for Choice page.

A letter in the Kerryman headlined “Catholic teaching allows us apply conscience on abortion” sent anti-choicers into overdrive. Realising they are being banned and their comments deleted, the Irish contingent pass the baton to the American contingent. Meeting the same reaction, the Americans decide to seek out my personal profile in order to spew their bile. That the letter isn’t mine doesn’t stop them.

I’m not difficult to find. Being a spokesperson for a rural pro-choice group means I’m the first name that appears when you search for Kerry for Choice. That doesn’t make the deluge of messages any less scary. I change my privacy settings, put my phone away and my game face on. There are doors to knock on.

Hands shaking and heart racing, I try to steady myself as my canvassing crew ask what is wrong. I look like I’m about to pass out.

*

I’m sat cross-legged and writing. The grass beneath my bare feet. It’s dusk; that time of evening where anything could happen, full of endless possibilities and hopes for good things yet to come.

Words scrawled across the page in handwriting only I can decipher. Lists full of meaning. Releasing fears that do not serve me. Invoking emotions and experiences that will counteract burnout, allowing me to continue doing the work that has consumed me for so long.

Deep breath in. Deep breath out. Deep breath in. Deep breath out. Deep breath in. Deep breath out.

Tearing out the page, I strike a match and watch my intentions burn. Reciting “I intend that these things will fuel me to be of better service. To be more present.” three times, I rub my hands together washing my fears away.

Grounding myself.

Reconnecting.

Channelling the things I know, but still don’t feel.

Cathartic.

Restorative.

Energising.

Self-care.

Ritual.

*

We won Kilgarvan (Healy-Rae territory), that’s how much we won Kerry. It may not feel real, but it is. We changed the constitution. Now we must legislate.

Because that’s it, isn’t it? Our work doesn’t end with Repeal. It never will. We campaigned. We won. Yet, the fight goes on. Ensuring politicians do their jobs. Pushing back against whatever the anti-choice campaign is planning. Supporting our friends in Northern Ireland in their call for the decriminalisation of abortion.

When I put it like that, relief and exhaustion doesn’t seem so strange a reaction.

On leaving the city

“You left Dublin? That must have been some change for you?”

“Yeah, it took a while to get used to. I miss footpaths, street lights and living within the delivery zone of takeaways.”

I focus on the practical things because I’m afraid to admit the truth; it didn’t take me long to adapt to living in the country and, apart from friends and family, there is little about the city that feels like home. It stopped feeling like home while I was living there.

*

I spend my last Saturday living in Dublin wandering around Temple Bar with a friend. Because, hello, walking cliché! Between the food market, The Gutter Bookshop and the Cow’s Lane Designer Market there is enough to occupy us for more than a few sun-soaked hours.

Time spent with friends – check. Really good coffee – check. Books – check. Yet, I’m wishing I was already gone.

*

I don’t visit often. When I do, it’s almost always a flying visit for a meeting, a protest, or a day-trip for Pride. Having a reason, a purpose, makes the overwhelm less, well, overwhelming.

Dublin is the place I got sick. It’s where I questioned my sexuality. It’s where I fucked up. And then fucked up some more. It’s where I realised you cannot change things after they have happened, you can only control how you respond to those things. Life is not always fixable.

My mental illness isn’t the fault of the city, yet, somehow, I hold it against it. Like it fell short of the ideal we’re taught about home always being a safe space, when “safe space” doesn’t mean without complications. That’s not how any of this works.

It’s also where I fell in love with and married Paul.

*

Here’s the thing, or more accurately one of the things, about mental illness; it warps your thinking about most things. Difficult to remember when you’re going through it and doing the work of recovering doesn’t end the negative associations you made when your mind was conspiring against you.

Home is more than a house. It’s more than a place. It’s people, yes. But home can’t be other people until you put yourself first. Sometimes mental illness complicates that, even when things are good.

Why I am a feminist

I haven’t always been a feminist. I don’t think I mean that in the ‘I’m not a feminist, but [insert feminist belief here]’ way. Yes, people called me a feminist long before I called myself one but they didn’t know the reason I knew the word ‘feminist’ didn’t apply to me. I haven’t always been a feminist because I haven’t always been pro-choice.

I’ve written about how I went from being pro-life to becoming a pro-choice activist. What I didn’t mention because I didn’t know how to explore it properly, is that I knew instinctively that I couldn’t be pro-life and a feminist. Whatever else I thought about making the world a more equal place for women and girls something in the back of my mind kept saying, ‘how does this tie in with your views on abortion?’ I never said my thought process made sense, but listening to and learning from other people helped me realise that my beliefs didn’t work as a cohesive system. Contradiction and ill-thought out were my middle names.

At its most basic level feminism is the belief that “men and women should have equal rights and opportunities.” In reality this means addressing political, economic and social structures to ensure that women and girls have the same rights and opportunities as men and boys.

Sounds easy, right? If only it were so. So, you’re a feminist. You are, right? Good. What are you doing to bring about the changes that mean women and girls will have the same rights and opportunities as men and boys? What are you doing to smash the patriarchy? Saying you’re a feminist doesn’t seem so easy now, does it? Saying you’re a feminist comes with the knowledge that you should be doing something about the political, economic and social structures that mean women and girls are seen as less than. Feminism is about more than catchy slogans on clothes, it’s about action.

Back to me being a mass of contradictions. I used to think being fiscally conservative and socially liberal was a realistic approach to life. Yes, I know how naive that makes me sound. I was a member of Fine Gael (for those not in Ireland, Fine Gael are a centre right politic party), but as has become a theme of this essay and, well, my life; listening to others helped me realise that once again my thought process wasn’t holding up to scrutiny.

Changing the economic and social structures that lead to inequality takes money. Investment in education and healthcare that is accessible to all isn’t going to happen without taxes being diverted to these areas or government enforced regulation, or both. Ending the cycle of poverty cannot be done under a tax system that negatively and disproportionally impacts those who don’t have a lot to begin with.

Kimberlé Crenshaw, an American professor of law and a critical race theorist, coined the term intersectionality. In her paper ‘Demarginalising the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine and Feminist Theory, And Antiracist Politics’, Crenshaw spoke about the intersections of race and gender. Namely that Black women’s experience of gender inequality cannot be disconnected from their experience of racism.

While Crenshaw’s focus is rightfully on the intersection of gender inequality and race, later works define intersectionality as “the view that women experience oppression in varying configurations and in varying degree of intensity. Cultural patterns of oppression are not only interrelated, but are bound together and influenced by the intersectional systems of society. Examples of this include race, gender, class, ability, and ethnicity.” Crenshaw has also spoken about intersectionality as a broader concept.

I’m a woman, so experiencing sexism is a common occurrence. I am white and cisgender, which means racism and transmisogyny are things I will never personally experience. I’m bisexual, but I’m married to a cisgender man who is straight. Some people see this as ‘passing privilege’, while others see ‘passing privilege’ as bi erasure. Yes, I can be romantic with my partner in public without fearing verbal or physical violence but the assumption that I am straight is based on the fact that we live in a heteronormative society. I’m working class and have multiple chronic illnesses, including bipolar disorder. All of this shapes the way I interact with the world and how the world interacts with me. Intersectionality means taking these things into account. For me this means understanding my privilege in some areas while acknowledging my lack of privilege in others.

Feminism isn’t supposed to make you comfortable. It’s supposed to make you question things. It’s supposed to make you learn. These things often come after you’ve been called out for something problematic you’ve said or done, but these lessons can help you grow and become a better feminist. And better feminism is something we should all strive for.

Love + Risotto

In sickness and in health; five words which seem obvious until they’re put to the test. This isn’t what either of us signed up for, except it kind of is. Who knew what would face us? That bipolar disorder was waiting in the wings, desperately trying to turn my mind into a battlefield neither of us is equipped to deal with.

*

My appetite deserting me is the first sign this funk might be more than a funk. The first sign for me anyway. Paul already knows this is serious. My insistence that chocolate and crisps are enough to live on only confirms things.

I’m craving sugar and nothing else. I’m in a funk, so I indulge my body which simply means it wants more. Not my smartest move.

We make a deal, Paul and me, for every day I’m depressed he will cook risotto for my dinner. It’s my favourite meal; it’s the culinary equivalent of a comforting hug.

*

We fall into a routine. He cooks, while I worry about how spaced out my new antidepressant makes me. He cooks, while I stare at the TV not really taking anything in but unable to turn it off. He cooks, while I just exist. When we said in sickness and in health, this wasn’t how I pictured it.

*

While he removes the smoked rashers from the oven and cuts the feta cheese, I’m tasked with stirring the risotto. I must keep stirring. We must not let it burn. I’ve mastered this figure of eight stirring motion. Well I say mastered, it’s hardly rocket science. It is, however, strangely hypnotic and incredibly soothing. I must keep stirring. We must not let it burn.

There are days when those five or so minutes are the most productive I’ll be. These are the days I feel worth something because these are the days I contribute. A thing needs doing and I help get that thing done. These are the days that make the rest of the time frustrating yet slightly easier to navigate.

*

Knowing, on some level, things won’t always be this difficult and really feeling it are often worlds apart. So I stir risotto for a moment because we must not let it burn.

As my mind and body adjust to an ever expanding array of medication, it helps to know there is someone in my corner. That someone cares for me, when I can’t care for myself, especially when I’m incapable of looking after myself. Maybe love can shine through and that’s worth remembering.

When all else fails, keep stirring and you won’t let it burn.

What Being Diagnosed With Bipolar Disorder Taught Me About Myself

I was diagnosed with bipolar disorder in early 2016 and it terrified me. It was the least unexpected diagnosis I’ve ever received, but that didn’t make it any easier. Bipolar II Disorder, the words hung over me like a label I would never be able to shake.

Bipolar disorder was something that happened to other people, not to me. Yet, here I was. Sitting in a psychiatrist’s office with an explanation for what was going on in my head. It was an answer that came with supports, including medication, to help me feel better. That should have meant the world to me, right? On one level it did, but there was also this voice in the back of my mind telling me not to talk about.

I was scared. Scared and questioning everything. I didn’t want to be bipolar. Does anyone? But I am not my illness. I have bipolar disorder, but I am not bipolar. This approach doesn’t work for everyone, but in the early days it enabled me to put one foot in front of the other. This distinction, although it looks semantic to some, allowed me to let go of my internalised stigma.

Grief

Grief is a strange thing. It can sneak up on you, even after time has passed. Sometimes out of the blue, sometimes you know the reason. Today is my nanny’s twentieth anniversary. I knew I would feel it, but I wasn’t prepared for the amount of sadness and loss that hit me yesterday. I miss her. I know I’m not the only one who does. This makes it a little easier, but doesn’t change the sense of loss.

*

There is a song, the name of which escapes me, which contains the line “Got to let go”. I misheard it as “Galileo”. It pops up on the radio every so often and as I laugh I think of my nanny. The song was released after her death, so she’s never heard it. It’s my misheard song lyric that reminds me of her.

She once thought Cliff Richard was singing about a “spastic cat” and wondered why 4 Non Blondes were “trying to get up the great big hill of Howth”. So, you can see where I get it from.

*

I check my phone, like I do most mornings, and find myself saying, “No, no, no…” as I scroll through Twitter. But this isn’t a hoax and David Bowie is dead. I barely manage to tell Paul before I begin to cry.

Seeing social media flood with Bowie’s music is comforting. It helps to know other people miss him too.

*

Growing up, Christmas meant the Stephen’s Day party in my nanny’s house. To this day I know the lyrics to more songs than I care to mention as a result of my aunts and uncles. Name an Eagles song and I can sing it. I’m not recommending you actually ask me to sing, I didn’t inherit my Dad’s voice.

*

Glenn Frey’s death hit me harder than I thought it would. I wonder if I’m overreacting, but realise that when someone’s music plays a huge part in your life it’s OK to mourn them. It’s a grief of sorts and it’s understandable. It is not the same as losing a loved one, but that doesn’t make it less valid.

*

I am sitting in her kitchen eating strawberries. She turns to my Dad and says, “Will you take the washing in before it rains?” While he is out in the back garden she laughs and says to me and my brother, “Go on, you can dip the strawberries in sugar. He won’t know.”

That’s her sugar bowl in the photo above. I’ve kept it all these years. It’s an inanimate object, but it means the world to me. It’s like having a little piece of her close by.

*

It’s the early hours of the morning and I can’t sleep, so like any sensible person I check my phone. I’m saying “No, no, no…” again as I see tweet after tweet say Leonard Cohen has died. Not again, 2016. You’ve taken enough from us. We can’t take much more.

I open YouTube and search for Leonard performing ‘I’m Your Man’. When I’ve finished listening, I tweet a link to the video. Once again, my timeline is wall to wall musical genius. Once again, it is comforting.

I remember this gorgeous blog post, by Derek Flynn, about Leonard Cohen’s skill as a songwriter and get teary-eyed while reading it.

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Twenty years is a long time, but it is also no time at all. A lot happens, but memories don’t fade and people aren’t forgotten.

I didn’t know her for nearly long enough, but I was lucky to have her in my life. There are still times when I ask “What would skinny nanny do?” when I’m trying to figure something out. It’s comforting to think her no-nonsense, yet non-judgemental presence is still around even though she’s not. Would she be proud of me? I hope so.

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Last night I ran myself a bath, put on some music and cried. My plan for tonight is the same, this time to a soundtrack of Leonard Cohen. Because sometimes the best thing you can do for yourself is allow the tears to fall.