A Sense of Pride

I wrote this piece for the MS Ireland MS and Me blog. This is Pride month and next Saturday, 30th June, there will be a massive Pride parade in Dublin.

This article puts two important aspects of my life together and I wondered how to do it. What is pride about? Is it about identity? Is it about confidence? Then I stopped wondering. This story is about when I stopped pretending I was someone I wasn’t and began to be who I was meant to be. Twice. As uncomfortable as it was at the start, there could not be any other way.

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I ‘came out’ as gay to my family in my teens. It was a surprise to some, it confirmed for others what they always thought (my affinity for Doris Day movies was NOT for the Cary Grant cameo and yes, I was infatuated with Steffi Graf) and other people I lost contact with. Little did I realise that my ‘coming out’ would help me later on in life when I was diagnosed with MS. I’d walked the fear-paved path before, disconnected from my family and friends. Some of the disconnection was all mine as I struggled to find the words for what I was going through. I took myself away to the city, looked for people like me, built connections with other souls and gradually came home in myself. But when I returned, the greatest surprise was the welcome, the embrace from my family and friends when I did reveal my glorious self.

When I was first diagnosed with MS, the questions rose again. Who do I tell? How will they react? What will they say? When do I tell them? How will I tell them? What do I say when they react to me? Where are the other {young}people with MS? All the questions I had coming out built a resilience I never appreciated until I had to tap into it, again.

In the past, I’ve said that disclosing I have MS to people is like coming out. Yes, in that I’m making myself vulnerable and telling someone something about myself that is different to the typical human experience. And no because I’ve learned the hard way that difference is something humans notice and being noticed can be dangerous. Thankfully, it is here that the power of community and patient empowerment has made all the difference; despite the danger I wouldn’t have it any other way.

I couldn’t find other young people with MS to talk to when I was first diagnosed so I set up a Meetup group. Since 2010 we have been meeting monthly in the IFI Cafe in Dublin, every time creating a safe space for people newly diagnosed (6 weeks was the newest person) and the more long-time MSers can get together and talk. There is no obligation, the only expectation is that you be yourself and allow others the same respect.

This for me is what pride is about- celebrating my unique human experience while allowing others to do the same. As patient pride/patient empowerment progresses and the other stakeholders move over to allow the patient at the table, the situation for people with MS is improving. But we must remind ourselves of the person with MS who today is in an inadequate healthcare facility or to the person unable to access counseling or to the newly diagnosed person shuffled out of a clinic with just leaflets to hold onto. Visibility is important not just for ourselves but for the people struggling with life with MS, those who will be diagnosed with MS and for better public understanding of this traumatic condition. Being visible isn’t for everyone, we know it is dangerous, but for those who do choose to join the Movement, there are a whole lot of us waiting for you.

The Dublin MS Meetup Group has more than 200 people with MS as members, meets every month in an accessible location in Dublin city centre and welcomes newbies. Join up here: Dublin MS Meetup. 

Thanks to MS Ireland for giving me a platform to write about living with MS. Please share widely, I want people with MS who are struggling to know that there is a community waiting for them.

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EMSP Bratislava 2018

It’s a still, quiet morning in Bratislava airport after the action-packed #EMSP2018 Conference.

Since Stuttgart 2010, I’ve been involved with a dynamic community of people from across Europe.

I fly back to Ireland with memories of great learning opportunities &, most importantly, time with friends. I’m am proud of being part of a great community & celebrate our achievements since 2010. More young people, making a point of including people from Black, minority & ethnic communities and continuing to do our very best for people with MS across Europe.

It’s never too late (Pt 2)

Recently I wrote a post where I talked about being too late or missing out on life (You’re too late/old/Msey). A major fear of mine is that it’s too late for me to make anything ‘brilliant’ with my life, no standout invention nor ‘keynote speaker’ nor ‘influencer’ (this is actually a career option) included in my Twitter/Instagram handle and no millions in the bank (yet).

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On Thursday I visited a dear friend (let’s call her Dorothy to maintain her anonymity). A few years ago I met in Dorothy in St. Andrew’s Malahide Church. I joined her pew and we struck up a conversation. Since then, we’ve spent hours chatting about family, health, nursing (she’s a former midwife), developed a strong bond and she’s someone I can be myself with. When our daughter was born, Dorothy made a beautiful crocheted blanket, knitted cardigans and all sorts of beautiful pieces for her. Through the years, Smallie has been gifted funky jumpers, hats and pieces all made by Dorothy’s artistic hands.

This sunny day, Dorothy and I were sitting at the kitchen table catching up over a cup of tea. Unfortunately Dorothy’s health hasn’t been so good lately and there’s been a lot going on in my life that we HAD to chat about! My daughter’s birthday had just passed in recent weeks and there was a card on the mantelpiece for her. I was bemoaning turning forty this year when Dorothy, who is now close to her 90th year said “I’d do anything to be forty again”.

It stopped me in my tracks.

There’s so much possibility in each and every day to savour. When I moan, feel sorry for myself or my situation or my worries or my WHATEVER, I’m missing out on what IS. And what IS, is a life-source that will never be here again. Am I going to waste it focusing on what I perceive to be lacking? Or can I finally accept that my life, in it’s humble, brilliant, manifestation, is a stupendous success? With friends like Dorothy, my life is rich beyond measure and every new dawn, a glorious reminder.

I wish you all a friend like Dorothy.

 

 

Together for Yes

The darkest hours are just before the dawn.

To the heroes that have poured out their souls, TDs & Senators standing firm, medical truth-tellers & the Repealers canvassing, you’re beyond brilliant.

I’ve never had such authentic, open conversations with people, friends and family and complete strangers. We’ve been ridiculously vulnerable, bluntly honest and frighteningly resilient.

Sleep well, tomorrow changes everything.

#TogetherforYes

MS Quest: You’re too late/old/sick for that sort of thing

Time is pushing on. As I wander to another day at the office, is it too late? Too late to do that one thing I’ve always wanted to do or be or enjoy? Too late to do anything about it? Too old? Too stuck in my ways? Too limited? Too… MS’ey???

words-2971129_1920 The feeling of missing out, of being in the wrong place at the wrong time or the right place at the wrong time or the wrong person at the wrong time… are familiar to me. There have been times in my life when I’ve desperately wanted to be anywhereelse, to be someoneelse.

Of late, I find peace but I don’t think I have a ‘settled soul’. Not that that’s always a bad thing; it’s spurred me on to discover more about the mystery of staying well and thriving while being told I’m ill. I’ve been on a quest for peace of mind, for feeling good, for emotional joy, for being present, for serenity.

My quest has meant hours of reading nonsense- cleverly disguised as personal development/medical advice/*insert catchy phrase here* – only to throw books at a wall once I came across the author’s declaration on THE one magic pill to cure all ills. Along the way I’ve also stumbled across gems, clarity in the morass of advice, advances and chancers.

These gems are the people who tell me what works for them, experiences without promising the Earth. It is these people that encourage me to take the steps and go the way I never thought I wanted to go. But go I must. Because life never goes smoothly, does not go easy and is not a bed of roses. There are events I’d much prefer not to have experienced, things that have distorted my way of thinking and impacted who I am, where I go and what I do. So what? I’ve got stamina and I won’t give up.

MS- and the sickness and the disability and the label and the inconvenience- is one of the things I often throw against the wall. It’s INFURIATING, messes with my sense of self and pushed me down a path that I didn’t think I would be taking. But it’s here I’ve met the likes of Judy Graham, Jon Kabat Zinn, George Jelinek, Mel Robbins, Aminatou Sow, Ann Friedman, and other famous folks that have made my life richer. Despite the circumstances of our meeting, I can’t change what lead me to them even though I’ve wanted to, so badly. Today, I’ll focus on the treasure I’ve accidentally stumbled across during my quest.

MS 11: Inside I’m Screaming

This is a shout-out to the shaken, the damaged, the torn, the afflicted, the put-upon, messed-up, tortured soul that sat in Mullingar hospital 11 years ago absolutely FULL OF FEAR.

I’d been told I had multiple sclerosis. Inside I’m screaming. Afraid of what was, what might be and what the heck do I tell my Mum & Dad? My friends? Who do I call first?? And when can I get back to work? Can I work?? What IS multiple sclerosis? How do I pronounce it?

I wanted to take a moment today, 14th May 2018, and thank all of you. There are some very special folks who’ve shared decades of my life, who’ve been my friend for almost 75% of my lifespan and who I was fortunate to meet in my formative (aka deeply addicted to hockey, drama & general teenage angst) years at Wilson’s Hospital School. My brothers and sister, who are always ready and willing to be the coolest siblings ever. The Rogan clan, the cousins and aunts and uncles and extended family.

Others I’ve not known so long, met at work, university, at an event, at a class, on a bus from UCD to Dublin City or when I lived in one of myriad of places during my itinerant years or at some LGBT festival. You’ve been kind, generous, loving and nourished my life beyond anything I could have hoped 11 years ago.

No doubt there have been really really awful days, moments when the symptoms of MS, the trauma of diagnosis, the messed up impact of chronic illness has almost consumed me. They pass. I have a renewed sense of awe for the life I have & the opportunities that abound.

As I write this I’m in a safe, warm and cosy home with a loving family. Not only is this a most perfect day, it’s a day I never thought I’d live to enjoy. Thank you everyone for being part of my life and for giving me reason to live. My MS 11 is as good a reason as any to stop, look around and celebrate another year in my life. Thank you.

 

When ACEs High is not a good thing

This is a brilliant talk from Dr. Nadine Burke Harris. She talks about The Adverse Childhood Experiences Study (ACE). Are ACEs  the greatest unaddressed public health threat facing the world?

“We understand how early exposure to adversity affects the developing bodies and brains of of children”

More than 17,000 adults took part in the original Adverse Childhood Experiences Study at Kaiser Permanente from 1995 to 1997.

“ACEs are common. Almost two-thirds of study participants reported at least one ACE, and more than one in five reported three or more ACEs.

The ACE score, a total sum of the different categories of ACEs reported by participants, is used to assess cumulative childhood stress. Study findings repeatedly reveal a graded dose-response relationship between ACEs and negative health and well-being outcomes across the life course.

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Image from the website of the CDC

Being exposed to trauma and toxic stress everyday in childhood messes with the brain-body stress response system. It impacts the development of so many body responses.

“When the number of ACEs increases so does the risk for the following:

  • Alcoholism and alcohol abuse
  • Chronic obstructive pulmonary disease
  • Depression
  • Fetal death
  • Health-related quality of life
  • Illicit drug use
  • Ischemic heart disease
  • Liver disease
  • Poor work performance
  • Financial stress
  • Risk for intimate partner violence”

Here’s a list of the conditions and diseases that are related to high ACEs scores. This is a topic I’ll be returning to in the coming months.

MS & Lent: A good reason to get quiet

In my school days I got involved in the Christian Union, a group of young Christians in my school. I got seriously into my Bible and all things God-dy. Every morning, before the everyone else in the school was awake and the bustle of hundreds of other children echoed through the drafty old building, I’d sit on the stairs doing Bible study.

When considering this piece on Lent, I thought back to those days, reading about the forty days and forty nights Jesus spent in the desert and trying to figure out what was it all about? To be honest, I was a little jealous that Jesus had ALL that time to himself

When I was reflecting on his story, I thought about being in a place without the company of others, without basic necessities among thorny prickly plants? For three days and night, during a trip India, myself and a friend went on camel safari in the Thar Desert. Scorching in the day the sun beat down on us and freezing in the night, we got tucked up in our sleeping mats and lay under the vast, star-filled sky. And it was a uniquely lonely sensation.

But for people with MS there are always reminders of a desolate place- I’ve never been SO alone than on the days and months after my MS diagnosis. The uncertainty, the devastation, the morbid thoughts of a life un-lived and then there was all the choices I had NO clue how to make. MS is my barren desert and that desert represents to me what life is like in the first few months and even years of life with MS. But I eventually walked out of that desert. There are still some thorny parts of me and one of them is distraction from myself.

I’m prone to sitting surrounded by books, gleefully sitting alone for hours, absorbed or turning on the radio first thing to get a dose of politics or sitting scrolling, scrolling, scrolling through my Twitter feed. Distraction and denial of what was going on in my ‘real’ life. My phone is always with me, I’m rarely uncontactable and there’s always a source of information (wanted or otherwise), close by. This is really useful for us if we want to be distracted from what really matters and I’ve been distracted from what really matters.

In my early life, I learned that Lent was a time to give things up (chocolate, sweets, my Granny’s butterfly buns!) but also a time to make some new habits like being kinder to my siblings or being more helpful. The habit of sitting in the quiet of the early morning is something I’ve returned to in recent years. The habit isn’t easy but the simple process has subtly helped me deal with issues in healthier ways. It helps me deal with vagaries of MS, the depression, the fatigue, the balance issues, the cognitive issues. There have been times when my belief system has been wrung out, left to crisp up in the pounding noise of MRI scanner or when my dignity flowed down the leg of my trousers as my damaged/very sensitive bladder emptied before I could even pretend to be near the facilities.
I protect my mornings because it is in this sacred space I connect with my inner strength and power. No matter what is going on in the day, how bad my MS is playing up, when things get too much, I can tap into that peace and strength. The morning time I spend on my own, meditating, reflecting on a piece of writing, has given me greater understanding of myself. I think this is where this Lent thing started. Someone had a great idea to get away from it all, to find peace and to listen to their inner power. For the next forty days, I’ll go with doing something every day that makes my or someone else life, a little bit better and connects me to my own inner power.

©Emma Rogan 2018

This piece was first published on the MS Ireland, ‘MS and Me’ community blog on 14th February 2018.

Altered Lives: Diagnosed with MS

This is part pf the Altered Lives campaign by the Neurological Alliance of Ireland (NAI). Here I am having a chat about what being diagnosed with meant to me.  Akin to Dorothy, it was a complete life-changing, mind-altering event. After the whirlwind, things are much better now but I learn something new about myself everyday. I’m staying interested and take it easy.

From online support to Face to face 

The current situation for young people with MS in the early 20s or under-18, is urgent. 

We know this is a formative stage of life, I know that support post-diagnosis has the potential to impact positively or negatively, the next 50-70 years of life. When diagnosed we’re are presented with awful news. It is how we deal with it, the support we get and the expectations from those around us that will influence our choices and how great our life will be. As the good folks at ShiftMS say, MS doesn’t mean giving up on your ambitions, just reimagining how to achieve them.
Dublin MS Meetup Group

I started the group in March 2010; I wanted to connect with other people with MS, particularly those who were of similar age/life stage as I am. From day-to-day management, diet, fatigue, medication, medical professionals, relationships, coping strategies, treatment information…we talk about all of this and none of it too. Essentially, it is about meeting other people, making friends, sharing experiences and building relationships of solidarity with people who understand what we might be going through without having to explain every little thing about our MS.

Monthly Meetings

The group meets every month in the IFI Cinema in Temple Bar, Dublin, on Saturdays around noon. There’s a Meetup page for the group (http://www.meetup.com/Dublin-Multiple-Sclerosis-Group/. People sign up to it and see the details about the dates and times of Meetups, make suggestions and share information. We alternate in terms of those who host the meetup.

I’m shy! Meeter Greeter for newbies

An important aspect of the group is the Meeter Greeter- someone to meet before the general gathering. This makes it easier in terms of feeling welcome and getting to know people.

Facilitation

Usually I facilitate the group (in as much as a group of adults need) and we are very mindful of the need to ensure it’s a safe space for people to express themselves, to be heard and to be listened to. It is also a place to enjoy the banter and the company of others!

Get online and connect

Shift.ms is an online forum for people with MS and is particularly aimed at young people. I have searched and there are a number of people under 18 on the site that I would encourage young people with paediatric MS to connect with.

Connecting with other people is a great way to discover and replenish your lust of life in those early days post-diagnosis. 

© Emma Rogan 2017