Brain Awareness Week a.k.a. Awesome Brain Week

This is Brain Awareness Week or as I choose to call it, Awesome Brain Week.

Like your little toe, your brain isn’t something you think about (even though it is what allows you to think) regularly. Unless you are one of the many millions of Europeans and people worldwide with a brain condition.

awesomeImage from vapeaboutit.com

This week, to highlight the awesomeness of our brains (I know, I know.. but in this context the use is justified!), I’ll be posting facts, figures, images and other things here and on Twitter. Let’s have a think about how great that mass of lipids and cells in your head is and be grateful that you’re one works well enough to read and reply. I ask you to use it to raise awareness about the thousands of brain conditions that plight the lives of so many.

Starter for ten:

The brain of a newborn human contains the same amount of neurons as an adult (no matter how small minded you think your neighbour is, he/she has the same brain size as you). Although, research into neuroplasticity suggest the human brain has great capacity to repair, rebuild and grow even into late adulthood so brain sizes can vary.

What about you? Any interesting brain facts you want to share or experiences you think others should know about? Add your comment and join the conversation on Twitter @emmadragonTwitter birdie

© Emma Rogan

Emma’s Discovery: Tweetchats

It’s all in a day’s work or in this case, evening work. Part of my job is talking to people with multiple sclerosis (MS), health care professionals and others about a range of topics from work to medication to the health services. And all the while, making it interesting and useful.

The European MS Platform held a chat on #MSWorkability* last week and it was a busy night facilitating, answering, engaging and listening.

Emma’s Discovery: Tweetchats

  • Publicity: Let people know but don’t leave too much time. Maximum one week’s notice. Use Graphics/images that show all the details, (time, date, logos, partners, facilitators, the hashtag).
  • Partners: Bring people with you. We worked with The Work Foundation and Shift.ms to highlight the project and to reach a broader audience.
  • Timing: Evening-time is outside of general work hours and if we’re to engage MSers/people at work (staying in the right work is our hope for everyone!)
  • Evening: 21:30CET worked very well for EMSP on the #MSWorkability chat in particular).
  • Questions: Have three/four questions per hour with a couple of backups for when/if the conversation slows.
  • Connection: Make sure your connection is fast and reloading to keep up with the exchanges. If you’ve let people know, expect people to engage.
  • FOMO: You don’t have to respond to every single tweet as conversations strike up without you as facilitator but you do need to stay on top of everything and have understanding of what direction discussions are going.
  • Authenticity inspires: people will use personal narratives that can be really personal. Acknowledge, respect and engage with a view to coming back to them later if they shared a very difficult experience.
  • Measure- Tweetreach is a very useful tool for a rough estimate and will help you understand where your words have landed (https://tweetreach.com/).
  • Follow-up- We have planned a Takeover for the start of Brain Awareness Week (12th & 13th March) which will allow us to follow up with people on the topics discussed. While the reach may have been large, it is the follow-up that will hold people’s attention and really build on the relationship.
  • It’s all we have! The time passes so enjoy the conversation.

Please tell me about your experiences because I know there are better ways to do a chat. There were times when I was snowed under and know there’s always room to improve.

*This is a mouth-full but the premise is that work (Workability, supporting people to stay in employment) would become a priority outcome of the clinical care of people with MS. We had a very good conversation with a whole range of issues coming up.

Me and My Pearl

This piece was first published on the MS Ireland, MS and Me blog.

Happiness is not the point, it is not the goal; it is a by-product of a multitude of actions. The daily irritants and toxic effects of life with MS can be turned into something phenomenal.

A pearl is a terrible beauty. When a tiny grain of sand (or other irritant) gets trapped inside the soft flesh of an oyster, irritating, itching or even poisoning the creature, the oyster gets even closer to the irritant. Not because it is a masochist but because there is work to do. Slowly, the oyster coats the sand in nacre, a shiny substance. Over the years, layer upon layer gets added, building the irritant into a beautiful, shimmering pearl. Today I’m going to tell you about my pearl.IMG_4462

What does a good day look like?      

I live beside the sea, a long stretch of soft sandy beach that curves around the coast giving the sharp rocks a gentle coating. My nights are short. Well, not so much short as long-and-interrupted as our new addition wakes and looks for cuddles. I’m usually up before 6 a.m, have the compulsory cup of tea, eat breakfast, shower, dress (all accoutrements, food and clothes I’ve left ready the night before) and take a few minutes to read from someone far wiser than I. This piece of prose I hold onto for the day.

It is dark when I leave the house and make my way to the train station towards work. Stepping out into the fresh, cold air and looking up to the stars I am Antaeus. My mind is clear, my body steady and strong- I am grounded. When I’ve prepared, given myself plenty of time to allow for eventualities (nappy change, leg not working, fatigue first thing), the time flows and me with it, a gentle stream of time. My workday is spent doing tasks, engaging with others, sharing laughter and deep conversations, contributing and being useful. Home time is the precious time with my partner, being a good listener, sharing ideas and in the minutes before bedtime I get to read stories of bears, play with colourful toys and show my little girl how joyful life is. This is a good day.

Makings of a Good Day

  • Being useful
  • Taking time in the morning to be still (sit with a cup of your favourite, meditate, read)
  • Eat the right food, take exercise (move whatever you can move)
  • Time with the people I like to be with, who give me joy
  • Don’t stay in the same space if it isn’t working for me
  • Holding on to my standards and values
  • What I do today will effect my tomorrow
  • Gratitude
  • Live in the present

Your Path

Here’s where my (and perhaps yours dear reader) perspective differs from the general public. I think about how my brain has scars but focus on the scans showing very little progression over the years. How my leg has grown stronger the more time I spend in the gym. How what I do today will effect what I can do tomorrow. I do my utmost to research, react and understand my grains of sand. For the last eight years I’ve covered my grains of sand in all the things that go towards making a good day. The mind can make a hell out of heaven and a heaven out of hell. I’ve travelled, read, learned, met new people, spoken with medical professionals, hippies (becoming a hippie), having lots of fun and learn every day that life is what it is.

                  When I wear pearls (artificial), touching them reminds me that no matter how hellish I feel or how bad I think my day is, it will change. To have a pearl on me is a gentle reminder that despite the grains of sand that buried me when I was diagnosed, I have taken them and turned them into things I can use, to inform and live a good life. To misquote Maya Angelou, I’m a phenomenal woman who daily turns grains of sand into magical pearls. This is a very good day to be alive.

© Emma Rogan 2016

Part 2: MS, Pregnancy and Fertility

Fertility and Pregnancy Part 2

One of my exes told me when we broke up that she pitied me- no-one would want to be with anyone with MS. For a long time, that got under my skin and I believed her as it fit with my sense of worth (pitiful) and there was no choice. Then I met Cathy and everything changed. We romanced, fell in love and started planning for a child. We did it the typical lesbian way- clinic, donor and with medical intervention. Last September, she got pregnant and we’ve had a roller-coaster of a year. It was a good pregnancy, healthy, not too much sickness and with so many happy times. The months passed with scans of the baby growing, consultant visits and the waiting… and waiting.

Then the 17th of May in the early hours of a quiet Sunday morning, our baby girl arrived. Cathy stayed in hospital for three nights, learning how to breastfeed, resting and getting to know the new arrival. I prepared our home, hardly sleeping as the two loves of my life slept in a hospital across town. On a bright sunny morning, I drove to the hospital. We nervously put Baby into her snow-suit, packed the car seat and drove them home.

Cathy would say pregnancy is easy. It is when baby comes home that you will never be prepared for. My friend described becoming a parent, having a new-born in the house, as the equivalent of throwing a grenade into a relationship. The explosions rip through what you thought you knew about yourself, your partner, your family and friends. Some relationships collapse, only to grow renewed and stronger, while others fall away never to be renewed. MS and children also collapse TIME; we’re forced to be present, to be in the moment, to mindfully breathe every breath. Time slows down and speeds up, all at once!

As the first two hellish weeks fade in my memory, as my brain stops hurting from all new pathways built during those first few months of intensive learning, I see how MS was put to the back of my mind. My concerns faded as the jobs that needed to be done, got done. In the months since I’ve learned how to change a nappy in record time, how to interpret a baby’s cry, make the meals that are super nutritious and quick (or pop to the local fast food restaurant in desperation for a meal!), do the housework, be mindful, take rest when I could and make it to my TRX/Kettle bell class whenever I can.

Last Christmas we had the Rogan Nativity play in my aunt Clare’s house. It’s our tradition, when we meet for food and drinks and all my cousins, aunts and uncles dress up as shepherds, angels, Mary and Joseph and baby Jesus and the donkey. We play our parts while someone reads the Nativity story from the Bible. At the end of the fun, we give thanks for being together, gratitude for family, the universe we live in and for the gifts we have. It is also an opportunity to share news. This year I decided to share my happy news about the pregnancy, only I got overwhelmed and upset. Eventually, I blurted out the news. There was stillness…then an eruption of laughing and cheering. Afterwards, one of my aunts hugged me and told me how happy she was. Because I had cried, she too cried. She thought that the MS was getting worse and I was about to tell them bad news….

Thalia is now four months old and we have great fun together with a joy like I’ve never known. Having a loving partner and becoming a parent has unfolded a life-long love letter to what is our precious existence. Finally, I see how choosing to leave a bad relationship allowed me to move on to something precious and true.

My pregnancy journey was from a partner’s perspective and I’d really like to know how it has been for you? Please comment or connect on Twitter @emmadragon

© Emma Rogan 2015

Part 1: MS, Pregnancy and Fertility

This blog was first published on the MS and Me blog from MS Ireland

Part 1 of 2

Did you ever dream of becoming an astronaut, a pilot, a parent, a dentist, a doctor, a diver or a Formula 1 driver? It was these fantastical, panicky thoughts that came rushing through on D-Day (Diagnosis Day). Illogical yet perfectly human – my mind was firing off in all directions with the news. A state of want, of loss, of abandonment came rushing in. Amongst the ‘what-might-be’’ was ‘what about children?’ even if they weren’t on my radar at the time

Many Irish people don’t go through a lot of thinking about how they’re going to have children; we move through adulthood, perhaps meeting someone, setting up home together and then children follow. But if children are not an option without assistance (gay/lesbian/low fertility) or there are issues, it is then we wake up. We learn about AMH, the sperm count, choosing a donor, counting cycles, the disappointment of missing a cycle, of getting your period, or the heart-break of miscarriage. Or not. Many people have decided they want to be child-free with others who just didn’t have the opportunity or it was never the right time.

The challenges: 

• If you’re on them, you’ll have to come off Disease Modifying Therapies (DMTs) and other medications in plenty of time before becoming pregnant. Do not use them when breast-feeding. Aubagio, Avonex, Betaseron, Copaxone, Fampyra, Gilenya , Novantrone, Plegridy, Rebif, Tecfidera or Tysabri are not safe in pregnancy. Talk to your neurologist.

• There is risk of foetal abnormality from drugs and medication. If you’re taking DMTs, use contraception if you are having sex.

• There may be some effects on sperm production and count from DMTs and other medications.

• If you’re considering fertility treatment, you need to learn all about the side effects and speak with your neurologist before you start. The ‘stims’ may have an effect on your immune system in ways you don’t realise; the last thing you want is a relapse when in the throes of the fertility journey.

• Other issues for women include muscle weakening of the pelvic area and/or loss of mobility or function, all things that can exacerbate bladder and bowel problems during pregnancy (but are a normal part of being pregnant because of the growing foetus).

For anyone considering having a child or adding more to your family, talk about fertility with your partner, your friends who have MS and children and family. Have your fertility tested; with knowledge you can make informed choices and make decisions based on what’s best for you as well as your partner and your family. Woman or man, do the right things by your body (exercise, a good diet, healthy relationship) and you’ll be giving yourself the best chance at enjoying your own life while trying to create a new one.

The great news is there is absolutely no evidence that a woman’s fertility is affected by MS but there is lots of evidence that confirms pregnancy can be a very good, normal experience. Many women discover the positive biochemical effects of pregnancy (the immune system is suppressed to allow for the foetus to grow inside her body, the increase in good-feeling naturally boosted corticosteroids) and the other natural boosts from the changes in her body means the majority of women with MS have a normal pregnancy. But if there is a lot of disease activity or  if there is loss of function, decisions need more time and planning.

Although the issues are the same for MSers as for other pregnant women keep in mind the additional aspects of having MS. There is a risk of relapses after the birth – as the immune system comes back to normal but there is no evidence that there is long-term disability because of pregnancy. As with the relapse rates, the life-changes that come with having a new-born in our lives is something we can never be prepared for. BUT do build your support networks, have people prepped and ask for help when you need it.

© Emma Rogan 2015

{MS} Whip-cracking Away! 

Did you ever get bad news? Do you remember the few moments when you saw the face of the person who was about to tell you something you didn’t want to hear? Did they stumble/mumble or were they clear as a bell as they rang your reminder of your own mortality? No? Great. Please don’t read on. 

  But if you have had that concrete stomach feeling, if your self-esteem has taken a blow like it’s like nothing ever before you might understand what I’m going to talk about. Being diagnosed with a chronic illness is a blow to our core, to our identity. What we think about ourselves, our place in the world/relationships/work, who we are, the person we want to be, how we ‘feel’ & think are transformed. It is nothing short of a metaphorical tsunami that washes through our world. There is no more of familiar landscape. It is gone.

Multiple sclerosis comes with a whip that can *crack* wherever, whenever. A sudden dart of burning pain, loss of balance, fatigue or lost for words. One of the ways I’ve dealt with these interruptions is by focusing on my own reality and using other ways to avoid ‘catastrophic thinking‘ (turning off those bells!). As humans, uncertainty is something we deal with every day, not only as someone with MS. However, it is the ‘knowing our own vulnerability’ that magnifies our life experiences, good and bad. I’ve had the worst of days/months but have used all sorts of means (NLP, therapy, socialising, public speaking etc) to deconstruct the experiences so I get through in a mind/body healthy. Tap into your own wealth of experiences and use what you know so you can manage your condition. Self-management is the key to a great life.

I’m an avid reader and have found the experiences of others, business/mind leaders and social innovators really useful- there are always tools for me to pick out and use in my day-to-day. 

  • The Impossible Just Takes a Little Longer by Art Berg
  • Full Catastrophe Living by Jon Kabat Zinn (mindfulness)
  • Richard Branson’s autobiographies 
  • Philosophy
  • Idealistic & deep (Ursula Le Guin; Kahlil Gibran; The Book of Psalms; travel books)

Do you like black & white, the sense of control & certainty? ResiStance is futile! MS is as grey as anything and learning to live in the mystery while (also living fiercely) may be a way to ease the stomach-churning pang of uncertainty. Compassion- rage against the what ifs/whys/hows but also know it will be exhausting and destructive if not balanced with enjoying your one and only life. Self-compassion can be restorative and sustaining- check out Dr. Kirstin Neff http://self-compassion.org/

As the tsunami waters subside on the diagnosis, it’s okay to say no to people who try to tell you what they think is best for you (especially me!) and to disagree. What I mention I have used/am using in my own life and I hope that some of what I share will be of use to you if not this week, some day in the future as you find the ways that work best for you.

Join me on Twitter to chat and talk through the messy things @emmadragon

Multiple Sclerosis: The First F____ed Fortnight

The early days are the most ‘challenging’ as in it is like a dirty dangerous whirlwind where emotions, words and all sense of self goes whizzing around. The day I walked into Mullingar Accident and Emergency room, I was wearing my jeans and a t-shirt that had seen better days. Two weeks later, not only was that t-shirt gone, the Emma who walked into A&E had disappeared, stepped into a bizarre place of chronic illness and dis-ease.

Daring-Greatly2

Multiple sclerosis- multiple scars? I had brain damage? Those fifteen seconds, when those words went from the consultant’s mouth to my ears, a little part of me died… I picked up the pieces of my broken heart but I still think of old Emma sitting on the edge of the hospital bed and the new Emma, getting up and stumbling, in a post-traumatic shock way, into a new life, a new way of being.

My identity, the idea of myself turned upside down and inside out. I was given some vague information about the MS Society as well as some local groups but every day that week with the pieces of my heart rattling round my pocket, I drove myself to hospital, got my meds and drove myself to work. There’s no doubt, it has been raw, it has been ugly with cursing and swearing, lost relationships dodgy decisions. But I everyday I make peace with myself, I give thanks that I have another moment to live. Because there were times when I didn’t see any hope. I was soaked in blood, sweat and the tears of a thousand years.

I didn’t realise it but that was a magical time when the days came and went, health dripped into me in the form of Solu-Medrone and care from the nursing staff. It was also the worst time of my life when I fu*ked, cursed and got angry as hell and contemplated ending it all.

Now, eight years on I’m still here. I was transmogrified not to someone new, but to my authentic self. I never expected to have to talk to strangers about the life I live. But stories are transformative and we humans are wired for narrative and prose. It is when I recognised the power of authenticity, of whole-hearted living that I learned the power of sharing it with others. We can all do this, in good time, and gradually we can positively affect the lives of the people we work with, our partners, wives, husbands, family and friends. Do it daring greatly.