Why don’t we ‘come out’ about Chronic Illness at work?

Aren’t we funny? For years I’ve been told that I don’t look disabled, that I look “better than ever” or some other charming phrase. It is meant as a compliment; it is nice to look healthy and well and I take it as such. But in my work, it isn’t enough- I know that looking healthy and well has become a way for people to dismiss what can be traumatic effects of a chronic illness, neurological or otherwise.

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There aren’t many of us living out and public, although this is changing. Maybe we need something akin to a Pride Parade of all the people with chronic illness in every town so people start to realise that we are everywhere. Old, young, female, male, trans, tall, short, different colours, gay, straight, bi, queer, different faces with different cultures have chronic illnesses, are disabled. We’ve just been afraid to come-out because we know we will be treated differently. Yet, when I was first diagnosed, I needed a hero, a ‘possibility model’, someone who was still working, making the most of her life, no matter what this disease threw at her.

Why is it such a big deal? Why do I or other people with MS need people to ‘come out’ about living with the condition? Growing up gay in Ireland was fairly bleak with the only bit of light the Doris Day musicals or the most likely lesbian found on TV during Wimbledon. When I found someone I could look too, I watched and learned.

We look for people who are like us so we can imagine some day we won’t be afraid any more, just like they aren’t afraid. We don’t come out- we are afraid of questions, the potential pitying, perhaps a little ashamed because we aren’t 100% healthy (not that anyone is ever 100%), afraid of being treated badly, the ‘head tilt’ apology (drops to one side, usually with a frown), dismissive tones and of course, afraid of being fired.

Being brave isn’t easy and I don’t want to be considered ‘brave’ if all I’m doing is being myself. But if we are to think of bravery as being yourself, and by being yourself you bring a different perspective and outlook, we’re on a good path. Diversity is good for business as Sara Sperling, currently Director of Human Resources at Snapchat and former leader of Diversity & Inclusion at Facebook says

“We want diverse teams. The research shows that diverse teams are going to build better products. We don’t have a simple product — we have a complex product. Because of that, we need diverse perspectives and diverse journeys and what that equals is people of different ethnicities and different paths.

If you’re sick or have a chronic illness or something else that causes dis-ease to your body or mind (we’re all going to have it sometime in our lives) wouldn’t you like to stay being you? Keep your aspirations, ambitions, work plans, life-style or dreams of joining the innovation celebration with Richard Branson or Arianna Huffington. In the meantime, think and reflect on why we hide our diseases/chronic conditions in our workplace in this so-called ‘brave new world’? 

Join me on Twitter for to chat about this and other things @emmadragon

This article first published on LinkedIn

Don’t Follow the Calf Path

This week,  I take a look back on the year of MS and Me and reflects on the paths we take through life.

So where are we, as a community, now? What is going on for people with MS or other neurological conditions in 2014 in Ireland? There are thousands of experience with a myriad of stories about how well people are doing, how their daily lives are improved because they are getting the supports they need at a challenging time and how they are keeping themselves well. But the waiting lists remain, people don’t have access to neurologists nor neuropsychologists, to counsellors to talk their feelings out, to employment advisors to work things out or to financial support so they can live beyond a state of penury.

Go your own way!

Go your own way!

But aren’t the lights back on in the country? To look at the news, we see that the country is ‘back on track’ in terms of the economy (never mind the water protests by thousands of people and the cuts across our social systems). Is this the same path trod during the Celtic Tiger years, where people believe the ‘news-speak’ rather than critically examining what’s behind the words? It is just another ‘calf path’ that we are following just because it is the path that is well worn and used?

The Calf Path is a poem by Sam Walter Foss and tells the story of a ‘primeval’ calf as it walks home ‘like a good calf should’. But this calf is wobbly on its legs, going here and there in a crooked way, eventually getting home. The next day, a dog follows the calf’s path, then a bell-weather sheep leads the flock along the crooked path. As it is worn down, going higgledy-piggedly through the woods, it becomes The Way. It is such a crooked path that is cursed by all who use it but use it they must because it is The Way. The path became a lane, the lane became a road that was difficult to walk yet it then a street where thousands every day step their feet. Now, thousands of years on, it is that bendy road that curves this way and that through our community/village/town/city. It is the primeval calf, wobbling its way home thousands of years ago, that is still leading us this way and that.

Adventure on another person’s path is useful for a time but we need to make our own way as we live our own lives. People have been discovering their own way, how to manage a condition that they never expected to come to their door. Whether it is work, family, mothering, activism, relationships, spirituality, incontinence, the balancing act, disclosure, fatigue or something else, it is all being lived by every person, everyday.

We are a eclectic bunch, people with MS. Diverse, determined, struggling, thriving, annoyed, happy and joyful. No matter what, nothing in life can prepare people for the adjustments that MS sometimes forces us to make. At times, we do walk that ‘Calf Path’ because it is easier and it is the best things for us. But don’t let your life be a walk along the path of a creature that bares no resemblance nor has no understanding for what you want for your life.

As this year draws to a close, the MS and Me blog team will look back at this first full calendar year with gratitude that we get to speak of the unique ways we live with MS and share with you failures and successes. Take some time to look back at your own path through the past year and reflect on what has past, your own successes, what could have gone better and what you learned. Reflecting is one way to grow and allows us to look with joy to the days that are to come.

From my family to yours, may your days be happy and  your New Year be filled with joy.

Join me on Twitter for some chats @emmadragon

 

The Calf Path by Sam Walter Foss

 

Christmas is risky business

One month before Christmas, a time when panic buying starts and we are liable to forget what it’s all about. Are you wondering what is it friends/family want? How about a dose of love and care?

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My family are well and healthy. They’re all safe warm and while there are some financial restraints, they’re in good form. But I’m checking and have decided that everyday for December I’m going to ‘Check-In’ with a friend or family member (watch out folks :) ). Perhaps even those people where relationships were strained.

Last weekend there was a school reunion for my class. It was an informal event, we gathered around a table in a local pub and talked and laughed and teased and giggled and *WHOOPPED* all night long . We had shared six years living together (mixed boarding school) going through many ‘firsts’ together at such a formative time- puberty- and figuring ourselves out. We were so young…

We’ve all changed and life has taken its toll. But it has also allowed a blossoming of creativity, of their individual spirit. People left behind childish things and got on with living life. There’s something so very liberating about being an adult, designing a good life.

There’s something about this time of year whether it is the joyful memories I have of Christmas as a child, relatives coming home for the holiday or just ‘that’ atmosphere. This year I’m taking risks, reaching out to those people who’ve been important to me at one stage or another. I want to find out how they are, how life is for them, are they happy, loved? It may have been twenty years but they’re the ones who have been part of our journey. Without their contribution, we wouldn’t be at this place in our life.

We never know the day or the hour so pick up the phone, send an email or Tweet, even Facebook. Sometimes it is worth stepping out of your comfort zone to reach someone you care about. It’s Christmas, take the risk.

 

 

© Emma Rogan 2014

If you want to quote or use this material, please reference me, Emma Rogan as author.

The will to try is greater than any feeling of defeat

There’s been a big change in the last week. In Ireland we’ve put our clocks back one hour which means brighter mornings (yey!) but darkness falls from 16:30. It is a time when everything slows down and as winter closes in, there’s more time for reflection,

Last time I wrote about the Brussels Half-Marathon. My plan was to use that run as part of my training for the Dublin City Marathon, held last Monday, 27th October. But it wasn’t to be. Since that day in Brussels there have been more unexpected events. Firstly, it took ages for my body to get back to normal- I walked, jogged, rubbed the achey muscles and slowly got back to normal. Secondly, I’m discovering my new normal. Just like all of us, my normal is different to yours, more so when living with multiple sclerosis. And, just like yours, my ordinary life is full of surprises.

Training has been discontinued. I’ve been out along my usual tracks but the thrill has gone, for now. These dark evenings aren’t great for road running (excuse) but to tell you the truth, I’m afraid of tripping up. But I’m missing the buzz, the clean breathing, the deep sense of connection with the present time, the into-body-experience that comes from exercise. I’m conflicted- there’s the thrill of running, moving along the path, making my way to my favourite bit of earth and then there’s the sensation of falling over and hitting the unforgiving ground.

The only thing harder than training for the Dublin City Marathon has not being able to train for the marathon. I’m an ordinary woman who trained and trained with a marathon in mind, with a vision of what it would be like to run one mile, two miles, three miles… all the way to the 26.2 finish line. But then, Brussels happened.

I’ve not listened, I’ve felt the pain and I’ve taken this body of mine for granted. If I were stronger, if I didn’t have scars, if I ran faster, trained harder would I have made it? Has it has all been for nothing??

A wise woman (my physio) reminded me that having the goal of running the marathon has made me stronger than before, I’ve better muscle tone and am fitter. I also know that my will to try is greater than any feeling of defeat. Feelings pass while my personal will stays with me. I did finish the Brussels run and for now, I will focus on the prize- a healthy body and mind and be grateful what I have.

 

© Emma Rogan 2014

If you want to quote or use this material, please reference me, Emma Rogan as author. Get in contact with me if you want to chat :) 

Brussels, The City of Angels

Why do we keep going, focused only on the finish line or doing a good job? What is it in you that drives you on? I made it to the finish line of the Brussels Half-Marathon but not before a difficult walk.

The race started at 10:30 am. The EMSP Run for MS Team met at Schuman, to meet one another, take some photos and go together to the starting line. I’d trained, was feeling really good, had my lucky pink shorts on and was all set for a gentle pace along the course. Into the middle of the pack I went and, as any runner will tell you, we slowly shuffled in the crowd until the road opened up.

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And I was off! A good pace, not pushing things yet getting good coverage. At the first kilometre there is a hill where we see the brilliant sight of runners stretched out before you, multi-coloured warriors claiming the streets for a short time. Then we ran through an older part of the city with cobble-stoned streets and gorgeous squares. I was a little nervous with the uneven surface but it was going well. Maybe a little niggle so I eased off as we went down and up through the tunnels.

Then it started. My foot wasn’t landing like it should and I started stumbling, almost falling at times. I slowed to a walk, drank water even poured it over my head and started off again. I nearly tripped. I couldn’t run. The muscles in my leg just weren’t working. I was starting to limp and still had 15 km to go….

For hours I walked the route, with police who were lining the way asking a concerned ‘Ça va?’ every kilometre or so. I said I was okay, I wasn’t injured and wanted to keep going. When I looked behind me… the white vans that were coming up the back of the pack were just a few hundred metres from me. I was almost the last person. I started to cry, overwhelmed, stumbling, it was impossible… then a man who was cycling the route started chatting with me. He was nice and cool, said he would cycle alongside me for a while. We chatted and he told me his name, Damien. I told him about Ireland and he gave me strength. It was then time for Damien to turn back; he wished me well and left me by high-fiveing me with a dose of inspiration and “You will do it, I know you will”. On another hill, when I was again doubting, a woman out walking her Schnauser offered to take me home so I could rest (!), while a bin man, clearing the streets after the run, offered me a lift on the back of his truck!

There was then the final unforgiving hill where I stopped briefly to rest and ask the Universe/God why this was happening now of all places? I nearly stopped, I was so tired. When I eventually made it through Grand Platz, close to the end, I asked someone with a medal around his neck where the finish line was? He asked if hadn’t already gotten my medal?? I shrugged and said because of my leg I was only making it there, then. He directed me “just around the corner, 70 metres”. I walked to De Boukiere and found the finish line where workers were dismantling the stage, the finish line. There were no runners left as it had closed at 14:00. It was a lonely space. Then, as I walked towards it I heard cheers. The man with the medal and his friends had followed me to the finish line to cheer me on. Surrounded by the good will of strangers, I finished what had been the toughest walk of my life.

I sat down, shaky, overwhelmed and sobbed. Another “Ça va?” as a young woman put her arm around me and asked if I was okay. I told her yes, just emotional and I had just finished the race, absolute last. With the best smile she left me with yet another gentle gift of human understanding and connection. I had walked, dragging my foot, my doubts and my fears for 10 miles and while I thought I was alone, I walked with the gentleness of strangers propping me up every step of the way.

As I write this, I don’t know why I kept going to cross the finish. I didn’t know I had this part of me, in me and there is no name for ‘It‘, but ‘It‘ is there.

Don’t ever stop doing what you love. You will always find a way. The impossible just takes a little longer (Art Berg).

© Emma Rogan 2014

If you want to quote or use this material, please reference me, Emma Rogan as author. Get in contact with me if you want to chat :) 

Edited 10th October

Foot Falls and Marathons

Less than 24-hours to go before I get to the start line of the Brussels Half-Marathon. Yippee! This is the second year a team from EMSP will take part, raising awareness about living with multiple sclerosis (you can read more about the origins here). Like all good things, the spark was lit over a a delicious lunch in the City of Creative Chat, Dublin!

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I’m optimistic about the weather- it is a fresh morning in Brussels, bright and sunny with not much change due for tomorrow. My body and mind are ready: I started slowly this year, easing my endurance and building up many, many miles on many trails/streets. I’ve brought my gear with me wherever I travelled (Brussels, Elche, Galway, Tipperary) followed the advice of many experts (John Bingham and Jenny Hadfield’s, ‘Marathon Running for Mortals‘, Stuart Mittleman’s ‘Slow Burn’). Food has been hugely important; I’ve been eating as much vegetables as possible, nuts, fish, fruit and we even started juicing in my house to get extra nutrients in. When away I even got a bright pink t-shirt that, absurdly, gives me a great sense of joy. I ran with brilliant, supportive people last year in Brussels, with thousands of others during the Samsung Night Run in Dublin last April and later this month I’m going to do the Dublin City Marathon for first time and I can’t wait!!! To top it all off, I’m getting out into the elements (rain, hot sun), into nature and wherever I am, there’s a sense of freedom that nothing else gives me.

But something has also happened that has scared me. It’s called ‘foot-drop’ and it is a bad-ass, nasty symptom of MS. Essentially, because of nerve damage, some of the muscles in my leg are weaker, not responding as well as they should (peroneal muscle weakness). When I run, my core body temperature increases, again affecting the nerves. All this causes a drag in my toes/foot which in turn has caused me to trip and tumble many times. All the training I’m doing has not caused this symptom, I checked with my neurologist and researched…lots. However, the extra training has me asking for more from my body, it is stressing it more than if I wasn’t running.

I was afraid, hiding from the changes that had me falling on my face. Thankfully, I now ‘see it'; I’ve named it and I can now deal with it. I recognise the symptoms, respected my body and now there is a plan, created by my physiotherapist. It depends on my commitment to myself and the choice to strengthen the muscles. It involves using a stretchy band, repeated exercises and funny stretches. It doesn’t mean the foot-drop will go away, but it does mean I am working on and with muscles that need attention. Someone has said I should stop running, stop trying to do too much – I have nothing to prove. But I love to run, it gives me a sense of enormous well being.

I’m optimistic about the weather and that everything will work out. But I am confident that I’ve done the work, enjoyed my body and tomorrow over the course of the 13miles/18km, I’ll relish the buzz that comes from doing something I love.

What do you do for that sense of freedom? Are you a runner? how do you manage your challenges? If you have some money to spare and want to support the Run for MS team/EMSP activities, please go here: http://www.ulule.com/run-for-ms/

 

© Emma Rogan 2014

If you want to quote or use this material, please reference me, Emma Rogan as author.