Original Newsletter posted here:
Hello and Welcome...
It is four years since Dominic's accident, and we wanted to bring you a message from his friends and family to tell you about Dom's day-to-day, and how he is doing.
In this edition, we would especially like to thank the carers and visitors who have such a hugely positive impact on Dom's comfort levels and quality of life. Mary, Dom's sister, and his friend Rob have written about this for you; we hope you can take the time to read their messages.
The funds raised by all of you for the Trust are making a difference to Dom every day, and we would like to thank all our supporters and fundraisers - you can read about their latest events in this newsletter too.
There are exciting medical plans ahead to help Dom even further. We will bring you this information in the next edition, along with messages from his therapists on how he is benefitting from his treatment. And of course, we'll be featuring another round-up of the fantastic fundraisers that friends of the Trust are already planning!
And thank you for taking the time to continue supporting and engaging with Dominic.
Four Years On - A life in the day of... - Mary Morrogh
My brief for this piece was to provide a descriptive for this newsletter on how ‘Life’ is for Dominic now. Now being four years since he stepped out of his car, onto the beach, and into the icy water. It was a gloriously sunny day and all he wanted to do was to embrace life and adventure, and enjoy the great outdoors. Not much to ask. Four years since Nicky received a phone call from Beaumont hospital; Four years since I walked in to the hospital and saw him, instantly fearing the worst; Four years since I made an unforgettable phone call to Tara in India, and others to Daphne and James in Cork, asking them to escort our parents on the long, lonely drive to Dublin.
There are days that four years seems like an eternity, and others that it seems like yesterday. The memories are, for better and worse, still very fresh. I remember speaking with him that morning, and spending the afternoon with him the day before when he called over to our house, not to see me of course, but to play with Marcus as he was missing Sonja so much. She and Tara had been in India for a few weeks at that point. He had spent that morning out kitesurfing, having another lesson, and had really enjoyed it; and had just changed his flights to India, deciding to head out early to his girls as he missed them so much. He was so happy, healthy and content. I can hear his voice and his laughter so vividly in my head. He was so complete since Sonja was born. I feel very fortunate that that is how I remember Dominic right up until the moment his fate turned, as now, Dominic is so very, very different.
Now, four years on from stepping out of his car and onto the beach, happiness, health and content are no longer part of his life. So what is? If I am honest I wish I could say that he didn’t have a life; that he was free and at peace. That he quit while he was ahead. Carpe Diem and all that. But unfortunately, Dominic is too stubborn for his own good, and for some godforsaken reason, he is hanging on and fighting for something.
So, how is his ‘life’ now? How does his current ‘existence’ even qualify for a life? Is he even there?
How I wish he wasn’t. Each time I leave him I convince myself that he isn’t, because that is the only way I can walk out of the room; but each time I walk in, I cannot help but feel that he might just be there. Some part of him, that is. Some small fragment within his handsome, strong, frustratingly healthy body is responding to stimuli and adapting to his environment, and trying to reach out. He is, it seems, more than a body lying in a bed.
It would be so easy for me to provide a medical report on his body, his medications, botox (not the kind you are thinking, he was never that vain), results of his most recent tests or indeed our plans for functional Neurological imaging with MRI and other sophisticated tools to assess his status. We have big plans that I have a lot to say about (the doctor in me coming out). Instead, I will endeavour to paint the picture of how he is now and what his days are like. How he passes the time and how time passes him by.
His days are far from normal. Indeed, the clock as we know it is no longer influencing his circadian rhythms. I don’t think he has a sense of time; Thank God for that. For him, day rolls into night; and night into day. The same bed, same four walls, same voices and sounds, same smells. Routine exists for him in the form of medication rounds, positioning, time in his chair, therapies and visitors. That is the schedule of the outside world, not his. Poor Dominic, never one to enjoy being told what to do!
Outside of this program to which he has no choice but to surrender, Dominic's "days" consist of a series of moments in which he floats in and out, either spontaneously or stimulated by his environment / visitors / Therapists. During these moments, his level of consciousness increases allowing him to reach out and try to connect with his environment; to force his way back into the world his body has been captive of for almost four years now. I, rather we, believe that most of these moments are simply involuntary reflexes, but there are others that are convincingly voluntary and purposeful. Moments during which someone inside of his body becomes aware of something on the outside by responding in a way that seems purposeful/conscious. The cognitive, intellectual or reflective capacity of Dominic is unclear (we know what it was…), but we do believe that there is someone there. And so, in an attempt to describe how ‘he’ is now, I will give you examples of some of these moments.
But first, to set the stage (!), let me first describe what he looks like! Simply put, he looks like himself! Handsome. When off the ward, people who do not know him presume he is ‘normal’, only realising that he is not when they speak directly to him. He is a little bit more grey on top, a little less ‘ripped’ (he has lost a lot of muscle mass, and would not be proud of his skinny legs) and oddly tall. I don’t remember him being that tall but everyone always comments on it. His most obvious deformity is an asymmetry on his left temple. It looks sunken in, like a part of his bone is missing. They say that they put it all back on but I have my suspicions! He would not be pleased about it, but I tell him it is a good conversation starter. We all remember how he liked a good conversation.
He cannot support his body on his own, and thus he is either in bed, lying on his side or his back, or sitting out in his chair. His eyes are open spontaneously, and he actively looks around the room. However, he only very occasionally fixes his gaze and so it is difficult to tell if he can see or not. We think that his sense of balance / centre is off. If he is in a position that he feels unbalanced/off-centre, then his response to this is to hold his head to the right and force it backwards on to his pillow / headrest and hold an expression of fear / concern.
He has a great cough, yawns a lot (especially when I am there …) and can move his mouth as though he is trying to talk. He makes sounds, but no words. One of the most interesting things is that he maintains a fascinating range of facial expressions, all of which are so characteristic of him and often so appropriate / befitting of the setting or conversation. His body is quite restricted by contractions and thus cannot move freely. We think he has some control of his left side, primarily his left thumb and index finger, as well as his neck, leg and mouth. His movements are slow and laboured, but they are there and are controlled.
With this picture in mind, you may now appreciate that the changes that we see in him during these moments of heightened consciousness are subtle and slow. They can be spontaneous or in response to stimuli – noise, smell, pain, touch and very occasionally sight. You have to look out for them and be patient with him. I am sure I am not the only one who sometimes just talks at him or over him (or doesn’t talk at all) during my visits, but when you try to connect, more often than not, he will try too.
Noise: The children. Need I say more? Sonja!.. and the boys. Children, as many of us know, verbalise at a certain pitch, frequency and rate. In reaction to this he will often open his eyes very wide and put on a face as if to say “will someone please shut (lock?) them up!”. Recently my newborn started crying loudly while we were with him and he had a very puzzled look on his face in response. As you can imagine, it was not a sound he was not used to hearing. More amusingly, last weekend, we (Dom, Dad, my children and I) had an entertaining ‘moment’ in the Greenhouse in the gardens at RHD. A cranky resident wheeled herself into the tunnel and started to give out to the children who had been playing with the spades and the watering cans. She was desperate for a fight and, Dad very uncharacteristically (he is the quiet, polite type), fell in to her trap and they started to argue. It was quite amusing! I tried to mediate and break them up however was stopped by Marcus (4yrs) and Adam (2yrs) who drew my attention to the fact that ‘DaddaDom’ was shouting. I’m still undecided if he was joining in on the scrap, or shocked at Dads response! I am looking forward to our next sunny Saturday in the greenhouse with Dad’s new friend and letting the boys run wild! Let’s see if we can get Dom going again!
Certainly he appears to respond to voices differently. Be it pitch, content or frequency (it is important to speak slowly around him), he certainly can appreciate ranges of sound. Without doubt, his response to Tara’s voice is unique. As for content (i.e. following commands / understanding), while this can be hit-or-miss, when you catch him in a ‘moment’, he appears to be able to follow commands and exhibit an understanding of the conversation.
Smell: We test his sense of smell with various herbs, spices, perfumes, coffee, and others things not so pleasant. I certainly think he has a sense of smell, and with that one of likes and dislikes based on his facial expressions and turning of his head.
Sight: This is a tricky one. Dominic’s eyes are open spontaneously and they move freely. He appears to be able to appreciate light and dark, but the quality of his vision is unclear. He doesn’t fix gaze however, for example, when you ask him to turn his head toward you, he will try to do so and appear to look with his eyes versus just turning towards the sound. We are in the process of organising formal testing of his visual fields but without a means of communicating this is a not straightforward.
Taste: How he loved his grub. I admit to giving him lemon (ha!), and Dad whips out the vanilla ice-cream (am not quite sure who benefits more..). Dom will lick (or purse!!) his lips and swallow. We are considering moving on to his favourite whisky and seeing what happens!
Pain: Dominic makes it very clear when he is uncomfortable in his position, or needing the attention from the nursing staff. You can see it very clearly in his face, in his eyes and often in his voice as well as a physical reaction in his limbs as he tries to withdraw from the pain. For this reason, physical therapy for Dominic is paramount. Without the quality of care from all his therapists and his visitors making sure his body is as supple as possible, we would be dealing with a man in excruciating pain. It gives us some comfort to know that something we are doing is helping him, that his physical comfort is being taken care of as best as (we) can, and we are very grateful for this.
Touch: It is automatic that when I arrive for a visit, I kiss his cheek, put my hand on his arm or hold his (left) hand. With the latter, he will appear to relax and sometimes try to move his thumb as if to say he knows someone is there. Also, during his massage therapy sessions, he clearly relaxes and zones out in response to the therapy. He is clearly enjoying it!
Voice: As I mentioned previously, Dominic can makes sounds but not words. The staff and his ‘roommates’ have commented that he sometimes makes noise in an attempt to get attention. Personally, I have had some moments with him when it is clear he is uncomfortable and he groans to that effect. Also, there have been times that when I talk to him he looks in my direction and makes sounds as though he is trying to connect verbally. Interestingly, staff and other patients have shared with us that at night time he has been known to make a lot of noise. Some patients that have shared the room with him have told us that they hear him speak at night time. I must admit to being a bit dubious about this, but it makes us wonder if he dreams. An interesting, somewhat tortuous thought.
And so, that is a little glimpse of how Dominic is now. I know the question everyone wants to ask is if we think ‘he’ is there. Is he ‘locked in’? I want to say no because that would be easier, but the honest answer is that I don't know who, or what, is there. What I do know is, during these moments, there is a level of "consciousness" evident that seems appropriate, purposeful, active and direct. Of late, these moments seem to be more frequent. And so, more and more, I, we, fear that he may be there. God help him.
Four years ago, we lost the Dominic we knew and joined him on this journey, on this rollercoaster. It sucks. It is never ending. But we just have to roll with it, and continue to fight for some sort of quality of life for him, for peace, comfort, dignity and respect. While we must remember him as he was, not as he is, we need to stay with him and bring him forward. Give him the love, dignity and respect that he deserves. Be patient and hopeful that something meaningful will happen. The Dominic I remember is somewhere, fighting to reach out to his wife and daughter, his friends and his family, and tell them he loves them, that he is sorry, and that he is grateful. And so, on his behalf, I thank you all so very much for your love, support, time and kindness over these last 1460 days. You have given us strength to continue to fight for him, to create some sort of ‘quality’ of life for him and to make sense of this tragedy. Where there is life, we must search for hope. He has no choice and so, our journey continues.
Our rota - Rob Keeling
I recently got a mail from Gareth asking me to put pen to paper and contribute an article to our newsletter. Tara sent a mail asking for a comment on our visit rota, which has been happening since Dom’s accident. Tara’s comment - I think it is an amazing commitment from you all and would be something really special to highlight - is what our rota is all about.
My god, it’s nearly four years since we all got that horrible news. Yet, in some ways it seems like only yesterday. Following Dom’s accident, everyone wanted to help and support Tara, Sonja and Dom’s family. When Dominic came out of intensive care, Gareth organised a rota amongst anyone available, so that we would visit Dom in hospital on Monday, Wednesday and Friday evenings. At the time, the purpose for these visits was to have someone there to hold Dom’s hand, talk to him, reassure him and encourage him to wake up and come back to us. We all hoped and prayed that he would wake up with a sore head and give up kite surfing.
The Richmond Ward in Beaumont was a harrowing place - such a mix of heartache, loss, optimism and hope all fused by an amazing staff. It certainly left an impression on me. With Dom’s move to Roachestown Ave, our rota continued. For my part, it was during those four months that I realized we were in for a long journey with Dom. Since his move to The Royal Hospital in Donnybrook three years ago, I have seen immense improvement in Dom; yet, heartbreakingly, we have not crossed that communication divide. The Royal Hospital has provided comfort, amazing love and care in an environment that is homely but functional.
The rota continues; however, I live around the corner, and the openness of Donnybrook permits me to pop in for an hour whenever I can. Every visit to Dom is different. Dom is a great agony aunt - it’s nice to sit and tell him your problems, chat about daily life and keep him up to date with how everyone is getting on. Sometimes I just sit in silence, holding Dom’s hand, thinking of the great memories we share and remembering the times captured in the photographs beside his bed. Sometimes I will work some of the stretches and physiotherapy that I have been taught. Other times I will try to stimulate Dom’s senses through smell, music and telephone calls to friends who are further afield. Each visit is different, yet important for me to be able to communicate to Dom that I love him and will always be there for him. Sometimes my visits are difficult. There are times that I’m angry and disillusioned at how unjust life can be. Why did this horrible thing happen to my friend? Yet, it is at these times that I realise how lucky I am. I know that I am privileged to be Dom’s friend. I know that, by making a commitment to a visit, Tara can have an evening off with the assurance that one of us that loves Dom is there.
The last four years have made me realize what an amazing man Dominic really is. Every one of you reading this article can smile and laugh about times spent with Dom. He was so much fun; he loved life, loved adventure, loved his friends. He was as bold as brass and as mad as a hatter. With very little prompting, he could do - and literally did - anything. Yet, it was Dom’s love for Tara, Sonja and his family that made him really stand out from the crowd. Personally, I have so many memories of Dom. Our rota has allowed me to continue sharing my life with him. It is second nature for me to walk into Maple Ward and spend an hour or two there. I have also cemented my friendship with Tara, Alec, Patricia, Will, Nicky, Mary and Anna.
Finally, I must take my hat off and thank Gareth Hunt for his work and commitment in keeping our rota going. It is Gareth’s hard work and communication that deserves credit for this article.
If you would like to come and visit Dom, but feel a little unnerved, call in, as one of our current rota - Cahir Doherty, Johnny Cronin, Mark Tierney, Keith McGovern, Paul Johnston, Gareth Hunt or I - will be there for an hour on Wednesday evenings between 5.30 and 8.30. I am sure Dominic would love it.
A ROUND UP OF RECENT EVENTS
An Afternoon of Tea, Cakes and Jewellery - Caterina Giuliana
On the 8th of November 2014 we had a very enjoyable and relaxing afternoon with tea, cakes, and items from my own jewellery collection. People enjoyed the warm atmosphere, while snacking on some delicious cakes made by Tara and Galina, as they shopped around. My daughter Elena and Sonja, who were very excited about this event, set up their own little shop in the kitchen, with several of their toys and dolls, selling their stuff to their mums. That was lovely to see! Thank you to everyone who visited during the day and for helping to make it so enjoyable. You helped us to raise funds towards the Trust and Dominic’s care.
Kite to Heal 2014
Hooked Kitesurfing ran their annual fundraising event on 2nd November raising funds for the Dominic Morrogh Trust. This event was a fancy dress race, with the participants, who were dressed up in all sorts of costumes, heading from Duncannon Beach to Loftus Hall in County Wexford. Huge thanks to David and Donal in the Safety boat and to the RNLI crew and to the photographer on board who brought home some super images
Big thanks from the Dominic Morrogh Trust Fund to all those who participated and to the organisers, Niall & Christina Roche from Hooked Kitesurfing in Duncannon.
Dom’s 40th Bash
It is so fitting that a night to celebrate Dom’s 40th ended up with some serious dancing, the man himself being no stranger to a dance floor! Toners pub on the 29th November provided the setting for a truly memorable night for Dominic, his family and friends. And if the sight of a bunch of usually dance-floor-shy 40 somethings ‘getting down’ wasn’t fantastic enough, the sight of the beautiful Sonja blowing out the candles was, without a doubt, one of the golden highlights of a very special night.
Huge thanks must go to Bob, Cathal, Cillian and Des who organised the amazing DJ and also to all those who donated the seriously swish spot prizes and auction items, which raised a significant amount for Dominic's ongoing treatment. Gourmet bites were provided by Joe and the all-important, and deeply delicious birthday treats by Galina and Anna. And thanks to Sharon, we were able to show Dominic a lot of picture evidence from the evening and pass on personalised wishes from all those who attended.
It was so lovely to have pictures of Dominic, reminding us of happier times, decorating the venue, he would have enjoyed it as much as the rest of us and he was sorely missed. Isabel and Cameron, you both organise a great party, we are already looking forward to the next one!
Christmas Party in Blackrock Castle - Dave Gaffney
On the 23rd of December last, myself and my fellow fundraisers, Glenn MacCarthy, James Murphy O'Connor, Clair McSweeney and Ruairi Walsh organised our annual Christmas Fundraiser for Dominic in the beautiful Blackrock Castle in Cork. We were privileged again this year to be inundated with items to be raffled off, which we received from friends, family and business acquaintances. The food was organised through the Castle Café, and all of our "refreshments" were generously donated by Peter Collins of Barry's Bar and Restaurant in Douglas. Dave Mac of Red FM was good enough to provide music, humour and master-of-ceremonies duties for the night. It was a wonderful night in every way and one which culminated in substantial funds being raised to assist with providing better care to our good friend, Dominic.
Movember : Five lads, five beards, all in the name of Dominic
Thanks, James Murphy O'Connor, Ivor McMahon, Robert Keeling, Eddie Barry and Gareth Hunt for taking up the MOVEMBER challenge, and to all their supporters for the funds raised for Dom.
Running for Dominic in Paris
After a tough winter training program, John Cronin, Paul Johnson and Michael Keane, ran the Paris marathon on the 12th of April. They did this run for Dominic, asking their friends and family to support the Dominic Morrogh Trust Fund, with these words, “there are a lot of worthy causes to which you contribute but Dominic is one of life's true gentlemen and a very worthy recipient of your hard earned cash.” The response to the fundraiser has been fantastic and will be very helpful in maintaining Dominic in as comfortable a state as possible.
As for the marathon it was an unbelievable experience and they got a stunning day in Paris. It was a tough slog though and if you want proof that they ran it, John Cronin even made it into the marathon highlights video https://www.youtube.com/watch?v=F4mXWozxOaM&feature=youtu.be (minute 2:20)!!
UPCOMING EVENTS
The Global Fundraiser for Dominic’s 40th
In December, we, Tara’s childhood school friends, kicked off an online fundraiser to celebrate Dominic’s 40th birthday year.
We have known Tara as long we can remember! We grew up in the close-knit atmosphere of a boarding school - much like Dominic and his friends – yet our closeness remains despite the fact that we all live in different parts of the world now. And we have known Dominic since her first phone calls and letters telling us about this handsome Irish boy she met out salsa dancing during her semester abroad in Ireland. Yes, the one with the two left feet!! Over the years we have been with Tara and Dom through their adventures - Dominic’s frequent and highly anticipated visits to Boston while Tara was studying at the Kennedy School, weekends in NYC and Washington DC, visits across the pond for Christmas, New Year’s and birthday celebrations in Ireland, their wedding, in their farm in rural India, that brought together hundreds of people from across the globe, Sonja’s arrival and many other adventures since.
Our goal is to raise at least Euro 15,000 this year by providing, not just our graduating class, but also the broader Kodai School community, and our families and friends, the opportunity to celebrate and support Tara and Dominic. Anyone who is interested in contributing is warmly welcome and encouraged to join us with just a click of the mouse at: http://www.mycharity.ie/event/dom40birthday/
The money we raise will go towards ensuring Dominic’s care at Donnybrook Royal Hospital, as well as towards any supplemental therapies from which he might benefit.
The Mini Marathon
2015 seems to be the year to run for Dominic. While the lads kicked it off in the Paris Marathon, the ladies plan on picking up the baton and continuing the run for Dominic in the Mini Marathon. Galina Petrovich, Eimear Ni Chathaill, Wendy Hickey and Mary Morrogh will be running for Dom on June 1st,. So if you are around Dublin city that day, keep a look out for these runners. http://www.mycharity.ie/event/galina_petrovichs_event/http://www.mycharity.ie/event/galina_petrovichs_event/
Rumours suggest there are now plans for a group to also run in Cork in June and also to run the Dublin marathon later this year! Any other runs happening this year?
Dom’s Cup
Watch out this coming August for the fantasy football league being run for Dominic, for the third year in a row, by Cameron Glynn. http://www.mycharity.ie/event/doms_fantasy_football_league/
Thank you for taking the time to read this newsletter and to continue to share in our journey with Dom.