Donegal man inspires with loving story of fiancee’s MS battle

Dungloe man Neil Glackin is making a big impact with his beautifully-written account of the extraordinary life of a young woman with MS.

Susan and Neil

Susan White, the love of Neil’s life, was diagnosed with multiple sclerosis at the age of 17. The young couple met around this time, as Dublin woman Susan’s father Frank and family are from Dungloe.

Neil (28) and Susan (26) grew closer through the years of school, university, work and visits to Donegal. Susan’s MS symptoms and treatments regularly impacted on their lives, but she remained strong throughout and refused to let her illness hold her back. Neil fell in love with Susan’s strength and became more proud of her with every achievement she made in spite of her MS.

Neil proposed to Susan on Mahery Beach last Easter, the same place where they walked on Valentine’s Day as teenagers when Susan’s symptoms first started to show.

The young couple now live in Dublin and are planning to wed in Dungloe next September.

Before this though, Neil has a challenge of his own to overcome.

Neil was so inspired by Susan that he decided to run the 2017 Dublin City Marathon to raise funds for the MS Society of Ireland. As part of his campaign he wrote a moving account of Susan’s story which has had a big emotional response online.

Neil tells Donegal Woman: “We never really told people about Susan’s MS and the effects of it, even our family and friends were hearing about it for the first time.

“Susan has come to terms with her MS a bit better so that’s why she agreed to let me tell her story. You could list off the symptoms of MS but no one really makes the connection. The story shows the human side of MS, while other people are seeing their own MS experience,” Neil said.

Susan’s story has given Neil’s fundraising campaign a boost and motivated him as he prepares to run his first marathon on October 29th. Neil fits training in around his work in banking in Dublin and has been amazed as he already smashed his fundraising target of by over 200%.

Here is Neil’s account of Susan’s story in full, and if you wish to support his marathon click here: https://www.justgiving.com/fundraising/neil-glackin

For eighteen years of my life I had no idea what MS was.

But in March 2008 I found out about the disease multiple sclerosis for the first time and it’s been playing a big role in my life ever since.

Back then I was attempting to woo a girl from Dublin. It was a long distance courtship and a lot of our communication was done over the phone. Most of our conversations were about trivial things — the usual back-and-forth between two teenagers who liked each other. But sometimes the talk would get more serious as the girl on the other end of the line was having some unexplained medical issues.

On those occasions my role was to do some cheering up work and, as I was smitten, it was a task I gladly took upon myself. These diversions into more weighty conversations helped to strengthen our bond and now over nine years later that girl is my fiancée and we are long past the days of long distance.

Her name is Susan. And though she is my partner, she is also my inspiration. Her path over these past ten years has been a tough one, littered with setbacks and unimaginable obstacles, but she has never given up or stopped trying and she has stubbornly refused to let an illness define her life.

On Sunday 29 October I plan to run the Dublin Marathon. My chosen charity is the MS Society of Ireland. My inspiration is Susan. Here, with her permission, I will tell you her story and her battle with MS.

It is uncomfortable at times and words cannot do justice to some of the tough moments she has gone through. But I hope you take inspiration from her attitude and I hope you can also share something towards the fundraising campaign, even if it’s just by sharing this story.

In 2007, at the age of 16, Susan received the first indication that something was wrong. Susan was a sporty teenager and played camogie and hockey. It’s no coincidence both her chosen sports involved holding a weapon.

During a school hockey match Susan suddenly felt as if she was unable to run. She tried moving her legs but to no avail. It was a surreal and terrifying moment, and one she naturally could not understand.

Other symptoms followed. Her hand would shake when trying to write, turning her once neat handwriting into a series of squiggles. She found it difficult to focus her eyesight and her head would sometimes shake involuntarily. Her balance was off. Her speech became slightly slurred at times. And she experienced sharp pains throughout her body including some very painful headaches.

As a result, Susan missed most of her fifth year of secondary school.

Medical tests were run, including an MRI, a brain scan and a particularly painful lumbar puncture procedure.

Susan’s mother Anne was with her for every appointment and every test. Anne has been living with MS since her own diagnosis in 2003. When discussing possible causes of Susan’s symptoms with the neurologist, the topic of MS was brought up. The doctor reassured that if he was a betting man he would bet against it being MS.

While waiting for the results Susan took a trip up from Dublin to Donegal to visit the young man doing his best to woo her. At this stage Susan required a crutch to get around but she was still as positive as anything and steadfastly refused any help I would try to give.

The visit was in February 2008 and coincided with Valentine’s Day, a perfect time to try cement my place in her affections. When we walked the beach she finally let in and said I could link her arm.

She returned to Dublin and we continued our budding relationship via long distance phone calls.

One month later, aged 17 and four months, Susan was diagnosed with Multiple Sclerosis (she later gave that neurologist a thank you letter with a note saying “don’t take up betting anytime soon!”).

On hearing the news I did what anyone in my position would have done, and took to Google to find out more about MS.

Multiple Sclerosis is a disease of the central nervous system which affects the way the brain interacts with the rest of the body. It disrupts the flow of information between the brain and the nerves of the body, which can cause a variety of symptoms depending on the person affected.

By and large it will affect the person’s coordination and balance, which in turns affects almost every aspect of their day-to-day lives.

The cause of MS in a person is unclear, but it can strike anyone from prize athletes to couch potatoes. MS is not defined as a hereditary disease so it is particularly bad luck that two members of the same family should be affected.

The MS Society were one of the first ports of call for Susan to try understand and come to terms with her diagnosis. They produce some brilliant information booklets on how to manage the disease and practical advice for getting by on a daily basis.

They also produce information for people like me explaining the disease in simple terms and giving a guide as to what to expect. All of MS Ireland’s services including counseling and information days were immediately made available to Susan.

There are different types of MS as defined by the medical profession and Susan’s fell into the type known as relapse-remitting MS, basically meaning her symptoms can flare up from time to time before improving again.

Her treatment was to take an injection of interferon every second day.

The injections were to be taken alternately on her stomach and on her thighs. This was not easy. The medication came with side effects including bad temperatures the night of taking the injection. It could also leave nasty bruises on the point of the injection.

Mentally this was a tough time and the hours before taking the injection were the worst. On top of everything else, it wasn’t easy for a young woman to look down and see bruises covering her legs.

However, the treatment reduced the symptoms and the crutch was soon consigned to the attic. That summer Susan spent a lot of her time in Donegal and by extension a lot of her time with me. I was driving a rickety old Toyota Starlet at the time and we would go off to the cinema or the beach or wherever the road took us.

Susan, in her more soppy moments, claims that that was the summer we fell in love.

I had taken my Leaving Cert that June and depending on the results I was either going to Maynooth or Derry. Maynooth was the preferred choice, for purely academic reasons of course — nothing to do with being closer to Susan.

The results came in and I was on my way to Maynooth. Not long after, the 25 August 2008 to be exact, we officially became boyfriend and girlfriend.

That September Susan returned to school for her final year, determined to achieve the best Leaving Cert results she possibly could.

Susan had missed so much of the previous year that her school, St Dominic’s College Cabra, allowed her to drop one subject completely and also helped her by putting on early morning classes and by appointing a scribe to Susan to help her take notes.

Susan threw herself into the task of catching up on her school work and in the end scored an incredible 410 points on the Leaving Cert. This was Susan’s first big victory over her MS.

The points tally earned Susan her first choice on the CAO and soon she was joining me in Maynooth to study Business and Accounting. The transition from secondary school to college was not the easiest. In the smaller confines of the secondary school, teachers and pupils alike were aware of the situation and stepped up to help Susan any way they could.

But college is a different animal. Instead of moving within the same building between classes, you might have to cross campuses in the space of five minutes between lectures. The sheer number of students is much higher and the connection between teachers and students is much more distant than in secondary school.

The course itself was a demanding one. The exams weren’t made any easier by the disease’s effects on concentration and memory. Again, Susan got support from the college through specialist note-takers who sat in on lectures and transcribed them for Susan. She also had scribes to help her during exams.

The Access department in particular was of great help to Susan throughout her time in Maynooth and they helped arrange for Susan to complete her final year over the space of two years to lessen the workload.

Despite all the obstacles Susan again was determined to get her degree and earn another victory over MS. In all aspects this is how Susan has reacted to her diagnosis. She is the most stubborn person I know and she absolutely refuses to let MS control her life no matter what the disease throws at her.

The medication helped the symptoms but simple things we take for granted like handwriting and balance are still affected. Being quicker to fatigue is also a daily reality.

Sometimes new effects would show up out of nowhere. In the summer of 2012 Susan began to complain that the left side of her face was going numb every so often. It would come on at random times and her hearing on that side would become muffled, almost like her ears needed to pop. Susan had met the doctors and they ran a couple of tests, but they said it was probably just another consequence of the MS.

That same summer Susan and I were both in Donegal. Susan loves going for walks and that summer she set a goal of getting up to a 5km distance. So everyday we went out walking, gradually building up our distances.

Sometimes by the end of a walk Susan needed to hold onto my arm for support as her legs would get tired. But as the days went by she was getting stronger and stronger and anytime she didn’t need to link my arm she would proudly boast that she didn’t even need me on the walk.

Eventually Susan surpassed her goal and we walked 5.2km. Susan didn’t even need my help on that walk.

When Susan went back to Dublin and back to the doctor they told her that she had relapsed and this was the reason behind the numb feeling on the side of the face.

This meant she was no longer responding to her medication.

She was told that they would have to review her options and assess which medication would be most suitable going forward. This was a big setback and a real time of uncertainty. The disease becomes very real in those moments. Obviously, you live with it every day but you get into a rhythm and let it interfere in your life as little as possible. When something like this happens it brings the realities of the illness back into sharp focus again.

In those testing moments, something dawned on me. Susan had been walking all summer and had achieved her target of walking 5km despite being in the middle of a relapse.

I don’t think I’ve ever felt as proud of someone as I did in that moment.

In February 2013 Susan’s medications were switched. No longer would she have to take interferon injections every second day. Instead, she would take a Fingolimod tablet daily. There was a great deal of happiness that the injections were gone, but there was still uncertainty over whether the new medication would work.

Thankfully it did and still does, but the whole experience was a stark reminder of the power of the disease.

A couple of months later it was my turn to face medical issues. I woke up one morning with a slight pain in my stomach which became gradually worse throughout the day. I tried making myself sick to relieve it but still the pain got worse and by evening time it had become unbearable. A couple of painkillers dulled the pain somewhat but there was still a lot of discomfort on the right side of my stomach.

It was, of course, my appendix and it was subsequently removed. While I recovered in Donegal, Susan was preparing for summer exams. She had completed one but before her second exam she came down with stomach pains. As she described the symptoms to me over the phone I couldn’t help but feel they were vaguely familiar.

Five weeks after I had my appendix removed Susan underwent an operation to remove hers. This time it wasn’t the MS, instead I joked that it was down to love. If I couldn’t have an appendix then Susan wasn’t going to have one either.

She missed four exams, meaning she would have to take them in the autumn and face a full summer of studying. It was a frustrating time but Susan knuckled down and put in the work. Thankfully, when the autumn re-sits came around there were no problems and Susan was able to complete all four.

One week later she had a seizure.

The seizure came out of nowhere and was the last thing anyone expected. Susan was taken by ambulance to Connolly Hospital and placed in an induced coma. It was a scary moment for all involved and undoubtedly the worst single moment throughout this journey.

The fatigue that came from the stress of the exams mixed with the MS was too much for the mind and body and in turn this led to the seizure. The MS and the fatigue “were having a scrap” as Susan puts it.

When Susan came to, she was understandably shaken up and again questions over the medication surfaced — questions about everything really.

Along with all the other medications, an anti-epileptic was now added to the cocktail as a precaution. Thankfully, the doctors advised Susan to continue with the new MS medication which came as a great relief. After being discharged from hospital, it took a while for Susan’s appetite to come back and she was not allowed to drive for one year, a source of great frustration as Susan was building towards taking a driving test at the time.

Once again, Susan had to find the strength to regroup and carry on. Like always, she did.

Despite missing the start of her final year of college, Susan threw herself into her course work with a fiery determination to earn her degree. Both the winter and summer exams went off without a hitch this time.

On the day the final results came out I was just about to step into work when I got the call from an ecstatic Susan telling me she had passed everything. Over the phone I could hear tears, laughter and just about every other emotion known to man.

A few months later Susan officially graduated and collected her certificate in the conferring ceremony. It was one of the hardest earned degrees NUI Maynooth has ever given out.

To Susan, that was much more than just a degree. That was an act of defiance, a show that no matter what the disease was going throw at her, no matter how many times it would push her down and try to stop her living her life, she would overcome. Throughout her time in Maynooth the disease knocked her back so many times and caused so many problems but she came out the other end stronger than she’d ever been and she earned every little bit of that degree.

The problem is when you come out into the working world, people don’t get to see all those struggles. Hiring managers look at a CV and if they don’t see the first-class results they need they will pass onto the next applicant. The struggles and trials that actually went into achieving that degree are not taken into account.

This was the next battle Susan had to face. She had overcome secondary school and college, the next step was employment. Looking to enter the workforce at a time of high unemployment didn’t help.

There are a lot of dilemmas that come with having a disability like MS. Stepping into interviews there was the question of whether to declare the disability to potential employers at that stage. Would it be seen as a positive or a negative? The pro of course was demonstrating how much fight Susan had shown in earning her degree. The con was the potential for employers to discriminate based on her disability.

We’d all love to say it doesn’t happen in this day and age but in reality there are plenty of employers who would rather avoid having a disabled person on their books, though of course they would never admit it.

Susan is not the only one facing these problems. According to officials figures, less than 50% of people with MS in Ireland are in employment, while the EU average is almost at 70%.

Susan, being Susan, found her way and is now employed in the public service, though those struggles are not forgotten.

In August 2016 Susan moved out of her family home for the first time — a very brave move considering the comforts of the home and the familiarity. It was even braver considering she was moving out to move in with me. But again, she wasn’t going to let MS dictate what she could and couldn’t do.

On Easter Saturday this year we went back to the beach where Susan had first allowed me to walk with her arm-in-arm and I asked her to be my wife. In doing so, I was also committing myself to a life with MS. There are three in this relationship but generally we ignore MS as much as possible and we don’t talk to it if we go out on a date. It’s just, kind of, there.

And though there may be advances in treatments and medications in years to come, it will always be there. It will always be a big part of our story. Susan and I argue like any other couple, we have stupid fights. But the diagnosis of MS and subsequently living with it everyday has strengthened our bond and it forced both of us to grow up very quickly.

The MS Society of Ireland has been a great resource throughout it all. As mentioned above, they produce brilliant booklets to help those diagnosed understand the disease as well as providing information for families and loved ones.

When Susan goes to Beaumont Hospital for her twice-yearly check-in there is always a representative from the MS Society going around to all the patients in the waiting room seeing how they’re getting on and finding out if there’s anything they need help with.

From dietary and wellness information to physio services, MS Ireland do everything they can to help those affected by the disease. But they are also constantly battling against the tide.

Approximately 9,000 people in Ireland suffer from MS and they all need help and support. So do the people around them and when you add all of us in the actual number of people affected by MS is much higher.

In order to help MS Ireland continue the trojan work they do I will be raising funds for their cause by running the Dublin Marathon.

I want to help the people who have helped us so much and I am asking you to help me by donating to the cause through the website listed below.

And if you can’t spare anything financially I ask you to share Susan’s story and help get the word out there. Any help is greatly appreciated.

Susan is the strongest person I know.

Of course, sometimes the disease and its effects get her down, sometimes it makes her angry, sometimes it can be a scary, scary thing. But after every setback Susan dusts herself down and gets back up.

And she has never lost her razor-sharp sense of humour. She has never lost her smile. Most importantly, she has never lost her attitude. The attitude that tells MS where to go and allows her to keep living her life.

That’s why I will be running the Dublin Marathon on 29 October for her and for everyone else affected by MS.

Please donate through this link – https://www.justgiving.com/fundraising/neil-glackin

Visit Neil Glackin’s blog page here: neilglackin.wordpress.com

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