One in a Million

One in a Million

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Susan Daly was never really an athlete. In the early 90s, she joined Run/Walk for Life and used to plod around Patterson Park in Norwood. She did a couple of 10km runs, but the running bug never bit.


We have two children. Ciaran, our son, is nearly 13 and Heather, our daughter, is 11. Ciaran is autistic
and severely epileptic. His epileptic seizures started at fi ve months and 12 years later, they are still not under control. We have been to many doctors and specialists from Cape Town to Manchester to try and find the cause of the seizures and an effective means to prevent and control them. Over time, Ciaran’s
seizures have ranged in length from a few minutes to two hours. Fortunately, the very long seizures are
now infrequent, but he still has about fi ve to ten seizures a month. Each seizure differs in severity; the more severe ones are life threatening and on many occasions as we have sat in the emergency rooms at
hospitals, we have felt ‘this is it’ and ‘it is just one too many.’ Ciaran fi ghts on and bounces back. As you can imagine, this takes an enormous toll on Susan, our daughter Heather and me.


Unfortunately, the number of seizures and the medication have also taken their toll on Ciaran. While he is a happy and loving child, the brain damage from years of unrelenting relapses and medication have caused retardation. Ciaran, in addition to being autistic and epileptic, functions at a three to four-year-old’s level. At this point, you may ask, what is the relevance of this to Susan’s running? Let me explain.


In September 2002, we were in Cape Town with Ciaran to undergo another barrage of tests. He had had over 200 seizures in six months and we needed to investigate, to determine whether he was a candidate for brain surgery. It was a traumatic time for us as a family. He was only six and looked so vulnerable as he bravely underwent the tests. The process entailed taking him off his drugs completely (‘cold turkey’) to induce seizures and then watching and waiting 24 hours a day for them to come. Ciaran does not have the cognitive ability to understand what is happening. In some ways this is a blessing but in another way it is terrible. You can’t explain to him the process and he is so trusting; we often feel that he is the innocent lamb that we are leading to the slaughter.


The tests established that Ciaran’s seizures were far too generalised and extensive to operate on. We packed up and left Cape Town to drive back to Johanesburg, very dejected and depressed. I remember starting our journey back to Jo’burg fi lling up at a Shell petrol station in Claremont, near the Vineyard Hotel.


Many of you may know it, as it is close the start of the Two Oceans. The petrol attendant kept
staring into the back of the car and eventually asked us, “What is wrong with him?” At fi rst, we were not sure what he meant, until we turned back to look at Ciaran. He looked terrible. He had patches of glue all over his head from the EEG wires and he was drooling and sitting, blank-faced, in a catatonic state. His eyes were dull and he looked so sad and vulnerable. The little boy, who had gone through so much and always seemed to bounce back, looked defeated. Susan and I looked at each other; we both knew what the other was thinking.


The petrol attendant’s question stuck with us throughout the drive back to Jo’burg. What was wrong with Ciaran? Why couldn’t the doctors bring his seizures under control? How much more pain and how many more seizures could this little boy endure? Where to from here? The possibility of an operation had
been, in many respects, our last real hope and now the situation seemed hopeless.


After the first few days back in Jo’burg, Susan received a call from one of her friends, Mad Kelly, a member at RAC. Mad told Susan that she needed to get out and come for a run to help her refocus. At that stage, Mad had run nine Comrades and eight Two Oceans. The next morning, Susan reluctantly met Mad for their fi rst run and, as they say, ‘the rest is history’. Susan set a goal: she wanted to do the Two Oceans before she turned 40. She did her fi rst Two Oceans in April 2006, a week before her 40th birthday. She did the Two Oceans again in 2007, missed 2008 and did her third Two Oceans earlier this year in her best time of 6:10. She said that she would need to do Comrades one day because in South Africa (her words not mine), “You are not a real runner unless you have done Comrades.” In April this year, we went to Mauritius for a ten-day family holiday and Susan did no training other than a couple of short jogs with her ‘not a real runner husband’ and one session on the hotel treadmill. A few days after we returned from Mauritius, Susan announced that she was going to run Comrades. I joked about which year she would be doing this, to which she replied, “This year.” Comrades was less than four weeks away!


The Sunday before Comrades, Ciaran had a severe cluster of seizures. Susan was at home alone with Ciaran, as I had taken my daughter and a friend to the IPL Cricket at the Wanderers. Susan realised
she had to get him to hospital as soon as possible, as the seizures were becoming more and more frequent and severe. She did not contact me immediately because she knew I was at the Wanderers
and would panic, and that it would take me an age to get home. At this stage, Ciaran was semi-conscious and a limp dead 40kg weight lying on the fl oor. Susan tried to pick him up but found she couldn’t lift him. With some serious prayer and a miraculous surge of strength, she managed to pick Ciaran up, carry him into the car and rush him to hospital. She phoned me as she was leaving and I left the Wanderers as quickly as possible to meet her at the hospital.


As we were standing in the emergency rooms with Ciaran still having seizure after seizure, we looked at each other and asked our usual question: will he make it or is this one too many? After a few of hours, the doctors managed to get the seizures under some form of control. Ciaran would not settle that night
and shortly before midnight, I told Susan to go home, that I would stay the night with Ciaran in the hospital. All I could think of was that in less than a week, she would be running the Comrades and her health and rest were essential. She refused at  first but after much debate, I persuaded her to go get some rest. The week leading up to Comrades was extremely diffi cult. Susan had strained her back lifting Ciaran and he took a few days to recover. To put it mildly, Susan had not been able to have the quiet, calm, restful week recommended to allow her to focus on the Big Day, 24 May.


I must admit that I was doubtful that Susan would complete the Comrades, not because she couldn’t do it. She had shown her ability and courage in the numerous marathons she had already completed. My doubts came partly from the fact that she had not really trained to run the distance but mainly from the strain of the events of the week leading up to the Comrades. Heather and I were lucky enough to support Susan at several points during the race, but when I saw Susan enter Kingsmead shortly before 5pm on that day, I was fl ooded with mixed emotions, including absolute relief and pride. I was relieved,
as I know how focused Susan can be and I was concerned that she would push herself too far. I was with Heather, Ciaran and Susan’s sister and brother in-law, who had travelled with us to share the experience (and to look after Ciaran as he would not have managed to follow the route with us). We all stood there with tears running down our faces, all of us except Ciaran who simply smiled at Susan and said, “Hello mommy”. He was the only one who could not fully comprehend what Susan had achieved and how far she would go for him and her family.


Susan’s running is so much more than ‘hitting the  road’. It is inextricably linked to her journey with Ciaran. Night after night she packs her running kit for the next morning’s early run. Each night, she goes to sleep not knowing what kind of night Ciaran will have and whether she will be able to run. This does not deter her. If he has a good night, she wakes up and runs, if he has a ‘bad night’, she doesn’t run. But she never uses this as an excuse. The fi rst thing she checks on her return from a run is whether Ciaran had a seizure. As soon as she hears him say, “Hello mommy”, her face visibly eases. If she does not hear ‘his call’, you can see her pain. It never changes and it never gets easier.


Here is an extract from an email Susan sent to parents at Ciaran’s school who were experiencing difficulties with their daughter. I found it so inspirational. It expresses perfectly Susan’s philosophy of how she follows her calling to run ‘the ultimate human race’ called life.


“We know that we are only able to get through all things because we are enabled by the Father who loves us immeasurably. It is a long, long road we walk with our children and we never know what comes around the next corner (or whether we are simply going ‘around the bend’!) but we get up again and again to take it on the chin. Someone asked me on Friday this week why I never seem to get down or why I seem to keep smiling. In ALL HONESTY, I replied that it was because perhaps I hadn’t faced adversity and that is why I cope with life. I have to tell you that she just STARED at me like I had lost all my marbles. I realized what I had said and how my crazy strange life with my epileptic autistic boy… is so inextricably bound in the hand of my loving Father that I really DO believe our lives are charmed. I quickly realized why she was staring so much and said – oh yes, I suppose I have faced some challenges.
This past Sunday, I ran my fi rst Comrades Marathon. I started running in September 2002 after Ciaran spent fi ve days in hospital in Cape Town undergoing treatment to determine whether he was a candidate for surgery. He wasn’t, but it was an extremely diffi cult time as he was left like an ox – very little going
on. We have seen him grow and leave those dark days behind, although we know something of his capacity was diminished in that diffi cult year (200 seizures in six months). When I returned from that hospital trip, my friend insisted I run with her. Look at me now! Last Sunday, a week before Comrades, Ciaran developed a succession of seizures that required me to take him to the ER. I was alone but managed to carry him (all 40kg) to my car by repeating out loud, “It’s just a hill!” as I struggled. He went on to spend the night in hospital because he continued having seizures, fi nally ending with a status seizure of 30 minutes. This Sunday, I ran the Ultimate Human Race. Part of the route takes you past a school for the profoundly disabled (I guess our kids qualify). I kept to the middle of the road simply because I was so overcome by their strength that I couldn’t breathe. I knew I had to, I still had far to go! It seems our race never fi nishes; there is always a corner, a hill, a valley or even a straight and easy track. Sometimes, I forget to look up and blindly follow the feet in front of me but every now and then I lift my head and see the mountains and valleys around me – it helps to look up!”


When Susan is not running or looking after her family, she spends her days tirelessly dedicated to helping others. She heads up the fund raising efforts for Kids Haven (a charity for street children) and she is also actively involved in Aqua (a school for autistic adolescents, which she helped to establish with two other families). I know there are so many Comrades runners who have their own stories of how they have overcome adversity to achieve what they have achieved. To a ‘not real runner’, just completing Comrades is an achievement in itself. Susan’s story is an amazing one. Completing her fi rst Comrades in 10:58 is a great achievement under ‘normal circumstances’ let alone with the challenges Susan faces on a daily basis. She is an inspiration to so many. Keep running Sue.

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