Running for Meningitis - My Story

I received the news this week that I have been accepted to run for the Meningitis Research Foundation in the NYC Marathon 19 in November. As a survivor of the illness this is something that I will take immense pride in being able to raise awareness for the MRF. 

This year marks 20 years since I was almost killed by the destructive infection and escaped death by a mere few hours, having been taken ill with meningococcal serogroup C (meningitis C). Meningitis is the inflammation of the membranes that surround and protect the brain and spinal cord and the onset can be extremely quick, some bacteria that cause meningitis can also cause septicemia. It is essential to know the signs and act quickly as the right actions can be lifesaving. It is still the second largest infectious killer of children under 5 globally.

I also lost my Uncle Jimmy to this deadly disease before WW2. I never got to meet him as he was taken prematurely at just 8 years of age and my father was only 1 when he passed away. 

In the last few years I have become a father myself to two beautiful twin girls, which has greatly shifted my outlook on life. It again brought to the fore the consequences this sickness can have on babies and young children and the importance of immunizing and protecting them, similarly being starkly aware of the pressures it must have had on my parents back then. 

Over the years it is something I have not really engaged in talking about at any great length and have only recently really started to take the time to consider about what effects emotionally, physically and mentally it may have had on myself and indirectly the life and decisions I have made post illness. 

I was 16 at the time and had just been away in Barcelona with my family. I had not really felt the best but at the time we probably put that down to my age and potentially being out with my friends more than I should have around that period. It was not long after this I fell ill very quickly one evening post trip and was dismissed by the GP as just having the flu. Although in their defense the awareness then is not what it now towards the illness and symptoms it is now. 

Following this I remember being at home supposed to be doing my homework, yet talking to a friend on the landline and this is pretty much the last moments I remember clearly. I was then informed later that a doctor had come to the house, as I had gone become increasing confused and delirious with an extremely high fever, I have no recollection of this at all. It was then I was taken to the Royal Liverpool hospital by my parents, on the advice from the doctor. I have very short snippets of memory and a sense of the illness overwhelming me that I still struggle to describe to anyone who asks about how it feels.

It was then that they took me into a room later and performed a lumbar puncture. My father was convinced it was Meningitis and pushed the doctors to act, as they at first said they were not able to perform without assistance. The CSF (cerebrospinal fluid) came back cloudy which often shows a low sugar (glucose) level along with an increased white blood cell count and increased protein and this confirms the diagnosis. I recall being turned over for the needle and then another brief moment subsequently in an ambulance whisked to Aintree hospital.

I spent several days in ICU coming in and out of consciousness. This period is something that is much clearer and will never forget, I was given a 10 per cent chance of survival. It is not possible to describe the pain and illness in this stage it’s something that still haunts me to this day and no other sickness comes close. Being in the ISU for that amount of time you are conscious of families coming in to see loved ones, only to awaken later to see an empty bed and you know that person has not got home, even in the depth of illness the clarity of all this is still extremely prominent.

The staff in ISU where unbelievable, one male and one female nurse in particular were the most helpful and caring they could be. They were a credit to their profession and the NHS, to which without it I wouldn’t be here today. I wouldn’t even recognize them if I passed them in the street but in my heart I will always be eternally grateful to them and all the other their colleagues that helped me at my most vulnerable time. I was supposedly asking my father whether I was going to die at this point, even though he had been told there was a slim chance of survival he still kept saying no and perhaps giving me the hope subconsciously to get me through. I also later learnt that my parents were called into hospital one evening as the doctors did not think I was going to make it. Now being a father myself I can only begin to understand the devastating emotional effects this must have had on my family. 

Fortunately, I managed to pull through and following a few more days on ICU. I then spent 2/3 weeks in the quarantine ward where I slowly began to regain some sort of energy and was eventually let home. The rest of the year was difficult in school and I struggled to concentrate in class for any long periods and was off for several months. I still personally now suffer from concentrations issues especially with trying to sit down and read a book, I often have to repeat the same page over and over and a lot of the time give up. However I know am one of the more fortunate ones as the post illness outcomes can be devastating, including loss of limbs and deafness. 

I feel that the whole distress has shaped my thinking towards a lot of things throughout life. Some I am aware of and others not so much and I think post a major trauma of this nature it would have probably be good to talk to someone professionally as there are deep subconscious feelings you tend to keep to yourself from an experience like this, so perhaps I still should. As my father said even with Jimmy, it was never really spoken about after with anyone. Something that has come on with generations.  

I cannot relate to somethings anymore like perhaps if there is anything after life due to the infinite blackness that still sticks with me now form my time in the ICU. Yet, this has also made me a much more spiritual being and I believe in good energies, staying positive and finding the good in what you and others do. Trying to treat everyone with respect and living every day as full as you can. 

It will be an honour to fundraise for the Meningitis Research Foundation and if it saves one life or gives someone the self-belief that there is life after the disease then that is something. Raising awareness and giving people the knowledge of what to look out for and act quickly can save lives and hopefully we can push to a goal of a world free of Meningitis. 

My heart goes out to anyone who has ever lost anyone or been effected by this terrible illness. X