Grief is Exhausting

Today marks the 13th year of the unexpected passing of my eldest child Daniel. Daniel was a perfectly healthy 16 year old teenage boy; there was no reason for me to suspect that the 10th of December 2007 would be the last time that I would see him alive. On this day 13 years ago I joined a club that I never applied to become a member of, I became a bereaved parent. A bereaved parent has no official title, when a partner dies you become a widow or widower, when a child loses both parents they become an orphan, but nobody has given us bereaved parents an official title, perhaps because there are no words to sum up the horrific reality of such a devastating loss.

Having survived Daniel’s death has made me stronger, harder, and in all honesty a completely different person than the one I was previously. I also believe that this tragedy was the catalyst to the decline of my brain as I knew it. My brain had suffered so much on top of living life, since childhood, of being constantly sleep deprived. The grief that parents go through is exhausting, the first year is mostly a haze of muddled memories, I barely slept, and in fact I barely functioned at all.

My work was very supportive during this time, and they made more allowances than I could have possibly expected. As my Area Manager at the time explained to me, I was the first staff member that she had go through this and she simply had nothing to compare to as to how to approach my grieving and return to work. When I returned I found it very difficult to arrive on time or stay all day, my mind wasn’t focused at all and everything seemed to be so much harder to do. I was able to arrange to work from an office that was closer to home for a while, but eventually I had to return to my team who were located in the city. I went back to the job that I had always loved doing but I couldn’t cope with the travel and the fact that I was petrified that something might happen to my other children every time I wasn’t with them, it was horrible and I didn’t know how to make it better. Eventually I made the decision to relocate permanently to the office that was closer to home which meant changing roles and thankfully the Manager at the office at that time was able to create a position so that I didn’t have to drop down in level.

After the demyelinating attack on my brain in 2013, right up to last year when I experienced for the first time in my life what it was like to wake up feeling as though I had slept (thanks to the drug trial medication) I had been grieving the loss of my brain’s ability to function as well as it always had. Since gaining extended access in May this year to the trial medication, I now find myself grieving the brain that I never got the chance to fully utilize. When I look back at all of the amazing things that I have managed to do personally and professionally whilst being undiagnosed with narcolepsy, I can’t help but wonder what life would have been like if those symptoms had never started back when I was 9 years old.

So today I find myself revisiting grief, grief from the loss of my beautiful son, and grief of the loss of the brain that I never truly got to know.

Have you experienced extreme grief? How did you cope?

Thanks for reading, until next time.


(1) The 5 Stages of Grief & Loss

The 5 stages of grief and loss are: 1. Denial and isolation; 2. Anger; 3. Bargaining; 4. Depression; 5. Acceptance. People who are grieving do not necessarily go through the stages in the same order or experience all of them.


Published by Di Spillane

I am a musician who enjoys sharing the stories of other musicians, interviewing them to discuss their musical journey from its early beginnings right through to present day. I research, host, edit, and then release a weekly episode every Saturday morning. My listeners are musicians, music lovers, and people who enjoy listening to real stories about real people. It is a rare opportunity for a musician to discuss their entire journey with an interviewer who allows them to speak uninterrupted. Real people discussing Real stories is what Band It About is all about!

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