I struggle, but still try to produce Wulf entries on a regular basis. However, there are times when I find it impossible. So, please be patient and try to understand.
It is not a lack of enthusiasm for what I do. It is a lack of energy and working brain. There is a new treatment for Narcolepsy just been approved. It will replace the missing chemicals in my brain and all symptoms should vanish.
- I take a cocktail of tablets just to make it through the day
- No longer earning a living, no longer paying my way
- My dreams don’t wait for night to fall
- They bleed into the day
- For thirty years I mastered computers for a decent pay
- Then I ended up staring at glowing screens, holding sleep at bay
- I used to read data like a language in my head
- See the fault between the columns, hear the things it said
- Now the numbers turn to snowfall, won’t stay where they’re drawn
- Short-term memory slips through open fingers, long-term fades by dawn
- I’m not bored, I’m not drifting, I’m not losing will
- My brain just writes its dreams across the present still
- My brain turns off, the system lags,
- And movement quickly dies
- I don’t collapse. I fade away,
- Awake but coming undone
- My dreams don’t wait for night to fall,
- They bleed into the day
- Didn’t lose my career in a blaze of flame,
- Just quiet marks against my name
- Meetings missed, a fogged-out stare,
- Another look that says “not there”
- They said I wasn’t present,
- Said I couldn’t keep the pace
- But you can’t debug a nervous system
- When sleep rewrites your days
- My brain turns off, the system lags,
- And movement quickly dies
- I’m not lazy, not withdrawn,
- But haunted by those lies
- My dreams don’t wait for night to fall,
- They bleed into the day
- They say “we’re all exhausted,”
- They say “just try harder”
- They don’t understand the body
- That won’t answer when it’s called
- I remember who I was,
- I remember what I knew
- But memory needs the right kind of sleep
- To make the past stay true
- My dreams don’t wait for night to fall,
- They overwrite the now
- I lose the moment as it happens,
- Just trying to stay around
- I didn’t quit, I didn’t fail,
- I didn’t choose this ‘fun’
- This is narcolepsy
- And I’m still here, I’m not done
- I’m awake enough to tell you this,
- Even when the fog has won
- If you hear this song, please hear the truth
- This is Narcolepsy Type One.
Ahh man wish you the best I love these journals but at the end of the day your health is the most important so take care we’ll be here when your ready
The next entry is up tonight or early tomorrow.
Mark, I wish there was something we can do for you. After all the laughter. joy, tears and sadness you have written for us freely over the years and we cannot give anything back. When does the new treatment start? I pray that it works for you.
The new treatment has to go on our Pharmaceutical Benefits Scheme. That could take some time. My current medication costs me $30 per month on PBS. It would be several thousand dollars per month otherwise. I expect the new medication to be more reasonably priced since it is Japanese, not American.