This two-worded dialogue with the three pounds of grey blubber that was my
brain cerebral damage, lasted just a few minutes, and clearly, my cognition would never be the winner.
Sadly, ‘trying not to forget’ is one of my disqualified projects that are still trying to claim control of my MS-ridden body 13.5 years post-diagnosis. So naturally, when asked to describe memory issues, I say with a poker face, “I cannot remember!” only to realise the pun while watching a film about dogs five hours later.
My otherwise zealously executed attempts failed to return to my positively inspired attributes the past four or five weeks. So please, bear with me as I try to untangle above mentioned blubbery MS-mess with you as my weeks feel rather Trumpian, where one day in the life of #45 feels like a year to the rest of the world. And in a similar nonsensical Trumpian fashion, things go equally off-script every second sentence.
Long story short, I think I lost my Zen.
It’s been such a flabbergastingly awkward period, it would not surprise me -AT ALL- if my Zen is trying to find its own Zen.
Yes, that dumbfounding.
Knowing my predilection for Murphy‘s Law should I fail to find it yet again, it will hit me on the bad side of my face which is, in fact, the good side where trigeminal neuralgia has kept my face kinda dentist-numb for a few days.
Or should I have given my bad side first?
Or the good one? Bad o…?
Several medical appointments were on the menu, as were two advocacy events which all passed without my attendance. Nonetheless, I am alive, albeit barely by the looks of my bedside cabinet: three drawers filled a new monthly batch of pills to target all sorts of MS symptoms; as well as backup medicines, and backup for the backup meds.
Just in case.
Despite having my inner dialogue running into philosophical mayhem, I’ve been trying hardest to get things on paper. Sometimes it is rather difficult to grasp how unspeakably quick, indelible and distracting multiple sclerosis can become, only to disappear for a few hours before returning. As such, parameters on what I perceived to be acceptable have been reset, and my inner dialogue needs a fix as an intuitively sharp anguish took over my mindset last week.
When a gut feeling like this takes hold, I go into self-imposed hiding into my water-filled shell in a true Cancerian manner, forgetting phone calls, emails and text messages with the outside world. What follows is words and wisdom channelled by Nescafe Toffee Nut Latté, and I write as a perfect therapy to place that intuitive curse, aided by meraki.
But, as I’m trying to make light at the moment about some of the reasons why I have been offline recently, another more painful event last week added to a tender mindset upon hearing my Uncle passed away. There are so many things I still wanted to talk about with him, but time moved faster than we all would’ve liked. As I sit here, tears are filled with hope that shared memories will not be forgotten.
Over the past decade, our family has given back more people than some over a much longer period of time. Looking for solace and peace in such sorrow becomes harder and more pressing. On the other side of the spectrum, acknowledging death as an intrinsic part of life -and indeed my life- has become part of who, what and why I am the person I am today. Especially after a brush with a superbug a decade ago, I allow myself more time to wonder about mortality on a philosophical, metaphysical and psychological level.
Undoubtedly, having a counselling diploma with merit hanging on the wall comes in handy; if only I can finish my advanced CBT course now. My Zen will be well-treated when found.
Even my tired is tired.
I doubt dunking my head in a sink filled with espresso coffee will help.
Ergo, what the hell is MS up to?
It seems like I handed myself a poisoned chalice when I asked my neurologist for a change in disease-modifying treatment because I felt I had passed the sell-by date on how long one should remain on a particular DMT. Remember how I bragged and compared the number of daily injections I would skip had I stayed on the weekly brand for the next eleven years? (The post itself now finds itself in the final of the Blog Awards Ireland 2018 competition so someone is getting something out it, so loving it!)
For the last six months, MS has taken me on a physical ride that still reminds me of those early diagnosis days when I was afraid of taking control of my disease progression.
The saddest thing of all?
I pinned my hopes and dreams on being somewhat normal again.
But, I cannot remember what being normal feels like.
Was it when going out for a meal felt like the best thing ever and being kicked out after four hours because we were the only ones left by closing time?
Concerts without needing to be dragged out of a U2 concert pit because the light show made me faint, caused by a different kind of vertigo altogether?
Sitting in front of a Caravaggio for an hour without falling asleep after ten minutes?
When I still had enough energy to study psychology after work?
Or those long night-time chats with female friends because they once again met the man of their dreams yet he stopped replying to their texts two days later?
Or worse, was being healthy when I tried to decide which to wear: black princess skirt number one or black princess skirt number four, before deciding I would wear black princess skirt number nine.
Of course, such emotions are just a few of those that have tried to subdue me this year. I gung-ho’d the earlier emotions half into oblivion, just like I will with this batch. Anyone who knows me will have met the impatience for my own
disabilities otherwise-orientated-abilities, aches or pains. Life goes on, but sometimes, just sometimes I want to go back to the time where worries about incurable, neurodegenerative illnesses were the last thing on my mind.
Thankfully, I can still inject a joke or a barrel of laughs to life to remind myself that it’s meant to be lived.
- Understanding Psychosocial Adjustment to Chronic Illness and Disability
- Kessler Foundation joins international study to improve cognitive dysfunction in MS
- Multiple sclerosis information for health and social care professionals
- Writing as a form of therapy
- The power of writing: 3 types of therapeutic writing
© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2018. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and irelandms.com with appropriate and specific direction to the original content.