Vortex: a place or situation regarded as drawing into its center all that surrounds it.
My previous post provoked an interesting discussion.
Is the mind, and how it reacts, our most powerful and potentially damaging MS symptom?
Thinking about Viktor Frankl’s book ‘Man’s Search For Meaning’, perhaps it is. Suffering the most appalling, inhumane abuse in a concentration camp during World War II, Frankl chronicled his experiences which led him to discover the importance of finding meaning in all forms of existence, even the most sordid ones, and so a reason to continue living.
He noted that fellow prisoners who concentrated on what they had lost fared the worst; the ones who concentrated on the here and now, despite the horrors of their daily existence, survived. Even in the most absurd, painful, and dehumanized situation, life has potential meaning.
I am using an extreme example here for a reason. Our ‘suffering’ is relative to our life situation. MS is for most of us disruptive, unplanned and unwelcome. It can be a vortex of fear and misery. Our minds gallop away with us, far beyond the actual physical symptoms we may be experiencing.
Hence my blind panic when a new symptom reared it’s head last week. Rather than placing it in context, my mind immediately concentrated on loss. On suffering. On the ‘what if’ scenario. I made myself miserable. My mind’s interpretation of this symptom was far more damaging than the symptom itself.
Perhaps, rather than concentrating on each new or return of old symptoms (and the fear that accompanies them), we should be aware that by harnessing our minds, our vortex of emotions, we can gather ourselves in and experience them for what they are.
I have a lot of physical symptoms. And by focusing on them alone, I have ignored how I have reacted to them. No one talks about the MS Mind as a symptom, apart from informing us that MS can cause depression. It is a subsidiary to MS. Yet, if we can strengthen our mind impulses and our tendency to imagine the worst case scenario, could we live more peaceably with MS?
We cannot change the cards life has dealt us. But one thing I am learning is that I can change my perspective. Strengthen the mind and we can cope with anything.
I just scrolled all the way to the bottom of the page to leave a comment for you, and now I’ve completely forgotten what it was that I wanted to say!
But I’ll be buggered if I’m just going to close the window without saying anything so: Hello, and thank you for your wonderful blog that sometimes makes me want to post things that slip my mind as soon as it comes to getting it out!
Aw, thank you!
I know the feeling, believe me.
x
No need to strengthen the mind, just don’t buy into it’s crappy story lines. Our thoughts are the lens through which we experience the reality of ourselves and everything else. In meditation we simply watch the story lines come and go without reacting to them. They soon dissolve.
Our thoughts are conditioned by our experiences. But those experiences are no longer present, so our thoughts formed by them don’t necessarily serve us any more, and may even make our current situation difficult, so let them go. I know it is easy to say but for me meditation has been very helpful. It is used in many settings as a therapy, for instance PTSD suffered by military personnel. Some people are willing to try, some aren’t. It is a very personal thing.
For me, letting go of thoughts has been more productive than trying to control or change them.
Sadly, I do seem to buy into the crappy story lines.
Hence my need to strengthen the mind.
Letting go and ‘allowing thoughts to arise and acknowledge them’ is a big part of meditation and one I am dipping my toe in to. Viktor Frankl was perhaps echoing the Buddhist tradition?
x
When I was first diagnosed with MS I was devastated, worried and all kinds of thoughts went through my mind. After a few weeks I made the decision that as I was unable to control the MS there was no point in worrying about it. What will happen will happen. Sure I occasionally get frustrated with things I can’t do any longer, but basically I adjust my life as things change. It’s SPMS that I have so don’t have to deal with major episodes so maybe it’s easier for me but it don’t let it depress me.
A great comment, thank you! You’re right – it’s about adjusting our lives to the ongoing changes.
I think my problem was that I was stuck in the ‘loss’ part of grieving, rather than adapting to a new way of life. So when a new symptom popped up, my reaction was way out of proportion as I hadn’t accepted previous symptoms fully.
x
Hello,
Being made aware of what MS cost me was always deeply depressing. My desk used to look out onto the street and seeing Dads carrying their young sons on their shoulders while striding up the hill always made me depressed, MS had made such activities imnpossible. I ended up going to a counsellor.
These days I am too preoccupied with trying to make my website aid4disabled successful to have time to glance out of the window. The website gives my life a purpose or meaning. It also stops me dwelling on the past and ‘might-haves’.
The mind must be allowed to grieve and mourn MS in the same way that you mourn a death or any other emotionally tragic event but eventually you must accept it. Only then can you move on and allow the mind to develop new ideas.
So yes the mind is potentially the most powerful and potentially damaging MS symptom. The power of the mind can be harnessed in rewarding ways once MS has been accepted.
Its worth Googling the Kubler~Ross model http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model It makes a lot of sense to me.
Hi Patrick,
Absolutely, we must be allowed to mourn, but there must also be a time (like you said), to move on. You did exactly what Frankl talked about – finding meaning in life. Without it, we are floundering.
The Kubler-Ross model is brilliant, and worth anyone looking into if they are still going through the whole range of emotions with regards to an MS diagnosis. I wrote several essays about it at uni!
x
My consultant has added Anxiety as another part of the Kubler Ross cycle. I think anxiety is something that is always there. Even now when I have gone through the problems and accepted MS the uncertainty and anxiety are still there, almost like a monkey on my shoulder.
I’m an ‘expert patient’ at his conferences, My talks are ‘the MSer who has frequent falls’, I talk about the mental angst an MSer endures as well as talking about walking & falling over
I love that phrase ‘monkey on the shoulder’. It truly is. Life with MS is totally unpredictable!
x
Great post Stumbling! I go through whole ranges of emotions on a daily basis. I think part of my problem is that I’m sometimes still in denial. My symptoms are so mild at the moment, it’s easy to pretend I don’t have MS so when I have MS moments and symptoms, it’s like being told I have it again for the first time and blind panic ensues.
Will I ever reach the calm acceptance phase? I hope so. I refuse to live my life in fear.
Best of love
x
Thank you!
I think you’re very similar to me. Since the Campath, although I have a lot of symptoms, they are under control and almost part of life, so when I get a new and unexpected symptom, I go to pieces!
The Kubler-Ross model that Patrick mentioned in the comments is great at explaining the five stages of grief. Although, I think as MSers, we are constantly going through the five stages as each new symptom or loss arises. Tricky.
x
As always a very interesting blog. I’m sorry I haven’t commented sooner to your previous blogs and I hope that you new symptom hasn’t got any worse or is starting to improve. The mind is a funny thing. I’ve lost some hearing in my right ear. I thought maybe it was the start of a cold but no cold has materialised so the mind has been in overdrive. However I’m trying to be sensible and the logical side of me says ring my GP and just ask him to check it. After all it may just be too much wax lol
Hi Angela!
The foot comes and goes, so to speak. Kind of getting used to it now! I really hope you get your ear checked out.
Not the same, but a while back, I used to wake up every morning half blind in one eye. I panicked (of course), was sent to the experts, but they could find absolutely nothing wrong. The symptom disappeared a couple of months later. Most odd. No idea why it happened!
x
Strange things happen all the time and you start to wonder is it my age, my hormones, NMO / MS
Do I ring do I not ring …. I know I’ll just wait and see what happens . It can drive you mad …
It sure can! Just last night, a whole section of my arm went completely numb again. More than likely the MS. If it’s not one thing, it’s the other.
Sure does drive me mad!
x
YES! to all of the above. I don’t think it helps that holding a positive mind is often regarded as being “in denial” or holding “false hope”. It is not. It is a healthy response to illness and its impact occurs despite the severity of illness – because it is about hope. And the way hope nourishes us; spiritually, psychologically and physically. It’s an important conversation that more people should be part of.
thanks for sharing this
Thank you! Couldn’t agree more!
I do get down (as you’ve probably read from my blog), but I try really hard to stay positive. I think in some ways, allowing myself to stay in a depressed state is more a sense of denial (of life) than being positive is, if that makes sense.
x
A runaway imagination is good for creativity; very, very bad for remaining rational when it comes to illness. It took cognitive behavioral therapy for me to help put the reins on my over-active imagination as it relates to medical issues. Not that I’m 100 percent in control of it; it just helps to remember that even the most ancient and desiccated old brain (e.g., mine) can play mean tricks on you and that there ARE ways of managing it.
So happy to hear you’re feeling a bit better about things.
Thank you!
I try very hard to use the mindfulness techniques, reigning my runaway imagination in and concentrating more on the present moment. Getting there slowly but surely!
x