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Ruminations with Rumi…

I feel like I’ve been fighting my whole life. There is a war that rages between my physical deterioration and my mental or emotional strength. The weapons used are cruel, there is little respite and the stakes are fricken enormous.

Rumi referred to emotions – all kinds of emotion – as “unexpected visitors”. Rumi thought we should let these callers in and let them visit with us for a while. Give them a cup of tea and get to know them type thing. This concept from the 13th century passed the stiff upper lipped British by. Why do we feel the need to be restrained and remain resolutely defiant when an emotion comes calling?

Rumi writes beautifully. Well, the way he has been translated from Persian to English is beautifully done anyway. I’ve only relatively recently been introduced to his writings and they resonate with me pretty deeply. I read all sorts for all sorts of reasons.

I read because I desire to understand. I read because I want to learn. I read because I need to get lost in a world that isn’t mine. I read because I long to escape. I read because I must. I read because I can. For now, reading is an ability that has escaped the tortures of my mind and body. Reading takes it all away. It’s my shelter and my comfort. It reaches into my soul and makes it laugh, makes it think, makes it feel invincible and makes it forget. Reading nourishes me. Language fascinates me. Evolving language, at once, gives me joy and makes me long for the days when Mr. Marshall taught me that “focussed” has a double s!

When I hear someone describing reading as boring, I can only think it’s because they haven’t found the right book yet. Going back to Mr. Marshall for a minute (he was one of my English teachers at school), he always said there was no such thing as a boring activity only boring people. I’ve turned that over in my mind a lot over the years between him first saying it (he said it a lot) when I was 14 and now when I’m 46. I came to the conclusion a few years ago, that what he was trying to say is that everyone is different and will feel differently about every activity, be it reading, playing football, singing…whatever. That means the activity in itself cannot be described as boring. Boring people, however, are those that choose not to engage in any activity at all. That’s what I think he meant. He’s dead now though, so I can’t ask him. I wish I had at the time. But, well, if wishes were horses, beggars would ride.

Anyway, I’ve digressed. I do that a lot. So, why do we find it so difficult to sit with our own emotions and acknowledge that we have them? Are we conditioned to believe that we should only feel positive emotions? Are we only allowed to feel happy, excited, thrilled, delighted, amused, loved, loving? Why do we feel its ok to acknowledge that we feel angry about something but not that we feel hurt by it? Why do we feel it is a weakness to be able to show vulnerability, but at the same time not be shocked when we get hurt? Why do we see it as inevitable that if we display an emotion that is not perceived as socially acceptable that we will somehow be thought of as a lesser person? Who decides what is socially acceptable??

My experience of showing emotion has not always been positive. I didn’t show my true feelings for years after I was told that my tears were pathetic and weren’t going to be put up with. I was 15. In order to swallow down the emotions I felt (& god knows at 15 I felt them ALL), I built some bloody fantastic walls. My grandad, a builder, would have been mighty proud of my structures. The wolves were not going to huff and puff and blow my house down! My house. There was no door. There didn’t need to be. I wasn’t coming out and you weren’t getting in. Simple. I was described as having ice water running through my veins. Apparently, it was discussed at length by people other than me, that I felt nothing. I felt baffled by this. If I showed that I was upset or hurt or confused or in pain then that was wrong, but if I showed nothing at all then that’s wrong too?

As a consequence of this inner conflict, when my emotions burst out of me as they are want to do, they were generally inappropriate. I couldn’t control them. I tried to channel them in the various sports I engaged in, although I didn’t know at the time that’s what I was doing. I was young, I was scared and I felt alone. So, I stuck everything in my solid house, climbed out the one window and tried to live a life that wasn’t full of anger and frustration. And I did.

I’ve had many, many wonderful adventures in my life. I’ve seen a lot of things others can only dream about. I’ve done a lot of things that others can only wonder about. My memory bank is full to brimming with wonderous colours, sights, sounds, people, noises, feelings, music and laughter. The flora and fauna of many a country are stored away to be brought out in writings or in musings or just to give a little colour to my day. All of this is juxtaposed with my house.

It’s only been in the last 10 years or so, that the window to my house has been cracked open. There is still no door. So if you want in, you have to really WANT it. One of Rumi’s most famous quotes is “the wound is the place where the Light enters you”. I liken that to the cracking open of that window and allowing someone other than me have a bit of a wander around. It surprises me to this day how hard I find it to let people into my life. This blog helps me immensely in my journey toward sorting through my house and throwing out old rubbish. I know now and acknowledge that I’ve been suffering from depression for most of my adult life. Acknowledging that was probably the hardest thing I’ve ever done, but liberating at the same time. For a few years, it was only me and my GP who knew. (When I think about this, it isn’t so. I suspect a lot of people knew that I was suffering, but god forbid they suggested it to me.) When I decided to go public, it was done so casually that when I think about it now it makes me giggle. I would just drop it into conversations. As an adult, I’m better at knowing when it is and is not appropriate to do certain things. So while I would throw out this comment about “my depression” it was always in the right place in the conversation. It had to be.

So, my mental state is on one side and the deterioration of my physical packaging is on the other. The MS diagnosis is still fresh and raw and I struggle every day to find positives in it. At the moment, most days, I don’t see any bright side at all. Well, other than the one that lets me say “it could be worse”. I was at the hospital a few days ago and tried to get answers to the muscle weakness, the internal inferno, the other changes that are happening to my body. There are none. No-one can tell me if the weakness is a relapse. They think it probably isn’t, but they can’t be certain. No-one can tell me if the weakness is the beginning of my MS getting worse. Right now, there is nothing to be done. There is nothing that can be done. Although I feel the time is right to start saving hard for whatever future is ahead and what kind of walking aid I may need. I contemplated building an extension to my metaphorical house. I decided not to. I can’t always articulate my feelings, but I no longer want to bury them. Mainly because I simply can’t be bothered anymore. Its hard work pretending to feel something that you don’t and it’s even more exhausting trying to deny a feeling that is pervading every cell in my body.

So, I know to expect my depression to be with me. I know that the medication I take for it allows me to deal with it, in the main. I know that the medication doesn’t make the depression go away, but it does give me a bit more of myself (if that makes sense) to be able to cope. I also know that, for me, I have to sit with it alone for a while so I can process it enough to share it. I’ve learned there are no hard and fast rules when it comes to dealing with depression. I know that what works for me, won’t work for everyone. I know that just because I’m willing to share my story, doesn’t mean that everyone wants to hear it. That’s ok. That’s actually how it should be. We aren’t all wired the same way. We aren’t all moved by the same things and we aren’t all disgusted by the same things.

Thank goodness!

So back to the words of Rumi…my body may seem meek, but my spirit does somersaults in the sky! At least it will when depression has finished it’s cup of tea and it’s visit is over.

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Soul Mining…

I sponsor a goat. Her name is Ellen and she was rescued, along with 2 little friends, from a life of agony because of a disability. Ellen is a Nigerian Dwarf goat. Her illness is not hidden, but she was all but abandoned because her front legs are deformed. Thankfully, the owner of the farm where the goats were, agreed to hand them over to the Barn Sanctuary and she is being well looked after and having braces fitted to help with her deformity. Ellen is a lucky little goat. Someone saw her life and knew it needed to change.

I also sponsor, through Marine CSI, a Great White shark. Seamus isn’t deformed, but if you get in his way, you very well may be. Such is the nature of a shark to have to bite to know if it can eat you. The water is his domain. You’ve been warned.

It has been a very strange few weeks. Things just don’t seem right. It’s hard to describe what I mean, it seems that nothing is sitting comfortably for me and my feet are getting itchy. For once, that’s nothing to do with the MS! As well as dealing with all that comes with MS and epilepsy, sufferers also have to deal with the everyday ailments the same as the rest of the population. For me, this week anyhow, that’s been the dreaded stomach bug. There is no need to go into detail here, but I know you all get it. Well not necessarily the stomach bug, although…Anyway that, the fatigue which has moved in, unpacked and shows no sign of leaving, and the general feeling of unease, has left me unsettled. I don’t know what is wrong.

I don’t know if anything is wrong! Perhaps that’s the issue. Maybe everything is just too darn familiar. Familiarity breeds contempt, right? That could well be it. I know that I can’t take a deep breath, I know that I can’t shift the fog and I know that I can’t put my finger on what the problem truly is. Or maybe I just don’t want to. I search my soul a lot. It seems to be never-ending, but I guess that’s the whole point of a soul right? I search and look and pry and dig deep. I turn things over and put things back and return to familiar hunting grounds and see the same things. My soul is where I go when I need to research. My soul is my personal Google. I’ve been here before. Many times. The aching chasm of my soul that’s shrouded in mystery and yet alive in glorious, unashamed technicolour. It’s rich and deep and yet can be mean and shallow. It is comforting and frightening in equal measure. It sits on my sleeve and gossips with my heart. Then it retreats after it’s whispered its fears and joys, leaving me with nothing to grasp.

My soul. The keeper of all my secrets. My friend, my conscience, my harshest critic, my biggest fan, my brightest light and my darkest shadow. There lie all the answers. I know that because I believe, our souls – yes, all living beings have one – encompass everything you can’t touch or see but just know instinctively is there. Every book, every article, every column ever written about so-called self-help, tells how it all starts within. And that’s all well and good, but the only way you can start that process then, is to know what is within. Know thyself. I can’t remember right now who that phrase is attributed to, I think it was Socrates that probably coined it, but it could have just as easily been Plato. Thinking about it, neither of them probably said that phrase at all but their writings will have been a long version along the lines of how you can’t really know anything unless you know yourself. But, how can you truly know yourself? (That last sentence was put there by me, I don’t think either of them actually questioned it, but willing to be corrected on that point).

If we are ever evolving and I think we are. We all act and react differently to different stimuli and as we age our tolerances change with us and so we are always becoming something new. If we are changing all the time, then how do we keep up with who we are. Let’s take me for example. This time last year I was reeling from an MS diagnosis. Everything I thought I knew about me and my body was suddenly ripped away from me by those 2 letters. I was numb for a bit. Highly emotional for a bit. Terrified virtually always. Angry, stunned, confused, depressed and lord knows how many more adjectives could describe the feelings that coursed through me. I never returned to the Kirsty I was the day before. I tried to recover me. But that me was gone and I’m left to shape a new me. Ever evolving. What I knew to be true then, doesn’t seem to be true now. How I used to react to different situations and different people has changed. I used to know how I would react. I only know now that I won’t react in the same way.

Sounds a bit confusing and it is. A bit like the Titanic, my soul doesn’t want to give up all its secrets. I can find new ways to search it and develop techniques that help me deal with its depths and caverns, but it seems unwilling to yield to my constant requests for it to help. I know the answers are there, but I just can’t seem to dig them out. So, my soul has swallowed every old version there ever has been of me and so all that I need to know is there somewhere, but I don’t have the right combination of search terms to unlock them. Soul searching is hard to do. Any search will always uncover something you’ve worked hard to forget and bury. Soul searching will always point you in the direction that you need to go, but it doesn’t give you the strength to put your boots down on that path and walk it. Soul searching is best done when it’s been sat with your heart. That’s when the answers are closest to the top. Your soul can give you the directions, but it can’t make you take the journey.

The soul is never going to say the answer is 3 doors down on your left. (Although it could be, if that’s where your heart has told your soul it’s desire is…). The soul is going to give you the piece of unmoulded clay and an idea of what the finished article could look like. It is still up to the current you, you as you are now, to take the search results and action them.

As a matter of interest, as well as Ellen and Seamus, I also sponsor Amur Tigers through WWF, Rhinos through Care for Wild, dogs through Dogs Trust, a young girl through PlanUK, plus I donate to UNICEF and help remove plastic from the oceans through donating to 4Oceans and my cats consist of one adoption and 2 rescues. They all have souls and their souls all whispered to my heart.

And yes, I stole the title for this post from The The. Credit where credit is due.

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Still Standing…although…

…my knees are a bit wobbly!

In grand terms, I’m still trying to get my head around having Epilepsy and MS.

It took me quite a while to accept epilepsy into my life (and into the lives of those around me), I know it will be the same for MS. Yet, it somehow feels like I have a bit more to lose now.

Frankly, today, yep I’m on a bit of a downer. The whole situation seems very overwhelming for me and I know it also is for my family. Although this is my blog and these are my thoughts and feelings, I am extremely aware that it’s not just me this affects. I have the luxury of being able to get my thoughts out in writing, as I know me better than most and I know I would struggle to successfully say what I am able to write. I don’t know why that is. Although, I suspect it’s because this is my chance to free-wheel, as it were!! I get to write without having to clarify, justify or question what I’m feeling.

Don’t get me wrong. I want people to ask me questions. They often ask about things I haven’t thought of for myself and they often help me see with fresh eyes. Sometimes though, the questions I don’t have answers for scare the living bejesus out of me. It often feels like it’s all “me, me, me,” and do you know what, sometimes it is!! That said though, I know there is no way at all I’d be standing on wobbly knees if it weren’t for the people around me. My family aside, my friends and loved ones are what makes this situation bearable. The ones who call me out on my crap (Sarah – I’m thinking about you especially here :0) ) because they care. The ones who are brutally honest with me and can deliver that honesty with just the right amount of tenderness, keep me strong. The ones who just allow me to be me whether I’m wallowing or moving mountains, without saying a word. The ones who go out for lunch or dinner with me, knowing there is a good chance I’m going to talk/moan about my situation. The ones who sit next to me while we watch tv. The ones who push me on in the gym. The ones who make me laugh when I think I will never laugh again. The ones who let me cry and then ask if I’m “done now, because I’m missing the rugby”. All of them, serve to remind me that I’m not alone and I can do “this”.

So wobbly knees to hell with you!! Hmm – except after a million squats, then you can be as shaky as you want!! I’m changing my life to adapt to that which I need to adapt to. Some of you may not recognise me when I’m done, but that’s ok. Some may choose not to stand with me anymore, but that’s their choice. Others may decide to walk with me, though they’ve never travelled my path, that would be brilliant and I thank them. 

I choose to accept there will always be birdshits on the path of life. I choose to remember that if I stick my head in the sand, I leave my ass exposed. I choose to recognise that if I don’t make decisions about my life, then someone else will do it for me. 

I choose me.

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Epilepsy and Hope renewed…

I got a letter from the hospital today. When I saw the envelope I didn’t want to open it because I thought it was just going to be the written version of last week’s session. It wasn’t. It was an appointment with the person at the hospital who can perhaps help me find the link between my epilepsy and my sleeping problems! Yay!

Year-1. Renewed hope. A tweak in attitude. The continued support of those around me. New beginnings. In order to have the rainbow, you need to have the rain. I can’t quite remember who said that (memory issues are still abundant!), but I have the feeling it was Dolly Parton! Feel free to correct me if I’m wrong! The point being that, to truly appreciate joy, experience wonder, or find peace, then having endured the opposite is what makes that possible. Of course, you can feel all of those things anyway, but the experience is sweeter, sharper, and more potent if you’ve experienced the opposite. So, should we be actively looking for pain and problems??

I believe, in the course of living life, pain and problems present themselves naturally as time passes. How we choose to deal with the issues is up to the individual. That said, our own actions occasionally (often) exacerbate the issues that knock on the door to our life. I haven’t always viewed my life, life itself, that way. It’s often easier to push responsibility onto another, either actively or passively, rather than shoulder the consequences or confront the situation. I know I’ve done that in the past. I know there are certain situations in my present that I’m struggling to confront for fear of the consequences. But, this is Year-1. The past is gone, the future isn’t promised and all there is, is the present.

When I think about my childhood, I think about my Gran. Ever-giving. My brother and I would spend a few weeks in the summer with her during school holidays. She took us to Portobello beach, the zoo, the castle and gave us endless stories to laugh about well into our adulthood. She would knit us jerseys that implied she thought we had pea-sized heads and arms like an orangutan! We often talk about Wee-Eenie. She was hospitalised after a stroke in 1998. My brother and I visited her every single day the entire time she was in hospital. He would feed her, I would make sure she always had clean clothes to wear and would read to her. Towards the end, she didn’t really know who we were. There was not one day that one or other of us, or both of us were not there. It wasn’t easy. She had provided for us unconditionally; I had lived with her when I first moved to Scotland. It was the very least we could do. The nurses were amazing in the hospital, they got to know us and they pretty much allowed us to come and go as we pleased. I’m grateful for that. Her main source of nourishment was given to her through a tube. The day came when the decision had to be made as to whether food should be withdrawn. My Dad made the decision that it should be, over the phone with the hospital, and my brother and I went together to formally request that the feeding tubes be withdrawn. The hospital had assured my dad that there would be someone at the hospital, a nurse or doctor that we knew, who would be there to see us and who would explain the procedures. That’s not quite what happened.

When we arrived on the ward, there was not one nurse or doctor there who either of us had seen before. We had to explain who we were and why we were there at that time. We stood next to my Gran’s bed. Without a word of warning, the nurse pulled the tubes out of my Gran and just walked away. My brother said to me “I can’t be here” and bolted from the hospital. He never went back. We both felt like we killed her. I stayed, but I understand why he didn’t. That was a Tuesday evening. She wasn’t lucid very often, but she did have moments. She said to me one evening, that she would see her birthday, “but I’ll not see past it”. The following Saturday at 5.30am the hospital phoned me to say she’d had a bad night and I went straight to the hospital. Wee-Eenie died on October 17th 1998. Her 85th Birthday.

I often wonder if my Gran is looking down on me and is proud of what she sees. It is my Gran’s side of the family that possess the epilepsy gene. One of my cousins had a seizure when she was a teenager, but nothing since and 1 episode is not enough to be classified as epilepsy. To my knowledge, I’m the only one of my family that has/is displaying the telltale signs of epilepsy. I’m the special one…When I reflect on the time I knew my Gran, the lady I remember was one with a great sense of humour, a great giggle, a ready smile and a generous heart. The memories of her make my soul smile.

My Year-1 is going very well so far. I’ve made some tweaks. I feel hope. I feel a sense of connection to my present that has been absent a long time. I feel joy in my heart. We are each of us responsible for our own happiness. It is not the job of someone else to make me happy. It is up to me to actively seek out that which brings me joy and peace. I know what those things/people are likely to be because I’ve experienced the opposite. The pain and struggle of the past, will make the joy of the present and the plans for a future not promised, sweeter.