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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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If wishes were horses…

…beggars would ride, but it’s the squeaky wheel that gets the grease.

I love a wee idiom or two.

I’ve been trying to find an idiom I could use to make light of (because god knows there seems to be no reason) or would aptly describe my latest medical mystery. A sight for sore eyes maybe? That could, at a real push, be sort of manipulated to mean that an answer, a proper answer, an answer with a definite yes or robust no, would really be very welcome now. The situation is really getting on my last (optic!) nerve.

It’s not my last (optic) nerve yet. The prognosis doesn’t look encouraging though.

So the results of the tests that I talked about here, are back. Sort of. The X-rays were “clear”. Clear of what I’m unsure of and frankly too scared and tired to ask. This time I actually got seen by the ophthalmologist I should have been with on my last trip to the hospital! Maybe that’s the miracle I’ve been waiting for? More likely he couldn’t find a minion…Anyway, after announcing the “good news” about the chest x-rays – I have one, that’s good news and it’s “clear” so I should be grateful for small mercies; I thought the only way is up! I allowed myself to feel hope! After all, it was the x-rays and the bloods that were determining my future! The bloods were also claimed to be a combination of “fine” and “inconclusive” so I felt quite secure in my hope. Then, in the blink of an eye (haha) he ripped my comfort from under me.

Sod.

After examining my eyes. Again. Then repeating it. Then numbing the eyes with the horror that is the “yellow liquid”. He starts to make noises such as “hmm” and “well”. The cold feeling is back in my chest. (I suspect they can’t see a cold feeling on an X-ray). I wanted to weep. However, my eyes were already crying lemon tears and the numbness was having none of it! Apparently, the optic nerve in my right eye is deteriorating. This is new. It has always been the left eye that has the caused the most concern. The right, while not a particularly happy little bunny, was trying its best to be good. I asked the obvious question – what??? (Said in a slightly high-pitched, very unbecoming, almost screech like tone). You were only supposed to tell me that I don’t have ocular sarcoidosis, you weren’t meant to be introducing more problems!!

Apparently, he’s not sure why it’s deteriorating. So, he says we need to look at the previous images taken of your eyes. Sounds reasonable I think. Do a comparison. See what has changed. Until he asks me if I have them. Numb eyeballs are trying to do a shocked expression. I can feel the expression in my soul, but bloody eyes are yellow and not playing by the rules. No, I don’t. But they are right there in your little computer that houses my bloody medical records that are now resembling an A4, small print, pdf version of War and Peace, but with the emphasis very firmly on war! The numbness in my eyes spreads to my mouth. This is an unfamiliar feeling for me. I’m not often lost for words. He then seems to come to the same conclusion himself but decides he can’t really decide what the images are showing and he needs to confer with one of my neurologists. And there was me thinking I was actually in the presence of an ophthalmology god. Silly me.

So, my temporary dumbness dissipates and I ask him what it all means. Apparently, it all means jargon. Followed by a bit more jargon and with a generous sprinkling of not sures. It could be demyelination associated with MS that may require an intervention (I do not know how many times I’ve heard that term when describing my conditions) but if it isn’t that, then he doesn’t really know. They don’t think its NMO, they don’t think its Ocular Sarcoidosis, but it could be another type of optic neuritis, but what type remains a mystery. I wonder if they get paid by repeat visit based commissions….?

I wish I had an answer. Actually, any answer will do right now, as long as it’s the final one. It doesn’t even have to be a pleasant one, but this not knowing what I’m dealing with is just hellish. I don’t feel my sight has got any worse and I’m still dog-tired, so nothing much has changed there. So, this news came as a bit of a blow. And its news that has no immediate answer. I don’t know how to deal with that. If my nerve is going to continue to deteriorate and I’m going to lose my vision in that eye, then I want to know. Now. I want to be able to prepare. Train the cats to be guide dogs (then take them to the office as such hehe) or at the very least make a viable plan for the rest of my life. (Sounds dramatic, but it’s how I feel therefore it’s valid). As it is, I’m just about back to square one.

The only real difference between square one and now is that I do have MS, I do suffer from incredible fatigue (as opposed to the general knackered-ness I used to feel), and I glow bright red twice a day (thanks drugs!).

So, I wish for answers, but until I get them I shall continue to be that squeaky wheel that keeps making enough noise that it really irritates those that have to listen to it, but might be just loud enough for someone medical to do something about it.

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She’s beautiful

5th May 1945

Dear Ted

It’s difficult for me to write you as we are complete strangers, but I’ve heard of you through B.. and no doubt I was mentioned to you perhaps in a letter.

To explain my writing to you –  in B..’s (or did you call him Tommy?) well anyway, in his personal effects one or two of your letters were returned and I felt I must write and break the news to you – even so I’m afraid it’s very delayed.

Last July – the 21st, I heard that B.. was reported missing over Essen. One of his crew was reported POW seven weeks after and he wrote us that he was the sole survivor. Since then, I have heard officially that B.. and the crew are buried at Schoppingen in Germany.

Unless you have heard from any other source I don’t doubt this news will be a great shock to you. Naturally, it was a very bitter blow to me – after four months of married life. He was a good guy and well thought of.

I found your home address in amongst books, papers etc and I’m hoping your mother or wife will pass it on to you wherever you are. If you have written at all, I expect your letters will have been returned so you’ll know now just why.

I trust you are in good health and spirits at the latest turn in this darned war.

Sincerely yours,

P..T..

PS Tommy has a daughter too – what a pity he didn’t know she’s beautiful.

The above letter was written to my Uncle Ted.  It’s one of a few letters he received, that have survived intact from his time serving during and after World War II. I was going through some of the letters today and this one made me sit quietly and think, as it has done every time I’ve read it. Yesterday (27th January) was Holocaust Memorial Day, marking the anniversary of the liberation of Auschwitz-Birkenau, the largest of the nazi death camps. The letters that my uncle received tell only a fraction of the human stories behind the tragedies, behind the atrocities. The letters are a sobering insight into the true cost of fighting tyranny. The memorials serve to not only remember those that lost their life but to remind us that we must never let it happen again.

I personally find it slightly surreal and incredible that on the same day that we remember the millions that died in the nazi death camps because of their religious belief, sexual orientation or political standing, POTUS signs an order “protecting the United States from foreign nationals entering from countries compromised by terrorism, and ensuring a more rigorous vetting process”. Interestingly, though this order is publicised as an action of his first week in office, the actual order has yet to be published. Its widely reported that this presidential order bans refugees and those from 7, predominantly Muslim, countries.

There seem to be no such qualms about publishing the order that reinforces the intention to build a wall between the US & Mexico.

Actions have consequences. It’s simply physics. Actually, I may take the liberty of rewording that, there is, in my opinion, nothing simple about physics! Newton’s Third Law states that every action has an equal and opposite reaction. Now Newton may have been talking about motion, but the law is just as applicable, I think, to human behaviour. In simple terms, actions have consequences.

I was speaking to my friend (the little minx from my last blog post). She told me how she had come to a new school, struck up a friendship with a boy and had no thoughts about who and how people were linked by friendships. Her actions had completely unintentional consequences. She said that she just lacked an awareness of what was going on around her and she feels that trait has actually followed her through her life. She had no idea of the profound effect her actions were having on me. She gave me another example of a throwaway comment she made that was relayed back to her decades later. Again, she spoke with no thought for the consequence. She wasn’t being deliberately cruel or spiteful – she doesn’t have those bones in her body -, from her perspective, in the case of X, all she was doing was making a friend and the case of the throwaway comment, she was just thinking out loud. We all do it. We all do it multiple times a day. What we don’t all do is have the awareness to realise when we should just keep quiet. Little Minx (she’s gonna hate me for dubbing her that) has learned the lesson, though. She now has enough self-awareness to recognise her occasional lack of sensitivity to what it going on around her.

The point is (yes, there is a point) we aren’t always aware of what is going on around us. We don’t always know what battles others are fighting. That harsh word spoken to you by a colleague may be the consequence of a turmoil they are experiencing of which you have no knowledge. I try to remind myself of this. I admit, I sometimes forget to remind myself of this. It’s not always easy to disconnect from a hurtful comment, but if it comes from a person who isn’t usually deliberately hurtful, then maybe it’s time to ask them if they’re ok or if you can be an ear for them. Maybe if we were all just a little more considerate, charitable and kinder toward each other, there would be altogether less pain in the world. The only actions you can control are your own. The only reactions you’re responsible for are your own.

It’s now Sunday and I’m thinking about P..’s words about her daughter. Her father, shot down over Germany, fighting a war to end tyranny and persecution. Her mother’s letter to a stranger to explain a lack of communication. An act of kindness to put a potentially troubled mind at ease. A simple declaration of facts without effusive emotion, but leaving in no doubt that the writer was a caring, kind person. Widowed after only 4 months of marriage and mother to a beautiful child who would never know her father. All actions have consequences. The ones you see, the ones you anticipate and the ones you have no idea about. Be mindful of this as you go about your day.