Looking Forward

‘Love does not consist of gazing at each other, but in looking outward together in the same direction’. Antoine de Saint-Expury

We talked a little bit in my recovery writing group this week about the need to look forward. I am always reminded of the quote by Antoine de Saint-Expury about looking outwards in the same direction rather than gazing into each other’s eyes. It is advice I now believe in strongly when it comes to marriage and it is often the same in friendships. True friends that we can count on are often people who might have different pasts, but who are moving forward in the same direction and from the same standpoint. It is that outward direction which can be so important in recovery. I have had a small relapse in the last couple of weeks and have been walking on crutches – it is always a difficult reminder of MS lurking, quietly behind everything I do. It is an opportunity to reflect though, between the relapse and the snow I have had a lot of quiet thinking time. Looking forward though, is as important to me as maintaining my baseline. I want to live life as fully as possible within and sometimes beyond my limits. I know I am never going to climb Everest or run a marathon – they would be stupid, unrealistic goals. However, I know I can write my blog, write a book, enjoy trips to the theatre and the cinema, chill out down in Cornwall and even see New York and Florence. By pacing myself, planning, saving and accepting help where necessary I can do all of these things. I am also never short of a companion on these outings, because I am blessed with many friends who are looking outwards in the same direction.

This spirit of adventure has of course lead to some disasters. There was the 24 hour trip to Cornwall, which started by standing around in a field shivering and drinking, rather suspect, Polish liquors and ended with a loss of temper and an inflatable mattress being flung into a hedge. There was another holiday where I spent 24 hours being sick into a waste paper basket and was attacked in the middle of the night by a killer moth. There was a haunted cottage, a wonderful holiday village ever after called ‘The House of Wonk’ (never a good thing when you’re already off balance) and the time I sat on a man’s head on a train. There have also been incredible experiences though. I remember a wonderful walk on a beautiful sunny day to Kynance Cove and Trebah beach. There was the joy of finding Frenchman’s Creek, seeing Chicago on Broadway and a little scream of delight watching Justin Timberlake dancing live on stage. Even the cock-ups are funny after the fact – such as the night a cat tried to climb through a skylight onto my friend’s bed in the middle of the night, or the time we had a five minute trip to Harrods because we misread the opening hours and thought it was about to close. The doorman opened the door, we went down the escalator, came back up the escalator, and the doorman let us out again – and we did it all with a shopping trolley, not sure Harrods has ever seen one of those.

Looking forward to something is so important in recovery, because it gives me something to aim for and a reward for the hard work getting there. People may think I’m indulgent or spoiling myself and in some ways I am lucky. I don’t have anyone else to think about, just me, so if I want to live on baked beans for a week so I can afford to see a ballet then that’s ok. The bigger trips I save up for, sometimes over several years, to make sure I get there. There is no secret formula; save for it, book it and go to it. I have the luxury of time and disposable income so its easier for me than people who have families and full time jobs. It is harder in other ways though; I have to book assistance ahead when travelling because I struggle on and off trains with luggage without some help, I would always book assistance in an airport in the future because I cannot stand in queues for long periods of time. I have to think about the places I stay carefully and plan more than the average person. I sometimes have to pay more for a hotel or a venue that is more accessible.

On my notice board I have a to do list of places I would like to see and experiences I would like to have and this year I will be ticking some off the list because it is the last year of my thirties and I want to see it out in style! I have a ticket to see Robbie Williams in the summer – I have wanted to do this several times, but every time the date came near I had a relapse, so fingers crossed for this time. I will be having a tattoo and I have already started with the purple hair and matching purple Doc Martens of course. I will be booking a trip on the Eurostar to see Paris with a friend and we will meet up until we go with a guide book and sort out what we want to see – we will probably enjoy those evenings as much as the actual trip! Then just after I turn 40 I am saving up for a trip to Venice – hopefully at carnival time. I am so excited about all these things that I will work hard towards being well for them and the memories will last forever.

I used to wait to do things, thinking that I might go to Venice one day with someone I love or that I might stay in a particular hotel when I have a partner to do it with. Now I know that life is too short to wait. I have limited time in terms of my recovery/relapse cycle but also because MS can change suddenly. I would hate to find that I had waited to do all these things and then my disability made it impossible. It would also be wrong to wait for someone else to come along who might want to do it with me – I have not been very good at choosing a partner in life and don’t feel inclined to wait around any more. I want to feel and do everything in life that feeds my soul, build experiences and traditions that make me who I am and memories that last into the bad times.

A Matter of Punctuation

A Matter of Punctuation

Sometimes, in the long slog that is having a chronic health condition, there is a breakthrough that you know is going to change your life. I had a diagnosis of Multiple Sclerosis (with a question mark) for the last fifteen years. Since then I have also been diagnosed with a connective tissue disease and chronic myofascial pain syndrome. That question mark has been the bane of my life. Its amazing how one piece of punctuation can change your life? Since I was first told I had MS in 1995 I have seen that question mark on the face of every doctor, physiotherapist, occupational therapist and welfare worker I have ever seen.

That single piece of punctuation created mistrust between me and every official I have ever seen. It has been very hard to feel disbelieved and made it difficult to explain fully how my illness has affected me. It made me feel like a hysteric or some sort of Victorian invalid who from time to time simply has to take to her bed. When I was first diagnosed I had help from the MS Centre who supported me with benefits help, peer support and information. Then two years later when a new neurologist added that question mark to my diagnosis – despite being unable to find any other reason for my problems – everything changed. I felt like a fraud. Even friends became confused and fed up with the ‘is it/isn’t it’ status of my health. I even asked the neurologist if it was a psychosomatic illness and if it was would he refer me to a psychiatrist. He assured me something neurological was going on, he just didn’t know what it was. It has been like this since that date. People close to me, who had seen how ill I was at the beginning, just accepted the original diagnosis and carried on as normal. My husband Jez, who had primary progressive MS until his death in 2007, never questioned what was wrong with me. He recognised the fatigue, the weakness in the muscles, the pain and relapses and always regretted that while help was forthcoming for him, help for me seemed impossible to find and it was all down to that damn question mark.

His rapid decline and death overshadowed my problems to such a degree I was put on the backburner. I had the same problems, but his eclipsed anything I was dealing with. I wrote in my book ‘Happy Endings’ that after his death I was so euphoric that my time was my own again that I tried to do  things I wouldn’t even have been able to do before I met him. The leg spasm, weakness and fatigue became even more evident, because now there was only me to deal with. For all this time we just continued to treat symptoms when they flared up and consultants scratched their heads and looked beat. When I remarried in 2009, my problems came to the fore again because I was always meeting new people, new in-laws, new friends and I found myself having to explain over and over again.

Yes, sometimes I use crutches and sometimes I don’t. Some days I am so stiff I can’t get out of bed while other days I can walk the dog for half a mile. There were parties I couldn’t dance at for fear of losing my balance. Other times I would turn up on crutches for everyone to ask ‘what have you done to yourself?’ The question after that is always a killer: ‘I hope it’s nothing serious?’ It turns out that trying to cram three obscure illnesses into a conversation is a bit of a party pooper. I have seen people cross rooms to avoid talking to me, or pop to refresh their drink and never come back. People simply do not know what to say and whatever they did say rubbed me up the wrong way – my all-time favourite being ‘well, you look well to me’. The sarcastic reply ‘oh, well several neurologists must be completely wrong then’, was often on the tip of my tongue. I questioned myself all the time: did I really need crutches today, do I really need that painkiller, am I making too much of this? This situation was not helped by the person I loved most casting doubt on my illness and wondering if I didn’t ‘play on it’ a little bit or even ‘wallow in it’. Learning that he found my illness so alien he could not be with me, was one of the most hurtful conversations of my life. It has been the ultimate in a long line of rejections; the way I am is not acceptable.

This morning’s visit to the GP was fairly routine, but has changed all of these feelings by simply removing a piece of punctuation. I started seeing a different doctor in the practice a few months ago and we were reviewing my medication when she asked ‘do you take baclofen for your MS?’ I must have looked confused because she repeated the question and turned the computer screen round to face me. She had been reviewing my medical notes and where it previously said nothing it now said at the top of the screen a code and the words ‘Patient has diagnosis of MS’; there was no question mark. We discussed the rest of my meds and my knee which has decided to swell twice the size of the other one and will not straighten. She asked if I saw the MS nurse and I explained that the addition of a question mark to my diagnosis meant I received no help and support except seeing a neuro once a year. Since that question mark I had lost my rehabilitation team, hydrotherapy, regular physiotherapy and I felt like I had lost the trust of my peers who felt I was no longer one of them. I left with an agreement that once an orthopaedic surgeon has seen my knee she would refer me to the rehabilitation team. It may have been routine for her, but that appointment shifted my entire world. I no longer felt like a fraud. Getting just that little bit of help and support could improve my recovery so much. Mainly though, it is just the fact that there it is in writing. Someone trusts me and believes what I’m going through. That is enough.

The Safety of Snow

I woke this morning to that strange muffled silence that tells me immediately it is snowing. Where, I live, in the middle of nowhere the snow is a form of insulation. It keeps me cocooned in the quiet and leaves me with the feeling there is no one else in the world but me. I have plenty of food in the pantry and a log burner full to the brim, so what to do with this unexpected day of leisure?

It is a day to relax and take stock. A day of contemplation; touching base with where I am in life and how much has happened to me in such a short space of time. As I set my alarm last night, ready for client work this morning, my mind wandered back to last September when I was first on my own. I had changed the sound of the alarm recently, because just to hear the alarm I first used after my husband left and I began my training dragged me straight back to the pain I felt then. Sometimes, you need a full stop in life to realise how far you’ve come. As I set the new alarm I remembered that time and was surprised to realise my feelings had changed. When the pain was raw I was sure it was so obvious everyone could see it in my face. Paul Simon’s song Graceland has a line: ‘losing love is like a window in your heart/everybody sees you’re blown apart’. That was exactly how I felt. The pain was physical and overwhelming. It coloured every sentence and every action.

Now I seem to have a protective layer around me – like a Ready Brek glow – that stops the pain being so immediate and obvious.

This physical barrier to the outside world teaches me a lesson. When my previous husband died I hated being alone. I could go out almost every night of the week, eat with friends, go to the cinema and go for weekends away. I was never short of people to do things with, but I had no one to do nothing with. No matter how good a time I had out and about, when I closed the door at the end of the day I was still alone. I didn’t like waking up in the night to an empty house, or having a house full of visitors knowing how empty the house would feel when they left at the end of the night. I had rarely been without a boyfriend from the age of 17 – I’d had periods of being single, but they were never for very long. I didn’t really know how to exist without someone special who loved me. This was a lesson I was going to struggle to learn.

In this enforced solitude of being snowed in, I have started to realise that some of the things I once dreaded are actually plus points. I am becoming accustomed and quite enamoured of silence. Sometimes, I even choose to switch off the TV or radio, and just read in the quiet next to the open fire. I start to look forward to coming home after a night out, putting pyjamas on and vegging on the sofa with the animals. I like that I know where things are – if the house is tidy when I go out, it is still exactly the same when I return home. Far from missing a master of the house, I am enjoying becoming master of my own house. I choose what and when I eat, what I watch or listen to, and how I spend my time. I can work as and when I feel like it, rather than having to fit it in round housework or cooking someone else’s tea. My recovery is entirely in my hands and becomes a much bigger priority to me. Being alone is not just acceptable; it has become ok, even preferred. After spending the last 15 years being married then divorced, married then widowed, married then separated, I can finally choose to have space to work out who I am, what is important to me and how I want life to be. The snow break has given me a clear and safe space to think about these things and realise that life is good, and even exciting. It has taken going nowhere to realise how far I have come.

The Snowman

A friend of mine put this status on Facebook today and it spoke to me so much it inspired this blog. As a trainee counsellor, it was important for me to talk through my current troubles with a counsellor of my own. This is always a good thing to do anyway, but as a trainee it also makes sure you process all those emotions and hopefully stops them affecting your own work with clients. One of the thoughts that kept going through my mind after my husband left was whether I really knew him. He had seemed to change so much over the time we’d been married that I knew something was wrong. However, the ‘new’ man he was becoming was only new to me. I kept hearing stories and assurances that far from being a totally changed man from the one I married, he had simply reverted to who he had been all along. I told my counsellor I felt like I’d been in love with some sort of phantom.

I loved someone who simply wasn’t there.

I used writing to explore this and help me face a reality I had clearly been denying for a long time. During our time together as this started to go wrong I kept asking myself the question:

‘Why would someone behave like that if they love you?’

This is where being a counsellor can sometimes work against you. I analysed and rationalised his behaviour to the point where I probably had more excuses than he did. I found myself defending him to friends and family and trying to make them understand that there were reasons, and that he was not what they thought he was. It was only recently, when things became clearer, that I could answer my own question.

He behaved like that because he didn’t love me.

This was hard to accept, but it was the obvious answer. Of course there is a context and background to anyone’s behaviour, but once he admitted he did not love me it was a huge relief. I could then put aside all the questions swirling round in my mind – the answer to every one of them was a lack of love. It was like taking a deep breath and feeling all my tension and stress float away into the air.

Then another question surfaced. How did I marry someone who so clearly did not love me? Again, the answer was simple – I saw what I needed to see. Yes, I had been deceived by someone who was clearly so good at it he managed to take in friends and family too, but also I had needed so much to be loved.

I had been alone for only a year, but that year was a lifetime. It was very hard to be a widow. I couldn’t understand why God would give me someone so perfect for me, my soul mate and my other half, just to take him away again. I thought that maybe this was my chance to be happy – that this was my reward for going through the most difficult experience of my life. I genuinely loved my new husband and believed we would be together for life, but now I have to face that the man I was in love with did not really exist and the world I had built around us was a sham. The photos of holidays, our wonderful home and pets mocked me because now they seemed like a desperate attempt to show everything was perfect, that life does have happy endings.

My lifelong partnership was only temporary. Just like we build snowmen to help us enjoy the snow, I had built a marriage to help me face my life. We build a snowman in the knowledge he is temporary, but yet there is still something melancholy about their melting. It is a reminder of the losses we have in life. I married a snowman and wept when he melted away.

 

Recovering An Independent Future

To use a royal quote, 2007 was my 'annus horribilis' and proved the saying that disasters come in threes. My husband died at the end of May, the exactly two weeks later the heavens opened and the village flooded redesigning my garden as well as the outdoor office, and finally, drowning my cat, Perdy. It's hard to make sense of a series of events like that. I had to keep thinking that something better was round the corner. These dark days seemed to go on forever, almost like I was in a different time zone to everyone around me. When I met a man a year later I think many people thought 'its just a year' whereas to me it felt like a decade had past and I was ready for a happy ending.

I spent some time with an old friend at the weekend and she mentioned that her parents sent their love.
 'I bet they think I'm a disaster zone' I said.
'No' she replied 'they just think you don't have much luck'.

I am recovering from so many life events at the moment they are all jumbled up in my head. I described it, when asked, as 'a difficult season' and I hope to God that the new year is a turning point. The big change is not outside me though, it is in me - I am no longer expecting a white knight to come along and save me from all this. I know that I have to do this myself.

My happy ending turned into a nightmare. Last September the man I'd met, who became my husband, walked out after only 3 years of marriage. Apparently my MS, as well as my personality, was too much to handle. Then the same weekend my friend died after a long illness. I was so shellshocked by the end of my marriage that it didn't sink in. Then I woke in the middle of the night to a strange beeping noise. I opened the door to find the house filled with smoke - the drying logs next to my log burner had caught fire. I realised it would take the fire brigade so long to get here that I would need to put it out. Two buckets of water later I opened all the doors and windows and woke up my friend who was staying overnight. We wrapped ourselves in blankets, with large mugs of tea and tried not to cough our lungs up. A bit of cleaning later, and the house was back to normal, but we were scared to death. Then two days before Christmas, Miss Moo, my white tortoiseshell cat deteriorated so badly I had to take her to be put down. Moo was my familiar, my shadow and the one of the best things I have ever done in my life. In 6 years she had developed from an abused little scrap to a fat, bold, and loving companion who rarely left my side. I cried for most of the night before the trip to the vet and then receded into the same numbness I'd been feeling for the last three months.

So here I am in 2013 in a place of transition. The marital home is up for sale but I'm still living in it. I am going through the endless process of getting divorced and reaching a financial settlement. I am going to be 40 towards the end of this year and I feel I am coming up to some huge watershed moment. Yet it seems the trick of this particular recovery journey is not to wait for the next thing to happen, but to learn to live and enjoy living within the chaos. I also want to 'set out my stall' - discover how I want to live, just me, and then make it happen.

With this in mind I have been creating some great memories as well as the difficult ones. Visiting the Ritz for tea was a particular treat and spending the week before Christmas at Mousehole and viewing the gorgeous light festival was the start of an annual tradition. I am creating a new life full of new experiences with friends and family and developing work I really enjoy. Even just sitting in front of the fire with a good book or taking the dog for a walk in the frost feels ok. When I am alone I don't feel lonely.

Embracing this new independent spirit I have a 'turning 40' plan. I want to celebrate my new life with one of the best role models in literature by having a Jane Eyre tattoo; a beautiful vintage birdcage, with the door open and the little bird flying away with the quote: 'I am no bird: and no net ensnares me'. Here's to my independent future.