This Isn't Everything You Are

This Isn’t Everything You Are

I am writing an essay this morning and listening to music. Music has such a powerful emotional hold on me – it makes me smile, laugh and often cry with very little warning. I wonder sometimes, when going through hard times how we cope until we get to the other side. My writing group pulled me up short on Thursday morning, and I love it when that happens, it usually teaches me something very valuable. We are working towards creating a recovery blog and I had written an exercise to inspire us into coming up with a name. My exercise asked people to imagine what recovery looked like for them and to write down any words or images they associated with it. There were many wonderful images of sunshine, spring flowers, rainbows, silver linings and journeys coming to an end. Then I was challenged. Surely recovery isn’t just about getting there – it’s about the journey itself. When we climb a mountain there is an incredible feeling as we reach the summit, but everything we have learned about ourselves came during the climb. A recovery journey has ups and downs and the group were in an emotional place where they were deep in the struggle, not looking back on it. This led to some beautiful imagery of boats bobbing on the tide but not going under, of hope trees and rollercoasters. The trick is in learning to dance while it’s raining, not waiting for it to stop.

I have been in a similar place myself and this challenge from my wonderful group made me go home feeling thoughtful. My house has now sold and my divorce moves forward slowly and I had been thinking how much I wanted a Star Trek style transporter to zap me from here to when I am settled in my new house, with all the legal and financial wrangling behind me. The sheer physical effort of packing everything and choosing what to take and what to sell also fills me with dread. I just don’t need it. I want the end result, but I don’t want to do the work – a big theme in the way I deal with life. I avoid obstacles and difficulties by substituting something else, swerving to avoid them or blocking them altogether. I know I need to go through it; I just don’t want to.

This made me think about how we do go through these periods of transition, when you are completely out of step with the world because it has changed all around you or because everyone else is carrying on as normal while your life has changed beyond all recognition. I was reminded of it this morning when I saw a Macmillan advert while eating my breakfast and watching TV. It showed a person being told they have cancer and then falling to the floor, and then it showed all their friends and relatives in their ordinary everyday settings falling to the floor. I know those moments. When something is seared into your memory forever; an instant where everything after will be different. They are like snapshots of your life. The things in your life that will run like a film in your head just before the moment you die. It could be the moment a baby is born, the day you are told you have an incurable disease, the day you meet the love of your life or the day they die. How do we survive these moments?

The song that I listen to when I feel like this is Snow Patrol’s ‘This Isn’t Everything You Are’. I do not have any background to the song, but from the lyrics I always assume it is about the loss of someone very important in your life. The words suggest a difficult or strained relationship where the singer isn’t sure of whether they want to be there or not. He describes all those day to day grievances that prevent us from understanding each other: who loves who more, who last picked up the phone or made contact. Then comes the moment of change and the world implodes. Everything is stripped away to the basics and he has to remind himself not to keel over. The only thing we can do in these times is ‘take the hand that’s offered/and hold on tight’. It is a time when we can’t manage alone. It reminds me not to plough on alone pretending everything is ok and lean on someone until I can stand upright again. The final lines of the song are the most hopeful and I keep them in mind when it feels like I’m never going to get to the end of this particular tunnel: ‘there’s joy not far from here/I know there is/ This isn’t everything you are’.

I have a huge climb ahead of me still, but at least I’m looking in the right direction. I think in all those hard moments of life it is important to keep in mind that ‘this isn’t everything you are’. When I’m filling in my divorce petition and feeling low about myself I can think that there is more to me than this. When I’m wrangling over finances and my future I can keep in mind that this isn’t all my future is going to be. It is a mantra I can apply to every difficult aspect of my life – I am not just my MS, I am not just a divorcee, I am not just a widow. Behind all these experiences is the true authentic me that may be a bit battered and broken, but still exists. I may not be dancing in the rain yet, but at least I’m standing upright.

 

http://vimeo.com/30541069

More Than One Kind of Love

So, today is Valentine’s Day. You might think because of my recent marriage break up that I would be joining those Valentine’s Day haters. For some people, days like these simply exist to make it even more obvious they are alone. It is the same with celebration days like Thanksgiving, Christmas and New Year. In order to feel less alone I spent Christmas 2012 in a completely different way to how I had before to avoid the ‘empty chair syndrome’ of carrying on a tradition without the most important person present. I went out and ate with friends and created new traditions that would enable me to move forward. Maybe we should do the same with Valentine’s Day.

At the risk of plagiarising Joan Armatrading there is more than one kind of love. Valentine’s Day is a celebration of love, but who says that has to be restricted to romantic love? I hear people, usually tight people, moaning about the commercialisation of the day and it has become a gaudy mix of supermarket red roses and glitter, but it doesn’t have to be that way.

Maybe we should use Valentine’s Day to celebrate the love we do have in our lives, instead of the love we don’t. Yes, it is wonderful to have a soul mate, that one person we click with. I have been ecstatically happy in relationships, but I have also been sad and lonely in them too. However, I do have love in my life that is steady and unchanging. I have the love of my family, shown in the wonderful party we had last weekend for my mum’s 60^th birthday. This was a celebration of how much we love her and appreciate all she has done for us over the years. The love we have for her was shown in the weeks of planning, the gathering of all the pretty china, the napkins with frog princes on that I knew she would love and the faltering attempt at public speaking in front of 50 people when the last thing I enjoy doing is speaking in public. Every cup and dish that was washed and every cake that was made was done with love.

This was not just a celebration of family though, it showed us all the love of our friends. The friends that shared their crockery and made a cake. The friends that stood for five hours making frog prince cupcakes. The friends that spent four hours driving just to be there for the weekend. I have immense love for my friends and they feel the same way about me, no matter what mistakes I have made. Their love is shown in the meals they cook me, and the dog sitting they do so I can work at college. It shows in the time I had to sleep on the sofa when my marriage broke up, or when I needed someone to sit up with me at three in the morning because I was having a panic attack at the thought of my new single life. It shows every time they take me on holiday with them like a big gooseberry and in the hours spent on the phone helping me find my confidence again.

Every week, voluntarily, I spend two hours making tea and listening to people’s problems at the local social drop-in centre. There are people with mental health problems, lonely people, people who are struggling with stress or depression. I care about these people and turn out every Wednesday to spend time with them, make them tea and listen. Even if I feel washed out, tired or physically incapable I still turn up. Isn’t that a kind of love?

I had a friend called Kathryn, who did not always want me to see her when she was at her most ill, but most weeks I would send her a postcard or a short letter, letting her know I was still there and sometimes getting nothing in return for months. That is a kind of love.

I have contact with an autistic man who I used to be a keyworker for. He has no help from a social worker anymore but struggles with everyday tasks like reading, answering mail, managing finances and coping with bullying. If he has a problem, he calls me and I go round. I read and reply to his mail. I help him use the internet and get what he needs for a safe tenancy. There is no title for what I do and yet I do it. At Christmas he surprised me with a wonderful carving of Miss Piggy. Surely this is a kind of love.

Recently I went to see the film The Impossible and it was a great emotional experience but I found I didn’t cry in the same places as everyone else. Yes, it was emotional when the family finally found each other but the moments that made me weep were moments of extraordinary humanity. When the mother and son put themselves at risk to help a little boy who was a complete stranger it made me cry. When they climbed a tree to safety and the  mother was in agony and exhausted and that same little boy soothingly stroked her arm it made me cry. When the local villagers found her and dragged her to safety in their village and the women bathed her and covered her with new clean clothes it made me cry. All of these are examples of love we never celebrate. Why is our definition of love so narrow?

Before I met my ex-husband I was a widow – I know, it’s very complicated. At his funeral I had my friend Jo read the poem ‘Atlas’ by U.A.Fanthorpe which had the opening line ‘there is a kind of love who’s name is maintenance’. It then lists all the day to day things that people do for one another because they care, because they love. It isn’t always about red roses and not being able to think straight. Those times are precious and beautiful of course, but I think we often forget the support and love we do have because we’re pursuing a romantic ideal.

So, don’t spend today lamenting what you don’t have. Celebrate all the different kinds of love you do have in your life.

ATLAS by U.A. Fanthorpe

There is a kind of love called maintenance
Which stores the WD40 and knows when to use it

Which checks the insurance, and doesn’t forget
The milkman; which remembers to plant bulbs;

Which answers letters; which knows the way
The money goes; which deals with dentists

And Road Fund Tax and meeting trains,
And postcards to the lonely; which upholds

The permanently rickety elaborate
Structures of living, which is Atlas.

And maintenance is the sensible side of love,
Which knows what time and weather are doing
To my brickwork; insulates my faulty wiring;
Laughs at my dryrotten jokes; remembers
My need for gloss and grouting; which keeps
My suspect edifice upright in air,
As Atlas did the sky.

 

 

Judging a Book by it's Cover

I hate to grumble, but sometimes having an invisible disability is just infuriating. I was writing an exercise for my writing recovery group and we always start by making a list, because lists are something everyone can do. I saw in a resource book a list of irritating things people can say to someone with an invisible disability. One of my personal bugbears is ‘you look well’ which sounds fantastic, but completely stifles any attempt at conversation because then I feel obliged to say that I’m fine. Also, my connective tissue disease means that I often have a rosy glow across the bridge of my nose. This rash means I’m bloody tired and my disease is probably extremely active, but hey, at least I look well.

When on crutches I often get the question ‘what have you done to yourself?’ This question also baffles me; do I make up a fake injury like a sprain or a torn muscle or do I tell the truth. I started saying ‘it’s not an injury, I have an illness and sometimes I’m on crutches’. This reply either lams them up, or the particularly nosey ones follow up with: ‘nothing serious I hope’. I used to avoid this question by saying no and denying what was wrong. It was too difficult to explain. Now I tend to say ‘I have MS’ and deal with the mystified or horrified look I would get in return. You might as well say you’re dying to some people. It’s not that I feel the need to educate people; I’m just tired of denying the reality of my existence. I then absorb some of the hurtful comments like ‘oh and you’re so young’, or ‘how did you catch that?’ or even, on one occasion when my mum told someone what was wrong, ‘but she was so pretty’. That one is wrong on so many levels I can’t even be bothered to begin.

My most recent issues are surrounding parking. Our county council is desperate for money and seemingly very keen on making people with disabilities pay their way when it comes to parking. The first step was to bring in payment for new parking areas – there were still disabled bays nearer to the shops, but we paid the same as everyone else. Then a couple of years ago they spread the rule to all council car parks, so the only way to park for free was to park on the roadside, probably resulting in a huge rise in parking on double yellow lines for 3 hours. One very brave resident, who suffered an incredible amount of abuse from the general public, decided to legally challenge the council on this issue. He argued that it takes a person with a disability longer to walk and carry shopping so they were being penalised by paying more for parking than the average able-bodied person who could get away with parking for one hour. After being threatened with a judicial review the council relented and now there is a two-tier system where you pay for one hour and get two hours if you display your blue badge. This has led to queues of blue badge holders at ticket machines doing mental arithmetic before they buy a ticket. I imagine that roadside parking became many people’s choice, but I just went into town less. Now even the roadside spaces are under pressure because the council have brought in a new breed of parking inspector, working on commission and hanging around roadside disabled spaces for anyone who tips ten minutes over their three hour limit.

Consequently, disabled spaces are at a premium and competition has become fierce. I often look perfectly ‘normal’ and this has led to some interesting stand offs over spaces, especially with elderly people. I have often had blue badges angrily waved at me when I nip into a space before someone. The automatic reaction to this is to wave a blue badge back angrily. Some elderly people think they have an automatic right over someone younger to take spaces – sometimes when they have no blue badge themselves! I have been told that my blue badge is not for people with sprained ankles. I have started to feel furtive when parking in these spaces and even in the supermarket car park. Should I be able to walk away from my car without as much as a limp? I worry about what people will think if I wear a heel or carry a shopping bag. What if I can put that bag into my boot and look ok? I shouldn’t give a shit what other people think, but I do. If I’m having a good day I always leave the nearest spaces for someone else, but how can another person know that I’m in pain at every step or feel so tired I can’t walk any further. Or, on some days, I just know that if I push myself a little too hard I will suffer later.

I have even been asked when producing or waving my blue badge ‘what’s your disability?’ which is rude and insulting. My friend suggests I try ‘it’s Tourette’s, now f**k off’. Even after I told them I had MS, one elderly ‘gentleman’ told me ‘you look fine to me’. When I hear things like this I want to swear, shout and stamp my feet – have a proper tantrum like a three year old. I want to hire out a megaphone and stand in the marketplace shouting ‘I have MS’ over and over again. A very wise friend told me that it is impossible for everyone to know my story; if they did know how much easier would life be?

I never speak out on these occasions. I keep quiet. I keep it in. I am not rude. I am even polite. Then I go home, and seethe and feel bad.

I need to stand up for myself more. Be firm and tell people to mind their own business. It helps to talk to other friends who have the same experiences and write about it in my blog or journal to get the feelings out. I have to accept that not everyone will see the truth of me, but that does not mean it is not the truth.