Forum

Writing about MS

Sometimes it helps to write about how MS has affected you. I have been doing this now for the three years in which I have been officially diagnosed. I guess this may help other people. Heres a bit of it , it called Rollercaoster A summers day, the sunshine streaming down through the tall glass windows. Walking into that calm, cool and still room I was wondering just why there always seemed to be two people in attendance. It just seemed so strange. A pause , a calm hush. I remember that hush, the still cool air. We sat down and my young lady doctor told me in hushed tones the results from the scan. That was it, simple. I was neither angry nor sad. The problem was I knew it was serious but I knew nothing, absolutely nothing about those two long words “ Multiple Sclerosis”. That was a year ago and it has taken me that whole long year to get where I am today. Yes it is a very big deal. It’s unlike anything else you will ever come across. It’s the “what happened next” bit that’s interesting and important. Something no doctor can ever possibly tell you. That part is rather special and very, very difficult to understand. Its special because once you do understand it you will have achieved a great deal in managing your own MS. MS effects everybody differently and at the present time there is no cure for MS . This is very scary. In fact I think you could describe it as like being on one of those giant roller coaster rides at the fair. This particular one is also pretty dodgy in its construction and lucky old you will be the one and only rider who will ever attempt its twisted tracks. That’s it! You can read up in all the books and on the internet about exactly what’s been happening to you. However YOU are the one already on this crazy one man ride and whatever you do or learn is all pretty academic ! So how is it that a year on I am sat here in a cafe drinking coffee and laughing with my friends? Some of this is due,not to any secret wonder drug, nor the routine of seeing a neurologist and being prescribed medicines. Some of it is simply down to me coming to an understand of my own particular “roller coaster ride” You too will need to understand this and a few simple steps may be of great help. 1)Accept the fact that you won’t “ get over” MS. MS is a “Condition” Conditions are something you “manage” 2)Do not attempt this ride “alone”. You need people , some of the people you undoubtedly need are people who already live with MS. 3)Understand that your life will change. How it changes will partly depend on what you do NOW. I have found it a big step. I like many of you have done the classic. I tried to fight it. Its a big thing! I also knew best and didn’t want to “get involved” with “anything like that” . By God that first turn of the roller coaster sent me hurtling down at breakneck speed into the abyss! About halfway down I got lucky , I got introduced to a lady who had been living with MS for nine years. You know what , for a second that ride stood stock still. Talking to her for just five minutes changed the ride ! I carried on still falling down those rusty, rattling tracks. Now I had something to cling on to … Like coming up for air . A big breath in and all of a sudden we are heading up into the sky and the light and looking around I could see for miles. Trouble is I’m still on board and what goes up must come down , right? I can still see for miles but I’m scrabbling about thinking “Oh No!, where the hell is this thing going next”. Clank, clank, clank…slower and slower now as the ride nears the top. Just time to think. “Its just a ride right?” My new friend laughs at me , then she’s gone , that can’t be right can it? Over the top and hurtling into the depths . This time I’m still scared, sure , but I have a little smile across my face . “Dam cheek her laughing at me like that” I think, what’s next? Well what’s next is that you get used to the ride. Nobody said you can’t live on a roller coaster, your very own one at that! Thing is, its YOU that takes on the scary bits , you can make the humps feel a little less steep. More nice straight flat bits! You find out where you are, who you are and what you CAN still do. Just like those experienced roller coaster people who sit in the front seats. Who knows what you might end up doing next!

A good way of describing the journey we are on, although we all might have different destinations…

Beautifully written! I find writing therapeutic too. I wrote this poem about my experience: THE GATECRASHER An unwelcome guest has come to stay – They weren’t even invited And now they won’t go away, They’ve invaded my life And I want them to pay, A thief is robbing me blind And won’t go away. An evil despot has found me And is claiming my life, He rules with no mercy and Is now armed with a knife, Paring memories and skills, He whittles away, He wants me in splinters, Can’t someone please make him pay? An unwelcome guest has come to stay, He wants to have everything for himself At the end of the day, But I’m going to be stronger than him, He can’t have me, no way, Because I’ll always be me And I’ll make him pay.

Good piece of poetry, but why is it a he? Tony

…what a great way of describing it ‘Sparkledust’! Wrote a daily diary for 2 months at the beginning of this year (starting on the morning of the 1st of january…). It was in my native language (which is Dutch) because I did not expect to be able to write down ‘true emotions’ in English, in spite of the fact that I emigrated 16 years ago. Although it was very time consuming, I am glad I have done it, this to leave something ‘behind’ for my little son for when he has grown up… it will hopefully explain one and another about his dad later on in life. I am planning to do the same at the begiining of next year, it might also be a way of measuring the progress of my condition (SPMS)… One problem, I have never been able to teach my son Dutch, might be necessary to describe my deepest ‘feelings’ in the english language… (I am OK with english when I am angry by the way…) Anyway, it can indeed be very therapeutic to write, great job ‘Guest’ (it was well worth it to put your story forward again) and Sparkledust! Regards, Jos

A friend of mine, Tess, is training to be a therapist. She needed to do a research project for her course and she asked if she could interview me, to try and understand in depth how it is for me to live with MS. Instead of writing the project like a normal academic report, she felt drawn to write it much more like a poem. As she said in the report, “By offering my research in a slightly poetic format I was able to engage with and absorb Dan’s lived experience more deeply. Moreover, I found in writing this way the meaning and nuances within my encounter with Dan unfurled and stretched out in front of me. As Thomas Moore says of poetry ‘ [it] doesn’t seek an end to meaning’. I felt this method honoured the ambiguity and mystery inherent within a human life and within human relationships. Furthermore, the style allowed for the transience of the interview. I was so keenly aware that I spent only just over an hour with Dan and often in the process of this project I felt the weight of responsibility in trying to capture and share a whole existence from such a brief meeting. In writing this way I felt the immediacy and ephemeral nature of our time to together became part of the beauty of human encounter.” And so the rest of this post is her work. It is a beautiful gift that left me both simultaneously proud and humbled to have been a part of. ‘I invite Dan to speak. I want to know how it is to be you I say. I see myself as enabling you to tell your story and I don’t really have any other agenda than that. Here is Dan. Here is Dan’s body. His body that in his twenties became an unknown for him and ushered in experiences that he had never had to deal with before. Here is Dan’s body and the equipment he needs to get through the day: the wheelchair, the walking frame, the board across the bath to sit on, the catheter twice a day and the drugs. Here is the time it takes to have a shower. The effort it takes to take off his trousers, ‘when you can’t use your legs all that well’. How his feet can burn and prickle and the cold water he sometimes needs to calm them. How numbness in his fingers makes doing up a shirt button ‘tricky’. His tinnitus and tiredness while we are talking, his loss of concentration, his loss of memory, his difficulty in sleeping, ‘groggy’, ‘fog’, ‘heavy’, ‘haul’, the ‘faff’, the ‘faff’, the ‘faff’. And I wonder at what lies behind that word ‘faff’. How dismissive it seems and how it may hide the intricacy of the activities it describes. How it is a softer word than frustration and anger. Here are Dan’s legs. Sometimes ‘fizzy’ and spasming and painful and how wearing that can be. The knuckle he might use to dig into his leg to trigger a spasm because sometimes a spasm is a relief. A relief from the tension that builds and builds in his calve. Here is how Dan has learned his body’s nuances, like nurturing a newborn baby, slowly determining what each cry and whimper might mean. How he talks to his body and his legs and soothes them: 'I used to get so frustrated with my legs and I wanted to just punch them and shout ‘fking leave me alone’. Whereas now I’m much more like with a baby where they’re quite distressed and you want to soothe it and calm and almost listen to it and say ‘OK why are you upset?’’ I feel that as his body does things he cannot control, and cannot prevent, and sometimes cannot soothe or stop, it is almost as if his body is not of himself but a different creature altogether. I hear in his words that Dan’s body is both him and not him, a splitting of sorts. They are in relationship, a dialogue, a negotiation. And here is the pacing. Pacing because fatigue is a ‘biggy’. Fatigue that can feel like a crap car with no power, even when he puts his foot down. Thus each activity is peppered amongst naps and stops, ‘spacing it out a bit helps a lot’. Food chopped, cooked, and eaten over time. Part-time work and not doing things straight afterwards. Here is the knowledge that if he pushes past what he knows he can do there are consequences, he pays the price. Pain, more tiredness and maybe a relapse. And here is the relapse. Feared and unknown. He does not know when it will come just that probably it will as it has done before. And with a relapse comes fear and new learning and new losses. Perhaps more things his body cannot do. And describes how each relapse will send him round the cycle of grief again: avoiding thinking about it, filling his space with distractions, pinning his hopes on steroids, worry, depression. He is in that avoidant place right now, he confesses. He has niggling thoughts, a feeling that although he has been stable for a while his legs are getting weaker and he doesn’t want to think about it too much. Because Dan knows MS is a degenerative disease. He can project forward in his imagination and see a time when he is bed ridden and unable to feed himself. And he has to live with that image, knowing it to be a possibility. And what helps with these images and this fear? What helps is what brings life and energy and creativity. Things where Dan feels ‘me’: nature and trees and green things and cloud watching and writing and journaling and blogging. Things that nurture his soul and connect him with God. He also finds voices and ideas that give hope, value, and worth to his experience. Voices and ideas that help him to see that this unlooked for painful experience has drawn him into the deeper mysteries of life, down past the everyday into a land of complex thought and wonderment. And here Dan speaks of the ‘dark night of the soul’. A place where he knows his own loneliness and separation from others. Whilst everyone at their core is alone he says, his is more apparent. And he doesn’t want to be different or to be singled out. But he cannot escape it. His disability confronts him with it. And he is reminded of that time, that time a few years ago, when he was at his worst, spasms, fatigue, no sleep, no sleep, no sleep. And he thought - if I have just one more bad night’s sleep, that’s it, I give up. But that night he slept OK and then he got powerful drugs which seeped through his body offering a peace of a sort. But he remembers that despair vividly. He feels the emotion now as we speak: ‘not a person’, ‘out of control’, ‘isolation’, ‘totally dead’. And he remembers how angry he was with God, ‘where the fking hell are you?’ How utterly abandoned by him he felt ‘you fking st’. 'This isn’t what my many years in church has told me was going to happen, I was given no framework for this and it was like the foundations, everything that you’ve built your life on, that form the fundamental part of your world view, have suddenly just shattered and your just left with this rubble and you think, well what the fk am I meant to do now! Which is why since then my journey has been discovering that I know there are foundations that I can build my life on and there is a deeper reality than what I’ve been told from church.’ And yet, despite this Dan still believes in God. But a different kind of God. A God who inhabits the term ‘a good God’ learned in church, but differently, more creatively. A God who can deal with the ‘st’. And in facing his own pain and finding these deeper realities he is able to bare witness to and hear the pain of others in a way he wasn’t able to do before. He shares this wisdom with MS sufferers on internet forums. He is able to offer them hope as these voices and beliefs offer him hope. Listening to Dan I feel that these beliefs and thoughts and processes are key, fundamental to his existence. He speaks most eloquently and extensively on this topic over the course of the hour. I feel it interests him, fuels him, and drives him. Grappling with ideas such as these seem to have saved him from utter despair and to have given his life meaning, purpose and depth. I am touched deeply as I listen. Moved that he has battled so hard not only with his body but with these big existential questions. I feel he could so easily have slipped entirely into self-pity or into distracting activities but he has chosen to face his suffering head on, grip it with his hands and work with it. When he talks about ‘the dark night of the soul’ I feel like I am listening to someone twice Dan’s age, a sage, a hermit, a wise man. And here are the people in Dan’s life. The long pause as he thinks about how his MS affects his relationships. Here are his friends and how he says his MS hasn’t changed their way of relating. And how he doesn’t have much to say about that, he’s never really asked them and they’ve never really said. He says he can be quite oblivious sometimes and not self-aware. I don’t pursue him on this, but I wonder how something so life changing to body and soul cannot effect friendships. I am curious about this oblivion and lack of awareness after hearing him speak so deeply and honestly about his suffering and his beliefs. I wonder if I talked to his friends if they would say the same thing. Perhaps they would. And here also, as I ask quite generally about the other people in his life, I expect him to volunteer thoughts about his family, the siblings and parents I know from other conversations he has, but he doesn’t. And again I don’t pursue. It makes me think that perhaps it is enough for Dan to contemplate the suffering his MS has caused his own soul and body. Perhaps to ponder at the difficulties his MS, both in its discovery and over time, may have caused others would just be too painful. I fantasise that why he hasn’t asked others, the oblivion, and the lack of self-awareness on this issue is a form of protection. And perhaps this is why his friends haven’t said things to him either. But when I ask specifically about his wife, he is very forthcoming. She is a companion ‘we’ve gone on this whole journey together’. A fellow traveller who with her own struggles with ME knows and shares in some of his frustrations. He speaks of how their relationship gives him meaning, and purpose, and a reason to keep going. He feels lucky and grateful to have her. He knows of other MS suffers whose partners haven’t been able to handle the situation, partners who have left, walked out. But he cannot help but feel like a ‘weight’ and a ‘shackle’. He is anxious about the future for her and imagines how his decline will affect her and the burden he might be. And yet, he chooses to see this as a motivator for engaging with life so that his wife isn’t married to a ‘shell’. He loves that they can engage with life together and journey into its depths ‘two is better than one’. And here is Dan’s bemusement with strangers. How he is interested by their reactions to him. How it is foreigners and immigrants who will offer to push him up hills not white English people. Offers which he usually does not accept as he wants the exercise, as well as the independence. And how people some will talk to the person pushing his wheelchair rather than to him. And just as I wonder whether his detached observations cover a deeper resentment - here is Dan’ passionate anger with those who park in disabled bays and other ‘evil people’, he jokes, who ignorantly make using a wheelchair more difficult. Here is the note he left on a driver’s windscreen once ‘you have my parking space, how about having my disability’. And how the lady returned to her car but didn’t see the note, she just drove off, ‘[I] felt a little bit deflated’. And while he knows people are just people that they don’t do it maliciously and not always on purpose he wants them to feel ashamed of their behaviour and their ignorance. This is the most animated I have seen Dan as we have chatted. As the anger stirs within him I think about how vibrant and vivid he seems. That maybe his anger is a way of asserting his existence to those who do not see and do not want to think about him and others with disability. I think that his anger holds power within it and how that feeling of power must contrast with the feelings of being out of control and being a burden that he has described already. And here is me and Dan, here in this moment, in his flat at the end of our time together. And I am aware I have powerful, nagging thoughts about before he was ill and after. He has not mentioned before while we have been talking. I wonder if he has these thoughts too, thoughts he hasn’t mentioned so far. So I ask. And in asking I learn that Dan does not think in these terms ‘it’s been so long’ he says, ‘I don’t really remember’. And then he speaks of seeing himself as more deluded before, caught up in his self-importance, superficial, and avoiding any ‘inner work’. He can remember things that he could do with his body but he doesn’t give details and he doesn’t seem to speak with nostalgia. He sometimes has dreams, he says, where he is much better and surprises himself by being able to walk or run, ‘blimey’. But so powerful a dichotomy is before and after in my head, I am curious that Dan doesn’t have more to say. But then, he offers another thought ‘if things were different maybe I wouldn’t have got ill … how much of this is psychosomatic?’ And although he knows it is complex and there are many factors involved I wonder whether this is a difficult thought to think and a reason not to dwell too much in the past ‘what’s done is done’ he says. And here I find myself agreeing. For it seems to me that these are damning thoughts that perhaps house thorns such as personal responsibility, and guilt, and what ifs. So I wonder at myself and why I had such a strong sense of wanting to know about before and after. What does this say about how I view Dan and illness and life changing events? And here are two things I know about Dan that are not recorded but that flow into this taped narrative and help create Dan in my mind’s eye. Two things I returned to Dan with later and asked if I could share because I feel they add something to his story that we did not cover in our interview. The first is his recent sky dive for charity. The months he had waited to do it because the weather conditions needed to be just right because he can’t use his legs properly. How the straps of his harness dug into his thighs. How odd and amusing it was to be strapped to the main guy in the plane on the way up, sat on his lap. The serene float down to earth after the parachute was pulled. The beautiful pictures I have seen of this event, Dan saluting the cameraman as they are in free fall. How thrilling and awe-inspiring he found it, ‘it was proper awesome’. How his eyes light up when he talks about it. How he would do it again. The second is the memoirs he is writing. How his mind has encapsulated some memories, making it difficult to place in a timeline. How he realises he only has his own perspective on his experiences with MS so he is checking in with other others in his life and asking how it was for them. And how, despite Dan inviting them to be candid, ‘they generally said about being impressed by how strong I was. I’m sure they were, but that also feels like quite a British way to answer.’ His curiosity of others intrigues me and seems like a contrast to his oblivion and lack of self-awareness he spoke of in the interview. Here is Dan opening a small window into who he is, as he sees himself, today. Here is Dan using words that can never fully describe a complex physical world and an intricate inner life that I have not experienced, ‘I don’t know how to describe it’ he says at one point. Words that reach across the gap from him to me and mingle with my story and my thoughts. And how the space between us changes these words into relationship, and understanding, and confusion, and curiosity, and knowledge. How both of us in ways yet unknown leave this interview changed. And I am aware that now minutes, hours, days, weeks and months have passed since this interview. How Dan will have changed, new experiences, new thoughts, and the words he might use now, here in this moment, could be very different. And I marvel at human beings, how unique we are and how we strive so hard to share how it is to live in our own skin.’

…thank you for sharing this with us Dan, and thank God my knowledge of the english language is sufficient to read through this wonderful piece of writing. Still, I need a second helping later to ‘digest’ it properly. Also, this foreigner will also push you up that hill depending on the size of it AND the amount of time available to fulfill that task… :wink:

he_funk wrote:

A friend of mine, Tess, is training to be a therapist. She needed to do a research project for her course and she asked if she could interview me, to try and understand in depth how it is for me to live with MS. Instead of writing the project like a normal academic report, she felt drawn to write it much more like a poem. As she said in the report, “By offering my research in a slightly poetic format I was able to engage with and absorb Dan’s lived experience more deeply. Moreover, I found in writing this way the meaning and nuances within my encounter with Dan unfurled and stretched out in front of me. As Thomas Moore says of poetry ‘ [it] doesn’t seek an end to meaning’. I felt this method honoured the ambiguity and mystery inherent within a human life and within human relationships. Furthermore, the style allowed for the transience of the interview. I was so keenly aware that I spent only just over an hour with Dan and often in the process of this project I felt the weight of responsibility in trying to capture and share a whole existence from such a brief meeting. In writing this way I felt the immediacy and ephemeral nature of our time to together became part of the beauty of human encounter.” And so the rest of this post is her work. It is a beautiful gift that left me both simultaneously proud and humbled to have been a part of. ‘I invite Dan to speak. I want to know how it is to be you I say. I see myself as enabling you to tell your story and I don’t really have any other agenda than that. Here is Dan. Here is Dan’s body. His body that in his twenties became an unknown for him and ushered in experiences that he had never had to deal with before. Here is Dan’s body and the equipment he needs to get through the day: the wheelchair, the walking frame, the board across the bath to sit on, the catheter twice a day and the drugs. Here is the time it takes to have a shower. The effort it takes to take off his trousers, ‘when you can’t use your legs all that well’. How his feet can burn and prickle and the cold water he sometimes needs to calm them. How numbness in his fingers makes doing up a shirt button ‘tricky’. His tinnitus and tiredness while we are talking, his loss of concentration, his loss of memory, his difficulty in sleeping, ‘groggy’, ‘fog’, ‘heavy’, ‘haul’, the ‘faff’, the ‘faff’, the ‘faff’. And I wonder at what lies behind that word ‘faff’. How dismissive it seems and how it may hide the intricacy of the activities it describes. How it is a softer word than frustration and anger. Here are Dan’s legs. Sometimes ‘fizzy’ and spasming and painful and how wearing that can be. The knuckle he might use to dig into his leg to trigger a spasm because sometimes a spasm is a relief. A relief from the tension that builds and builds in his calve. Here is how Dan has learned his body’s nuances, like nurturing a newborn baby, slowly determining what each cry and whimper might mean. How he talks to his body and his legs and soothes them: 'I used to get so frustrated with my legs and I wanted to just punch them and shout ‘fking leave me alone’. Whereas now I’m much more like with a baby where they’re quite distressed and you want to soothe it and calm and almost listen to it and say ‘OK why are you upset?’’ I feel that as his body does things he cannot control, and cannot prevent, and sometimes cannot soothe or stop, it is almost as if his body is not of himself but a different creature altogether. I hear in his words that Dan’s body is both him and not him, a splitting of sorts. They are in relationship, a dialogue, a negotiation. And here is the pacing. Pacing because fatigue is a ‘biggy’. Fatigue that can feel like a crap car with no power, even when he puts his foot down. Thus each activity is peppered amongst naps and stops, ‘spacing it out a bit helps a lot’. Food chopped, cooked, and eaten over time. Part-time work and not doing things straight afterwards. Here is the knowledge that if he pushes past what he knows he can do there are consequences, he pays the price. Pain, more tiredness and maybe a relapse. And here is the relapse. Feared and unknown. He does not know when it will come just that probably it will as it has done before. And with a relapse comes fear and new learning and new losses. Perhaps more things his body cannot do. And describes how each relapse will send him round the cycle of grief again: avoiding thinking about it, filling his space with distractions, pinning his hopes on steroids, worry, depression. He is in that avoidant place right now, he confesses. He has niggling thoughts, a feeling that although he has been stable for a while his legs are getting weaker and he doesn’t want to think about it too much. Because Dan knows MS is a degenerative disease. He can project forward in his imagination and see a time when he is bed ridden and unable to feed himself. And he has to live with that image, knowing it to be a possibility. And what helps with these images and this fear? What helps is what brings life and energy and creativity. Things where Dan feels ‘me’: nature and trees and green things and cloud watching and writing and journaling and blogging. Things that nurture his soul and connect him with God. He also finds voices and ideas that give hope, value, and worth to his experience. Voices and ideas that help him to see that this unlooked for painful experience has drawn him into the deeper mysteries of life, down past the everyday into a land of complex thought and wonderment. And here Dan speaks of the ‘dark night of the soul’. A place where he knows his own loneliness and separation from others. Whilst everyone at their core is alone he says, his is more apparent. And he doesn’t want to be different or to be singled out. But he cannot escape it. His disability confronts him with it. And he is reminded of that time, that time a few years ago, when he was at his worst, spasms, fatigue, no sleep, no sleep, no sleep. And he thought - if I have just one more bad night’s sleep, that’s it, I give up. But that night he slept OK and then he got powerful drugs which seeped through his body offering a peace of a sort. But he remembers that despair vividly. He feels the emotion now as we speak: ‘not a person’, ‘out of control’, ‘isolation’, ‘totally dead’. And he remembers how angry he was with God, ‘where the fking hell are you?’ How utterly abandoned by him he felt ‘you fking st’. 'This isn’t what my many years in church has told me was going to happen, I was given no framework for this and it was like the foundations, everything that you’ve built your life on, that form the fundamental part of your world view, have suddenly just shattered and your just left with this rubble and you think, well what the fk am I meant to do now! Which is why since then my journey has been discovering that I know there are foundations that I can build my life on and there is a deeper reality than what I’ve been told from church.’ And yet, despite this Dan still believes in God. But a different kind of God. A God who inhabits the term ‘a good God’ learned in church, but differently, more creatively. A God who can deal with the ‘st’. And in facing his own pain and finding these deeper realities he is able to bare witness to and hear the pain of others in a way he wasn’t able to do before. He shares this wisdom with MS sufferers on internet forums. He is able to offer them hope as these voices and beliefs offer him hope. Listening to Dan I feel that these beliefs and thoughts and processes are key, fundamental to his existence. He speaks most eloquently and extensively on this topic over the course of the hour. I feel it interests him, fuels him, and drives him. Grappling with ideas such as these seem to have saved him from utter despair and to have given his life meaning, purpose and depth. I am touched deeply as I listen. Moved that he has battled so hard not only with his body but with these big existential questions. I feel he could so easily have slipped entirely into self-pity or into distracting activities but he has chosen to face his suffering head on, grip it with his hands and work with it. When he talks about ‘the dark night of the soul’ I feel like I am listening to someone twice Dan’s age, a sage, a hermit, a wise man. And here are the people in Dan’s life. The long pause as he thinks about how his MS affects his relationships. Here are his friends and how he says his MS hasn’t changed their way of relating. And how he doesn’t have much to say about that, he’s never really asked them and they’ve never really said. He says he can be quite oblivious sometimes and not self-aware. I don’t pursue him on this, but I wonder how something so life changing to body and soul cannot effect friendships. I am curious about this oblivion and lack of awareness after hearing him speak so deeply and honestly about his suffering and his beliefs. I wonder if I talked to his friends if they would say the same thing. Perhaps they would. And here also, as I ask quite generally about the other people in his life, I expect him to volunteer thoughts about his family, the siblings and parents I know from other conversations he has, but he doesn’t. And again I don’t pursue. It makes me think that perhaps it is enough for Dan to contemplate the suffering his MS has caused his own soul and body. Perhaps to ponder at the difficulties his MS, both in its discovery and over time, may have caused others would just be too painful. I fantasise that why he hasn’t asked others, the oblivion, and the lack of self-awareness on this issue is a form of protection. And perhaps this is why his friends haven’t said things to him either. But when I ask specifically about his wife, he is very forthcoming. She is a companion ‘we’ve gone on this whole journey together’. A fellow traveller who with her own struggles with ME knows and shares in some of his frustrations. He speaks of how their relationship gives him meaning, and purpose, and a reason to keep going. He feels lucky and grateful to have her. He knows of other MS suffers whose partners haven’t been able to handle the situation, partners who have left, walked out. But he cannot help but feel like a ‘weight’ and a ‘shackle’. He is anxious about the future for her and imagines how his decline will affect her and the burden he might be. And yet, he chooses to see this as a motivator for engaging with life so that his wife isn’t married to a ‘shell’. He loves that they can engage with life together and journey into its depths ‘two is better than one’. And here is Dan’s bemusement with strangers. How he is interested by their reactions to him. How it is foreigners and immigrants who will offer to push him up hills not white English people. Offers which he usually does not accept as he wants the exercise, as well as the independence. And how people some will talk to the person pushing his wheelchair rather than to him. And just as I wonder whether his detached observations cover a deeper resentment - here is Dan’ passionate anger with those who park in disabled bays and other ‘evil people’, he jokes, who ignorantly make using a wheelchair more difficult. Here is the note he left on a driver’s windscreen once ‘you have my parking space, how about having my disability’. And how the lady returned to her car but didn’t see the note, she just drove off, ‘[I] felt a little bit deflated’. And while he knows people are just people that they don’t do it maliciously and not always on purpose he wants them to feel ashamed of their behaviour and their ignorance. This is the most animated I have seen Dan as we have chatted. As the anger stirs within him I think about how vibrant and vivid he seems. That maybe his anger is a way of asserting his existence to those who do not see and do not want to think about him and others with disability. I think that his anger holds power within it and how that feeling of power must contrast with the feelings of being out of control and being a burden that he has described already. And here is me and Dan, here in this moment, in his flat at the end of our time together. And I am aware I have powerful, nagging thoughts about before he was ill and after. He has not mentioned before while we have been talking. I wonder if he has these thoughts too, thoughts he hasn’t mentioned so far. So I ask. And in asking I learn that Dan does not think in these terms ‘it’s been so long’ he says, ‘I don’t really remember’. And then he speaks of seeing himself as more deluded before, caught up in his self-importance, superficial, and avoiding any ‘inner work’. He can remember things that he could do with his body but he doesn’t give details and he doesn’t seem to speak with nostalgia. He sometimes has dreams, he says, where he is much better and surprises himself by being able to walk or run, ‘blimey’. But so powerful a dichotomy is before and after in my head, I am curious that Dan doesn’t have more to say. But then, he offers another thought ‘if things were different maybe I wouldn’t have got ill … how much of this is psychosomatic?’ And although he knows it is complex and there are many factors involved I wonder whether this is a difficult thought to think and a reason not to dwell too much in the past ‘what’s done is done’ he says. And here I find myself agreeing. For it seems to me that these are damning thoughts that perhaps house thorns such as personal responsibility, and guilt, and what ifs. So I wonder at myself and why I had such a strong sense of wanting to know about before and after. What does this say about how I view Dan and illness and life changing events? And here are two things I know about Dan that are not recorded but that flow into this taped narrative and help create Dan in my mind’s eye. Two things I returned to Dan with later and asked if I could share because I feel they add something to his story that we did not cover in our interview. The first is his recent sky dive for charity. The months he had waited to do it because the weather conditions needed to be just right because he can’t use his legs properly. How the straps of his harness dug into his thighs. How odd and amusing it was to be strapped to the main guy in the plane on the way up, sat on his lap. The serene float down to earth after the parachute was pulled. The beautiful pictures I have seen of this event, Dan saluting the cameraman as they are in free fall. How thrilling and awe-inspiring he found it, ‘it was proper awesome’. How his eyes light up when he talks about it. How he would do it again. The second is the memoirs he is writing. How his mind has encapsulated some memories, making it difficult to place in a timeline. How he realises he only has his own perspective on his experiences with MS so he is checking in with other others in his life and asking how it was for them. And how, despite Dan inviting them to be candid, ‘they generally said about being impressed by how strong I was. I’m sure they were, but that also feels like quite a British way to answer.’ His curiosity of others intrigues me and seems like a contrast to his oblivion and lack of self-awareness he spoke of in the interview. Here is Dan opening a small window into who he is, as he sees himself, today. Here is Dan using words that can never fully describe a complex physical world and an intricate inner life that I have not experienced, ‘I don’t know how to describe it’ he says at one point. Words that reach across the gap from him to me and mingle with my story and my thoughts. And how the space between us changes these words into relationship, and understanding, and confusion, and curiosity, and knowledge. How both of us in ways yet unknown leave this interview changed. And I am aware that now minutes, hours, days, weeks and months have passed since this interview. How Dan will have changed, new experiences, new thoughts, and the words he might use now, here in this moment, could be very different. And I marvel at human beings, how unique we are and how we strive so hard to share how it is to live in our own skin.’

Wow how amazing was that? That was an incredible experience to have! How wonderful it would be if we each had our own narrator who could express to others what our lives actually felt like, as clearly and eloquently as that! Tess did a great job, you must be thrilled - and congratulations on the sky dive!

Oscar1 wrote:

Good piece of poetry, but why is it a he? Tony

Hi Tony, I used “he”, as using “she” in an analogy about gatecrashers might not have had quite the same connotations of possible physical threat - if that makes sense!