Thursday 30 April 2009

1 May 2009

I guess I should consider myself lucky. I am surrounded by love - from my children, my family, even my ex-wife. But I don't. Well of course I do. How much of an ingrate would I be not to feel very fortunate to be surrounded by people who care about me?

But what I want, more than anything, is to feel the love of a good woman; C is a good woman. She had a gift for making me feel so many things that I didn't feel since my diagnosis, to feel good about myself, to feel desired.

And now I have lost that. Were I emotionally stronger, I could wait, to see if things changed, to give her space. I think since the MS I have changed. I am in uncharted territory. I used to say that if something wasn't right, I would just walk away. I was a hard bastard. Not callous but hard. I suppose it was a form of self-preservation, avoiding preventable unhappiness. Now I find it extremely difficult to just walk away. I want to try to fix what can be fixed if it can be fixed, not to just discard it on the basis that it might not be fixable. The trouble is, it tends to manifest itself as a kind of obsession. Now that's not an attractive proposition to any woman.

The saying goes that we always hurt the ones we love. Well I've certainly hurt my boys. I have been perhaps too honest with them about my relationship with C, and they feel responsible. They shouldn't. There is only one person responsible for that, and it's me. I should have done more for her, not taken her for granted, not got caught up in a status quo that I felt was right for me but left her feeling unappreciated and isolated from my family.

When I finally took the bull by the horns and seized an opportunity to introduce her to my brothers, as she said, it was too little too late. I always preferred the maxim 'better late than never', but I suppose that doesn't cut it when it's not me that is making the judgement.

Ironically, I think one of C's greatest fears was of being left to care for me on her own, if the worst came to the worst. I am sure, as sure as I can be, that now that simply wouldn't be the case. My family have rallied round in a way that I would never have thought possible. I have always felt proud of my family, of how supportive we are when push comes to shove. But now I know it to be really true.

But we are where we are. I have been the architect of my own downfall, and have to live with the consequences.

30 April 2009

Well, it is done. As, pretty much, am I. I took C's stuff back today. Left it on her doorstep, rang the bell and walked away, not quickly (I can't do that at the best of times, far less after driving 25 miles) but with ne'er so much as a backwards glance. As I returned to my car it felt like a load had been lifted from my shoulders. Of course I imagined her running after me, but I also knew that wasn't going to happen. However strong our love may have been at one time - and I have my doubts that it was ever that strong - it has long since withered. My only regret is that, deep within, I am a caring person. I always want to leave the door ajar in case a person should change their mind. I have never been as other men (and women, come to that) who start trawling for their next opportunity as soon as the present one looks shaky. It is, however, a flaw that leaves me exposed to being taken for a fool and hurt.

Hope leads to more hope, reading into small signs meaning that is not there. You would think that having reached nearly 47 that I would have learned by now. So would I.

Tuesday 28 April 2009

28 April 2009

I didn't exactly spring out of bed this morning, more of a roll and a careful verticalisation, followed by the customary standing straight, tensing my leg muscles to make sure they're ready to do what I try to make them do. I moved sideways to open the curtains. It's strange to move like a crab, but after my physio yesterday, that was one of the balance exercises I was given. And in my small flat, it's actually quite appropriate.

I looked out on a beautiful sunny day and felt mixed emotions. Don't get me wrong, I can appreciate a beautiful sunny day as much as the next man, but as I hobbled to the kitchen, carefully using the walls and door frame for a little extra support, I missed having a spring in my step (metaphorically). I recall how much better, more positive, more... I don't know, but just more... I felt when I was working. Now it's just 'another day in paradise'. Nothing much to do, except what I choose to do.

I'll repair the leg that's come off the futon (again). And I'll do the washing up. Maybe have a shower, if I can summon up the energy to climb over the edge of the bath.

Yep, another day in paradise.

Monday 27 April 2009

26 April 2009

Life is like a rollercoaster at the moment; this weekend has been a case in point.

Yesterday my eldest brother pitched up at C's house to collect my stuff. I hadn't asked him to and C had explicitly requested that I leave it for a while. C is having a hard time of it at the moment. I'm not sure what her thoughts are but I do know that, whilst we have split, I really want her to be a part of my life, in whatever way is possible. I know that the MS is a factor, but not the only one. I made many many mistakes in our two years together. Now, normally this wouldn't be an issue. Everyone makes mistakes, some more serious than others, but you deal with them and move on.

When MS is part of the picture, it becomes much more complicated. Because I needed her to make allowances for my inability to do things that, say, five years ago I would have done in a heartbeat, everything else takes on a greater significance because there is no compensatory benefit, no quid pro quo. At present, I can't even afford to buy her flowers although perhaps if I gave up smoking I could. In truth I had to rely on the parts of me that were not disabled and just hope that they were enough.

Perhaps they weren't. Perhaps that is what C is taking time out to figure out. I can only wait and hope. The irony of it all is that C has been one of the few people is my life who I have known for sure doesn't pity me. She pities herself to some extent, in terms of regretting that she didn't know me before MS. I agree with her on that; I was a much more assured and able individual then. Cocksure and arrogant at times perhaps, but we all have our faults, don't we? Most of all though, I could go anywhere and do anything. I didn't have to think ahead, or cry off because I felt too tired. These problems, difficulties, issues call them what you will, C never complained about. I'm sure they bothered her. After all, what right-minded person wouldn't be bothered? But she bore them with a fortitude that was exceptional, for someone of her relative youth and as active as any mother with children.

At times I have wondered why she would ever have been interested in me. It certainly was never my wealth, since I never has that much and am now poor as a church mouse; she's always been away, roughly, of my financial situation. And the MS, oh the MS. She has always been so sweet about it. When we first me, she was googling to find out about it, often telling me things I didn't know. So I had to conclude that it was the core of me that mattered to her, which made me feel very normal. It meant that I could just be me.

But back to the events on Saturday. At first I was perplexed at the reasoning behind the intrusion into my life. The visit to C's house to collect my stuff, without my knowledge, without C's consent, felt like an appalling intrusion, however well meant.

I had resolved just to leave it for the time being. I had shared my dilemma with my new best friend, L, who had suggested leaving it for a bit, respecting C's space. That was all derailed by what happened. I felt obliged to contact C and explain that it was not my doing. I don't know if she'll believe me. If not it could destroy what I had been trying to do. I emailed all my family asking them not to do things again without my knowledge. So much has already been stripped from me by the MS that where I can make my own decisions I really want to do it. No, it's more than that: I need to do it.

The day ended much better than it had begun. I had a really nice coffee and chat with L, sitting on the front step, enjoying the sunshine. It reminded me of being in Sydney, Australia or Mansdeville, Jamaica, where it is pretty much an obligation to sit on a veranda and enjoy the warmth. Ah, happy days.

Then I had dinner with my eldest brother. We had a good long chat and I think cleared the air. He was very apologetic and the conversation was easy and frank. Perhaps at last people will begin to understand me.

Saturday 25 April 2009

25 April 2009

I feel very proud today. My first born is starting his first Saturday job, a major milestone. It drives home to me how lucky I am to have two sons of whom I can be so proud. Despite all the nonsense and disappointments and difficulties in my life, some of my own making, some out of my control, they have been a constant source of pride, love and support to me. It sounds too morbid to say they are my reason for living - in any case, how could I know what path my life might have taken if I had not had them - but they both make my life more complete, more happy.

I worry about them though. Both are going through public exams at the moment, and I know they are both feeling the stress. I wish I could do something to make it easier for them, as I have tried to do throughout their lives, but I know that this time they have to do it themselves. I hope I have contributed to giving them the tools that they need to face up to the challenge. I hope that they will talk to me or their mother if they need to.

I remember with great happiness the times when I took them up to bed, one on my back the other clinging to my front. Good memories. And I remember reading to them at bedtime. Always the same routine, the elder one would be asleep within a couple of minutes of me starting, the younger one would lay in his bunk, eyes glued to me, not sleeping until I stopped reading. Happy memories.

Now they are almost grown men, and the words my father told to me keep on coming back into my mind. "Eventually, the child becomes the parent, and the parent the child." Although it was not meant to happen for many years, the process has already started. They look out for me when I'm with them; when we are out together, I'm always aware of them, one on each side of me, close enough to catch me if I stumble, but not too close to make me feel like an invalid. I've never talked to them about it, but I guess it's something that perhaps they have talked about between themselves. When I leave them, they always want me to phone them when I get home or if I forget, which I often do, they phone me, just to make sure that I'm okay and got home safely.

Whatever I have done to help them become the fine young men they are today, I can't tell. All that I know is that they make me very proud, each and every day. I love them, more than they will ever know.

Friday 24 April 2009

24 April 2009

Today really has been a day of great contrasts. It started off below average, not for any special reason but mostly because I had things on my mind.

I've been thinking a lot about my housing situation. Losing what little I have of my independence is a heavy blow. Also the fallout from my failed relationship has been a bitter pill to swallow.

Then, as if by magic, my new best friend sent me an email. Because she uses a Gooseberry, she can send and receive emails wherever she happens to be. This morning she was on a train, and asked me how I was. Now, the definition of a bore is someone who, when you ask how they are, tells you. Thankfully my new best friend doesn't seem to care.

So I recounted my tales of woe. Explained how I feel and how sad I am about the fallout from the relationship (mostly of my own making) and my housing problems (mostly not). Back came a thoughtful and considered response, together with some of her own issues. And hey presto, instant clarity. Not solutions, but clarity. That is what makes her such a wonderful confidante. No judgement, no solutions, no easy answers. Because there are none. But thoughts and ideas that helped me get my head together.

Just what I needed. Ivan supposed to be helping her, not the other way round. But then perhaps it is helping to know that someone else shares your own hopes and fears and problems.

Whatever, she has certainly helped me, more than she could ever imagine.

Thursday 23 April 2009

23 April 2009

Today has been a good day. I have now had three people tell me I should turn this into a book. It's strange because I only started writing it as a cathartic exercise for myself, then put it on here because I liked the format, and only very recently told friends and family about it. But I would be lying if I was to say that I'm not flattered, and I think I will take their advice.

I don't look much for books on MS - other than The Dummies Guide to MS and one or two others, but they're self-help books on living with the wretched condition. I don't know if there are books about experiences of real people and our feelings. I find it a little perverse that we all tend not to express our feelings very freely; with MS that's about all you have that continues to work very well.

Of course that's not true, as most of me works quite well indeed, but it's my words and my feelings which continue without limit. In my mind, I can run a marathon, leap giant buildings in a single bound. Or just walk down the road without a walking stick and without tripping over every wretched lump and bump that the local authority in their infinite wisdom sees fit not to repair.

My brain is unaffected by MS, or perhaps more accurately my mind is unaffected. Those dastardly plaques, I think they're called, on my brain clearly affect me in some way or other. The point I'm trying to make is that I am disabled, but not incapable of independent thought, original ideas, problem solving, as well as love, caring, compassion, pain, sorrow, frustration, joy, laughter, tears and a whole lexicon of nouns, verbs and adjectives.

If I was ever to lose any of those, which I might add, won't be due to the MS, I give my irrevocable consent to anyone who loves and cares about me to take me out and shoot me. For without those, I will truly be nothing.

Tuesday 21 April 2009

22 April 2009

Yesterday was a low point. Lower than I had ever imagined in my darkest moments that it could be. My brothers and my dad came round. A posse riding to my rescue. And yet. And yet.

It felt like I has been stripped of the last vestige of dignity and independence. They came to offer me help. I know I need it and I know that if I can accept it from anyone it is them.

I love them all with every breath in my body. In other circumstances I know - and they know - that I would do the same for any of them in a heartbeat. But that didn't make it any easier. The more they went on about how desperate my situation is the more it cut into me until the tears welled up in my eyes and I wept.

I so didn't want to do that, so badly wanted to say 'I'm fine' but I couldn't speak. And they sort of understood but not really. They understood that it's about my independence slipping away and assumed I guess that it's my pride that is important. Once upon a time that would have been true but my pride went a long time ago, along with my dignity. Now all that is left is my independence. The one thing that I
clung to, that I still had some control over. MS has removed all control that I has over most things in my life and now it is taking my independence too.

I suppose I sound ungrateful. Most people would be glad of family who were willing and able to put action to the unconditional love that I have always enjoyed. And I'm not ungrateful.

Just feeling fragile and lost and alone.

Monday 20 April 2009

20 April 2009

Today I know someone very special. I didn't meet her today, I've known her for some time, but today I realised how special she is. I won't name her because that would be violating her privacy. I may give her a name at some point, but it won't be her real name.

She's a friend of the family. But she's very special to me. Why? Because she is riding the same emotional rollercoaster that I am. For different reasons, yes, but it is a shared experience nonetheless. She is sick, receiving treatment and we all hope she will make a full recovery. But that is in the future.

At the moment she is feeling lost, lonely, isolated and fearful that she is losing her independence. All because of a bloody illness. I have not before met anyone who truly shares and understands how I feel. My family try. All of them, but only my ex-wife gets close to understanding me. This is a little awkward, given that we have been separated for some seven years, but the she has known me for more than 25 years, so I guess it's only to be expected.

Were my ex-partner and I still together, no doubt this would be a source of intense annoyance to her, perhaps jealousy, perhaps anger. But I can only say, if she reads this, that it is no reflection on her, nor is it through any intent or impropriety on my part. It's just the way it is. My ex-partner is a lovely woman, beautiful and caring. But she could never understand what I am going through - through no fault of her own, and no failure on my part to be open, but simply because the feelings are unique.

Only a person who has suddenly, and inexplicably - by a roll of the dice by some malign force perhaps, but more likely no more than misfortune - been inflicted with some grotesque condition can possibly understand. When I met my ex-partner she knew I had MS. I had only been given the confirmed diagnosis two days before we met. It was among the first things I told her. I also told her that I didn't want it to be an issue; it would always be there, and she understood that there was a better than even chance that it would become worse over time. Unfortunately, she took me at my word. I didn't realise, and nor I suspect did she, that whilst I didn't want her to treat me any differently, I needed her to.

Our relationship was probably doomed from the outset. Because of my lack of self-awareness. I guess that makes me the dumbest smart person alive. But we are where we are. Nothing I can do or say can undo what has happened. That makes me sad.

But to return to my new friend. We were talking a couple of days ago, after a very agreeable dinner at my parents' house. Five of us were sat in their lounge, letting our roast beef and yorkshire pudding settle, and we started talking. She was recounting how she felt, and nobody quite got it. They all thought they understood, and they did, to an extent. They understood the words she was speaking, but not the true, deep, emotional meaning of those words. Suddenly it dawned on me that she was speaking my language, a language that was a mystery to everyone else in the room. I tried to interpret for the others, but it was only partially successful. How do you explain a concept that someone has no knowledge of? You might just as well try to explain particle physics to a neanderthal. It meant as much, because they had no framework to put it into.

We understand so much by putting it into tidy little boxes, by comparison and analogy with experiences that others will understand. But the feelings are so deep, so alien to normal experience, whilst being superficially the same, that to explain them is impossible. How do you explain to someone the feeling of fear and isolation that comes from knowing what the future may hold, but only partially, in terms of 'might be' or 'may happen' or 'could do', and being unable to know, or to grasp, or to quite put your finger on it? When it affects your whole life, your future, your destiny, what you may do, or become. Ypur hopes and dreams and aspirations and ambitions snuffed out.

So this is where the two of us realsed that we spoke a common language. I can't define the language because only if you already speak it can you understand. But we do.

Sunday 19 April 2009

19 April 2009

Today I am sad. I joined a dating site and has been chatting to a nice woman a couple of times. On Friday night she seemed to be online but didn't reply to my messages. Then when I looked at her profile it had been deleted. Well, I can take a knockback but why couldn't she just say she's not interested? And why delete her profile? It makes me feel like there is something wrong with me - other than the obvious. So I can only assume that I just don't appeal to her after all. It's easier than believing that it's to do with the MS.

Perhaps I am too sensitive.

Friday 17 April 2009

15 April 2009

I am feeling content today. Came down to the bungalow last night with my younger son and it's one of the better decisions I have made recently. I have always loved being here. Peace, tranquility, solitude. Although there are other places nearby, most are holiday homes so are empty.

It's easy to forget about everything. Almost to forget about the MS. Well I did say almost. In truth it's no easier here than in my flat, but it feels so much better.

Like nothing matters.

Monday 13 April 2009

13 April 2009

I'm in a bit of a quandary. My dad has suggested that I should be claiming incapacity benefit rather than jobseekers allowance. In principle I agree with him, since it seems increasingly unlikely that I will again secure gainful employment. But, and it's a big but, I fear it will harm my chances of getting a decent settlement from the company that discriminated against me - since I intend to claim lost salary up to retirement. I think I'll have to delay that particular decision for the time being.

Sunday 12 April 2009

12 April 2009

Yesterday really was the best of times and worse of times.

I was up at 7 to bake rolls for my son's 18th birthday party. Yes I know that's what bakers are for, but I wanted to do something personal. Four batches later and I was knackered and still had citrus scented couscous to make. Luckily said son arrived with his lovely girlfriend and finished it off for me.

I think a stool in the kitchen would be an excellent idea. I tried to move my computer desk chair into the kitchen, but I wouldn't fit through the door. Damn those castors.

I did make it through until 11.30pm, which was unexpected, but by then I was fit to drop.

Another valuable learning experience on what I can and can't do, or at least how I need to adapt my life to my capabilities.

Sad but true.

Friday 10 April 2009

10 April 2009

I am very sad. I feel that circumstances are forcing me down a road that will ultimately mean losing my independence. I have fought hard all my working life to provide for myself and my family. And with some success.

Since the MS, everything that could go wrong has, pretty much. I've had two failed attempts at relationships, been unable to get work, suffered discrimination and run out of money.

The safety net that should be there, social security, is proving difficult to negotiate my way through and I have had the ultimate indignity of having to turn to my parents for financial support. They have been lovely about it but that hasn't made it any easier.

I am bowed but unbroken. I still see possibilities and ways out of this mess. I spoke to my best friend, who has always been a tower of strength to me, and her encouragement has really restored my positivity.

Tomorrow is another day.

Thursday 9 April 2009

9 April 2009

Have been in a reflective mood today. Why would somebody want to get into a relationship with somebody like me? I mean, I know that people date serial killers on death row, but they are generally regarded as nutters.

I know that I have many fine qualities, including a fine mind, I'm not bad looking (at least I don't frighten small children or make horses bolt), I'm caring and thoughtful. But really, honestly, is that enough?

Doesn't someone at least want a partner who starts off with the ability to go for a walk in the countryside or go shopping without having to plan it like a military operation, who doesn't need a nap without warning, who doesn't need a stick to walk, who doesn't lose balance randomly, who can have sex as much and for as long as they want? Aren't those fundamental requirements, at least for anybody under the age of 80?

This kind of reflecting leads to me being suspicious, cynical and guarded. These are not, I fear, likely to endear me to someone in the early days of a relationship - quite apart from the reasons for me feeling like that. And it means that in a relationship someone has to be totally oblivious to my condition, recognise my fears, and deal with the ups and downs that inevitably arise between any couple.

And I want to be treated like a 'normal' person, not an invalid, whilst needing a partner to recognise that I have the limitations of MS.

What are the chances?

Monday 6 April 2009

6 April 2009

It was the best of times and the worst of times. Well, apologies to Dickens for that, but he didn't have to deal with IKEA.

A visit to said Swedish megastore was necessary today and boy did I regret it. I knew it would be tough so planned a route that took full advantage of the cut-throughs and shopped like a typical man - straight to where you need to be, just do what you need and get out. Sadly, before doing what needed to be done, I was on my knees (almost literally). In general I love shops like IKEA, with totally smooth level floors, custom made for a cripple with foot drop to be able to slide over the surface without tripping. But the distance defeated me and I had to beat a hasty retreat, ably assisted by my darling younger son who is always happy to be on hand to ensure that I don't fall base-over-apex.

When I got home, an hour's sleep brightened me up a bit and I am able to write this.

Saturday 4 April 2009

4 April 2009

It is strange to feel that history is repeating itself. My last relationship finished when the MS symptoms began to show themselves. I had attributed this to the fear of my then girlfriend of the unknown. That actually may or may not be true; she may just have not been looking for a relationship at all.

But anyway, my present relationship also appears to be ending. Whilst MS may not be the whole of the reason, I'm sure it's part of it. Or at least, it's the part that I have least control over. It also makes me untrusting. I constantly ask myself why would she be interested in me. I know it's a bit silly because nobody is defined by their abilities, but I think that what I do have most to offer, that is unimpaired by the MS is my mind, my intellect. We talked so little in recent times, and yet I so wanted to talk.

Perhaps because I am looking for answers I am reading more into things than are there. I really don't know.