We’re so together

I have just spent a wonderful thirty-six hours with my daughter. It was so good to just have her here again, as it has to be just over a year since we last saw each other. In fact, it was the best visit we have shared in years. Normally when she comes up to Scotland, she stays with her step-brothers and spend the bulk of her time with her friends in the town they all lived, in before her dad took her to New Zealand. Reading that back, it sounds terrible, it’s not meant to, I am in no way what so ever complaining. We don’t have anywhere for her and her husband to stay in our flat, it is just too small. I fully understand that she also wants to spend time with her brothers and to catch up with her school friends. This visit was all for us. I so appreciate the fact that she both took the time, not to mention the money, to actually stay in Glasgow. Instead of being here for about 4 or 5 hours, they arrived here at our home Sunday at 10 am and stayed until just before 8:30 pm, returning again this morning, leaving with just enough time, to reach their flight home this afternoon.

Sunday was a day of laughter, memories and catching up. The two of us always have so many things to say, so much to share. That mother-daughter bond has never changed, it’s so unlike the relationship that I have with my mother. The second we are in the same room, it’s like we have never been apart. I always feel sorry for both Adam and John. They hover around the edges of our conversation, being permitted to add the odd comment or word, then we remember they are there and draw them back in for a while, before once more, slipping away into our own world. As is always the way when I have more than just Adam to talk to, my brain doesn’t really know how to cope, almost every fifth word, was either stuttered, stammered or forgotten before it reached my lips. Yet, they listened and waited for me to get there, unless, I made it clear that I was totally lost and needed rescuing.

It was the day, for chit-chat, the day to tell tales, to embarrass each other and to be a family. It was sheer bliss, even when it was mixed with my attempts to cook meals. Brunch turned out just as I wanted, the deforested smoke salmon, leftover from Christmas surrounded for once, by perfectly scrambled eggs and croissant, oh, and burnt fingers. Which is the standard accompaniment to anything, that has to go anywhere near a stove. Dinner was simpler, and if I’m honest, nearly totally cooked by Adam, and he did it all really well. He managed, this time, to keep my fingers nowhere near the stove. No expensive takeaway, no interruptions with ordering, delivery and all the fuss that normally takes over when they are here. From here on in, on all visits that follow, home cooking, is definitely, the way to go, somehow, it completed the feeling of a true family bond. Good food, good wine, good conversation, what more did we need to bond us all as a family again. It was just as perfect as I hoped, and by the end, I was just as tired as I knew I would be. Sleep was much needed and for that reason, most welcome.

I knew that today would be different, that it was going to be a day of tears and heartfelt discussion. Adam was at work and John, well poor John sat on the small settee alone, playing with his phone. I always new smartphones had a purpose, he played his role of constant silent strength, perfectly. We all knew that I had to broach the subject, that we had to discuss the forms that she is taking to her father, to have Jeffery’s grave deeds, transferred over to me. We also knew, that, they would be the springboard for the much-required conversation about my remaining years and of course, my death.

Although she hadn’t said it, both Adam and I had worked out that her visit had been prompted by everything I had written, about my plans for the future over the last few weeks. We were right. It had dawned on her that time is becoming limited and that what time we can spend together is precious. I did my best to put her mind at rest, that I totally understood that she has a life, a very busy life, and I didn’t want her to miss a second of it. She is right now in the throws of changing jobs and her now role, will be mega busy and so good for her. She’ll be jetting all over the place, and will have so many things, that will keep her away from her husband, that when they can be together, that’s what they must be. We are so alike that not only did I know why she was here, I also knew, that she would totally understand my need to know what my options are and what my future will hold, and how I want it all organised now. Yes, we hugged and yes, we got through a large number of tissues, as we are like any  other two humans who love each other deeply. Death is a painful subject, but it isn’t something any of us can hide from, or should hide from. I think we talked through all my decisions, what I need to find out about, and how I want everything written down, before any of it happens. It is so good to know she not only approved of what I am doing but, is also totally behind me and willing to help me in any way that she can. I didn’t have a single doubt it would be any different, but, I so needed to have her sat here, listening, holding me and understanding my words.

Adam’s timing to come home for lunch, couldn’t have been any better. It was just after 12 and I was struggling to change the subject. It wasn’t that I couldn’t have spoken about so much more, but, it felt like this was the right time, to move on. We both need space, a little time to absorb and to accept that our relationship is coming to an end. As I said, I know that I could hit a plateau, that there is a chance we could still be together 5 or 10 years from now, but, I’m not going to be here for long. I am very aware that things right now are moving, that now is the time to organise, as a flare could end this all tomorrow. If we had more time, if she didn’t live in London and me in Glasgow, things might be so different, but life is as it is. In a few days, we can talk again, as in a few days, the strength that we share, will return and our lives will go on. Right now, our emotions are still open and raw. Adam’s arrival brought us back to the now, and within minutes, we had rediscovered our laughter.

Yesterday, even once she was gone, I spent the rest of the day, still shedding the odd tear, and although I couldn’t see her, I kind of knew, she to was racked with emotions, slowly finding herself again, returning to the strong independent woman she’s always been.

 

Please read my blog from 2 years ago today – 16/02/2014 – Adding the years

All I could feel and hear was my pulse, it was thumping as though I had just run a mile, but I was lying in my bed trying to sleep. My head was on leaning slightly to my right and the entire right-hand side of my head was…..

 

 

 

How could she?

I opened an envelope yesterday that shattered something I have held onto for over 30 years, a promise I made to my son. I sat here with tears flowing down my face and an anger like none I have felt for years. Yet again, my Mother has screwed up my life, and I haven’t even seen her for 15 years. That woman has spent her entire life either judging me by rules no one would understand, or by doing things that make no sense. I had asked Adam to fetch from the chest by the TV, all my papers, which have all been stored in one large brown envelope. It contains everything about me, from my birth certificate, my scattered qualifications, right through to my divorce papers from my first marriage. Amongst them, I knew there was an envelope that contained the deeds to my son, Jefferys’ grave. I needed all the details so that I could finalise my plans for my own funeral. When Jeffery died, my Mother bought the plot for us, as we quite simply couldn’t afford to, when she did, she handed the papers to me and said that it was in my name, for our future use. I had no reason to ever look at it from then, until now. In fact, the only time I gave any thought to it was when I got divorced. My ex and I discussed it and as my Mother had paid for it, and I intended to be buried in Aberdeen with Jeffery, unlike my ex who had no other connection to the city, and with our joint belief that the grave was in my name, no we didn’t open the envelope and read them, well I logically took the deeds with me. When I opened the envelope yesterday, I couldn’t believe my eyes, what I saw there wasn’t my name, but my ex-husbands. There it was in black and white, the end to my promise, and my choice.

It took me several minutes to compose myself and to start thinking logically about it all. There had to be an answer, and I simply had to think it through rather than react. I phoned Aberdeen City Council, the people who issue the deeds. They confirmed what I thought, either he has to sign them over to me, or if he won’t, them to give me permission to have my ashes interned there and a small stone erected. Either way, he has to sign one of two forms, which are in the post to me now. I haven’t spoken to my ex since I tracked him and my daughter, who he had taken without my permission to Auckland in New Zealand to live. Clearly, we aren’t on the best of terms. By chance, they are now both back here in the UK, through very different routes. Despite what he did to Teressa over the years, she chose a few years ago to rebuild their relationship. I have done the only thing I can, I have asked her to talk to her Dad and hopefully get the papers signed over to me. On one level, I can see no reason why he shouldn’t, but on an another, I fear he will simply demand that I send the deeds to him. He knows very well how to be mentally cruel and although Teressa seems positive about the outcome, I can’t be so sure.

It is amazing how one small action, so many years ago could have such an impact. The more I stopped and really thought about it, the more I realised that my Mother, although divorced herself, put his name on it, not out of any misplaced trust, more out of traditional values. One that said, he was my husband for life. When she did it, she couldn’t see what the truth of our relationship was, or how it would end. It just annoys me that once again, she is managing to tear away at my life. Since I married Adam, she more or less cut me out of her life. We had some contact by phone for a few years, then when I became ill, it slowly tailed off. When she became ill, my brother never even told me, it was after months of hearing nothing, that I eventually made contact with him, to hear she was in the hospital, about to moved to a care home. Despite promising to keep me in the loop, it took until this Christmas, 2 years on, for me to even find out where she is. Clearly, I am not wanted as part of anything now, any more than I have been for the bulk of my life. I am fed up of being seen as her “duty”, rather than her daughter.

So now my plans are in the hands of Teressa, it will be up to her skills of persuasion for me to be able to carry out what I always believed was a foregone conclusion. It just shows you how one tiny action, taken many years before, can screw up your future. Oddly, I remember when I left my first husband, my Mother actually asked me if I had the deeds in my possession. Surely, that would have been the perfect opportunity to tell me what she had done. Just having something in your possession, isn’t enough in the eyes of the law, it’s down to true ownership, not possession, despite the nine tenth theory.

I could really have done without all of this. I was feeling bad enough before I opened that damned envelope. It is yet more proof that stress isn’t something that does anyone any good. On the good side, I also opened another envelope yesterday, well rather Adam did. I now have in my possession, my DNR papers, and these papers, do have my name on then and are signed and ratified by my doctor. Just as the old one that I had, it has a time limit of five years. The only thing that the law change has brought about, as far as I can see, is a standardised form, and the fact that it doesn’t need an outside witness, and that the form stays with me. I don’t know if it is normal, but Adam has agreed with me that it might be an idea when I am next at the hospital for an appointment with one of my consultants, that we ask about it being added to my hospital records. I know it’s a belt and braces approach, but I really have no desire for anyone to be bouncing up and down on my chest, or having high voltage electricity coursing through me, I’d rather go peacefully.

I think I had been awake today for less than ten minutes when I was again aware of being exhausted. This morning was the first time ever, that I actually struggled to pull myself round enough, to be able to switch off the alarm clock. I have been struggling all day long. Today, the worst pain is in my lungs. I don’t know what is going on, or why they are so painful, but I am aware of every breath. To be fair, it’s more of a constant ache, rather than what most would call true pain. My diaphragm, though, well that’s another story. I am more than aware of what all my muscles can do, when under the control of my PRMS, they really don’t have to show off. I guess this afternoon will find me back in bed, not that it does much good, but somehow, it’s hard to fight the theory that going to bed, makes you feel better. Where did that stupid idea come from in the first place, probably something else I owe to my Mother. It’s amazing how what we are taught as kids, stays with us.

 

Please read my blog from 2 years ago today – 06/02/2014 – A girls best friend

This week is disappearing at a speed I haven’t felt for quite a while and totally without any reason that I can think of. I always thought that time flew when you were busier than usual, but I’m not, just ticking……

 

 

 

 

 

The talking has begun

Adam read my blog yesterday, “The first tiny steps“. I knew there would be a reaction, which I admit was part of my reason for writing it. Like a lot of people, he doesn’t like talking about death, especially, not mine. I hoped that by writing my thoughts, that he would then have something that was a defined plan, rather than just the general subject. It didn’t quite work out that way. It still took a huge amount of pushing and prodding to get him to say anything at all, and what he did, was, at first, running around the edges. I fully understand how he feels, it is hard, extremely hard to break ourselves away from the pain that death brings with it. I also understand that there is a huge difference between sitting calmly writing about something and talking about it. I had taken the easy option, as a way of broaching a difficult subject, which I had tried and tried in the past to do, I honestly couldn’t think of another way I could get him to talk. In the past when I have tried to talk to him, he has run away or, become so agitated by it, that I have backed off, as I can’t stand causing him pain.

When you yourself know you are dying, even if it is going to be several years away, you can’t ignore it, and this time, I wasn’t going to let him. I knew from the past, that he doesn’t like the idea of my ashes being so far away, if, they were all placed with Jeffery. I get that and I didn’t like it either, but I made a promise the day I buried him, that I would be with him one day. So I made the compromise, part with Jeffery and part close to Adam, to my surprise, he didn’t like the idea of me being split in different places either. We talked but, he couldn’t, or wouldn’t say what he wanted, all along when we came to a block, he said the same thing, “It’s not about what I want that matters, it’s about what you want.” I personally think that is wrong. We have done everything major in our life together through compromise and agreement, I don’t see why this should be anything different. What happens to my body once I am dead, is actually very much about what he is happy to live with too. Grieving has to have the right steps, it has to be worked through with an opportunity to say goodbye and to know where the person you love, is physically. Just as Jeffery was buried, because I couldn’t accept there would be nothing following a cremation, Adam has to be comfortable with what happens to me. I won’t be, the person who is grieving, he will.

At first, he wasn’t comfortable that I didn’t want, if, you like, the traditional funeral style goodbye. The removal of the ceremonial part isn’t as strange as he thinks. To me, the ceremonial part, is, when my ashes are scattered, as that is truly our final goodbye, not sitting staring a coffin through tears. When Jeffery was buried, we didn’t have a service in a church first, we all gathered at the cemetery around his grave and we held the service there. It was simple, and just as moving and supplied all the closure anyone could ask for. There was something about being outside, that felt right as well, as though there were no restrictions, no confinement to our feelings, they were as free as his soul was. I also think that the traditional cremation, being in two parts, separated by days, is cruel. I see the cremation act, as nothing more than a preparation step. It is far less arduous, to have just one gathering, one point when everyone can come together, to perform the final, single act to my life, or anyone’s life who is being cremated, the scattering of their ashes. He also tried to argue, that it was what people would expect and all those who know me could come to the crematorium. It’s an argument that doesn’t stand up, firstly all who know me or want to be there to support Adam can come to the ashes being spread, but not many will be there from my side anyway. He tried to say there would be, but as I said, who is there? Teressa and her husband John, my friend Jake and Adams family, that’s it. I have no friends left, they all vanished when I became ill, for some reason, that bothers him, more than it does me.

He didn’t like either that I intend to keep the whole thing as budget friendly as I can, he said it was something that I shouldn’t worry about, that it was up to him to find the money for the best send-off possible, I can’t agree. Funerals, can go into the thousands and for what? It doesn’t change the love that’s felt, and that, is, the only thing that’s truly needed. We only spoke for about twenty minutes, then he closed it down. I know that he is the sort of person, who has to think about things. Adam’s general reaction to things he doesn’t want to talk about were displayed perfectly yesterday. Throughout it, he was agitated and uncomfortable, he couldn’t stay in one spot and wondering around the room, getting closer and closer to the door all the time. Responses that I didn’t only expect, but had totally predicted in my mind before we even started. I could have written the perfect traditional process, right down to the overly pious minister, who had never met me, nor knew the first thing about me, spurting out the same service he repeats day after day, after day,  but he would have been just the same. It wasn’t my choices that upset him, just that we were talking about me dying. It shouldn’t be like this, we should all be able to have and adult conversation about death, even our own, without feeling that all of it is wrong. None of us what to die, but you and I could be gone tomorrow, and who knows what you want if it happened right now. There is so much choice out there, we don’t have to spend thousands on coffins, hearse and overgrown ostentatious displays of flowers. They don’t do anything. The closest friends, a single flower from each and few words that mean something, now that says something, that says, love.

I am not going to push it, not today anyway, but I told him that this week I am going to email a few places, to find out about costs and so on. Unfortunately, I can think of no one else, other than a funeral director who can help me in my quest. My one experience with them has left me feeling just that tiny bit hostile towards them, which I am sure I will get over once the process has begun. I want to know and I need to start sorting all this out, as I am sure, that I will find a new peace, in knowing it is at least sorted. Eventually, I want to put together a document, that lays it all out, step by step what Adam has to do and how to go about it when I’m not here to help him. I want him to feel that I am holding his hand throughout it, guiding and comforting as he works his way through the phone calls that have to be made, the emails to be sent and so on. Once I have this stage sorted, then, I can start looking into all that proceeds it. I know that some might think that I am dashing off to find out about what might be years away, but it might not. My PRMS is a progressive condition, there is no knowing when I might have another flare or what damage it might do. I need to do what I can, while I still can, not leave it as a gaping painful unknown.

 

Please read my blog from 2 years ago today – 18/01/2014 – Compensating is now failing

Once again I woke this morning not sure how to twist for the alarm clock or how, not for the first time, to find the strength to hold down the elevator button due to it’s strange position, but it is the only…….

 

 

 

The first tiny steps

Adam told me the other evening, as he held onto me while we were having a hug before I went to bed, that he could both see and feel the change in me. He said that I was once again standing, rather than slumping into him with my leg muscles shaking. I don’t know why, but having someone outside your own body, confirming just how you feel, really matters. I already felt so much better, and he was right about that, but just his words, gave me, that little extra boost. It isn’t just getting rid of the dreaded drug, Duloxetine, I honestly feel so different since I stepped up my Gabapentin as well. I didn’t want to vocalise the change too soon, I wanted to be sure, to know that what I was saying here, was spot on, and not just a wishful dream. Well, I can declare, without a doubt, that my PRMS pain is lowered, not to the level of six months ago, but it is definitely lower. Plus, I am not sitting here feeling the muscles throughout my legs going into spasm every couple of minutes, those constant painless contraction, hold and releases, are now just minor events, rather than a staggeringly annoying issues. Even some of the sensations that have been driving me up the wall have also lessened. I can actually feel my body, not just a mass of numbness, pins and needles, shooting pains and anything else my nerves could create. Several minutes, even up to 15 or 20 are now commonplace, when I am me, not wondering yet again, if, I will find my left foot anytime soon. Just having those gaps of normality, feels great.

The calmness I found the other day, seems to have stayed with me. It is hard to feel anything other than stressed when you aren’t yourself. You can relax, lie down or sit quietly as much as you want, but, there is always, this core of stress that eats away at you, feeding the circle of events that fills and takes over your life. I know that there will always be an element of stress, as when you live in a body, that takes pure joy, in frustrating you, again and again, you can’t escape it. But for the last few days, over all of it, there has been this wonderful calmness. As with so many things, I can find several reasons for it, so pinpointing the one, isn’t possible. To be honest, I don’t even want to analyse it too closely, as somethings, should just be enjoyed. One thing, I do know, is that the Gabapentin has made me more sleepy, but in a good way, not the clawing fatigue that I so often feel. I am more than content to lie down during the day if I need to, and I am happy enough to go with that, if, that’s what my body wants. I know, that it goes against my plan for this year, but I can put up with the demands to sleep, as long as everything else feels better, which it does.

It is just another of the things you have to get used to with chronic illness, almost everything is a compromise and has to be part of your life balance. So if the price I have to pay, for less pain and not spending every minute locked in a battle with my body, I can live with it. The only thing I am finding a little difficult is, it’s playing with my concentration. I am finding myself just stopping and drifting off into thoughts that are miles away from what I am doing. One of the array of subjects I have been musing on has been put there by a subject that appeared thanks to one of my recent posts, the whole palliative care issue. I haven’t been able to stop thinking about finding out about and sorting through what will happen in my final weeks and after I am gone. My mind for some reason has decided that it wants to start at the end and then work backwards to where I am now. I guess that’s because, I actually know what I want, well part of it anyway.

When my son Jeffery died, because my ex-husband was in the Navy and we were constantly moving around, we decided, thanks to what I now know was misinformation, to bury him in my hometown. What we had wanted, was for him to be cremated, then his ashes interred in my family plot. As it was just the ashes of a baby, the costs would be low, and unlike a body, we would have been given permission to do so. Jeffery died in Edinburgh and we were told by the Funeral Directors that this wasn’t possible. Because he was a baby, there wouldn’t be any ashes left, he would simply disappear. I couldn’t take that, the idea that there would be nothing, well it didn’t sit right with me. I even begged them, that if it were just one tiny speck, I wanted it, but they insisted there was nothing. We took the step of buying a cemetery plot, which was expensive, and left us in debt, but my baby wasn’t going to vanish. Last year, it came to light that there are of course ashes from a baby, there had been a collaboration between the crematoria and Funeral Directors, which meant that infants were cremated with adults, to save cost. Millions of parents had been stripped of their children, by people wanting to make money, and millions of their ashes, are now mixed in with total strangers. For me, I know own a plot, and I promised my son, that one day, I would be with him. I know it was a promise made in another life, but it’s a promise I don’t want to break, but it would mean I would be hundreds of miles from Adam.

I have only been to a crematorium once, and I hated everything about it. Personally, I never want to go through that again, dead or alive. So, I have a plan now of what I want. I don’t want a funeral, no one sitting in a crematorium, listening to music they don’t like. No one watching a coffin vanishing to tears, no people standing around in the cold, not knowing what to say, or even think. The cremation part can be done without a coffin, just a shroud, as there will be no one to see it. Once Adam has my ashes, I want them split, so that I can keep my promise, there is no need of ceremony at that point either. Half of them are to be placed with Jeffery and my name added to his stone, all of which, can be carried out, without anyone having to travel. With the rest, well this is when those who want to, can gather as saying goodbye, I know that it is all part of the grieving process and important to those still alive, so I wouldn’t remove it totally, just change the location and time. I will leave it in Adams’ hands, as to where they go, as I trust him and I hope that one day, he will join me. Where ever it is, those who choose to say goodbye can do so then. Each if they want, can scatter some of my ashes and say what they want, or just stand silent and say a simple goodbye. So that bit is sorted in my mind, I just need to start emailing those who know, and can tell me the logistics, and cost, of carrying it all out. I am not a traditional person, so I don’t want a traditional end.

Understandably, I don’t want a funeral director running things and grabbing money at every turn. I’ve lived through that once, I don’t want anyone else to. I have also made my mind up about something else, I don’t want Adam to tell my birth family until it is all over. I will write two letters, only to be posted once it is all done. One for my youngest brother, the only one to have spoken to me in the last 5 years, it was also the first time for an even longer period. He called to tell me my father was dead, and to get me on his side, should there be a legal battle later, which there wasn’t. I’ve not heard from him since.  The second is for my mother if she’s still alive. They turned their backs on me years ago and I feel I own them nothing more than this, and as neither came to our wedding, I don’t see why I should even ask them to this. Those who care about me, and I care about, are the only ones who matter. I will also, have to sort out my will, the details of which, I wrote about a couple of years ago. This may not be much, but it is a start and we all have to start somewhere.

 

Please read my blog from 2 years ago today – 16/01/2014 – What day? Are you sure?

Today I would like two new legs and a new pelvic please! My request for new parts to my body or even an entire new one has remained unfulfilled now for many, many years, but I really would like today’s one…..

 

 

 

 

 

 

 

An important question

Another day, without another dollar. Not even the sayings I heard bandied about when I was a child fit my life any longer. I’m not complaining, some of them were rather stupid in my opinion. For a start, I live in Scotland, what good is a single dollar to me? So OK, I’m being facetious but “I’m allowed to be, I’m dying”. I always wanted to be able to use that one, but now it’s true, well it doesn’t have the fun it once held when my Gran got away with everything, by saying it. I can still remember her sitting there spoiling me rotten by stuffing sweets in my mouth, as my Mother scolding said “Mum, stop it, I’ve told you before, she doesn’t need sweets”, and Gran would wink and hand me another one, while saying, “I’m allowed to spoil her, I’m dying.” It wasn’t just said when it came to sweeties, it was her answer to anything anyone told her off for, and it seemed to me, they told her off a lot, even more than they did me, which looking back, would have been hard. Gran’s slow demise and it was slow, about 12 years if I remember correctly, is the only model I have for how you do this gracefully, with a touch of disgracefulness on the side. As it turned out, I wasn’t there at the end. When my parent divorced, we lost contact, and by the time I could even bare to talk to my Mother, well my need and trust for my family were gone. Hurt is a very deeply plunged sword when you’re abandoned to the clutches of a monster, by the person who should have protected you. Even now, my relationship with my Mother, is in ribbons, too much has happened, too many years have passed, for it ever to be healed. I can, though, look back now and see my Gran was a renewed innocence, but then, I just saw more swords. When the day eventually came, I was at the other end of the country, having managed successfully to evacuate myself from the war ground. My first marriage took me nearly 600 miles away by train, as far as I could get, and that was the cherry on top of the whole thing. As luck would have it, within a month of my escape, she took to her bed. Two weeks later, she simply went to sleep and never woke again, the perfect way, if there is one, for a life to end. I didn’t actually find out for over a week, by which time, she was long buried. Not having a phone, meant I wasn’t told until I did my monthly check in with home. I never understood why I kept doing so, somehow those rules of “honour thy Mother and Father” never truly breaks, regardless of what they do to you.

No one tells us, or teaches us, just how to head into what is one of our most important journey in our life, how to die. It is our ultimate action in life and so important, as it is truly the only thing you ever get only one shot at, no rehearsal, no practise run, it’s a one off and if your not happy with it, well tough luck. It’s coming up now for 3 years since my consultant set my personal countdown ticking, and it’s a sound that no matter how hard you try, you can always hear, it’s there in the background of everything. I’m not meaning to imply that you don’t forget, or that it’s an oppressive element in every day, of course, you forget at times, but it always finds a way to enter into your head again, it’s never totally gone. Just like my Gran, I am in the midst of a long slow demise, but unlike her, I don’t talk about it almost every day. Maybe I should, maybe she had the right approach, to turn it into a joke, but somehow, I find it easier not to. Not for my sake, but for Adams, I don’t think I could ever find the right words, that would make him ever smile at that subject, ever. In a way, though, I do think she had the right approach, if maybe a little too frequently. Talking about death freely, I believe would make it easier for those of us facing it. There is nothing more foreboding, than something that is a taboo subject.

When I was diagnosed with PRMS, I like anyone who is diagnosed with a progressive condition, I asked how long I had to live. Whatever variant of autoimmune condition you have, the answer always seems to be the same, they don’t know. To this day, I still don’t believe that, I am sure, that they could give a good guesstimate, an average if you like. It was very different with my COPD, that is where my clock comes from, 10 years. Even with the unknown factor, of my PRMS, which is slowly closing down my lungs, they were happy to give me that guesstimate. So, OK, it’s not accurate, but, there is an odd comfort in at least having a goal, one that lets you sort out your thoughts, not to mention, all the legal bits that are needed these days, and of course, that funeral. I still have 7 to go, but it’s the first of those three, that I am still toying with, it’s still my thoughts, that are my biggest issue. I thought the hardest thing would be just accepting the fact that I was going to die before, what is commonly called “my time”, but what is “my time”, because when you think about it, we really don’t know. It’s not as though we are born with an expiry date and our health has changed all that. “Our time” is quite simply when it happens, there is no magic date or true expectancy.

Knowing I’m three years into my ten-year clock, ticking its way down continually, doesn’t bother me at all. It’s the actual act, those last hours or minutes, that I can’t get my head around at all. In fact, I would extend it a little further, let’s say that last weeks. I could write you a list that would just grow and grow as I went, from the obvious to the personal, my questions just keep coming, as I don’t have that training, the knowledge or experience to know where to start. Worse than the fact I have so many questions, I don’t know who to speak to, to find the answers I so desperately need. Something inside me says that this isn’t something to read about, it’s something that needs to be discussed. Right now, all this is in the front of my mind, thanks to those damned drugs. No, I didn’t think I was dying, but I had a feeling that what was happening to me, wasn’t that far from the truth. As I’ve said before, I don’t have a fear of dying, if death took me that way, suddenly, well that would be fine, but the truth is, it probably won’t be that way at all. How is it, in this enlightened age about everything, something we have been doing since the first human appeared, that we can have no idea, how to be sure, it’s the way we want? How do you have a good death, not just for you, but for those who love you? How come, no one teaches us this stuff, as I don’t know where to start or where to turn. For the first time in my life, I am at a total lose and I feel like I have missed something along the way, that important lecture, that tells us how  to do this just right.

I’ve never seen someone die, nor even a dead body. I have only been to three funerals in my entire life, the first, my own sons. Death has been so skillfully kept away from me, that I now feel as though I know nothing about it at all. If I were mobile, well, I think, I know the people I would go and talk to. I believe, that I know those who could put my mind at rests, but I can’t get to them, and to get them here, seems wrong when I still have years, not just months. Once you are housebound, it’s not just living that becomes more difficult, it appears death does too. I feel like an innocent, facing what appears to be a devil, but one I know can be tamed, if, I just had the right tools, tools that like so much else, are just not available to me. I also know that in the next couple of days, I will pack this all away, put it back in the box it escaped from last night, but I also know, it won’t stay there. This is something that haunts me.

 

Please read my blog from 2 years ago today – 11/01/2014 – Control of me?

I had a subject that I wanted to write about this morning but something made me do a quick search on my blog to see if there was anything that was close to today’s post and there was, not only close……