Wanting to die was NOT an easy option
but it did feel like my ONLY option
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| Me in happier, healthier times |
I am going to try and explain what it took for me to come to the decision that the only way forward, or rather my only escape, was to go to Dignitas in Switzerland and commit legal assisted suicide.
I had been agonizing over the question of whether I could carry on the way I was for some time, and in order for you to understand why that was such a huge ask you have to know that life was not life anymore; it was me laying in bed day in, day out, in absolute agony, barely seeing the light of day, not really spending any time with Amy let alone anyone else, it was taking so many medications I had to rely on Amy to administer them because I couldn't keep track. It was being on so much pain medication that half the time I couldn't see straight because of it but knowing that if I was to miss one dose, one single, lousy, dose I would be in the amount of pain that would lead us to the hospital and yet another stay in the place that had long since become my second home.
I was lost, I was sad, I was in pain; both emotionally and physically but all of that was I, all of it was about me, the reason I held on for so long before being brave enough to say I just couldn't do it anymore was because to me what it did to everyone else was more important. I desperately didn't want to hurt the people I love, I wanted to keep them safe; in a bubble, in suspended animation almost. A safe place where they did not know that I was coming to the end of the line; that I was about to drop a huge bombshell that would shake the foundations of our family structure; I wanted to die.
Actually that's not true, I didn't want to die, I wanted to live; more than anything in the world I just wanted to live like everyone else. No one in all honesty could refer to what I was doing as living, at best it could be classed as an existence but it wasn't living, not really. I had long since given up my dream of having a career, gone were the days of thinking that my degree would one day pay off and I would be able to return to work, I knew I would never get to go to town and dance like an idiot in the pubs and clubs anymore heck most of the time I wasn't even well enough to go out for a family meal.
The worst things; I couldn't write, I had neither the energy nor the wherewithal to sit at a computer and write anything that would make even the modicum of sense, that might mean very little to some people but for me writing is in my blood, it's the air I breathe and without it I feel lost. I accepted that I wouldn't be well enough to edit the crime fiction novel I wrote before my illness really took over so I knew that I would never get to send it off much less have the chance of getting it one day published; another dream crushed.
Bigger and worse still; I would not get to fulfill the one dream that meant more to me than any other - I couldn't carry a baby, I couldn't be a mummy. I had always dreamed of being a mum, of feeling my baby kicking inside me, of Amy's hand on my stomach feeling them moving around getting comfortable, of talking to my bump, reading it stories, anticipating the birth with a healthy mixture of excitement and shear terror! Then having my family come to the hospital and see us holding our baby, of looking into his/her eyes and seeing a bit of me reflected back. I would never have that either; MRS had stolen my only chance.
I knew that if Amy was to have a baby that would be my child too; I would adore them, worship the ground they toddled on but I also knew that even if Amy was to give birth that I could never be a proper mum, that I would only hold Amy and our children back and I also knew that that was exactly what I was doing every day that I was with Amy, I was holding her back from her dreams and from the future that she could and should have.
I hardly ever got to see my family, much less my friends, I was just too poorly, constantly cancelling arrangements until they simply didn't get made anymore. My poor nephews became lost from me in the process of my downfall by MRS because how can I spend time with them when I can't even get out of bed? How can I be there cheering Bradley on at sports day, watching his school productions, playing with him in the park? None of it happened anymore... It was all just lost...
I was breaking my family's and Amy's hearts every single day that they were watching me suffer and I could do absolutely nothing to stop it happening. I tried so hard to fake it, to fake being okay with what my life had become. I cared about hurting them more than I cared about hurting myself.
If I could have taken myself out of the equation entirely, made it so I had never been born, if only I had to suffer the pain of losing them, then I would have done it in a heartbeat in order to spare them. If I could have emigrated and let them believe I was happy somewhere else, oh the things I thought about; the ways I could exit their lives and leave as little pain behind as possible.
But none of it was realistic, it was all just wishful thinking, if you could call it that. I would think about dying as a relief from the physical pain I was having to endure every single moment of every single day without a break but at the same time the idea of not seeing my nephews grow up would leave me in tears of grief just at the mere thought.
I'd consider what it might do to my parents, that they may not cope, I remember how my mum suffered when she lost my Nan when I was 9-years-old; would that happen again because of me? As much as I didn't want to believe I wouldn't be missed, wouldn't leave a Christie shaped hole in their lives; I would rather they felt no pain, that it would have been as much a relief to them as it would to me but no matter how hard I tried to convince myself I knew that wasn't true.
I also knew that when Amy said she would kill herself if I ever died, that as horrible as that was for her to say, and I still think it was, she meant it and that was an enormous amount of pressure to rest on my shoulders. Part of me was pushing forwards, carrying on, just because I was so afraid of what she would do to herself and deep down I think she knew that to some extent, I think maybe that's partly why she said it in the first place; to force me to stay.
When people have cancer, it's a dreadful, evil, painful illness and I feel for every person that has to go through it and every loved one that loses someone because of it but they have understanding, it is something that others have heard of and they know instinctively that it is excruciatingly painful and it carries with it a massive emotional burden.
For me that understanding was not always there, most of the time people did try to grasp it but five minutes after you have left the room, the phone, the chat-room on the Internet; they are no longer thinking of you and your struggle, because they get to live and why shouldn't they? The problem is, I didn't.
The other thing about illnesses like cancer is that when it is bad, when it is so so bad that the poor sufferer is in daily pain then there is usually an end-date in sight, I know that sounds awful, crass even but I promise it is not intended that way. It's just that they have the relief of knowing that their suffering will not be forever, that one day it will be over and that their loved ones will not blame them for that and in that way they will be free to move on.
If you suffer pain for long enough, if you have everything meaningful lost from your life and if you believe that you are a noose around your loved one's neck's then eventually you will find it too hard to carry on like that; well I know I did.
I would lie awake at night watching Amy sleeping, thinking about how I could do it but cause the littlest amount of pain possible, for a long time I had been nurturing her relationship with my family to make sure she had people, had a reason to stay. I made sure she spent as much quality time as possible with our nephews, bonding, building strong connections that would keep her bound to a life here on Earth and would give her happiness then and in the future.
As much as I wanted her to have those connections with our nephews so badly, to watch her with them doing the things that I used to hurt me like crazy. I felt redundant; like the boring add-on auntie who turns up to occasions and if anything sucks the fun right out of them by being so poorly and a distraction from the good times.
I would watch her and know that she would one day know a life without me and that it would inevitably be a better life that would give her far more happiness than I could; as much as that was a good thing, as much as I desperately wanted that for her, it cut like a knife right through my heart and I can't deny that, I would be doing her a disservice if I even tried to.
My sister and I are the only children of my parents, I know that if anything was to happen to her I would suddenly feel very alone in the world, that half of me would be missing and I wondered whether Kerry would feel the same, whether she would worry about when she gets older and there would have been her and me pushing our shopping trolleys through town - that instead it would be her alone.
I thought of the friends that I had let go over the years because I never thought I was good enough for them, because I thought that my life was already a mess, that I wasn't successful enough, 'sorted enough' to be their friend. I considered the fact that they would never know what they had meant to me; that they were the family I chose at a time when I needed them most. That in the years since I had walked away from our friendships I had missed them dearly and always regretted it.
I spent days, weeks, months crying whenever I was alone because I couldn't contain the hurt, I couldn't cope anymore, it was all too much. I didn't want to just take a bottle of pills, tie a rope around my neck and hang myself from a public tree somewhere obscure where no one I knew would find me, I didn't want to do anything underhand; I wanted them to understand that they had to let me go and to be there with me to hold my hand; so that we could say our goodbyes.
I knew that in some countries there was such a thing as legal assisted suicide, I had read about it a long time ago, had covered the issue in Religious Studies in high school and found the subject fascinating at the time; even then, at that age, I found myself agreeing with it in certain circumstances, so I know I have not become a hypocrite at least.
So I started looking into it and I soon came across video diaries and web pages made by people who had made the choice to go to a place called Dignitas in Switzerland; it was heartbreaking to read what they had written, even worse to watch the videos they had made, when they had looked so alive yet so broken at the same time.
I watched them and I cried for them, I did a lot of crying at that time in my life - not like me at all. They all had their own very valid reasons, some were terminally ill, some had very debilitating illnesses like me. For reasons of their own they had decided that they wanted to take control, take charge of their destiny. They couldn't choose not to be poorly, they couldn't stop the course of their illnesses but what they could do was decide when to leave and how.
When I looked at Dignitas itself and read their criteria, something struck me, hard, right between the eyes; I did meet their criteria, I was a candidate for assisted suicide. To me that validated my choice to die and was another driving force behind my final decision - I really was that sick. I wasn't exaggerating or imagining that it was worse than it was; this had really, honestly become my life.
When you are healthy, or even relatively healthy, you read sad stories in magazines, see them on the news, watch documentaries. You hear of so and so's mum or auntie or brother etc that has fallen ill and is dying. You are told about someone who has this God-awful illness that has left them a shadow of their former selves. You think how awful it is and how sorry you feel for them and then like everyone else that isn't directly involved in their sad story you get on with your life.
What you never, ever imagine is that one day that person at the center of this hugely sad and traumatic tale will be you.
I spent time asking myself the big questions; is there a Heaven, will I go there if there is? Will I be re-incarnated? Will I get to watch my family and Amy from afar? I tried to buy into all of that for my own sake because it was ripping my heart out thinking I would never see them again. I couldn't believe in a higher power no matter how hard I tried to make myself.
What I started to see it as was a big, long, rest, of knowing no different and apart from the grief of not seeing my loved ones again, funnily enough the idea of said rest did not fill me with dread either... It actually made me feel like I would finally be at peace.
When I finally told Amy about my choice I was frightened about her reaction, I knew it wasn't going to go down well, of course I did, but when you feel that low, when you are that desperate you rationalize. You believe wholeheartedly that they will be better off without you and that if they loved you enough they would let you go because it is too painful for you to stay.
That is why I don't judge other people who come to the decision I did, whatever their reasons. I think it is very unnecessary in many cases as things can no doubt improve; if it is emotional distress that has led them there for example. All the same, at that moment in time, their minds are telling them that this is the right thing to do, the only thing to do.
I saw it as being finally set free, released from my pain and my obligation to live in order to keep other people happy; in fact that was one of my arguments with Amy - that it wasn't fair for me to suffer to keep everyone else happy when it was me alone that had to go through all the physical pain etc and not them.
I stand by that to some extent, I know that at that time I really, genuinely was in too much pain to live with it like that forever. There was no known cure, there still isn't, but there was also no effective treatment, nothing was ever likely to get any better and I couldn't live with that.
I also didn't want to waste more years of Amy's life, I had tried pushing her away many times, it clearly never worked lol, we have had some huge arguments over the years. We have, at times, walked a rather rocky path in our relationship but when I got really sick, when a lot of people would have run away, she stepped up completely and she didn't leave my side even when I begged her to.
We have our moments, we aren't the 'perfect' couple, I don't think anyone is, but we are perfect for each other. We are the perfect partnership; some might wonder how being the perfect couple and the perfect partnership are different but I believe that they are.
I think that you have to be a partnership to work well as a couple but that you can be in a couple and not be in a partnership that you can just be 'out for yourselves', I just think it works much better if you have both, I believe it makes you stronger.
When I told Amy and watched her break in front of my eyes, when I saw the damage I had already done; I wanted to take it all back. I wanted to tell her to forget I had said anything, that it was just a sick joke, a moment of madness, that I honestly didn't feel that way at all. Except I did feel that way and I meant every word and she knew it as well as I did; there was no taking it back, there was no way I could.
I tried to make her understand, I tried to show her that it wasn't that I didn't love her enough to stay but that I loved her too much to do it to her; that I couldn't be the anchor pulling her down because no matter how many times she said I wasn't, I knew that I was and I couldn't do it any longer.
I knew that she saw the pain I was in, she lived with me, she knew me better than anyone, she saw me suffering on a daily basis. She was there with me every day I spent in the hospital, was aware of what I endured; because she endured it alongside me.
I don't think before that point that she had allowed herself to believe there would ever come a point when I would say enough was enough. I don't believe she had ever considered it. She called me selfish, she said the whole idea was selfish and that anyone who did it was cruel and thoughtless.
She told me she would never support me in my decision, that she wouldn't be there with me, that she would stop me from doing it, that she hated me for hurting her like that, she cried and cried and threw every ounce of hurt back at me that she could and I took it all because I knew it was only the same hurt I had just given her.
She asked me how I could even think about leaving my nephews, she told me I would break all their hearts, that I just couldn't do it, that it was evil, I was evil. She didn't want to be around me, she wanted to be away from me but kept coming back (as is Amy's way during arguments lol.) I think at that moment I pretty much hated myself too.
I can't remember what happened after that if I'm honest; those days are a blur of tears and raw emotional outbursts from both of us, launched at each other like weapons.
However Amy had realized how serious it all was, how serious I was about it and that she had to act now if she was to keep me with her, if she was to help.
She found a support group of other Melkersson Rossenthal Syndrome sufferers on Facebook, the last place I would have ever thought to look! She signed me up; I got talking to people who understood what I was going through for the first time in my life and that was an amazing thing and still is. That group is a gift to everyone with MRS who finds it and Amy found it for me when I needed it more than ever before.
Next we came across the Stem Cell Replacement Therapy as a possible treatment (not a cure) we researched it and the more we found out the more positive and hopeful it all sounded. My last post kind of takes it from there with regards to that and I will explain what happened when I went for the treatment in a future post...
However I would just like to say that had things not improved I honestly do not know what I would have done, whether I would have gone through with my decision to go to Dignitas but that I meant it at the time and I had researched the place, people who had made the same choice and I knew exactly what I was thinking.
My doctor has said himself in that past that what I had was 'no life' and he was right, things are slowly improving with the SCT, however my life is extremely far from ideal. But that's the thing; I just called what I have a life and I meant that too!
End Note
I have been informed by a very lovely lady that my above post triggered her to write a post of her own, on her blog, re the same issue. If you would like to read her story: Here it is. I am honoured that she described my post as being "bold as hell & refreshingly honest."
I was lost, I was sad, I was in pain; both emotionally and physically but all of that was I, all of it was about me, the reason I held on for so long before being brave enough to say I just couldn't do it anymore was because to me what it did to everyone else was more important. I desperately didn't want to hurt the people I love, I wanted to keep them safe; in a bubble, in suspended animation almost. A safe place where they did not know that I was coming to the end of the line; that I was about to drop a huge bombshell that would shake the foundations of our family structure; I wanted to die.
Actually that's not true, I didn't want to die, I wanted to live; more than anything in the world I just wanted to live like everyone else. No one in all honesty could refer to what I was doing as living, at best it could be classed as an existence but it wasn't living, not really. I had long since given up my dream of having a career, gone were the days of thinking that my degree would one day pay off and I would be able to return to work, I knew I would never get to go to town and dance like an idiot in the pubs and clubs anymore heck most of the time I wasn't even well enough to go out for a family meal.
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| My graduation; was it all for nothing? (From left; Mum, Brandon, me, Dad) |
The worst things; I couldn't write, I had neither the energy nor the wherewithal to sit at a computer and write anything that would make even the modicum of sense, that might mean very little to some people but for me writing is in my blood, it's the air I breathe and without it I feel lost. I accepted that I wouldn't be well enough to edit the crime fiction novel I wrote before my illness really took over so I knew that I would never get to send it off much less have the chance of getting it one day published; another dream crushed.
Bigger and worse still; I would not get to fulfill the one dream that meant more to me than any other - I couldn't carry a baby, I couldn't be a mummy. I had always dreamed of being a mum, of feeling my baby kicking inside me, of Amy's hand on my stomach feeling them moving around getting comfortable, of talking to my bump, reading it stories, anticipating the birth with a healthy mixture of excitement and shear terror! Then having my family come to the hospital and see us holding our baby, of looking into his/her eyes and seeing a bit of me reflected back. I would never have that either; MRS had stolen my only chance.
I knew that if Amy was to have a baby that would be my child too; I would adore them, worship the ground they toddled on but I also knew that even if Amy was to give birth that I could never be a proper mum, that I would only hold Amy and our children back and I also knew that that was exactly what I was doing every day that I was with Amy, I was holding her back from her dreams and from the future that she could and should have.
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| I wanted to set her free, not be what was holding her back... |
I hardly ever got to see my family, much less my friends, I was just too poorly, constantly cancelling arrangements until they simply didn't get made anymore. My poor nephews became lost from me in the process of my downfall by MRS because how can I spend time with them when I can't even get out of bed? How can I be there cheering Bradley on at sports day, watching his school productions, playing with him in the park? None of it happened anymore... It was all just lost...
I was breaking my family's and Amy's hearts every single day that they were watching me suffer and I could do absolutely nothing to stop it happening. I tried so hard to fake it, to fake being okay with what my life had become. I cared about hurting them more than I cared about hurting myself.
If I could have taken myself out of the equation entirely, made it so I had never been born, if only I had to suffer the pain of losing them, then I would have done it in a heartbeat in order to spare them. If I could have emigrated and let them believe I was happy somewhere else, oh the things I thought about; the ways I could exit their lives and leave as little pain behind as possible.
But none of it was realistic, it was all just wishful thinking, if you could call it that. I would think about dying as a relief from the physical pain I was having to endure every single moment of every single day without a break but at the same time the idea of not seeing my nephews grow up would leave me in tears of grief just at the mere thought.
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| The idea of not seeing my nephews grow up left me in tears |
I'd consider what it might do to my parents, that they may not cope, I remember how my mum suffered when she lost my Nan when I was 9-years-old; would that happen again because of me? As much as I didn't want to believe I wouldn't be missed, wouldn't leave a Christie shaped hole in their lives; I would rather they felt no pain, that it would have been as much a relief to them as it would to me but no matter how hard I tried to convince myself I knew that wasn't true.
I also knew that when Amy said she would kill herself if I ever died, that as horrible as that was for her to say, and I still think it was, she meant it and that was an enormous amount of pressure to rest on my shoulders. Part of me was pushing forwards, carrying on, just because I was so afraid of what she would do to herself and deep down I think she knew that to some extent, I think maybe that's partly why she said it in the first place; to force me to stay.
When people have cancer, it's a dreadful, evil, painful illness and I feel for every person that has to go through it and every loved one that loses someone because of it but they have understanding, it is something that others have heard of and they know instinctively that it is excruciatingly painful and it carries with it a massive emotional burden.
For me that understanding was not always there, most of the time people did try to grasp it but five minutes after you have left the room, the phone, the chat-room on the Internet; they are no longer thinking of you and your struggle, because they get to live and why shouldn't they? The problem is, I didn't.
The other thing about illnesses like cancer is that when it is bad, when it is so so bad that the poor sufferer is in daily pain then there is usually an end-date in sight, I know that sounds awful, crass even but I promise it is not intended that way. It's just that they have the relief of knowing that their suffering will not be forever, that one day it will be over and that their loved ones will not blame them for that and in that way they will be free to move on.
If you suffer pain for long enough, if you have everything meaningful lost from your life and if you believe that you are a noose around your loved one's neck's then eventually you will find it too hard to carry on like that; well I know I did.
I would lie awake at night watching Amy sleeping, thinking about how I could do it but cause the littlest amount of pain possible, for a long time I had been nurturing her relationship with my family to make sure she had people, had a reason to stay. I made sure she spent as much quality time as possible with our nephews, bonding, building strong connections that would keep her bound to a life here on Earth and would give her happiness then and in the future.
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| I encouraged Amy to build strong connections with our nephews |
As much as I wanted her to have those connections with our nephews so badly, to watch her with them doing the things that I used to hurt me like crazy. I felt redundant; like the boring add-on auntie who turns up to occasions and if anything sucks the fun right out of them by being so poorly and a distraction from the good times.
I would watch her and know that she would one day know a life without me and that it would inevitably be a better life that would give her far more happiness than I could; as much as that was a good thing, as much as I desperately wanted that for her, it cut like a knife right through my heart and I can't deny that, I would be doing her a disservice if I even tried to.
My sister and I are the only children of my parents, I know that if anything was to happen to her I would suddenly feel very alone in the world, that half of me would be missing and I wondered whether Kerry would feel the same, whether she would worry about when she gets older and there would have been her and me pushing our shopping trolleys through town - that instead it would be her alone.
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| Me (on the left) and my sister; we thought we would always have each other |
I thought of the friends that I had let go over the years because I never thought I was good enough for them, because I thought that my life was already a mess, that I wasn't successful enough, 'sorted enough' to be their friend. I considered the fact that they would never know what they had meant to me; that they were the family I chose at a time when I needed them most. That in the years since I had walked away from our friendships I had missed them dearly and always regretted it.
I spent days, weeks, months crying whenever I was alone because I couldn't contain the hurt, I couldn't cope anymore, it was all too much. I didn't want to just take a bottle of pills, tie a rope around my neck and hang myself from a public tree somewhere obscure where no one I knew would find me, I didn't want to do anything underhand; I wanted them to understand that they had to let me go and to be there with me to hold my hand; so that we could say our goodbyes.
Looking for my way out
I knew that in some countries there was such a thing as legal assisted suicide, I had read about it a long time ago, had covered the issue in Religious Studies in high school and found the subject fascinating at the time; even then, at that age, I found myself agreeing with it in certain circumstances, so I know I have not become a hypocrite at least.
So I started looking into it and I soon came across video diaries and web pages made by people who had made the choice to go to a place called Dignitas in Switzerland; it was heartbreaking to read what they had written, even worse to watch the videos they had made, when they had looked so alive yet so broken at the same time.
I watched them and I cried for them, I did a lot of crying at that time in my life - not like me at all. They all had their own very valid reasons, some were terminally ill, some had very debilitating illnesses like me. For reasons of their own they had decided that they wanted to take control, take charge of their destiny. They couldn't choose not to be poorly, they couldn't stop the course of their illnesses but what they could do was decide when to leave and how.
When I looked at Dignitas itself and read their criteria, something struck me, hard, right between the eyes; I did meet their criteria, I was a candidate for assisted suicide. To me that validated my choice to die and was another driving force behind my final decision - I really was that sick. I wasn't exaggerating or imagining that it was worse than it was; this had really, honestly become my life.
You never imagine one day you will be so poorly you would rather not live
When you are healthy, or even relatively healthy, you read sad stories in magazines, see them on the news, watch documentaries. You hear of so and so's mum or auntie or brother etc that has fallen ill and is dying. You are told about someone who has this God-awful illness that has left them a shadow of their former selves. You think how awful it is and how sorry you feel for them and then like everyone else that isn't directly involved in their sad story you get on with your life.
What you never, ever imagine is that one day that person at the center of this hugely sad and traumatic tale will be you.
The big questions
I spent time asking myself the big questions; is there a Heaven, will I go there if there is? Will I be re-incarnated? Will I get to watch my family and Amy from afar? I tried to buy into all of that for my own sake because it was ripping my heart out thinking I would never see them again. I couldn't believe in a higher power no matter how hard I tried to make myself.
What I started to see it as was a big, long, rest, of knowing no different and apart from the grief of not seeing my loved ones again, funnily enough the idea of said rest did not fill me with dread either... It actually made me feel like I would finally be at peace.
Telling Amy
When I finally told Amy about my choice I was frightened about her reaction, I knew it wasn't going to go down well, of course I did, but when you feel that low, when you are that desperate you rationalize. You believe wholeheartedly that they will be better off without you and that if they loved you enough they would let you go because it is too painful for you to stay.
That is why I don't judge other people who come to the decision I did, whatever their reasons. I think it is very unnecessary in many cases as things can no doubt improve; if it is emotional distress that has led them there for example. All the same, at that moment in time, their minds are telling them that this is the right thing to do, the only thing to do.
I saw it as being finally set free, released from my pain and my obligation to live in order to keep other people happy; in fact that was one of my arguments with Amy - that it wasn't fair for me to suffer to keep everyone else happy when it was me alone that had to go through all the physical pain etc and not them.
I stand by that to some extent, I know that at that time I really, genuinely was in too much pain to live with it like that forever. There was no known cure, there still isn't, but there was also no effective treatment, nothing was ever likely to get any better and I couldn't live with that.
I also didn't want to waste more years of Amy's life, I had tried pushing her away many times, it clearly never worked lol, we have had some huge arguments over the years. We have, at times, walked a rather rocky path in our relationship but when I got really sick, when a lot of people would have run away, she stepped up completely and she didn't leave my side even when I begged her to.
We have our moments, we aren't the 'perfect' couple, I don't think anyone is, but we are perfect for each other. We are the perfect partnership; some might wonder how being the perfect couple and the perfect partnership are different but I believe that they are.
I think that you have to be a partnership to work well as a couple but that you can be in a couple and not be in a partnership that you can just be 'out for yourselves', I just think it works much better if you have both, I believe it makes you stronger.
Her reaction
When I told Amy and watched her break in front of my eyes, when I saw the damage I had already done; I wanted to take it all back. I wanted to tell her to forget I had said anything, that it was just a sick joke, a moment of madness, that I honestly didn't feel that way at all. Except I did feel that way and I meant every word and she knew it as well as I did; there was no taking it back, there was no way I could.
I tried to make her understand, I tried to show her that it wasn't that I didn't love her enough to stay but that I loved her too much to do it to her; that I couldn't be the anchor pulling her down because no matter how many times she said I wasn't, I knew that I was and I couldn't do it any longer.
I knew that she saw the pain I was in, she lived with me, she knew me better than anyone, she saw me suffering on a daily basis. She was there with me every day I spent in the hospital, was aware of what I endured; because she endured it alongside me.
I don't think before that point that she had allowed herself to believe there would ever come a point when I would say enough was enough. I don't believe she had ever considered it. She called me selfish, she said the whole idea was selfish and that anyone who did it was cruel and thoughtless.
She told me she would never support me in my decision, that she wouldn't be there with me, that she would stop me from doing it, that she hated me for hurting her like that, she cried and cried and threw every ounce of hurt back at me that she could and I took it all because I knew it was only the same hurt I had just given her.
She asked me how I could even think about leaving my nephews, she told me I would break all their hearts, that I just couldn't do it, that it was evil, I was evil. She didn't want to be around me, she wanted to be away from me but kept coming back (as is Amy's way during arguments lol.) I think at that moment I pretty much hated myself too.
I can't remember what happened after that if I'm honest; those days are a blur of tears and raw emotional outbursts from both of us, launched at each other like weapons.
However Amy had realized how serious it all was, how serious I was about it and that she had to act now if she was to keep me with her, if she was to help.
What she did
She found a support group of other Melkersson Rossenthal Syndrome sufferers on Facebook, the last place I would have ever thought to look! She signed me up; I got talking to people who understood what I was going through for the first time in my life and that was an amazing thing and still is. That group is a gift to everyone with MRS who finds it and Amy found it for me when I needed it more than ever before.
Next we came across the Stem Cell Replacement Therapy as a possible treatment (not a cure) we researched it and the more we found out the more positive and hopeful it all sounded. My last post kind of takes it from there with regards to that and I will explain what happened when I went for the treatment in a future post...
However I would just like to say that had things not improved I honestly do not know what I would have done, whether I would have gone through with my decision to go to Dignitas but that I meant it at the time and I had researched the place, people who had made the same choice and I knew exactly what I was thinking.
My doctor has said himself in that past that what I had was 'no life' and he was right, things are slowly improving with the SCT, however my life is extremely far from ideal. But that's the thing; I just called what I have a life and I meant that too!
End Note
I have been informed by a very lovely lady that my above post triggered her to write a post of her own, on her blog, re the same issue. If you would like to read her story: Here it is. I am honoured that she described my post as being "bold as hell & refreshingly honest."
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