Living with Multiple System Atrophy. A life limiting, neurological brain disease.

Dying and other taboo subjects

on October 27, 2013

northern lights sam and andy
“Never tell me the sky’s the limit when there are footprints on the moon” I read this and it made me think of course there’s more to see, more to do, more places to see and more doors to open. I sleep more than I’m awake, I slur more than speak, I can’t walk but I can still visit, I can still hear, so don’t shout (why do people do that, and did I do that when I could walk?)

I had a conversation with a very special friend today and I watched her eyes fill with sorrow as she spoke of her Gran who is old and frail and of me and msa. We hurt ourselves so much more by not talking about death, if we bottle it we are bottling the fear, the hurt, and the tears, it would be so much better if we spoke of our fears and then for the person left behind they would have a bottle of happy memories instead of a bottle full of sadness.

I love my life despite the MSA because I have the most wonderful family and friends and through MSA I have made many more friends some I have met already, Torsten a verkligen under bar maänniska, Carole whose friendship my whole family love and by this time next week I will have met Paul and his family, then the support from the Trust and our online friends means I can choose never to be alone, although like everyone else sometimes time on your own is what you do need.

As much as I love my life I hate MSA and I am sure of one thing, I will not let MSA kill me, I’m quite sure that I will know when the time is right for me and that will be my decision. Death is always an uncomfortable subject to talk about and then there’s the ultimate subject no one ever mentions: EUTHANASIA
The definition of Euthanasia – The act or practice of ending the life of an individual suffering from a terminal or an incurable condition, as by lethal injection or the suspension of extraordinary medical treatment. Also called Mercy Killing, the act of putting to death painlessly or allowing to die, as by withholding medical measures from a person or animal suffering from an incurable, esp. a painful, disease or condition.

northen lightsA taboo subject but I’m guessing most people are afraid to talk about it because they may be ostracised, lose friends and left feeling more alone than ever. I know by bringing the subject up I risk losing friends or people may never look at my blog again, I’m not saying it’s the right thing to do but I’m also saying it’s not the wrong thing to do either. Many people will say this is not the same but a few months ago we made the horrendous decision to put our little dog to sleep, she was blind and deaf and although she still wagged her little tail and seemed happy enough there was also many, many times when she looked like she was suffering and just had enough.
Now obviously Tara was a dog but none the less, she was loved as much as any member of my family and watching her suffer was incredibly painful, making the decision to put her to sleep was also awful, because we had no way of knowing if our little dog wanted to be here or not so we went with our gut feelings that the only reason we were keeping her was for us, I would hope that I be allowed the respect of making my mind up…

So many cases have gone to court and many more will go to court before someone says that yes it is our basic human rights to live, but it should also be our basic human right to die as well, as long as that person is of sound mind and know exactly the consequences of their actions. As I write this I will not deny it’s really, really hard and yes I’m crying, but I’m crying because I know with every beat of my heart that I will make the decision myself one day because MSA has already guaranteed me a earlier death than I imagined.

It is around now that I wish Andy would happen to come in the room and give me a hug, or that my mum was here and I could just lay my head on her lap or Rhanna comes bursting in and starts to yap despite she can see I’m doing something, sometimes these are the moments that are the best! People will have their opinion and they are very much entitled to that but if one day a member of their family or indeed themselves becomes terminally ill there will be an element of thought, of that you can be sure.

Today is Sunday all of the above I wrote yesterday, I stopped because it’s a painful subject and I knew I would come back today with hopefully a cheery story, so what’s happened this morning was bizarre. I had an email asking me how I could share our lives out for everyone to see ‘a reality show’ it’s the first time I have ever had a slightly hurtful email, I share my experience of MSA and the effects it has on my family and I, there is so little information out there so we NEED to make sure people start to recognise the disease so that more money will be given to research, to find a cure. As my mum would say ‘there but for the grace of god’ and that is exactly the line I replied to the email.

I can’t remember if I said last week but whilst in Portree we met a lovely lady Gill who had read our story in a newspaper and recognised that the symptoms I had were the same as her husband, sadly it did turn out to be MSA for him but they were relieved to know what it was they were fighting, I know you read the blog Gill and I tried to email you but it was returned please get in touch again so to the person who says I live out our lives like a reality show, Gill and her family would still be searching for the answers and if you have reached the end of this blog then you are obviously much more interested than you claim to be!

Sam and Andy
Yesterday is history, tomorrow a mystery, live for today it’s called the present, there’s a reason for that, because it’s a gift.
Or is it?
Imagine waking and being unable to move, walk, talk, swallow, do anything for yourself, don’t know about you, but you can keep that gift for me, thank you very much!!
I spoke to a friend during the week who has a very sick elderly relative in hospital, her wish was they would let nature take its course, I’m pretty sure that kind of thing is occurring up and down the country daily, certainly makes you think.

We all had a fantastic time away last week, recharged the batteries and relaxed, no mobile phone reception or Internet, just like the good old days!! How did we ever manage, it was bliss, the scenery on the drive their is amazing, through the Trossachs, Lochearnhead, past the green welly!! Glencoe, Fort William, Glen Garry, Eilean Donan Castle and onto Skye, took photos for Sam as she slept through it all, again!!

I know Sam loved the time away, it’s painful though as I know what she would give to be able to walk over the hillside with me and Molly (the dog) and take in the view and the sea air. They say the best things in life are free, after a week on the Isle of Skye I agree.

I have to give a special mention to my father in law Alister who kindly volunteered to cat sit for a week, thanks Ali, and he saved us a fortune in heating as he couldn’t find the on switch, told us later he had to go out for a heat, old age doesn’t come without a price!!
You keep on fighting Sam, luv ya xxx
Andy and sam


12 responses to “Dying and other taboo subjects

  1. LeAnn says:

    Sam, I admire your courage in speaking about this “taboo” subject. My husband was diagnosed with MSA in 2009 at the age of 61 so I understand what you are going through. To the person who wrote the mean spirited email: never judge a person until you’ve walked a mile in their shoes.” My heart goes out to you and your family. Thank you for sharing your story, it means so much to those of us who are suffering with this horrible illness.

  2. Ria ( Falkirk for Mums) says:

    Samantha, I love how honest your blogs are, even when they make me cry. Something like that has to be one of the hardest decisions you could ever make but when the time comes you will know if that’s what you want to do and everyone that loves you will support you even if it’s hard for them to accept. Your one fantastic lady and you are always and will always be in my thoughts, just like andy and rhanna will be. thanks for sharing your story with us, I would never have known of MSA or what it was without you, just like members of Falkirk for mums that are starting to read your blog, so already you are making a difference by sharing. glad you’s got a break away from it all recently and hope your feeling well, I’m sure we will catch up again very soon – thank you again for my special gifts, absolutely love them with all my heart. Lot’s of love an hugs Ria xxx

  3. wilma0750 says:

    Well sumphy thats hard hitting an straight tae the point still cannae work oot why death is a taboo subject we aw gonna die sum o us have tae go sooner but ave got that worked oot him up stairs only takes the very best an wot a diamond he gettin when he gets u mind if there was a choice u widnae be gon this worlds a better place wi u in even tho u can b a wee pest but ur ma pest aim high hen u got a lot o living tae b daen places tae go people tae see and a few laughs along the way . Oh aye before a forget that person that sent u the horrible email wants tae get a life an maybe try living in oor world bloody eejits . Luv u infinityawesome andy anaw a real honest tae goodness gentleman an rhanna shes a star xxxxxxxxxx

  4. Mary Werth says:

    Sam, I guess you know that the group calls those who have died of MSA, “MSA Angels”. They are all heroes to me. Some times it seems that those of you who continue to fight the monster in this world are already angelic; that’s you.

    My Hero, my husband died of MSA at the end of August. He knew he was always the one in control; he knew we would support whatever choice was right for him. At the end, he could not speak, he could not swallow (g tube), he was trached for oxygen and the last three months he was on a ventilator. As much as he knew he could call a halt to all of it when it got to be too much, it just never did, so we didn’t have to deal with that difficult reality. Loren’s mind remained so clear even as he took his last breath. (Sometimes, I think it would be almost kinder with MSA if it allowed the mind to be a little less aware?)

    Loren found meaning in the smallest things, the smell of coffee brewing, the sound of the sea gulls, watching the palm trees swaying outside his window. The evening he died, in his own bed, in the home he loved, his family and best friend (Rick) were with him, sprawling all over his bed, loving him, letting him know he was still a vital respected part of this world. He had some brightly colored balloons drifting in the air at the foot of his bed. He watched them with a smile on his face until he finally closed his eyes, believing we would all watch the rain with him after his nap. He left our lives that evening, softly, quietly, peacefully, knowing he was greatly cherished.

    Loren never had a depressing day; he was never moody; he was always a joy. I really believe that was because he knew he was in control and had the power to make that decision and he would be supported. I do thank God, it never came time to decide, but I would not for a moment have thought of making him feel guilty for wanting to take the final power away for MSA. In my mind, that e-mail sent to you was more than insensitive; it was cruel and deserving only of being ignored.

    I was Loren’s caregiver, a privilege for which I will always be so thankful. Even in the ICU, I was by his side every moment. Toward the end, my life was focused on making every moment some indelible imprint on my brain so I would be able to relive them over and over again. When he died, a huge part of me died and has left me empty and sad and absolutely determined to talk to the world about MSA. While it robs those of us left behind, it loses because it can’t help but to make every person who suffers from it so incredibly noble and inspiring. There is no politically correct way for a life lived with MSA to end. Whatever you decide it right for you. People who deal with MSA continually open the eyes of all of those around them until they close their own.

    God bless you and your family and friends.

    Very sincerely,

    Mary Werth

    (Loren James Werth
    2/14/52- 8/29/13)

    • LeAnn says:

      My husband was also a victim of this horrific disease…he passed away at home on November 6th, almost 4 years to the day when he was finally diagnosed with MSA. He stayed so positive until the last couple of months. I will always love and admire him for the courageous way he fought his battle with this cruel illness. He was the love of my life and I will always be grateful for the 46 years we shared. Right now, my heart is so broken. We are having his memorial service on Monday. Being his caregiver gave my life purpose. At some point, my purpose will be bringing awareness and fundraising for a cure. When my husband had to exchange his walker for a wheelchair, it was so hard on him. I remember one particular time that he was struggling to move in it…I put my arms around him and told him through my tears, “you don’t deserve this!” No one deserves this truly horrific disease.

  5. Thank you for discussing such an important topic, Death, and not wanting to be suffer or have our loved one suffer, is certainly something I have thought about on more than one occasion. I do feel protective. I live in the moment. I don’t project the worst of what might be. I am busy doing these things: I honor the relationships that my loved one has had over the course of a lifetime. I protect his dignity and well being and independence in the smallest details. I accept the imperfections of life better than I ever have. I see the strength as well as the illness in my loved one.

  6. Marcel says:

    Dear Samantha,
    Thank you for your blog – I wish, with all my hearth, that your best days are still ahead of you. I know that is not possible physically, unfortunately I am all too familiar with MSA, but do remember that the bond between you and your loved ones, gets stronger every day. Yes, they have to take care of you, yes, at some point they will need to help you with everything, and no, it will not always be pleasant for you or for them – but they will help you with love, out of love, and feel closer to you because of it. Almost 10 years ago, my dad died of MSA. Unfortunately, he was diagnosed very late, I suspect, or else the disease just progressed very fast, as we only had a year and a half after the ‘probable MSA’ diagnosis. My mother was grieving too much to allow an autopsy, which I personally regret, as it could have helped research. The official cause of death is now pneumonia. But we all know what it was. We also know how rare and unknown the disease is, where we actually had to instruct our family doctor on where to get information about it. My father ended up being unable to walk, talk, or even write, due to his unsteady hand, at the very end of it, but both the bad and the good of MSA is, that until the very end, you are clear of mind. We knew he heard and registered all we told him, all our tokens of love were understood and accepted, even though he very limited ways or responding. We had the change of a proper goodbye this way, and honestly, I am not unhappy with the speed at which the disease took him. The symptoms can become such that it is logical patients ask themselves: do I want to go through all of that? And naturally, most patients wait and wait, but if there is no chance of a cure, and so far there is not, and if life becomes too hard, too humiliating to live, and if you are ready to say your goodbyes, know you are loved and have let your loved ones know and feel your own love – that will be your choice to make. No lawyer, no priest, no judge should deny you to choose your own moment.

    I wish you a mountain of strength and an ocean of love,

  7. Shona Darroch says:

    Hi sam. This blog is amazing as it is honest and educates people about msa. I imagine your blog helps a lot of people who have the same illness as well as helping relatives and friends to understand as well as giving comfort. You are so right about the topic of death. It is good to talk about these things. I think it is really healthy. I don’t know how much of it is culture or human nature-that we don’t talk about these things. People get scared about death and illness. It’s great you are highlighting MSA and the important issues it brings up. Keep up the great job you are

  8. Janice says:

    Hi Sam your blogs are honest ,I agree with you about death it should be our choice I watched my dad suffer so much and he had a terrible death he had mnd and while I watched him I thought to myself they wouldn’t let a animal suffer like this .i love reading your blogs even most of the time I’m crying my eyes out sending all my love to you Sam and your family xxxx

  9. Janette says:

    I have followed your blog for months now and admire your bravery and constant outpouring of love. I felt that I had to commend you on your comments about assisted dying and breaking of the taboo. It is not easy to discuss this at any time but each time someone does, it is a tiny bit easier or the next person to bring up. Much love to you all (even tho you have enough to the moon and back) to you all

  10. Heather says:

    Hi Sam

    Thank you for posting this brave honest and open blog! I used to be a nurse and was told I should never discuss death with patients…. After being ill myself for a few years I often say that I would want to know all the details if I had an illness that would be life reducing to have as much control over what life I had left, I am experiencing autonomic health issues and reading your blog although made me sob my eyes out, I also thought how wonderful you are! My thoughts and love are sent to you.


  11. Amy Teague says:

    I also have MSA and I am so so thankful for you and your willingness to share your journey. It makes me feel much less alone. God bless you.

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