I read the news today. Oh, boy...

[immisceo]

The right to die campaign (asking for the decriminalisation of assisted suicide) in Ireland, brought before the Irish Supreme Court this past year (it wasn't passed), involved a woman named Marie Fleming. Marie Fleming had MS and died yesterday. She was 59.

I find the discourse in the media extremely upsetting as a young woman with this disease trying to navigate the realities of it. We hear 'MS is individual', but I've also been told it doesn't kill you, rather complications *might*. Yet the phrase 'terminally ill' is used ubiquitously when Marie Fleming is mentioned.

When I read about this young (yes, I believe 59 falls within that category) woman who longed for the right to die in articles discussing 'late stage MS', I have to wonder if it's the media going overboard, or if it might perhaps be our community (overall, not just MedHelp) denying the existence of these cases. Is it likely that she had an aggressive course and was not treated early enough with DMDs? Or is it that it *can* cause death in small numbers of people? Or that it was a combination of things the public has no right to be appraised of?

These are not rhetorical questions for me. I truly don't know what to think.  My life (and this is an embarrassing, selfish admission) has been made more difficult this past year because of this case. And I am not alone. At an all-day conference for young people with MS in May, it was discussed how much more difficult it is to reach out to people or 'disclose' when the assumption is you are dying and miserable. And we can compete with wall-to-wall media coverage.

It has been a massive step back in Ireland as to how this disease is perceived. Instead of 'we live normal lives' headway that's been made, it's back to 'oh, you just got a death sentence. I'm so sorry.'

I guess I'm just confused. Am I, are we, in denial of how bad it can still get? Do we exclude the worst cases from the conversation because they're an 'inconvenient truth?' Or is this just an anomaly that got a lot of press because extreme stories sell? She, like me, was diagnosed in her early 30s. She, like me, was stable for years.

I feel confused and frightened and bombarded with these extremely negative images. I was going to tell my in-laws in a few days that I have MS, not making a big deal about it, but I don't think I will now because their reaction will be coloured by all this.

Thank you all for listening. This is just extemporaneous waffle, but it's been on my mind all day. This community means a lot to me.

[calamfred]

Well said, Laura!

Kyle, I couldn't help but laugh at your last sentence...my husband has had some family treat him that way. Even asking me about him as he stands there. I tell them "Among other things, his mouth still works, believe me!"
;-)
C

[kwarendorf]

" they have seen those same headlines and for everyone it helps to shape their perception of how my life must be going."

This happened to me yesterday. Someone I knew in college, but haven't seen in many years, sent me a Facebook message. She said she was saddened to hear of my DX. I can't help but think she envisions me in a wheelchair with a drool cup :-)

Kyle

[Lulu54]

As people living with MS, we can understand the semantics of these headlines, but the general public does not.  Every time a case of MS makes the headlines, the well intentioned comments and suggestions from family and friends increases.  The comments from acquaintances/coworkers  who know I have MS but aren't part of my close circle are sparse but I know they have seen those same headlines and for everyone it helps to shape their perception of how my life must be going.  

Marie Fleming's case is just one of the many out there of people who are livinig with a chronic disease that has caused horrific pain and suffering, and 100% dependency on others.  MS just happened to be her disease and the headline of the day- tomorrow it could be a person with cancer or Lupus or any other disease.  I can see where on your tiny Isle, the interest in this particular case will be slow to wane and most everyone will have their concept of how people with MS live,  shaped by these headlines.

It is sobering to confront the idea that we all will eventually die and having these headlines adds reality that is close to home.  We can read about a plane crash and deaths and remain detached. Or auto accidents (1:100 odds) that cause fatalities, but not dwell on that risk in our brain each time we board a plane or a car. We don't even think much about the cancer odds of 1:7.  I've never seen odds listed for people with MS,  but I do recognize that overall our odds of dying are 1:1 from any cause.  

Yes, death from MS is a subject that isn't discussed often, because as many have already pointed out, MS is not a killer directly.  People who are sedentary/inactive/immobile because of this disease are more likely to have problems with pneumonia, bed sores, undetected UTI's, etc. - all of which can cause death.

One major difference between Ms Fleming's MS and ours is she was diagnosed at a time when there was no treatment.  Doctors were unhable to offer hope and many times these patients were told to just get on with living and be prepared to be in a wheelchair in the future.  That is no longer the case- we have tremendous options for treatments that are known to slow the progression of the disease.

Educating the public about MS and how people with this disease can continue to live a meaningful life full of family, work, and meaningful community contributions is up to all of us.  Marie Fleming was at one end of the scale for MS but there are so many more at the other end.  I hope your presence in your community will add to the knowledge base of the people there that MS is not a death sentence.

Sorry for the ramblings - I hope there was something useful in all these words.
be well, Laura

[supermum_ms]

On the other hand sensationalised stories on the worst of the worst, do get people donating and more aware of chronic conditions like MS, hmmmm i don't know exactly what i'm trying to say but I do think that some good often comes out of these horribly sad individual medical situations the news picks up, or i'd rather believe there is.

We had a high profile court case over here (Australia) a few years ago, he was fighting for the legal right to stop all medical assistance/intervention that was for him the only thing prolonging his life. I believe he won his case, it technically wasn't supporting the right to die, but his right to have the removal of life-sustaining medical treatments. A legal interpretation of DNR laws, so his medical team could legally stop all preventive medical assistance, which for him included his feeding tube, the only medical intervention still not removed. I have no words to express my feelings on this........

It's just tragic no matter what you believe in! It's hard to imagine the situation an individual would need to be in, for a peaceful ending to be what they need/want above all else, i can understand the acceptance of the inevitable and their inner strength and drive in taking their situation to court. Surly there is hope behind that drive, hope of getting the final say in when and how their life will end and to be honest, i'm not sure if i was in their shoes i wouldn't want the same.

As ess said "It's really not a question of how we die, but how we live." here! here!

This news story has more impact on you, because of your personal connection but that connection is where it begins and ends, unique like snow flakes remember...........the next chapter of your story is your's and no body else's!    

Hugs...............JJ

[karryon55]

I also saw the story yesterday evening online. It is a shame that the media sensationalise things like this but that is what they do best. I also have two second cousins who have or had progressive MS. One died from complications & she was only in her late 30's. I think for me I have a thought in the back of my head that "yes" it could happen to me as well but I try not to base my life & future on a very slight possibility.

I think it comes down to MS lottery & where the damage has hit your CNS. I know when it was first suggested that I might have MS I could only think of my second cousin & thought how ridiculous to think I had MS. I also had a family member who had a serious motor vehicle accident in their early 20's & they had physical disability that eventually took their life 30 years later.

I have also seen a person with such severe systemic RA that have died through complications. I also have RA & at this stage it's not systemic but even if I did get systemic problems it doesn't mean I will die from it. It again is a lottery of where the damage might occur & how bad it is. Most of the time it's the internal organs that take a battering.

I had already decided that I can't base my life on what has happened to others. I can't predict the future of my health & I don't think anybody can. Through people like Marie Fleming I can put in place measures to ensure I have some choice in my future "if" my health took a bad turn somewhere.

Karry.

[essdipity]

Given what you've said, and what you've read about and seen on TV, I hope the Irish MS and medical communities will come fighting back and refute the sensational aspects of this story. Maybe you could be a part of that effort. It would certainly be empowering, while also serving to educate the public.

ess

[immisceo]

Thanks for taking the time to comment, ess. I really appreciate it.

It's not so much the will it/won't it kill me thing. Neither of my parents made it to 50, one was a long way off 40. These are not things I spend to much time on because I know all too well nothing's guaranteed, so why spin your wheels on them. It's more the reinforcement in the media of that being the inevitable course of MS that's obviously really gotten to me, as if that's not an issue of semantics, rather an inevitability. And its omnipresence the last couple of days, I'll confess *has* started to seep through and put me in a less productive headspace.

But you've all been fantastic and reinforced the home truths. I'm meeting up with a friend tomorrow for a film and food and will NOT be subjecting myself to any local media. And I think that's just what the doctor ordered.

[immisceo]

Thanks for responding, Kyle

I guess it's more that these detail-free representations have co-opted the bulk of the narrative here. I suppose I'm not naive to the realities that cause this (more clicks, more papers sold), I'm more just exhausted at the step backwards as *that* aspect of it isn't notional.

Seeing people so upset that informing their family was a task compounded by this (the first two rounds; when the case was brought in January and when the decision was handed down this summer) is painful. It's just been a whale of a year in the somewhat intimate Irish MS community, at least amongst the newbie young-ish folk I've been speaking to.

[essdipity]

Let's face it, we die because we stop breathing and our hearts stop beating. There are a huge number of reasons these things happen, but that's what it boils down to.

In terms of MS, CNS functions and failures are, in the vast majority of cases, only remotely related to death. If the autonomic nervous system severely impedes our ability to breathe, we have a greater chance of other system failures involving lack of oxygen. If we can't swallow properly, we could choke to death. If MS causes a catastrophic UTI, the infection can be overwhelming and ultimately can be beyond our ability to fight. And so on. So it's more or less a matter of semantics as to whether MS causes death.

Still, MS itself is not deadly. And in reality, while we live with MS, we are likely to die from issues that people without MS also die of. To me, this means that it's pointless to worry about things we cannot control. We can do our best to be healthy, with all that that entails, but beyond that, we live until something kills us, which is 100% for everyone.

It's really not a question of how we die, but how we live. I don't mean this in some 'heroic' sense, but rather, in the context of how meaningful our lives are to us personally. That varies with the individual, of course.

I'm getting quite elderly, but I have no intention of departing this earth anytime soon, not if I can help it, that is. All the more reason that those of you who are 'spring chickens' should focus on living, not dying. It's much more satisfying, and also much more realistic.

ess

[kwarendorf]

For me, saying that MS doesn't kill you is semantics. It is MS that causes your vital systems to degrade. So eventually you die of liver or heart ailments. That's true, but you wouldn't have had those issues if you didn't have MS.

An yes, MS can get as bad as Marie Fleming, Or Annette Funicello. It does not always happen this way. They never specify the type of MS and I suspect a large number f these media cases have PPMS. The media likes to point up the "devastating" nature of MS. They have to sell newspapers as my father used to say. (Speaking of my father, he officially does of a heart attack. The reason he had the heart attack was that his lungs had not worked properly for 4 years. Eventually his heart could no longer function on the reduced oxygen it was getting from his damaged lungs. So which killed him, the heart or the kings?)

I'm 54 years old. I've had MS for more than 20 years. My current version is SPMS. I have only been receiving treatment for 2 years. As I have said here ad nauseum, if you saw me walking down the street you would have no idea that I had MS. This is MY reality.

I can no more tell you your future than I can predict mine. I just wake up every day and go about my life. I do not worry about what might be in store. I can't control it beyond what I am doing, which is everything I possibly can to fight this disease. So far so good :-)

Kyle

[immisceo]

Thanks everybody for responding to my rather stream-of-consciousness emotional up-chuck.

@Dennis I do think she was struggling with pain and paralysis combined with zero cognitive decline. Perhaps being acutely aware of things was part of her reasoning. But this (her reasoning) is never really touched on or questioned in the reporting. It's kind of taken for granted: "She had MS. Of *course* she wanted to die" - kind of a thing.

I agree that often times what winds up on death certificates tells a story of reductive expediency (perhaps for the purpose of public health statistics) rather than the more nuanced reality of so many deaths.

@Corriel I'm so sorry the theoreticals rolling around in my head have hit so much closer to you. You're perfectly right. Our arsenal is much more to reckon with than it was not too long ago. I too hope the short attention span of the news cycle works its magic here too.

@ghost39 Yup. We have to stay strong. Because this whole kerfuffle has put me in a mindset I've not been in since I was diagnosed three years ago, I've decided to 'reeducate' myself a little and just go back to basics. For me, that means breaking out MS for Dummies again and sending up a flair on here. Thanks so much for taking the time to commiserate.

[ghost39]

I must confess I too feel a bit afraid, since its such an unpredictable disease. Hope and strength is what we have to keep us going.

[Corriel]

It is such a shame that her death is being sensationalized.

I too have wondered if I am denial and had a second cousin who died from MS complications approximately 10 years after her dx at age 40. Since I was dx at around the same age, my family is in worst case scenario mode.

I do think amazing advances have been made in recent years and medical professionals are better able to understand more than 20 years ago.

I do not think MS carries a death sentence, although it could, but we can all get hit by the proverbial bus so I don't think I am more likely to die from MS than anything else.

I hope the furor over this goes away soon.

Corrie

[Sailorsong]

I suspect the theoretically it is possible to die from MS since everything in our body is controlled by the CNS. If you happen to have just that one spot out of billions of places MS can strike in your brain it could cause you to die. But from what I have read here and many other places the deaths attributed to MS are really other health problems that were made worse because of the MS.

A good example was my one cousin that had MD. He developed pneumonia but because of the MD he could not cough hard enough to clear his lungs and therefore died. His death certificate stated he died from MD even though it was the pneumonia that really killed him.  I suppose something like that could happen with MS also so that the death would be ruled to be from MS.

Without complete medical history of this woman I guess we will never know. The big question is why did she want to die? Was she not receiving the care to control pain? Was it because of cognitive decline that was not being addressed? But I suspect that most of this was just media hype in sell the story. In other words making things sound a lot worse than they were.

Dennis