A fellow blogger tagged me in a tweet today. I know this was an invitation to read through or comment. I’ve played around with writing about this subject a few times. It always feels a bit too uncomfortable to express openly like this, but I’ll give it a try. It doesn’t bother me to discuss it with others in hard situations & quiet rooms when needed. (I hope this doesn’t come across as rambling. It is long. But to me every word is here for a reason.)
When Enough Is Enough?
Part of me wasn’t ready to confront this subject in my blog because of past decisions I had dealt with the last time I was contemplating my own mortality. I talk about that personal pain one-on-one only when others prompt me.
Usually I keep it to myself, though I’m not ashamed to talk about it. It’s just a very personal subject.
I talk about death in my blog sometimes, but always in context of LAM or TSC & people I have known who have died.
I typically avoid discussing subjects like end-of-life decisions & assisted suicide (for example) because I know they raise strong feelings & make people uncomfortable. I often feel compelled to, but can never quite “go there.” I guess I was just looking for the right post to frame it around. I think I found one today to attempt a conversation.
I’m using this post as a springboard because I think it’s bold as hell & refreshingly honest. This young woman talks about her own views & what compelled her to consider going to Dignitas.
I can’t say that it surprised me when I read it. Much of it resonated. I fully understood her entire situation & all of her decisions.
There was much in the documentary, “How To Die In Oregon” & the few episodes of the Showtime series “Time of Death” I could tune in to that resonated deeply as well.
These run somewhat parallel to this blogger’s experience.
I fully understood everyone’s thought processes at arriving at their personal decisions of how to handle the end of their life in both the shows & in this post. Especially in the wake of certain devastating medical diagnoses.
I’ve felt this way for a long time, too.
Even when I was younger I never felt that Jack Kevorkian was a criminal. I always thought he was made a criminal for his views on death & the approach he took to help others come to terms with their situations.
I don’t even feel it’s suicide if one’s refusing treatments that may lengthen their life expectancy but not improve or may even worsen their quality of life.
Overall, these are hotly contested issues. I clearly see & understand why.
I have known people who have committed suicide. I’ve seen the effects it has on their family. It’s devastating. No question.
But to me, stopping or opting to forgo further treatments is not suicide.
Nor is deciding that one would rather not lose control of their mind or body (or both) or be held prisoner in them because of a progressive & terminal disease either (just to use a clear example).
I also see how some people are uncomfortable with laws like the recent assisted suicide laws that have been passed.
They fear these newly enacted laws could be potentially twisted to take advantage of vulnerable people. I can’t argue that either.
I’m setting these specific concerns aside to dissect more significantly in depth later perhaps. I’m just discussing my thoughts on what I read in this woman’s post from a rare disease & chronic illness perspective.
I was very ill in 2006-2008. By the time I started Rapamune (in February 2009), I was tired. I wasn’t even expecting the drug to work. It was a last ditch effort to throw something at my illnesses to slow them down.
I had almost 10 surgeries under my belt by that time. (My first major surgery for disease complications came in 2004.) My lung function had dipped under 50 percent. I had at least 5 lung collapses between both of my lungs. Along with two brushes with death, one of those from a lung collapse on my right lung.
I was on short term disability leave at least every 6 months. As soon as I would get back to work, my doctors would find something else that needed to be addressed, or that was making me severely ill. (If I got lucky, it meant minimally invasive surgery. Which meant a few weeks versus months.) I seriously wondered how long I could keep working, much less living.
Yet I had to keep going. I didn’t qualify for social security disability at that time. I was lucky I had the disability pay from my company that I did have.
I really felt the walls closing in. I felt I was up against a clock & time was against me.
I had a 5-10 year life expectancy from LAM (at that time). That disease seemed to cause my TSC to flare up & wreak havoc with my kidneys. When my lungs were behaving, I still wasn’t getting any rest because my kidneys were having issues. When they got that settled down, then it was something else.
I went back to visit my parents one summer (after not being able to go home for nearly 5 years) & pre-planned my funeral.
This was after some very hard deaths of some friends happening very close together. I did this quietly because (at the time) I wasn’t sure if I’d see 30 or at the very longest outside 35. I didn’t want to be considered an alarmist or morbid for facing this. I kept it mainly to myself.
A few of these deaths had really left a bad taste in the way that they were communicated & the way my friends were memorialized. It was not at all like them. I’d be damned if I’d have other friends feeling that way about me.
I at least wanted to have a few ideas down & some direction left for my family & friends should the worst happen. It also made me feel better it wouldn’t be all just left to them to deal with.
Those deaths of my friends really caused me to really look hard at my own situation.
It forced me to examine how I felt about the whole death & dying process in general. How could I come to terms with my mortality? How would I prefer to die?
I couldn’t talk about it much or express it to people often then. That was because I needed to sort out how I felt about it for myself first. I had done so in bits & pieces over time in various situations with family & friends but it was different answering internal questions.
Evaluating this in private first, let me have at least a clearer picture to articulate later if I needed to (which helped).
At that point (if I would have needed it), I wasn’t sure I would have opted for a transplant.
I’m speaking honestly about that. I had valid reasons.
Just like I have valid reasons recently for having changed my mind on that decision.
The survival rates were not as high. They were actually pretty dismal 5 years out from what I’d seen & the information I was given when I knew it might become a reality for me at some point.
Several women I knew with LAM who had transplants had mixed success. Some did well. Yet, more had many complications that led to some very serious & lengthy hospital stays. Others never made it out of the hospital.
One woman I know died of Cancer a few years after her transplant. I understand why. Yet at the time it really angered me (to a degree it still does) & turned me off the process completely.
She made it past transplant. She had her life back only to have it stolen by Cancer after being transplanted?
I know life isn’t fair but to me that seemed a hugely cruel blow to be dealt & hardly a reward for all she had endured to that point.
To compound things, my body & mind were beat up from the constant hospital stays and surgeries. I was wired for crisis, surviving hospitalization to hospitalization. The hospitalizations were getting longer & more difficult.
I was developing complications from surgeries that doctors hadn’t anticipated. I certainly wasn’t suicidal in the least. I was exhausted & at the end of my rope — with all of it. I was just DONE, period.
I also didn’t feel assisted suicide was a choice I wanted to make for myself at any point. I sure could understand why some would look at it & choose it.
I was in my late 20s & early 30s then when this was transpiring. Most days my body was much older & it was failing me.
I had to stop volunteering & give up quite a few things. It wasn’t just my breathing that was getting worse. My quality of life was.
Once I knew I responded to the drug in late 2009, it all changed, remarkably. I could relax, but had to relearn to do so since I wasn’t used to calm & quiet.
Life slowed down. Complications finally stopped. I could evaluate & improve my quality of life & focus on things other than just constant medical drama & appointments.
I made an effort to try new things & enjoy that time. Make the most of it.
I KNEW in my heart of hearts this drug treatment wouldn’t be enough to stave things off long. It would just buy me a reprieve. That was enough.
Even in 2010, (later in the year, after I had moved) my then (new) pulmonary doctor just asked me to go to my transplant center and meet with a transplant doctor to talk about statistics & learn about transplant. I relented but resisted at first. (Especially since I was feeling so great). I was able to get all the not-so-great facts, figures, & statistics.
I knew at the time they’d tell me at the center I was too healthy to be tested. In the end, I agreed it was better to get information when there wasn’t an imminent threat to weigh it objectively. I’m glad I listened & did that.
I had thought I might not be eligible for a transplant in the end if I needed one. My kidneys were doing better, but were still a concern. So with that, I still had written it off as a possibility.
Then came needing oxygen in April of 2015. Then the transplant evaluation in August.
For the past two years (or possibly even more) I had been in the mid to low 30 percents in lung function & had not felt the effect. I had still dropped, in spite of the treatment.
I had just adapted & gotten used to being extremely short of breath & living with it on a daily basis. I was compensating for it when & where I could.
The shock came when this same transplant doctor told me my levels & recommended I consider a transplant evaluation. I didn’t even feel sick (this was in May). I was just needing a bit of oxygen when I worked out. No big deal to me (or so I thought). I relented though.
Then my body lost the ability to maintain safe oxygen levels for not only exercise, but by July for everything else. It made more sense to me then to have the testing. Which I did.
This rapid return of LAM was a shock, but not a surprise. I had known my breathing was worse again & that the time for oxygen had come. I just wasn’t seeing transplant was on its heels.
This time, I felt differently about the process. I felt I had a real shot of doing well with a transplant. Outcomes had improved, so had surgical techniques. My kidneys had improved enough they weren’t as concerned about them.
I had more friends who had successful transplants with great quality of life afterwards than those who had constant complications. Some were very close in age to me.
I was deemed a good candidate, so now am moving forward. (My lung function is still bouncing around & dropping although the drug is still working to hold my kidneys).
I had also beat age 35. Which at a point, I wasn’t sure would be possible.
I decided I wanted more time. Transplant was the best option I knew of to try for that.
Most of my thoughts about death & dying have not changed much since the last time I examined them. I re-examined them quite recently again this summer & fall.
I knew that ultimately they all boiled down to one thing each time I did: If & when I had a choice or say; my death would happen on my terms & on my time.
I would decide when I wished to fight no longer.
Statistics, medicines, treatments, assisted suicide & my diseases weren’t going to factor in as much if at all. I know even transplant isn’t a guarantee, it’s only an option.
Had I not qualified for transplant, I would have accepted it. If it fails, ultimately, I have no regrets.
I’ve seen people beat odds greater than mine. They’ve told me the same thing. “It isn’t over until I say it’s over.”
I’ll know when “enough is enough” for me. Why? Because I made that choice in a dark hour before. I drew my line in the sand.
Maybe that’s what it comes down to in the end, period?
I realize that I may not have a choice or a say. Sometimes it doesn’t happen that way. Life can be random & nonsensical. I don’t say any of this to oversimplify a complex subject.
Yet, sometimes we do get a choice in our death.
If we do, for some people that choice is a place like Dignitas. Or exercising options on some of these new laws. It’s up to that individual to decide for themselves. What their line in the sand is. When enough is enough – for them.
Thank you for sharing something so personal. ♡
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Thank you Nikki for sharing such a meaningful, personal perspective on such a challenging topic. Knockin’ Wood 4U!
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I take this topic very seriously (and personally) as well. I haven’t talked to anyone about my plans yet, but I think that will change this year. It could be that we live to be 90-year-old biddies – which would be fantastic – but then again, we might need everything in order much, much sooner than that. Wishing you all good things, Nikki. ❤
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