It feels like cheating death

[Ezra]

Hey,

some know of my story, but for those who don’t know me, I’d just give a short description what happend to me.

In Feb 22 I had a colon disruption and I was to rushed to the hospital and had to undergo an emergency surgery. I had an intensive sepsis, which also led to a sepsis shock, and multi organ failiure. My family was prepared by the docs to expect the worst.
After 5 days it was decided that I was connected to a heart/lung machine (ecmo), for that I was transported with a helicopter from our local hospital to the next university hospital. After I my heart/lung functions were supported, my organs began to slowly recover.
I was in coma from the day of the first surgery (I had to undergo several) for 17 days, which is considered a long term coma by medical standards. During my coma I had hallucinations which I clearly can remember, and after I got woken up, for the first few days I also had visual and accustical hallucinations.

Due tue the sepsis and the coma, I developed CIP and CIM (critical illness polyneurpathy/miopathy) which basically means that my nerves in my body didn’t work any more. I was motionless/paralyzed from my neck down, but clear in mind, after my body got rid of all the drugs, I got to keep me in coma.

The docs were pretty much surprized, not only that I survived, but also that my organs recovered, so within a few weeks I didn’t need dialyses any more, and I also could get rid of the additional oxygen.

After I was released from the ICU after about 6 weeks, I went to early rehab (still being motionless from neck down) and I went through several stages of rehab from there. I learned to use my hands again, managed to handle a wheelchair, later to get out of bed on my own and back in, and also regained control over my feet. After 6 Months of rehab, I was able to walk again a few steps. Today I manage to walk freely for a few hundred meters, but I easily exhaust, and even single task exhaust me that much, that I sleep for hours after that.

All my friends, family, docs, and staff congratulated me to my fast progress, and they are all happy, how much I achieved. I feel different.

I feel like I have cheated. I cheated death. All data, the docs, all their experiance said I should have died within the first week. I just didn’t. And I still feel like I should have.

Now that I survived, I was often told, this might be something like a 2nd chance - but a chance for what? I see nothing I did wrong in my life before, and I don’t see anything I should do better or different now (especially, after I am still handycapped and disabled)

It feels wrong that I survived. Not that because others would have deserved to survived, but because I don’t feel like I have deserved it. It feels like I get credits for the ultimate test, on which I cheated.

I kinda feel like I am expected now to do something special now, given that new chance, but I do not feel like making something special. I just want to be left alone, and I kinda also refuse to keep working and training to gain more independence.

I sometimes just want it to come to an end.

[Lisalovesfeathers]

Hi Ezra, Thank you for your post and for the reminder and update.
I do recall now how you went through so much, I found your post very interesting and can certainly see why you are thinking and feeling the way you are.
I am going to turn it around a little and see if we can look at it from a slightly different perspective and see if that helps.

@Ezra

Now that I survived, I was often told, this might be something like a 2nd chance - but a chance for what? I see nothing I did wrong in my life before, and I don’t see anything I should do better or different now (especially, after I am still handycapped and disabled)

I honestly do not think that anyone assumes you need to atone for anything you have done in the past, I wonder if the 2nd is purely the 2nd chance at life because for a while there every one thought your 1st chance was over, also you are able to move around more than you first thought you would be able so again its another opportunity to be able to perhaps have a chance to do things you never thought you would be able to. I wonder if its a do again rather than do different or do better?
I would just like to add and this is just my opinion, I don’t personally think you cheated death, I believe you were meant to survive and you had some amazing medical health professionals making that happen and I am so glad they did therefore you don’t have to feel like you have cheated anything or that you have to do anything other than live your life the best way you can and how you choose to. It would be very sad for it all to come to an end after you have fought so long.
What upsets you about working towards gaining more independence? is that something you don’t want or is it just the pressure of having to do it? I cannot imagine how hard it is to keep up with all of that just so that you can take care of yourself on a daily basis.
I wish I had some wonderful words of wisdom for you, all I can say is that, you deserve a to be happy, you deserve to feel peace and you deserve to live the life you want and that isnt because you survived its because you are you and you have value as the wonderful person you are.
Much Love Lisa. x

[I-Am-Reclaimer]

Hey friend,

Your story is truly incredible. Thank you for sharing.

Instead of trying to communicate my thoughts, I wanted to share a personal mentor of mine. I was lucky enough to help him start his non profit, disable but not really. I don’t know if you will relate, but I do hope that you’re able to gain some sort of perspective from what he says …

Disabled But Not Really | Wesley Hamilton | TEDxOverlandPark

[Micro]

Dearest @Ezra,

You have for sure been through a lot only in a year, on top of everything you’ve shared even before that, and all the things you were already working on. I can only imagine how this series of unexpected, medical events has been a brutal reality check, this kind of tornado that shatters absolutely everything and makes you go through all kinds of grief.

The fact that you are now more in a position of contemplating what happened and checking in with yourself regarding these big questions - how to embrace this “second chance” - shows how much you’ve already accomplished in terms of personal recovery. It is now a time when you can slow down and look back, think and create meaning. But how painful that process can be as well… It truly is an unfair series of events that pushes you to ask yourself huge and deep questions, while you didn’t ask for any of this, and certainly not to have to feel like you should do something better or differently out of the time you have right now.

While I was reading your post, tears came down to my face because I deeply relate to what you describe – of course according to different circumstances. Losing my big brother a couple of years ago to a genetic disease that we didn’t know was present in our family, I am now alive - my sister as well -, knowing that I’ve been lucky at the genetic lottery when he didn’t. After his death, we had to do these genetic tests to identify if we’d develop the same disease… turns out neither my sister and I had it. It was only our brother. And receiving those results, we were left with a big: now what? If we look at the facts, it’s easy to understand the situation. If you start to think about it from a spiritual/philosophical standpoint, the question “why” becomes an obsession.

Ironically, when he was sick and at the hospital, he was talking about his “second life” and how it would be, all the things he wanted to do differently. Life decided for him that it wouldn’t happen. And his disappearance has left my sister and I with an immense grief… and survivor guilt. The feeling of guilt for being alive, and knowing that I “avoided” this without even having to do anything. I certainly don’t feel like I deserved to live. To sound somewhat selfish, I’ve been thinking for a while that I didn’t ask for this “chance” at all, and even less to be aware that I dodged the bullet out of… chance? (God? or whatever anyone religious would put behind this).

Just a couple of weeks ago, my therapist did and exercise with me to help me embrace the joy I was feeling at the moment. This session quickly turned out into me thinking about my brother and bursting into tears - feeling joy feels wrong when it doesn’t feel deserved at all. It’s part of those “gifts” I didn’t ask for. So, embracing life and not living it from the substitutes’ bench feels more comfortable, even if it freaking hurts most of the time. If you don’t feel like you deserve to live after the realization that you are alive, it just feels more safe to try to live a life from the passenger seat.

All of those questions and thoughts hurt anyway. It’s all about meaning there – the meaning you find or input on what happened, and on the kind of lesson it could bring into your journey as a whole. Although it always seems easy to find meaning from the outside, and it’s easy for people to tell you what happened according to their own perception and beliefs. But once you’re in the middle of this situation, once you’re forced to navigate questions you didn’t ask for… it’s a different story. It’s hard to make any sense out of it, and when we do it’s hard to not feel like we’re just putting a bandaid on something, to the point of making it artificial. Stories we hear about people seizing a second chance in life after a brutal reminder of how fragile it can be, are beautiful, but there’s also many stories out there of people who are left lost, grieving, and trying to find their way despite how what happened impacted them.

I don’t know if you live a second life, if things “should” have been different or not. What I’d say though, is that the meaning you create from all of this is going to impact you deeply - and that meaning is not something you have to endure or build against yourself. You do have a choice when it comes to find your own purpose through this. It doesn’t have to be written somewhere or like an answer to find out. You can create it. You can decide to get rid of narratives that can be harmful to you and would prevent you not to life a “second life”, but from living at all. The idea of “deserving” life or not is one those painful narratives that we can tell ourselves. Unconsciously I’ve been burying this belief within, and it’s the greatest poison I’ve been drinking everyday, as it allows me to live an average life, but certainly not one I truly aspire to experience. I attribute that to personal traumas, but events in life such as the loss of a brother certainly activate those wounds and beliefs all over again.

I certainly don’t have any big answer to give you when it comes to why did all of this happen, and what are the conclusions you could draw from those answers. These are highly intimate, and may take a very long time to be found. What I’m absolutely sure of, and that I would like to encourage you with, is that you will never deserve to be punished for still being here, and you do not need to be anything else but you to have the right to live. We don’t get to live out of merit. We get to live and compose with existence because we are, because we breathe, because we can speak, love, laugh and cry. Whether we understand it or not, whether we put a meaning behind it, we are allowed to live because we exist right now. That goes beyond any “why” - which is hard for our mind to tolerate most of the time, yet it’s still an intangible truth. Because there is time and life left - it is a fundamental right but to have the possibility to use that time.

Knowing you a little bit, I believe it makes sense to feel the way you do after what happened last year. Once the storm has passed, it’s like you’re left with these questions regarding your own worth, your right to exist, which I believe echoes different parts of your life journey as well. It makes sense to feel like this is too much, and that people see in what happened to you something that feels really odd or just wrong in your heart because that’s not how you feel about yourself. They see you inherent worth and wouldn’t even question it, or if whether you deserved to live or not. What they see is a human being who is still alive despite incredibly hardships, and they wish for them the best life moving forward.

Maybe this isn’t about seizing life differently as people tend to convey to you. Maybe this time during which you are somehow pushed into some deep inner-reflection, could be turned into an invitation to learn to love and care for yourself differently, in ways that lean towards anchoring a sense of worthiness, and of belonging. Maybe, just maybe, your “why” could become a deeper sense of acceptance for the very fact that you exist. And like anyone else, that you have the right to be alive, to use that time for good - no matter what it looks like to you personally.

Thankful for you and for opening up about this.