I have been like this for 1,000 days. And, exactly three years ago, on July 15, 2020, I wrote a journal entry that turned out to be eerily prophetic:
"What remains when one has been stripped of status, possessions, resources, identity, hope? Who are you—at the core? What if you wake up tomorrow without one of your senses, without speech, without movement, without memory? ... This shell of a person—does it even have a soul? Feelings? Thoughts? Where do individuality and personhood end? Where does the animal begin? How much can you lose while still maintaining yourself? What is superfluous to Being?"
About three months after writing this, it all happened to me. I woke up one day without basic faculties and functions; I lost everything short of my life.
I have spent nearly three years clawing my way out of this hell. At the end of the journal entry, I asked, "Does suffering make you whole, complete in character, lacking in nothing? Can we suffer because [Christ] suffered first, just how we can love because He first loved us?"
The answer to both of those questions is a bold and resounding yes. It takes a lifetime, but, the truth is, we must die before we die; there's no chance after (C.S. Lewis).
For further reading/explanation, see 1 John 4:19; 2 Corinthians 12:8-10; Romans 5:3-5; 1 Peter 4:12; Matthew 16:24-26.
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kitnkaboodle
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It sounds like you are applying what I do to get through this experience. Since my event of 2018, faith and logic have been what's kept me (somewhat) together!
All of the "bible greats" (with some exceptions) have had to also experience the death of this world, to obtain their eternal lives. Some years ago, a pastor said that death was like an anesthesia when the body is in need of repair. We go to the hospital with a serious problem, and we lose consciousness through the anesthesia. When we wake up, the problem is fixed!
People of faith believe that death is akin to this anesthesia, except that after death, we can no longer become ill ever again. And there is permanent, perfect health, physically, mentally, and spiritually.
To boost my spirits when I go through my times of depression, I wrote on my dry erase board, "My eternal life began in 1963 AD!" Counting back 9 months from my "birthday" to the time my life began at the moment of conception, makes me a bit older though! 😄
I will not write a novelette this time, except to say that I hope you are doing a bit better as your earthly journey moves along!!
For my usual bit of humor, I will say that I just experienced a time of discomfort which is a part of our Earthly existence. I went to mix up my dog's food, and a TON of ants had decided that they were hungry too! I don't know where they came from, but they decided to crawl out of the dog food bowl and all over me and unfortunately, ran up my pant legs into areas I will not discuss. Let's just say that I did not know I could dance with such fervor and energy, but the ants were shaken off and removed, so all is well for now!!
I believe a fidgety child is said to have "ants in the pants". I now know exactly what that is!
Ants. Why did God allow ants into the house. I can cope with them in the garden!! Still ant dancing must be good exercise. Thank you. Made me giggle. .
Well, the ant problem has abated for now. But lately, a group of bats has decided to take up residence on my propery. When I take my doggy out for quick walks at night, the bats let me know they are there by swooping past me and making their menacing "squeak sounds"!! Hopefully I don't get bitten and turn into "Count Gnome-U-La"! It's always something with critters when you live in the middle of the woods!😆
I got told by an aunt when I was small that bats would fly into my very curly hair and get tangled up. So they too weren’t my friends until I grew up enough to realise they are actually amazing! (Just not too close up. ).
Which biblical exceptions come to mind? I can't think of a person in the Bible who didn't suffer on this earth. Using a very famous example, Job was a righteous man of God who lost everything short of his life when Satan targeted him. Through it all, Job didn't know the outcome and yet did not renounce God. I like this 30-minute sermon on Job 1:8-22 from Timothy Keller: youtube.com/watch?v=XCzd0qF...
Everyone wonders about the why of suffering, but I think that's the wrong question. How about why not me? I didn't do anything to deserve this suffering (God didn't "make me sick"), but I also didn't do anything to deserve Christ's sacrificial love. His loveliness makes me lovely; His love makes me lovable; His strength is made perfect in my weakness (2 Corinthians 12:8-10).
"For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed in us" (Romans 8:18). I would extend your metaphor to include suffering as an anesthetic. Not in some masochistic sense, but in the process of sanctification. I think and hope I have become a better person because of E. I have definitely become more reliant on God and more engaged in reading the Bible and praying.
I saw fire ants on my walk today and thought of you!
I apologize for being so late in replying! As I said in another post, my world has suddenly exploded with all sorts of activites and somehow, I am able to keep up with them. Of course, the obligatory naps on the recliner are still necessary, but I am managing the fatigue a bit better and better.
I have not yet watched that sermon video but with any luck I will get time to view it. In 2020 I would have had plenty of time, since I had nothing to do but look out of the window and wonder why I survived at all. I sort of laugh at myself and the old saying "be careful of what you wish for" is becoming a reality. The days are now flying by and I usually end up with plenty of things left to do, instead of feeling like the "last man on earth", with nothing to do at all, at least what I was able to do.
But during my time of being able to do almost nothing, I jumped into all sorts of research, and some of it was spent reading the very fascinating writings of the Jewish faith. They have a treasure trove of commentary-type writings, and others that are companion writings to the Talmud (Torah), which make up our Old Testament.
As you might know, their calendar says the year is currently 5783, so they've had quite a lot of time to work on their writings and commentaries!
There are some biblical exceptions to the fact that death is a certainty. In our Old Testament, you can read about Elijah the Prophet, and Enoch who went to Heaven without dying.
According to the Jewish Midrash, nine people went to heaven (also referred to as the Garden of Eden and Paradise) alive.
Elijah the Prophet "went up by a whirlwind into heaven" (Kings II Chapter 2, Verse 11)
Serach, the daughter of Asher - one of the sons of Jacob (Midrash Yalkut Shimoni (Yechezkel 367))
Enoch went to heaven alive (Genesis 5:22-24)
the Messiah
Eliezer, the servant of Abraham
Hiram, king of Tyre
Ebed Melech, the Ethiopian
Jaabez, the son of Rabbi Yehudah ha-Nagid
Bitiah the daughter of Pharaoh
Serah bat Asher
The previous info was cut/pasted from the "Paulsquiz" website, since I cannot type correcty with the necessary accuracy!! In any case, you might want to pick a name and do some research of your own, as you are able to. To me, it is thoroughly fascinating and I suspect a highly intelligent person like yourself, will find it to be so, as well!!
Hoping that things in are improving in your world, and don't forget, you can always PM me if you want to "chew the fat" so to speak! 😆
Thanks, OG! I completely understand what you mean about feeling like you have nothing to do (or, rather, can do nothing) when fatigued, but then feeling overwhelmed with tasks when you do have some energy. I never finish what I would like to do, but I'm learning to just accept that and let things go.
Oh, thank you for the clarification! I was thinking you were referring to certain figures who didn't suffer on earth. Yes, I knew Elijah and Enoch (the second Enoch) were OT figures who did not die in the usual sense but were rather "taken" from the earth by God, but I didn't know about the others from the Midrash. I don't know much about Enoch's suffering on earth, but I do know Elijah had a rough time of it (e.g., 1 Kings 19). So, yes, they both escaped death, but they still suffered in life. Now I just reread your original comment, and you were definitely only talking about death, so that's my bad haha. Thanks for clarifying so patiently!
I love that you and Kitnkaboodle are doing so much interesting stuff here. I’m really impressed. Seriously. My brain now heads towards managing a journal and whodunnits. But I’m really enjoying these posts.
That was an eerily prophetic journal entry! Like you and Old Gnome, my faith (previously a bit wobbly!) has developed and grown into a deeper relationship with God. A blessing I had not expected but which has definitely been a case of holding my hand through the worst of the times and giving me unexpected joy as well. I’ve not written much about my eye because I know you have more to overcome by far than I do. But 12 procedures and 5 operations 2 after an emergency overnight stay has been the worst after effect. After one successful op failed because the eye was so damaged it (well I won’t describe it) I nearly gave up. But God was there. Two ops later, I’m nearly out of the woods, and still have 40% sight and am so grateful that E gave me the faith and strength to come through.
That’s it. Like Old Gnome I shall leave on a lighter note. Yesterday my husband and I sat watching the most awe inspiring thunderstorm roll out over the sea. Then blue sky came! Great metaphor I think.
That is so wonderful your faith has grown, Wygella ! Honey really does come from rocks sometimes (Psalm 81, specifically verse 16, but also idea in Judges 14:14, Psalm 19:10 and 119:103), meaning good things can come from hard places like pain and suffering.
Why do you think I have more to overcome than you do? I care about hearing your eye saga, and I understand a bit of what's it like to not see properly. I had very blurry vision for months during and after E (not correctable with prescription at the time but has since stabilized, thankfully). I'm so happy to hear you've regained some vision in that eye and have been able to recover mostly from the procedures!
Do you have any pictures of the thunderstorm or at least the shoreline? I'm landlocked and housebound, so I like to look at scenic pictures. LiLuMi shared some beautiful pictures at sea with me!
Thank you for this. Because I know I’ve been blessed in recovering so much, I try and be positive but the eye ops did get me down. I know also that I’m blessed that I learnt to walk properly again, my memory, whilst still having blanks isn’t bad, I can drive although not long distances etc. I know that you haven’t been able to do these things, but you are really brave and positive too. So glad your eyes recovered. That’s a real blessing
I do have some pics. I’ll have to work out how to send them to you. 😊.
There's no need to minimize how much of a struggle your eyes have been for you. My problems with the things you listed (except that my memory is fairly decent now!) don't overshadow your eye problems. I'm glad we can share our problems and burdens with others who understand.
I'm excited to see the photos! Maybe it would work to DM them. If not, maybe email, but no worries if it's too much of a pain.
I absolutely agree. This site has been such a relief finding out how other people cope. And sharing problems. Thank you for this, because the eye problem and losing 60% sight in one eye has actually been a struggle. Nearly there now. I hope!
Hi Kitnkaboodle, I absolutely love reading your posts. They are always thought-provoking and insightful. Thank you for sharing. Your writing style echoes the intellect of a PH.D. student. Perhaps, one day you will return to that program. Never ever say never. Always wishing you well. God Bless
Good to hear from you! Thanks for the sweet words, but I'm definitely not going back to school. Even if I could, I wouldn't. It's just not important to me after all this time. There are things that are still important to me (marriage and children, if even possible), but it's hard to keep those dreams alive, not gonna lie.
I guess we all have a different path to what is left of ourselves. We have to learn to live again, the medics don't know who we were before. We have lost a lot of our past and our old ways and they need to be resurrected, relearned and recognised.
With my invalid memory each new day seems a wonder to behold. But things that I used to not notice now scare me. I daren't go into town - it will all have changed. I try coffee, tea, beer and they all taste of nothing. I try a cigarette - I can't taste it - wine has a nice effect but headaches follow.
What are the steps to follow when shaving? Have I tied my shoelaces properly - will they come undone?
Where is my Enc lanyard?
Where is my bus pass?
What happened yesterday - did my sister visit - or is that tomorrow?
Can I read a book? I can't watch TV - it's horrible. I watch the internet of US traffic stops, nice and short with a happy ending - usually DUIs.
Can take 6+ years to get back to normal/ish, so they say, maybe.
We went on a walk yesterday to Buckden Pike, North Yorkshire and lost the path - ended up following a sheep track along a precipice above sheer drops down to waterfalls, raging torrents and scree slopes. Sometimes on all fours clutching clumps of grass. Just got back to the car before dark.
Very enjoyable, I was not afraid but my wife suffers from vertigo and nearly couldn't go back or forward. I coaxed her along - "Don't look down, look at the path, watch your feet, look to the grass handholds." She made it and now feels great. She does training now at the local gym and is doing well - lots of new stamina and strength.
Took me a few days rest to recover and resting in bed is very nice. I'm 73 and after a lifetime of hard work it's lovely. I'll take some pain relief and get up, get dressed and get busy with stuff I have forgotten how to do. What a farce, ha ha.
Tired now, best wishes to all - keep on doing what you did before.
I had encephalitis the day after my first birthday.
The medics had no idea I may have had a brain injury? No mention of it all and luckily I never had any of your problems Gandalf2 .
However, doing something you enjoy doing if you can and make the best of what you have everyone. It doesn't matter how long it takes to do something or how much 'me time' you need to have either.
What lovely writing! So poetic. I always enjoy hearing about your adventures with your wife. You both sound so lively and fun. I don't have memory problems to the same degree, but I understand how frustrating that would be. I do wonder--how many of us on the site do you remember regularly? Like do you remember things OldGnome or Wygella have said previously? For example, your phrase ("we have to learn to live again") will stay with me. Either way, I'm glad we can all chat.
Sometimes I feel guilty not being able to say yes I feel like that too. ☹️
But, because I had encephalitis the day after my first birthday, I really only know what it's like to live with the after effects for my full life so I have never really give any of this a second thought to be honest.
I try to make the most of what I have got rather than what might I had been like if I never had encephalitis in the first place?
We ALL CAN make the most of what we have got! Try our best to think positively and I like the song Always Look On The Bright Side Of Life!! Which describes my outlook on "life after encephalitis". Listen to some relaxing music or something on a daily basis that can cheer you up.
I haven't lost anything, sorry about that kit. Because in your words the animal began the day after my first birthday.
Thanks, Paula! There is no reason for you to feel guilty. We all have different encephalitis stories. That's so great you try to make the best of it! You're an inspiration to all of us.
And to clarify, that philosophical stuff wasn't about the present day or anyone's actual encephalitis experience. I wrote that a few months before getting sick when wondering about general pain and suffering for humans. It's not about encephalitis specifically, and it's definitely not meant to call anyone an "animal." I just meant to ask how much could a person lose before that person isn't the same anymore. It was a general question and not referring to anyone's life or encephalitis story. Hope that clears it up!
Could you or anybody on here really imagine me writing before I got sick? I wasn't even informed about it till I was 10 by my Mum she told me a few things about how I was and symptoms I had just before I became ill. At the time I was like was she joking or something because based on reading that paragraph she showed me in the book she had only had one paragraph about Encephalitis in it and it was very intimidating, and stuff that just wasn't applicable to me.
In fact, in the last eleven years, I have been diagnosed with treatment resistant OCD and was offered Deep Brain Stimulation for OCD, that was 2013 but based on two facts I'd had encephalitis which it can cause, and being epileptic though I stopped having seizures, I was still taking medication and I will do long term meant I wasn't a suitable candidate and it went from there how I learnt more from my dad since then. He was interested in more information on encephalitis, so 4 & a half years ago he asked me to Google the Encephalitis Society helpline number and give it to him which I did. He then spoken to them, and shortly afterwards my dad said they wanted to ring me so they did and it stemmed from there. Then 3 and a half years ago next month I became a volunteer for them.
I'm not sure what philosophical means.
I mistakenly thought you were referring to 'encephalitis' as an "animal", not a person. Ok it was a mistake. Sometimes I get mixed up with what different words/phrases mean and I still get them wrong probably due to my developmental delay so I'm learning these things a lot later than I should have done.
Hmm? before I wasn't the same any more I don't think that's applicable to me. I have always been the same person as far as I'm aware, but I can see where you are coming from.
You've been through so much! A lifelong journey. You're so strong, and it's kind of you to volunteer with EncephalitisSupport . I definitely don't have the energy for that sort of thing. It's nice of you to help as you're able!
It's okay you didn't understand what I meant by "animal." I could have written about it more clearly. But, honestly, you are right in some way because encephalitis destroys so much of a person that it does seem like a monster!
"Philosophical" just means "thinking about life." For me, I was an adult when I got sick, so I was aware I was sick. When my memory started up again, I was told I almost died (I don't remember that part), so I think about death a lot. So I guess "philosophical" can also mean "thinking about death"
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