Link to my original AMA post from four years ago:

Quick Summary: In 2009 I had a case of Gastro which resulted in a 1 in 1,000,000 chance auto-immune disease called Transverse Myelitis. I was in a wheelchair for a month or so, and paralyzed in fingers, toes (edit: and legs and arms too... to clarify my Myelitis affected C5 and T2, amongst a couple of others I can't remember) and severe weakness in my entire body. Luckily they caught it early and treated it with heavy corticosteroids, and my total recovery was around 1 year (2 months to learn to walk, 6 months to run, 1 year to be 100%).

My 8 year follow up: Where do I even begin?

Let's start with my health - for the first four years after the myelitis, I was getting sick very frequently due to my body's weakened immune system. This is happening less and less frequently recently, however, I still get weird illnesses (I was diagnosed with Rotavirus early this year even though I hadn't left Australia for 12 months).

Next, my muscles and strength: My strength is good, my weight is steady at around 60kg/133lbs (i am only 168cm or 5'6"). I am still going to the gym 3-4 times a week and swimming twice a week. However, I had to stop heavy lifting due to chronic back and shoulder pain which has not left me alone for the last four years. It is probably the most annoying thing to linger after my illness, and will likely be with me for the rest of my life - but a small price to pay to be alive I guess!

My Career/Work: One thing I didn't touch on last time is the huge effect this illness had on what I wanted to do in life. I was an elite sprinter (3rd in my state) and very good soccer player, so I always thought sport would be my career pathway. However, after the illness I had to re-think everything. I really didn't know what I wanted to do and suffered heaps of anxiety. Eventually, I studied Psychology and did a research project on consciousness and neuroscience. Regardless, even after graduating (last year) I still felt lost.

Small Self-Plug I quickly realised how many people were struggling with the same issue of 'what should I do with my life' - even without a life threatening illness - and decided to create a free website for people to help them figure out their career pathways. It is a side project with no ads & zero fees.

You can view the site here if you like:

My Proof:

I live in Australia so I will be on for the next couple of hours to answer your questions, otherwise I will be on again in ~10 hours to answer whatever I missed.

Thank you!

Edit: I just realised i'm an idiot and 2009 was 9 years ago, not 8 - sorry, I went full derp mode

Edit 2: Thanks so much for some incredible questions - you guys are awesome. I'm going to bed now, it's 1.30am here. I will try to answer any further questions that arise overnight in the morning xox. Feel free to PM me as well with questions.

Edit 3: Holy shit, i just woke up and RIP mailbox. I will answer all your questions as best as I can over this morning. thanks for this amazing response, i'm stunned. and thanks for the gold!

Edit 4: I just want to be clear that I don't mean to take away from people who suffer permanent paralysis. I apologise if I have hurt or misrepresented anything or anyone with any of my phrasing or language. We all need to be aware of the language we use surrounding disability :)

Comments: 291 • Responses: 77  • Date: 

sadcthulu297 karma

Especially as someone who loved to run, how did it feel to get the diagnosis? Did you know that you would be able to walk again? How did you emotionally get through the situation?

DeadlyCords332 karma

The diagnosis was weird - I didn't really believe it, nor understand it for a long time. It felt surreal - I honestly thought I would be in hospital for a week, get a bunch of tests (including a lumbar puncture which was not fun), and then be fine to go home and start running again.

I answered your second question previously:

I genuinely didn't realize the severity of my situation until I started physiotherapy to walk again... While I was in hospital I didn't understand that the paralysis could have been permanent.

As for your third question:

I can honestly say however, that this experience has scarred me. I have severe travel anxiety and everytime I get sick i'm really scared it's coming back - even though there's no way it is.

Laney2013 karma

I almost had a lumbar puncture once. Got all the way to them sitting me up in position for it before they had to stop because my heart rate and blood pressure dropped dramatically. I was terrified, but I'm pretty sure it was the change in position that caused so much trouble. Glad to hear I was right to be scared.

Turned out I had the flu, so the puncture was unnecessary. My only symptoms were racing heart and exhaustion, so they were understandably confused.

Im_your_real_dad3 karma

I'd never heard it called a lumbar puncture before. I've always heard it called a spinal tap.

DeadlyCords2 karma

oh yeah! that makes sense. Australian english and American english have some weird differences

Erickjmz15 karma

This one hits home, my uncle was a 50 year old, super athletic, dude used to come back from work and run 10km in the middle of the week. Now he is 54 years old and he doesn't have muscles anymore, he developed Polymyositis, as a family we have paid all treatments that we can afford, and even got a debt to get him one, but nothing works and he is now in the stage where breathing has become a difficult task, barely even talks now, shit's rough.

DeadlyCords7 karma

wow that's really sad - you're amazing for doing everything to support him. I'm sure he really appreciates it. Wish you and him all the best!

Majrdestroy7 karma

Not really nearly as bad but I blew out both my knees in high school at 16. Was told I would never run again before they even found out what was truly wrong. Turns out scar tissue had filled the space under my kneecap and had grown like a castle of crystals under my kneecap, grinding it down to a flat river rock like piece of bone. On the bottom.

5 years later I in fact do not run still as the impact hurts too bad. I do bike and hike but even that is limited by my knees. After playing soccer since I was 4 and on the XC team in high school, it was super hard to even find another group of friends to interact with. Worst part is living with it. Constant pain, activities limited by just pain that you can't solve. That sucks.

Edit: I should have replied to the OP's comment on this. Also, I feel like you are a super strong person OP if you read this. It is incredibly hard to pause your life for one year, have things stripped away you are good at, and have to start over in a weakened state. I feel that too well.

DeadlyCords6 karma

Thanks for sharing your story. That's a really interesting and unique diagnosis.

Constant pain is absolutely the worst, but I think it brings out a certain resilience and persistence that others can't even imagine.

I'm glad you've found some activities you can do. I hope that it gets better as time progresses! stick in there <3

King-Boss-Bob166 karma

Aside from all of the health stuff that you mentioned what was the worst part about being paralysed?

DeadlyCords392 karma

People didn't take it seriously. I remember some of my friends joking around about me pretending to be in a wheelchair. They weren't my friends for much longer tbh haha.

The hardest part of it all was the lack of self-sufficiency. I couldn't go to the bathroom alone, I couldn't shower or bathe alone. I was a 17 year old kid, it was so embarrassing to ask people to help me with such basic things I could do myself.

Both those were really hard, but i was lucky that I didn't have to get used to it coz I got better... I can't imagine what people who are paralysed forever go through

neverthemood92 karma

I can confirm : people don’t take this seriously

I’ve been paralysed for 2 years. It took me a lot of recovery and I endured a lot of pain.

Now people asked me why didn’t I work for 2 years and have no recent experience?

I told them I was paralysed

‘ oh ok. ‘

Not to mention rhe mental struggle, the depression and that feeling of ‘pitty’ close people or family throw at you.

It’s devastating..

imjustjurking20 karma

I've not been paralyzed but I've been recovering from an illness that left me mostly bed bound and now I'm only mostly housebound for the last couple years. I'm really worried about returning to work and answering these kinds of questions!

Did you find people were mostly nice or was it kind of a mixed reaction?

prematurely_bald25 karma

Warning: long response ahead.

Went through this exact experience several years ago. From months in hospital, then bed, then home shut-in, over several years.

In addition to dealing with a debilitating illness, I felt as though my personality was changing. How and why could a long-term illness affect that? I was no longer the confident, outgoing, fun athletic guy people remembered. I was angry, sad, or just empty inside much of the time. Intense sensations of hopelessness and despair came in waves. They were very physical as well as mental & emotional sensations.

When I was physically strong enough to reintegrate into society, I found it nearly as difficult and challenging as dealing with the initial disease. Family and friends were very supportive, but had no context for what I had been through. I found it difficult to relate to friends, and they to me.

I began to dread social and professional interaction, feeling I had somehow lost the ability to navigate—much less thrive in—society. As an extroverted, life-of-the-party type, I had no idea this was something that could happen. (I really have no idea what the research says on this, all I know is it happened to me.)

Thankfully, and through considerable effort and patience, my discomfort with personal interaction has faded over time. A change of scenery and career has been immensely helpful as well.

Today, I am healthy (mostly), happily married, gainfully employed, father to 4 energetic boys, and feel I have everything I ever wanted from life. I believe I’ve emerged from this ordeal as a better, more empathetic and kinder person. It is kindness, above all, that I wish to pass on to my young boys.

That was kind of a long-winded way of saying that if your experience is similar to mine, reassimilation into normal life after a protracted illness will come with many challenges, but it’s nothing you can’t handle! Best of luck luck and please feel free to AMA.

DeadlyCords8 karma

your post gave me chills. I'm so glad it all turned out well for you in the end. I still don't have my own family or everything I want from life - but i'm trying to help others get that before I get round to it myself.

anyway you're a superstar and should do your own AMA :)

prematurely_bald5 karma

You are too kind! I will always feel a connection with those who have dealt with long term debilitating illness or injury.

I was was glad to comment on the part of my ordeal that others seemed to understand or recognize the least. Yet looking back at my post above, long as it was, I somehow failed to mention one of the main thoughts that prompted my response in the first place:

The greatest mental/emotional/spiritual healing for me occurred when I stopped worrying about what was wrong with me and starting focusing on how I could help others. That shift from inward to outward focus is what finally got me over the hump, and it has stayed with me.

Rather than fretting over what I had lost, I became concerned for what I had to give. I made it my mission to try to improve the well-being of anyone around me. As I became more invested in their struggles and less in my own, I unexpectedly found myself on the path to a true holistic recovery.

I believe you’re on the right path, brother. The world desperately needs people like you. Stay strong!

DeadlyCords3 karma

The greatest mental/emotional/spiritual healing for me occurred when I stopped worrying about what was wrong with me and starting focusing on how I could help others. That shift from inward to outward focus is what finally got me over the hump, and it has stayed with me.

I absolutely love this and can strongly relate. you're awesome for coming to that understanding and pushing forward to help others.

And i'm so happy it all came back to help you as well in the end. Hopefully I can do the same!

DeadlyCords2 karma

ah that sucks so much :( we really need a shift in attitudes towards illness and disability. A lot of it comes from a lack of education on things such as language. I know that even I still use words that might be harmful to individuals with disabilities.

wish you all the best in the future!

King-Boss-Bob43 karma

That sucks

Glad to see you are doing better now though :)

DeadlyCords27 karma

thanks so much :) really appreciate it

muppetress16 karma

Bit of a weird question but who was your caretaker? Did you have any privacy issues or feel nervous with them seeing you naked all the time showering, changing, washroom etc.

DeadlyCords45 karma

My main caretakers in the hospital were nurses. Then when I was discharged I had nurses come to my house and change my IV every day and help me with all that stuff.

To be honest, I didn't really shower for the first week as it was too hard. But eventually I could crawl to the shower and toilet, and before I knew it I was walking... It's a bit of a blur tbh.

So yeah - mainly nurses and my mum for a bit. It was extremely embarrassing, especially at 17 years old. I was extremely self-conscious, but when you're sick you look past those things and focus on getting better.

PmMeWifeNudesUCuck5 karma

Do you feel there's been any silver lining to all this? Obviously this is awful but adversity has a way of giving perspective on things. I'm curious if you feel you're better for it in any ways. Sorry for the late response.

DeadlyCords17 karma

I am 100% a better person. I used to be selfish and I cringe at how /r/iamverysmart I was.

This illness changed it all. I realised i'm not special or immune from death and illness just because my mum told me I was smart. I started working hard for things... I'm yet to really see that hard work pay off financially, but it has paid off 100 times over in making me a better person

Bangs4210 karma

I can relate to the lack of self-sufficiency. I just had my appendix removed and my abs are useless for the next week or so. I can use the bathroom by myself (thank god), but I cannot get into/out of chairs and the bed by myself, or really even adjust my position once I'm in the chair/bed. Add to that, I have a very physical job, and even once I'm allowed to return to work I will still be on light duty, which is barely a step above useless. Good on you for getting through it. I've only got to put up with it for about a week. I can't imagine having to go through it for even longer.

DeadlyCords12 karma

we all go through these experiences in some shape or form. it doesn't matter how short it is, or how much worse others might have it. what matters is what you take out of it :) wish you a quick and easy recovery!

Stackman322 karma

The sexual frustration must have been incredible. Any sympathetic friends or family help you out with an occasional randy handy?

DeadlyCords6 karma

hahaha oh god don't even start. i don't want to be the next two broken arms guy.

but nah i was fine - didn't really concentrate on that, i was so busy with other things.

Coulson199096 karma

Were you disappointed they didn’t offer you the million dollar man treatment and give you bionic limbs?

DeadlyCords140 karma

I know you're joking, but I actually wish I had bionic shoulders right now - maybe it would get rid of the pain haha

Bionic Limbs would be pretty cool, but if the technology existed I would hope they would give them to someone who needed them more than I did :)

thrattatarsha12 karma

Your experience as someone who has been paralyzed could be invaluable for research purposes in this field. Have you considered taking a look down that road?

DeadlyCords7 karma

No one has really approached me. I have years and years of follow up imaging and tests, so if anyone wants that for research feel free to contact me !

Leena526 karma

Is the pain a result of the damage to the nerves? Also is there any possible treatment to resolve this or are you in analgesic medication?

Having worked with young people that are paralyzed I do know how incredibly difficult the psychological and physical issues are. I’m glad to hear you have overcome so much. It’s impressive. I hope less pain for you.

DeadlyCords5 karma

No one knows what the pain is from. It might be from having to relearn to walk and shifting my posture. It might be from lifting 120kg when I was only 63kg, four years after being paralyzed.

Analgesic medicine is the last thing I will try. I still have hope in PT and Osteo.

Leena522 karma

Good for you! Weight lifting twice your weight could definitely result in some of that. I wasn’t suggesting opioids, but ibuprofen or naproxen sodium, but they are hard on the stomach and do thin blood.

I hope you can find ways to relieve the pain. I truly wish you continued improvement. You are a strong young man.

DeadlyCords2 karma

thank you very much :) I am using voltaren rapid from time to time, which eases the edge off the pain. i'll look into naproxen sodium.

Cereborn85 karma

What are we, in general as a society, not doing for disabled people that you think we should be doing?

DeadlyCords126 karma

I love this question. I don't think I'm qualified to answer this as I don't consider myself disabled. However, from my brief experience of paralysis, I can never forget how differently I was treated. Just the sight of a wheelchair would make people speak to me like a child, and almost be scared to talk to me for fear of saying the wrong things.

There were also those who thought I was lying and made jokes about it behind my back, which kind of sucked. I did enjoy when my close friends made jokes to my face - it made things seem lighter and less serious.

I think society is getting much better at treating disability with the respect and seriousness it deserves, but as individuals (and I sometimes still find myself doing this) we need to treat disabled people as people first, and disability last.

yaypal39 karma

I have a feeling with the wheelchair issue that you being a lot lower down physically is part of it. When someone is significantly shorter (like, waist height) than us there's this tiny flick in the brain that they must be not full grown, or a child, and even people who normally aren't twats might double take once in a while. Not excusing that behaviour though especially the ones who back away immediately just because the chair is there.

DeadlyCords27 karma

that's a really interesting insight. I'm actually quite short in general so I completely agree with this sentiment. Maybe being aware of this primal bias can be the first step towards changing the attitude? I dno

whatislife227321 karma

Please don't take my question the wrong way, how do I talk to someone in a wheelchair properly? I kinda just stand normal and do it as I would a normal person but I always wonder about the height difference. If theres a bench near us I'll sit down and that solves my anxiety about not wanting to feel bad about having to look down.

DeadlyCords42 karma

you've answered your own question!

it's really hard to not be self-conscious about how you talk to them when they're so much lower down.

Just maintain eye-contact, no matter how awkward it might feel. The bench is a really good idea - it allows you to avoid the height difference without squatting down and treating them like a child .

For other people - NEVER USE BABY VOICE or anything like that. Jesus that aggravated me so much.

ColdDesert7716 karma

Permanently disabled person here. I can answer.

  1. Stop with the pity. Life is hard enough for everyone as it is. We all have challenges, just that folks with disabilities experience those this more acutely and outwardly. When you express pity, it makes us (or at least me and other PWD to whom I've spoken) feel uncomfortable and alien.

  2. Most of us want to work. Many of us can't, and so we resort to disability payments to live independently, which is really vital to us feeling like full adults. Getting guilt for that (from individuals and the government) is hard.

  3. If you see us in public, ask us if we want help. If we say no, believe us. Do not touch someone's mobility equipment (e.g., wheelchair) without permission. It's like touching a person's body without consent. If you tell someone in a wheelchair that you were also in a wheelchair for a short time after an accident or operation, so you know how it feels, we'll probably be thinking, "no, you don't."

  4. Joking about someone's wheelchair having racing stripes or a backup sound, or whether we've gotten a ticket for speeding, isn't actually funny. You might be saying those things to have a laugh, but consider that you may be doing so in order to lessen your own discomfort to an exposure to disability

DeadlyCords5 karma

thank you for adding this - i hope as many people as possible can see it.

ErrrorWayz59 karma

Where you at any point tempted to try to run before you could walk the second time?

DeadlyCords96 karma

hahah yeah i was pretty impatient. I was rehabilitated at a local hospital with the help of a physiotherapist and an occupational therapist. After the third session of those parallel bars where you support yourself with your hands to walk, I decided I was gonna try do it as fast as I could and fell over.

There were other times later in my recovery I would try to sprint when I could barely jog. I guess my dedication and impatience helped in the end, but my Physiotherapist was very annoyed at me a lot of the time.

Heylayla4 karma

Wow that reminds me of the time I was dealing with something similar. We are really different though, you were trying to be better before time and I, on the other hand, was terrified of simply walking and falling hahaha you're a strong and brave one ;)

DeadlyCords3 karma

I think we all have our own timeline with these things. While I was so quick to try and recover - I now suffer from extreme anxiety surrounding traveling and separation - so these things affect us in different ways.

Hope you're ok now!

craicbandit2 karma

This is such a crazy story, it's so interesting / sad / happy to read.

How would you describe the feeling of being able to do something so naturally, like walking, and then suddenly not able to? Like when you were re-learning to walk did you know what you had to do but just couldn't? Or is there more to it?

I cant imagine the difficulties you've went through. There have been many times in my life that I've thought about what I would do if I lost my sight (or something else) and how I would cope. I honestly dont think I could cope if I went blind, and I almost think it would be worse to have sight and lose it than just being born blind (although that probably isnt true). But it would definitely affect me mentally.

So much respect for you, man! I can't imagine the feelings when you started to get your movement back!

DeadlyCords3 karma

Believe it or not, you're the first person to ask this...

It was a bit of a blur. My attitude at the time definitely shapes my memories now. I remember the frustration and hunger to get back into it while I was re-learning.

The whole time I was paralyzed, my brain knew exactly what it wanted my limbs to do, it just couldn't get the message across physically (because the Myelin on the nerves was damaged). So yeah really strange feeling.

The feeling of walking and then suddenly not being able to is the scariest thing i have ever experienced and I do not wish it on my worst enemy. Literally one moment I was walking around fine. Then I lay on the couch, tried to get up and couldn't stand or walk, had to drag myself back up by my hands as no one was aroudn to help me until half an hour later.

maegomaego29 karma

When you were struggling the most with your illness and paralysis, what did you find comfort and solace in the most?

DeadlyCords51 karma

My mum was amazing. She's a doctor and she did not stop hassling specialists and other doctors until we found a diagnosis. She really helped me feel positive and was part of the reason I didn't really understand how sick I actually was.

I listened to a lot of music. My good friends gave me DVDs of Mad Men to watch. But no one wanted to visit coz they weren't sure if they would get me sick, or get sick themselves. It was kind of lonely until I was out and about on the wheelchair.

Had to learn how to find comfort and solace in my self and my hobbies :)

EAJ979 karma

What’s type of doctor is your mom?

DeadlyCords6 karma

GP. also doctor mom

Skrap9324 karma

Has looking like Aaron Paul helped your love life? Also congratulations I'm happy for you.

DeadlyCords30 karma

that's the fist time anyone has told me that - major confidence boost haha.

My love life was really good until a couple of years ago. I'm not too worried about dry patches though, there's more important things to focus on in life for me right now :)

FiendKing0421 karma

So, no one's going to mention that the CD says Mr. Brain Spine?

DeadlyCords33 karma

Hahaha it must be a misprint of MRI.

However, I do know an Ear Nose and Throat doctor called Dr. Nek, so maybe a Mr Brain Spine is out there somewhere

That_one_Pizza17 karma

Pineapple on pizza, yes or no?

DeadlyCords24 karma

That_one_Pizza11 karma

I like you

DeadlyCords14 karma

i like me too! And you

ifasongcouldgetmeyou17 karma

What did you learn from it?

DeadlyCords53 karma

I learned not to take things for granted. As cliche as it sounds - I don't give a shit about small things anymore. Anytime there's 'drama' with friends, or whatever, I step back. In the grand scheme of things, those small spats and bullshit doesn't matter.

I learned that no one knows what they want to do, and I want to solve that issue.

Most importantly, I realised I was going to die one day, and I learned to face it and live life in spite of that fact - which I was hiding from before.

tish197915 karma

Wow you are amazing! What advice would you give to others struggling to come to terms with a terrible seemingly hopeless diagnosis? Sending lots of love from Zimbabwe xxx

DeadlyCords14 karma

I think the biggest advice I could give people is to just enjoy every moment. Even suffering has it's own poetic beauty. Without this horrible ordeal I never would have developed the outlook toward life I have now...

I know it's hard to do when you aren't sure if you will survive a disease, but you have the disease regardless, may as well do everything in your power to enjoy your time

sending love back from Australia!

lostmyhusbandtoatank5 karma

Wouldn't say it's a hopeless diagnosis! Source: have also had transverse myelitis. Stats show approximately a third of people make a complete recovery, a third get left with a 'small' amount of deficit and a third get left with significant deficit or lack of recovery.

DeadlyCords4 karma

I did not know those stats thanks for sharing, and I hope you're in the first third of people too :)

chickaboomba7 karma

What were things that people said or did afterward that you appreciated? What did they think was helpful but was actually annoying? By the way, a relative had transverse myelitis and was paralyzed from the waist down. It is a brutal diagnosis. Your recovery is a blend of miracle and grit. Good for you for fighting your way back.

DeadlyCords9 karma

I'm so sorry to hear about your relative. I have heard stories like this since, and it makes me so appreciative of how lucky I was to make a full recovery.

I really appreciated people not pestering me about it. It's not something I avoid, but I prefer to talk about it in my own way.

I remember my Principle came up to me after I received my final mark for high school (we call it ATAR, you call it SATs in USA). I did really well, but not as well as the school was hoping. The principle gave me a hug and she said "we're so proud of how well you did for our school after that shocking illness". I cried after that, it was really nice to be appreciated like that :)

As for annoying - people asking if I'm ok, if I need a break, if I need to sit down... very annoying, but it came from a good place.

MartinRouter7 karma

Hello, hope you're doing okay!

Does the illness affect your sex life in anyway?

During the paralysis were you worried about your future love life?

DeadlyCords7 karma

Oh interesting question. I once had severe severe back and groin pain after sex to the point where I ran out on the girl I was seeing and went to hospital thinking I had testicular torsion. No one knows what the pain actually was, but needless to say that girl stopped messaging me to come over.

I was the least worried about my love life as many girls really liked my story and wanted to try 'fix' me haha

Mahpman6 karma

Who do you praise the most for helping you through the recovery?

DeadlyCords10 karma

As I mentioned above, my mum was pretty much the reason I recovered in the first place. She, above everyone else, really stepped up and took care of me. I can't even count the amount of time she spent researching, hassling doctors and making sure I was feeling ok.

TheOtherCali6 karma

A few months ago my mom (53) was in a traumatic car accident and she is currently re-learning to walk but struggles daily with fear of never being “the same” as before the accident, depression of “why did this happen to me”, and guilty for all that I’ve given up in my life to be her caretaker. Any advice for what to say or do to help her through this?

DeadlyCords5 karma

/u/lostmyhusbandtoatank's response is amazing, all I can add to it, /u/TheOtherCali, is that you also need to focus on your own life whenever you can (without strongly affecting her condition). Even if it means just hanging out with some friends for a drink for a night a week, or playing some video games while your mum is around.

You're an amazing person for helping your mom, but you don't want your life to be just about her and I guarantee she wouldn't want it too.

borkamork3 karma

What's your favorite Foo Fighters song?

DeadlyCords8 karma

learn to fly. hands down. nothing comes close. maybe the pretender does...

gr8baddy3 karma

Hey buddy, huge respect for you.

Have you heard about Indian hockey player Sandeep Singh? (

Again, love from India.

DeadlyCords2 karma

i had not heard of him but what an amazing story thanks for sharing!

AyyMDRags3 karma

Usually you don’t notice how much you use something until you lose function of it, what was the first time you realized just how much you use your legs?

DeadlyCords2 karma

when i fell over from getting up from the couch and had to drag myself back up by my arms coz my legs didn't work

AyyMDRags2 karma

Damn that must’ve sucked ass

DeadlyCords3 karma

i've never sucked ass, but i'm sure it's exactly what it feels like :p

Riddle_Snowcraft3 karma

So... in what sense did you "learn how to walk again"? Did you forget the original way to walk and regained, or did you have to develop some new internal method of walking?

DeadlyCords2 karma

my brain knew what i needed to do - my legs just wouldn't do it. So i had to retrain the connection between the brain and the legs. But because I was much older than a small child, I was heavier and probably learned to walk again with imperfect form

cheeseman_693 karma

I think my girlfriend might currently have what you had. We’ve been in the ICU for 3 months now. Did any medicine or treatments work to speed up the process of movement? Was it a waiting game? How long did it take for you to get on your feet? Are you 100%? My girlfriend is in the hospital RIGHT NOW with something very similar. No one knows what’s wrong or how she got it. More and more cases are coming up every year and no one knows where it’s coming from. Please tell me everything you know about fixing this. I’d be happy to email or text you if it’s more convenient. Thank you, hope you read this.

DeadlyCords2 karma

RIGHT NOW ask your doctors to give her an MRI of her cervical and thoracic spine (if you can afford it). Tell them you think it might be auto-immune and ask if the myelin is healthy.

If it is, they should suggest something like oxandrolone for treatment, which will make her feel better very quickly.

i'm not a doctor so don't give her the medicine without a diagnosis. I hope you figure it out, it absolutely sucks what's happened to her.

Feel free to PM me and i'll give you my email so you can keep me updated :)

Ch7PrblmSlvr2 karma

Were there any strange symptoms or sensations or feeling like being a mind learning how to interface with a body anew that were fleeting or persistent during or after recovery?

DeadlyCords2 karma

i don't really remember - all I remember is being scared and unsure, but also determined. I remember the huge relief when I could start walking and finally running again. I cried for ages, as though it was all let out at once

MsMazeratti2 karma

I'm here to ask about your new venture. I need some guidance on where to go with my career as a 30 year old with a long term illness. Does your new venture and service apply to people in Australia or is it international?

DeadlyCords3 karma

feel free to email me on [email protected] and i'll do my best to help :)

MultipleLifes2 karma

Did you learn something about people and about yourself while you where paralyzed?

Did that change the prospective about future and time?

DeadlyCords4 karma

i learned to be happy with who i am (although I had many self-image issues later in life for unrelated reasons).

I also learned that most people truly want the best for you - even if they are strangers. Those that don't aren't worth even a second of your time.

LaughingFox22 karma

If you have a relationship, how much strain did your paralysis put on it? Were you still able to have sex? Did your partner have to help you a lot?

DeadlyCords2 karma

I didn't at the time, but met a girl shortly after and my stamina was not good. She was completely inexperienced as well, so we kind of laughed through our struggles together it was hella cute.

KillDevilFalling2 karma

My good friend just got diagnosed with stage 4 cancer... my question is what is the BEST thing I can do for my friend who will likely be in and out of hospital for the foreseeable future???? How can I best support her as she is dealing with her health issues????

DeadlyCords3 karma

i'm not an expert in cancer, but don't be afraid to visit her. Treat her like you normally would, don't look at her differently. If she cries or asks for your help, do whatever you can. she will appreciate it!

wish her all the best

blankton32 karma

What was the most important thing you learned during your studys?

DeadlyCords5 karma

The single most important thing I learned at University was how to learn. It sounds dumb, but all the facts and content I crammed into my brain at university was useless.

Once I got out, I suddenly found that I could apply learning principles and habits almost everywhere in life, which has been tremendously valuable.

sssmay2 karma

Hi! Thanks for doing this AMA. Sorry if this has been asked before but what was did it feel like when you were able to run again for the first time during recovery?

And a 'silly' one if you don't mind, if a movie were to be made on your life who would you want to play you?

DeadlyCords2 karma

i was told above i look like aaron paul so maybe him i guess?

and it was literally the best feeling in the world - the wind in my hair and my feet on the grass. it was amazing.

flxwertxwer2 karma

What can you do now that you’ve relearned and are excited about?

DeadlyCords3 karma

i was a drummer before, and it took a while to get back into it after, but i got into it. I'm really excited about learning guitar now tho - it takes a lot of dexterity and being able to use my fingers like that is so cool.

Little_Flapjacks2 karma

Considering this is an AMA - do you particulary enjoy any games (not specifically videogames) ? 2. And do you like memes?

DeadlyCords3 karma

I love Through the Ages - it's an amazing board game that i'm yet to finish (even after 4 hours gameplay).

I really enjoy Heroes of Might and Magic 3, and the FInal Fantasy X series.

I love memes, especially rare pepes.

SightWithoutEyes2 karma

What would you do if you were suddenly paralyzed again?

DeadlyCords2 karma

great question. i'd continue to live my life as best as possible. i know it would be so much more difficult, but there's so much that can be done online now that as long as I had use of my hands I could pursue my goals.

The hardest part would be how people would treat me and potentially the lack of self-sufficiency (even though many disabled individuals are incredibly self-sufficient) compared to not being disabled.

Legend13CNS2 karma

Were there any early signs of the condition? Is it something that could've been less serious if treated early?

DeadlyCords2 karma

we went to the hospital immediately after the first signs (my left foot dropped low and i couldn't lift it back up towards my shins, and I had a fall and couldn't get up).

luckily we did so because early treatment definitely sped up the recovery dramatically

CaptainJAmazing2 karma

Did you develop an affinity for a certain Foo Fighters song?

DeadlyCords2 karma

you're the second person to ask - maybe i'm missing something? I definitely love learn to fly the most... haha

-Universe-2 karma

Can you talk a bit about the things you did to recover from the temporary paralysis?

DeadlyCords2 karma

I took strong doses of dexamethazone and did occupational therapy and rehabilitative physiotherapy. I slowly regained movement in my fingers, toes and legs, and with that slowly built strength. a process of around 1 year total.

-Universe-2 karma

Hats off to you man!

I am suffering from a fungal and parasite infection because of a weak immune system. It has caused me chronic fatigue, muscle weakness and severe brain fog. I have found a doctor and I will begin the treatment next month.

Stay strong.

DeadlyCords2 karma

wish you all the best - you stay strong too!

T-G1 karma

Are you currently seeing a physical therapist for your back and shoulder issues?

DeadlyCords2 karma

I have seen PTs, Osteopaths, Chiropractors... I have had acupuncture, I have had MRIs, CT scans and EVERYTHING possible tested. Nothing has helped get rid of the pain. On the bright side I'm much stronger and more balanced muscle-wise now :)

lostmyhusbandtoatank1 karma

Question: Do you feel an un-nuanced representation of your paralysis has helped get you more attention, but hurt other people with worse outcomes?

As this is an AMA, please don't take this the wrong way, but I've had transverse myelitis too and it was in my lumbar spine. I have some remaining deficit from it, but while I had to learn to walk again (go parallel bars) I never represented myself as "paralyzed" unless I put "temporarily" in front of it. You had all-over weakness and paralysis only in fingers and toes.

Your summary is just.......I don't know. Maybe I'm cynical but I'm married to someone who had a spinal injury in 2011. I saw what "you will be paralyzed for the rest of your life" and "you will be in a wheelchair for the rest of your life" looks like compared to my own "use for recovery" pathway.

I don't want to disparage what you've been through - I know from my own experienc how scary it is/was, but your language and attitudes actually hurt permanently disabled people. For instance, have you considered how many wheelchair users want people to designate them as wheelchair 'bound' or 'confined'? Almost none. They're a tool - 'wheelchair user' is better.

You say elsewhere you can't imagine what people who are paralyzed forever go through - but apart from sleep paralysis, other forms of paralysis are either specifically designated as temporary or tend to have a duration put on them. You had to learn to walk again because of muscle atrophy, but your story in Mens Health and suchlike presents the headline 'Paralyzed person walks again after rare spinal.....' practice I want to flag up that these articles result in people with permanent paralysis being asked things like:

  • Are you sure you want to walk again?
  • But if he was paralyzed too, then why can't you get better
  • Don't you want to get better like DeadlyCords did?
  • Why are you so fatalistic? (You should never give up)
  • Why have you given up? (You never know what belief could do)

I'm seriously delighted you've had a relatively full recovery. Given your crappy form on your highest lifts from 4 years ago, are you certain your back and shoulder problems aren't partly from weightlifting? I just wanted to flag these things because apart from the language used, something I'm putting down to age and context (you were 17 when it happened, hey!).

I notice the genuine concern you have for people with enduring disabilities, specifically paralysis, so this is why I mentioned it. I hope I come across as trying to help - it's close to 4am in Sydney so I may just be a ball of messy blather!

DeadlyCords8 karma

thanks for pointing out these things. Firstly, it sucks you had to go through TM as well. I'm glad you recovered too!

I never at all intended to take away from the experiences of others. I know people suffer much worse fates than I do, however I do not think that means I can't share my story. My Myelitis affected my Cervical and Thoracic spine, which caused paralysis of my toes and fingers mainly, but also my feet, legs and arms in a lesser manner.

I very much considered myself paralyzed as did the doctors and rehabilitation staff around me. At the time it wasn't temporary, it was very much a 'you might not walk again'. In hindsight it was temporary, but I don't think that detracts from what I went through.

your language and attitudes actually hurt permanently disabled people

As I mentioned, i'm not an expert on disability and I don't consider myself disabled. I am fully aware how powerful language is, and I apologise if it came across as hurting individuals with disabilities. I will definitely try to be more wary of the words I use. But i don't see how my attitude hurts permanently disabled people. My attitude was always positive and focused on moving forward and enjoying my time. I know it's not easy for people who might not be able to see a light at the end of the tunnel, but I also don't see how me being positive is hurtful.

As for the men's health article - yes they sensationalised it, that's what the media does in our society. I was young and excited that people wanted to write about me - i didn't even consider the effects it might have on people who would never have that story written about them because they won't walk again.

are you certain your back and shoulder problems aren't partly from weightlifting?

They definitely played a huge part in exacerbating those problems, it's something i've always said. However the pain has been there since 2012-2013, before I even started working out in 2014, so there must be other reasons.

I don't mean to be defensive - i think there is serious merit in a lot of what you wrote and I will definitely take it to heart and I hope others do too.

However, I don't do this for attention - I don't give a shit about that. I'm trying to send a positive message to people. I'm truly sorry if it hurts people who might not have the same recovery as me, and I will have to be more aware and considerate in the future. But i can still try spread positivity to them and will continue to do so.

Thanks for your support and trying to help - it's important people point out these things. Wish you all the best!!!