Jake, as someone who has been following you and your journey through all of this for a long time, it is always both sobering and deeply humbling to hear how genuine you are about both what you are going through and the ways you have learned to grow and adapt to the world around you as it develops. I consistently look forward to witnessing the things you strive to achieve and I'm really grateful that you work endlessly hard to bring your thoughts and your work to us. Thank you for always being so open and for reminding us that even though we all have our limits we must come to terms with, that doesn't mean we can't work with them to still achieve the goals our past selves desperately hope for. Just as your advice said, to be here while we're here, I really hope you know we are eternally grateful to have you here with us. Thank you.
I’m always gratified by the thoughtful responses from people on here. There’s some ugly stuff I wanna talk about soon, so it puts at ease to read messages like this that see me complexly. Thanks for watching, Erica.
The rollercoaster of chronic illness is such a rough ride. When I have good days I feel so much hope and zest for life and see my friends and create, and then a week later I am curled up on the couch and don't leave my apartment for a week. At one point I got news that was so devastating to me that I started sobbing and couldn't breathe, but I was worried about my mom having to see me in that moment. I kept telling her "it'll be okay, I'll be okay", even though I didn't believe it myself. It's funny (not ha ha funny) how humans can be at their lowest moments and still have the capacity to care for their loved ones. Thank you for sharing your highs and lows, we'll take videos when we can get them. Take care of yourself.
Truly. My memory is affected by illness, but even if it weren’t, oh how quickly I forget that I’m sick! And I appreciate what you did for your mom and why. I’ve lied to people around me to put them at peace. There are days I regret not burdening them with the truth. Mostly, I’m just trying to find and feel goodness and peace myself. And, of course, I’m still trying to learn how to suppress and overcome my codependency. Someday! ♥️
This was genuinely so eye opening for me. I recently have fallen into self pity for what I’m not able to- energy wise, time wise, etc. but I’ve never suffered to this extent and for that I am thankful for what I don’t understand and can’t imagine how truly difficult living like this is. But you are surviving and making meaning through it. It gives me hope for myself if I ever go through something similar. I am thankful for your perspective and thoughts. I hope that I can find contentment with how much I have before/if I lose the ability to live how I do now (even how limited it feels at times, it’s still no where in comparison) I realize how blessed I am to be healthy.
Thank you so much for sharing your story. I’ve been here since the car talk days. As someone who just recovered from the virus, reading your text about boredom being one of the worst parts is so real. I find so often people are quick to say “let me know if I can get you anything”. But honestly, time/some company is one of the best things you can give I think.
Yes! Boredom is an oft forgotten adversity. It’s relegated to personal responsibility, but in my experience, that is rarely the case. It’s worse when your illness prevents you from being able to see people. Hope you’ve recovered and are back to your familiar self. ♥️
I hope the recovery process for this wave is more easier on you, Jake. It’s really nice to hear from you. I’ve developed some illnesses due to the overwhelming stress from a diploma course. It may not be to the severity you have but it has effected my daily life. One of them affects what I eat, which isn’t really fun when one of my coping mechanisms for stress is eating a lot of food. All the points you’ve made about acceptance, the cycle of giving up but then not wanting to - even the swearing part is everything I agree with. On my end I find swearing just feels more honest and matches to how I feel, since I feel emotions on an extreme level most of the time. Saying “It was boring” doesn’t not have as much impact as “it was fucking boring”. You’re able to get the general vibe across. The point is made with just one addition. I may not have the exact same issues as you but I feel like I FELT your understanding, your point. I hope the fates can be as kind as they can be towards you. I can’t support you in patreon just yet but know I support you in spirit 1000%. I’ll always be sticking around :)
I’m so sorry to hear that. I’m unfortunately familiar with eating problems due to illness. I know it can be absolute hell. Hang in there, and I’m certain you’ll discover ways to curb the worst parts of it. Community has been the most important part of recovery and resilience for me. Most of my best treatment options came from suggestions people who have my same condition. And let me be clear: not from random people who know nothing about my illness. Actual community members in forums, Facebook groups, Twitter, Reddit, etc… Not to mention, the solidarity. ♥️
best message i took away : be here, while you are here. simple and to the point. this was a hard video to watch but so important when i realised at some point in my life, everything you said will apply to me and everyone i know. i love you man , you have a beautiful soul and your words are always true and wise
Hey Jake, I recently watched the netflix docuseries and because I suffer from a chronic condition, I could see past what was being shown and instead see a lot of myself in every one of you. You are the person I could relate to the most because of the way you explained how you felt, the symptoms you mentioned and the way you were shown to have coped with it all. I also have good and bad moments and have been living through those for the last three years. I also read your open letter and the way you articulated the feelings left me in awe because my experiences with my health have left me completely blank. I don't know how to feel, what to write...all i know is I am on a ship that gets caught in storms without warning all the time. When the sail is smooth, I live through exhaustion, fear and anxiety. One good thing is - all of this made me have a greater appreciation for the fight to live. Sending you lots of love and best wishes. Btw i went to explore treatment through bioresonance today and am thinking of giving it a try. They picked up Lyme disease which is fairly unknown where i am from (Bangladesh) and not taken seriously in the country where I live (Malaysia).
Oh it is wonderful to see you Jake, you were in my thoughts today and I had to search to see if you had given any update! Your honesty about your chronic illness and the factors that you face against rings so true to me now I have developed CFS/ME. This video gave me so much comfort in my current circumstance. You are a beautiful soul and I really appreciate you sharing your story. Sending you lots of well wishes from the UK and take care :)
man. in terms of my body not being able to keep up with my aspirations, I've pretty much only felt the lightest shades of what you're describing, but I'm so glad you posted this. it's just a good reminder to be mindful of what you *can* do and make peace with that where you can. this is a tangent but I think you (or anyone who appreciated this video) might enjoy my favorite video game, Outer Wilds - I found it to be a beautiful meditation on futility, frustration, mortality & acceptance. but maybe even that's saying too much bc it's just one of those games best experienced completely on one's own.
First ran into your channel when you posted a video in your car I still remember the black and white setup. I don't remember the exact title of your video but I remember it being about mental health and or depression. I was going through a depressive state where I felt I wasn't going to make it through the night. Stumbled across your video and remember feeling better just listening to what you said. Was like sitting in a car having a friendly conversation with a friend yet stranger I never met. Thank you for that video. On the other hand this video was such a serious topic, yet I still found myself chuckling. Glad you still have a sense of humor despite all you're going through.👍🏾👍🏾
I have experienced this exact thing with someone else. I know the feeling. I’m really glad it had a meaningful impact on you when you needed it. I think the most vicious parts of mental illness are due to solitude. So finding solidarity or community, even when it’s as thin as a RUclips video, can be profoundly reassuring. We really do need each other.
Thanks for the amazing share, I appreciate your wisdom. Your content has always made me smile and you brought so many laughs into my life. Wish you well
Always good to hear from you Jake, I appreciate hearing your perspective on life. Watching old videos of You and Olan, and coming back to them year after year. Feels like hanging out with 2 old friends. I appreciate all that you've given us, and hope to see much much more.
Your videos have always been really insightful and I appreciate the time and energy you put into it all. I'm still really grateful for your video on derealization and depersonalization. It gave me enough of the right wording and direction to finally get a proper mental health diagnosis. I really appreciate the stuff you've made. I hope you have an abundance of good days - both fun and restful.
So sorry for the rogue question & being behind story, but have you been checked for seizures? I was watching afflicted (not knowing the controversy about how ya'll were portrayed) and I kept thinking how many symptoms of yours & a few others reminded me of the 20+ years I had with undiagnosed epilepsy. Focal seizures cause lots of weird things, physical symptoms- and docs do not look for it. It's amazing how much medication helped once I finally got checked and diagnosed.
I’ve missed you mate. I’ve been struggling with chronic fatigue for years along with autistic burnout for which I only got diagnosed for during the pandemic. At 29. Life is crazy. Thinking of you.
Not much to add but how genuine and pragmatic you are is touching. The mindset with limits is relatable for me too, I feel those cycles and physical constraints. Cheers to being here while we're here.
This video is good for all medical students to watch for a sml glimpse into the lives of us who live with chronic pain and or illness. I’ve made videos of myself at my darkest moments and it’s like a diff person but I at least now I have compassion and patience for that part of me. We’re stronger where broken and cracks allow light in. (based on Hemingway.) Peace and health friend.
sometimes I step back and remember that I discovered you through the podcast you did with Shawna and 2 other guys a very very long time ago. probably like ten years ago if not more?? I forget that a lot. It's been a fuckin while, dude.
I was a musician. 12+ years of piano and violin, every day sometimes for hours. I loved it. It was my peace, my comfort, my home. I had written a few simple pieces for family members, but mostly it was the experience of being with the music, especially with other musicians, that gave me life. Then a genetic musculoskeletal condition reared it's ugly head and I could no longer stand still, then I couldn't sit upright - no more piano. I couldn't hold my arm up for more than a few seconds - no more violin. It was devastating the first few years as I reached that point, having no idea why this was happening, trying many different things to hold on to my life of music, but I had to let go. I was so stressed about it, I lost half of my hair in a month. It just fell out. I had to get used to no normal bathing. I get perhaps two real baths a year, when I get so frustrated that I just push through and force myself. I pay for it dearly afterward. The first 2-3 weeks after a bath are the worst, from a hygiene/comfort perspective. Once you hit a month your body just kinda closes off. You don't stink, don't feel "dirty" - it's like I'm living in the middle ages, lol. No doubt in my mind the past 10 years of my life that I've been bedridden have been harder on my parents than on me. I've come to terms with my new normal. They haven't, especially my dad. He reminisces about the past a lot, far too much by my reckoning. I've been "sick" close to 15 years (I'm 35) and as soon as I got my diagnosis from a geneticist, I found peace. I suddenly knew why all these seemingly unrelated things were plaguing me and could stop thinking I was just super unlucky. I have heavily relied on my faith in a loving creator who will remove my pain and suffering, and to any who don't hold such a hope, I don't know what to say. I know personally I would find it very hard to cope knowing I have 40+ years of being bedridden ahead of me, slowly getting more and more limited, with no chance of improvement and no real hope for the future. My condition doesn't carry the threat of death, just imprisonment. This video is about you, not me why am I rambling. Probably because 99% of the population doesn't have a clue, but you do. I guess what I'm saying is, I get you, buddy. Not the living with death as a companion part, but everything else.
“If people bring so much courage to this world the world has to kill them to break them, so of course it kills them. The world breaks every one and afterward many are strong at the broken places. But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially. If you are none of these you can be sure it will kill you too but there will be no special hurry.” - Hemingway The forced giving up of things we love that bring joy and fulfillment from a body that is broken or dysfunctional and we may never know why can be the hardest part to reconcile. IMHO we’re stronger where broken and cracks let light in. Peace and light Melinda ✌️
Jake, I don't know your spirituality (non of my business!) but this speaks so many spiritual lessons to my soul and I thank you so much for sharing your thoughts with us even after all this time through all your circumstances. 💛 peace my friend
“The number of times your old body makes promises that your new body can’t keep feels like a cosmic choke” wow. As someone with a chronic illness YES. That’s exactly how it feels 😭
When being this sick is your new baseline, you have to understand that whenever you’re feeling better means something is wrong making your heart work harder therefore you get the perception of feeling better while not actually being better. That’s why whenever it wears off you crash even harder.
I feel for you! Virus broke my world as a muso just when I joined an amazing band my jaw literally clenched shut the same week, and I could barely walk the 2nd day of a getaway with my bandmates to practice in a cabin. I was laughing about it with the guys cause I couldn’t open a jar and was saying I wasn’t pretending as I was again laughing it off but deep down I really couldn’t work out what was happening. It was the time of my life with something new, a new love, but also high stress with work and BOOM! My heart broke watching your videos and recognising that same humour and same confusing pain. Anthony William is the only thing that explains what my nerves are doing to me. It’s a choice if you want to look him up. Keyword search your worst symptom and Medical medium and see what it says and if it sheds some light and brings some peace with WHY? Anyway, a massage therapist dropped his name to me at the end of a session once, and I’d probably be dead now if she hadn’t. Anyway, I just want you to be able to hang and laugh with your mates as I recognise that laugh, and disease has no right to steal that joy!
I feel you 100%. I constantly experience different and strange symptoms, some are recognizable, some not. I saw lots of doctors, I made lots of medical exams and I got diagnosed (through biopsies too) for some rare diseases. However, there are still many things to discover. It’s hard and sometimes I feel totally impotent, helpless. I’m 33, but it’s like I’m 80. I feel uncertain about my future, I can’t do anything I want. Anyway, the most painful thing for me it’s the loneliness. I mean, I have my friends, I work, I do things… but I don’t feel understood, especially by my parents, my mother. Despite all the diagnosis, she doesn’t support me. And my ex partner too, he broke with me, telling he doesn’t want to be my « nurse ». I don’t behave as a victim, as I said, I’m trying to do my life, but I understood that people don’t want to listen to you complaining. So, I don’t speak about it to anybody anymore, even though I suffer regularly.
Hi Jake, I hope you're doing alright (considering). I'm also chronically ill, and just happened upon your story. I was genuinely wondering how you are doing/feeling ect. I spontaneously became ill in January of 2022 & still undiagnosed with a chronic pain & movement disorder. I know how impossible it's felt to try and get help. If you ever want to talk, (if that's at all helpful), I'm here.
Hi. I have similar symptoms. When treating Lyme's and co infections i saw a doctor in South Africa. They pick up properly what you have i can not understand how they can't America. I did a year of antibiotics got alot better along with cds. Had a live blood anylysis and they found four different fungus types. Paracites dowm dramatically. My husband died 8 month's ago and i relapsed because i couldn't take of my self. I feel so streatched with four kids being so sick.
Story of my life. Hope you pull out of the flare soon and get back to your "normal". Sad what our "normal" is, ay? 😐 But it is what it is. It's not what we want but it's what we got. Take care ❤️
You planned to post every TWO WEEKS??? Bitch, I don't have chronic illness and I struggle to finish a video ONCE a month. Also this title made me LOL. But in a dark way? Love you. Loved this. See you when I see you 💛
It was ambitious, I’ll admit. An unwelcome learning experience encapsulated in one hilariously ill-timed disaster. I would not like a repeat, if avoidable.
This amazing way you have of dealing with your condition/illness is truly inspiring. I hate saying this as I know it's absolutely zero actual physical help, but I really hope you can recover. The balls people like you have for facing things like this is genuinely, truly inspiring. I have no doubt that a lot of people have found strength from you!
Hi Jake, It's been a while, and as someone who always enjoyed your very articulate/sensitive/relevant/humorous posts, i find myself wondering: How are you doing these days? I assume there's a reason why you're not showing up here anymore, so it's probably a mute question.(my native language is flemish, so apologies if parts of my message read a bit weird) Eitherway: i hope you are doing well and/or are able to make some fine music.
Olá, Jake. Que a paz do nosso Senhor Jesus Cristo esteja com você e sua família! Escreverei em português, aproveitando que o youtube tem a função de traduzir automaticamente. Estava assintindo o documentário na Netflix sobre as doenças do século 21 e foi assim que te achei. Procurei para saber como estás. Sinto muito que ainda não tenha sido abençoado com uma cura, mas não desista. Ore, tenha fé e busque o único que pode curar qualquer coisa: Jesus. Eu também estou doente, mas não podemos nos deixar abalar. A vida é uma constante luta. Um grande abraço, estarei orando por você. ❤️🙏🏻
love ya, buddy! Hang in there!
I toast you both with the chalice of the lions blaze
Jake, as someone who has been following you and your journey through all of this for a long time, it is always both sobering and deeply humbling to hear how genuine you are about both what you are going through and the ways you have learned to grow and adapt to the world around you as it develops. I consistently look forward to witnessing the things you strive to achieve and I'm really grateful that you work endlessly hard to bring your thoughts and your work to us. Thank you for always being so open and for reminding us that even though we all have our limits we must come to terms with, that doesn't mean we can't work with them to still achieve the goals our past selves desperately hope for. Just as your advice said, to be here while we're here, I really hope you know we are eternally grateful to have you here with us. Thank you.
I’m always gratified by the thoughtful responses from people on here. There’s some ugly stuff I wanna talk about soon, so it puts at ease to read messages like this that see me complexly. Thanks for watching, Erica.
🥲💚
I'll say one extra curse every day after that endorsement god damn
The children must learn. If I have any legacy to leave behind, let it be this.
Think of you every so often. Hope you're finding small joys and momemts of contentment in life despite your hardships, I know how hard it can be 🖤♥️
The rollercoaster of chronic illness is such a rough ride. When I have good days I feel so much hope and zest for life and see my friends and create, and then a week later I am curled up on the couch and don't leave my apartment for a week. At one point I got news that was so devastating to me that I started sobbing and couldn't breathe, but I was worried about my mom having to see me in that moment. I kept telling her "it'll be okay, I'll be okay", even though I didn't believe it myself. It's funny (not ha ha funny) how humans can be at their lowest moments and still have the capacity to care for their loved ones. Thank you for sharing your highs and lows, we'll take videos when we can get them. Take care of yourself.
Truly. My memory is affected by illness, but even if it weren’t, oh how quickly I forget that I’m sick! And I appreciate what you did for your mom and why. I’ve lied to people around me to put them at peace. There are days I regret not burdening them with the truth. Mostly, I’m just trying to find and feel goodness and peace myself. And, of course, I’m still trying to learn how to suppress and overcome my codependency. Someday! ♥️
“The world breaks every one and afterward many are strong at the broken places.” - Hemingway
Peace and health from a human who can relate.
This was genuinely so eye opening for me. I recently have fallen into self pity for what I’m not able to- energy wise, time wise, etc. but I’ve never suffered to this extent and for that I am thankful for what I don’t understand and can’t imagine how truly difficult living like this is. But you are surviving and making meaning through it. It gives me hope for myself if I ever go through something similar. I am thankful for your perspective and thoughts. I hope that I can find contentment with how much I have before/if I lose the ability to live how I do now (even how limited it feels at times, it’s still no where in comparison) I realize how blessed I am to be healthy.
Thank you so much for sharing your story. I’ve been here since the car talk days. As someone who just recovered from the virus, reading your text about boredom being one of the worst parts is so real.
I find so often people are quick to say “let me know if I can get you anything”. But honestly, time/some company is one of the best things you can give I think.
Yes! Boredom is an oft forgotten adversity. It’s relegated to personal responsibility, but in my experience, that is rarely the case. It’s worse when your illness prevents you from being able to see people. Hope you’ve recovered and are back to your familiar self. ♥️
The world is better with you in it. Never forget how important you are. Wishing you a miracle and full speedy recovery.
YM here. I miss you, Jake. Thank you for this important video, as always. ❤
I hope the recovery process for this wave is more easier on you, Jake. It’s really nice to hear from you.
I’ve developed some illnesses due to the overwhelming stress from a diploma course. It may not be to the severity you have but it has effected my daily life. One of them affects what I eat, which isn’t really fun when one of my coping mechanisms for stress is eating a lot of food.
All the points you’ve made about acceptance, the cycle of giving up but then not wanting to - even the swearing part is everything I agree with.
On my end I find swearing just feels more honest and matches to how I feel, since I feel emotions on an extreme level most of the time. Saying “It was boring” doesn’t not have as much impact as “it was fucking boring”. You’re able to get the general vibe across. The point is made with just one addition.
I may not have the exact same issues as you but I feel like I FELT your understanding, your point. I hope the fates can be as kind as they can be towards you.
I can’t support you in patreon just yet but know I support you in spirit 1000%. I’ll always be sticking around :)
I’m so sorry to hear that. I’m unfortunately familiar with eating problems due to illness. I know it can be absolute hell. Hang in there, and I’m certain you’ll discover ways to curb the worst parts of it. Community has been the most important part of recovery and resilience for me. Most of my best treatment options came from suggestions people who have my same condition. And let me be clear: not from random people who know nothing about my illness. Actual community members in forums, Facebook groups, Twitter, Reddit, etc…
Not to mention, the solidarity. ♥️
best message i took away : be here, while you are here.
simple and to the point. this was a hard video to watch but so important when i realised at some point in my life, everything you said will apply to me and everyone i know.
i love you man , you have a beautiful soul and your words are always true and wise
Hope you're doing well. My prayers go out to you, hope you can attain more extra strength every day! Godspeed.
You are an amazing human being. Thank you for allowing us to share in your journey.
Hey Jake, I recently watched the netflix docuseries and because I suffer from a chronic condition, I could see past what was being shown and instead see a lot of myself in every one of you. You are the person I could relate to the most because of the way you explained how you felt, the symptoms you mentioned and the way you were shown to have coped with it all. I also have good and bad moments and have been living through those for the last three years. I also read your open letter and the way you articulated the feelings left me in awe because my experiences with my health have left me completely blank. I don't know how to feel, what to write...all i know is I am on a ship that gets caught in storms without warning all the time. When the sail is smooth, I live through exhaustion, fear and anxiety. One good thing is - all of this made me have a greater appreciation for the fight to live. Sending you lots of love and best wishes. Btw i went to explore treatment through bioresonance today and am thinking of giving it a try. They picked up Lyme disease which is fairly unknown where i am from (Bangladesh) and not taken seriously in the country where I live (Malaysia).
Thank you, Jake. I always appreciate hearing your voice and your perspective
Oh it is wonderful to see you Jake, you were in my thoughts today and I had to search to see if you had given any update! Your honesty about your chronic illness and the factors that you face against rings so true to me now I have developed CFS/ME. This video gave me so much comfort in my current circumstance. You are a beautiful soul and I really appreciate you sharing your story. Sending you lots of well wishes from the UK and take care :)
man. in terms of my body not being able to keep up with my aspirations, I've pretty much only felt the lightest shades of what you're describing, but I'm so glad you posted this. it's just a good reminder to be mindful of what you *can* do and make peace with that where you can.
this is a tangent but I think you (or anyone who appreciated this video) might enjoy my favorite video game, Outer Wilds - I found it to be a beautiful meditation on futility, frustration, mortality & acceptance. but maybe even that's saying too much bc it's just one of those games best experienced completely on one's own.
First ran into your channel when you posted a video in your car I still remember the black and white setup. I don't remember the exact title of your video but I remember it being about mental health and or depression. I was going through a depressive state where I felt I wasn't going to make it through the night. Stumbled across your video and remember feeling better just listening to what you said. Was like sitting in a car having a friendly conversation with a friend yet stranger I never met. Thank you for that video. On the other hand this video was such a serious topic, yet I still found myself chuckling. Glad you still have a sense of humor despite all you're going through.👍🏾👍🏾
I have experienced this exact thing with someone else. I know the feeling. I’m really glad it had a meaningful impact on you when you needed it. I think the most vicious parts of mental illness are due to solitude. So finding solidarity or community, even when it’s as thin as a RUclips video, can be profoundly reassuring. We really do need each other.
Thanks for the amazing share, I appreciate your wisdom. Your content has always made me smile and you brought so many laughs into my life. Wish you well
Always good to hear from you Jake, I appreciate hearing your perspective on life. Watching old videos of You and Olan, and coming back to them year after year. Feels like hanging out with 2 old friends. I appreciate all that you've given us, and hope to see much much more.
Solid hang, Jared. See you on the flip side, my friend. *secret handshake*
Your videos have always been really insightful and I appreciate the time and energy you put into it all. I'm still really grateful for your video on derealization and depersonalization. It gave me enough of the right wording and direction to finally get a proper mental health diagnosis.
I really appreciate the stuff you've made. I hope you have an abundance of good days - both fun and restful.
I always see you, Alex. Appreciate seeing you.
Appreciate your words and advice, Jake.
Glad to see you, Jake! I keep hoping for you.
That was a great video. Thanks for sharing your story.
thanks for sharing this stuff, im sure the insights you share are going to help me and many others understand and empathize with fellow humans ❤
So sorry for the rogue question & being behind story, but have you been checked for seizures? I was watching afflicted (not knowing the controversy about how ya'll were portrayed) and I kept thinking how many symptoms of yours & a few others reminded me of the 20+ years I had with undiagnosed epilepsy. Focal seizures cause lots of weird things, physical symptoms- and docs do not look for it. It's amazing how much medication helped once I finally got checked and diagnosed.
I’ve missed you mate. I’ve been struggling with chronic fatigue for years along with autistic burnout for which I only got diagnosed for during the pandemic. At 29. Life is crazy. Thinking of you.
Not much to add but how genuine and pragmatic you are is touching. The mindset with limits is relatable for me too, I feel those cycles and physical constraints. Cheers to being here while we're here.
This video is good for all medical students to watch for a sml glimpse into the lives of us who live with chronic pain and or illness. I’ve made videos of myself at my darkest moments and it’s like a diff person but I at least now I have compassion and patience for that part of me. We’re stronger where broken and cracks allow light in. (based on Hemingway.) Peace and health friend.
sometimes I step back and remember that I discovered you through the podcast you did with Shawna and 2 other guys a very very long time ago. probably like ten years ago if not more?? I forget that a lot. It's been a fuckin while, dude.
I was a musician. 12+ years of piano and violin, every day sometimes for hours. I loved it. It was my peace, my comfort, my home. I had written a few simple pieces for family members, but mostly it was the experience of being with the music, especially with other musicians, that gave me life. Then a genetic musculoskeletal condition reared it's ugly head and I could no longer stand still, then I couldn't sit upright - no more piano. I couldn't hold my arm up for more than a few seconds - no more violin. It was devastating the first few years as I reached that point, having no idea why this was happening, trying many different things to hold on to my life of music, but I had to let go. I was so stressed about it, I lost half of my hair in a month. It just fell out. I had to get used to no normal bathing. I get perhaps two real baths a year, when I get so frustrated that I just push through and force myself. I pay for it dearly afterward. The first 2-3 weeks after a bath are the worst, from a hygiene/comfort perspective. Once you hit a month your body just kinda closes off. You don't stink, don't feel "dirty" - it's like I'm living in the middle ages, lol.
No doubt in my mind the past 10 years of my life that I've been bedridden have been harder on my parents than on me. I've come to terms with my new normal. They haven't, especially my dad. He reminisces about the past a lot, far too much by my reckoning. I've been "sick" close to 15 years (I'm 35) and as soon as I got my diagnosis from a geneticist, I found peace. I suddenly knew why all these seemingly unrelated things were plaguing me and could stop thinking I was just super unlucky. I have heavily relied on my faith in a loving creator who will remove my pain and suffering, and to any who don't hold such a hope, I don't know what to say. I know personally I would find it very hard to cope knowing I have 40+ years of being bedridden ahead of me, slowly getting more and more limited, with no chance of improvement and no real hope for the future. My condition doesn't carry the threat of death, just imprisonment.
This video is about you, not me why am I rambling. Probably because 99% of the population doesn't have a clue, but you do. I guess what I'm saying is, I get you, buddy. Not the living with death as a companion part, but everything else.
“If people bring so much courage to this world the world has to kill them to break them, so of course it kills them. The world breaks every one and afterward many are strong at the broken places. But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially. If you are none of these you can be sure it will kill you too but there will be no special hurry.”
- Hemingway
The forced giving up of things we love that bring joy and fulfillment from a body that is broken or dysfunctional and we may never know why can be the hardest part to reconcile. IMHO we’re stronger where broken and cracks let light in. Peace and light Melinda ✌️
Jake, I don't know your spirituality (non of my business!) but this speaks so many spiritual lessons to my soul and I thank you so much for sharing your thoughts with us even after all this time through all your circumstances. 💛 peace my friend
“The number of times your old body makes promises that your new body can’t keep feels like a cosmic choke” wow. As someone with a chronic illness YES. That’s exactly how it feels 😭
When being this sick is your new baseline, you have to understand that whenever you’re feeling better means something is wrong making your heart work harder therefore you get the perception of feeling better while not actually being better. That’s why whenever it wears off you crash even harder.
I feel for you! Virus broke my world as a muso just when I joined an amazing band my jaw literally clenched shut the same week, and I could barely walk the 2nd day of a getaway with my bandmates to practice in a cabin. I was laughing about it with the guys cause I couldn’t open a jar and was saying I wasn’t pretending as I was again laughing it off but deep down I really couldn’t work out what was happening. It was the time of my life with something new, a new love, but also high stress with work and BOOM! My heart broke watching your videos and recognising that same humour and same confusing pain.
Anthony William is the only thing that explains what my nerves are doing to me. It’s a choice if you want to look him up. Keyword search your worst symptom and Medical medium and see what it says and if it sheds some light and brings some peace with WHY? Anyway, a massage therapist dropped his name to me at the end of a session once, and I’d probably be dead now if she hadn’t. Anyway, I just want you to be able to hang and laugh with your mates as I recognise that laugh, and disease has no right to steal that joy!
I feel you 100%. I constantly experience different and strange symptoms, some are recognizable, some not. I saw lots of doctors, I made lots of medical exams and I got diagnosed (through biopsies too) for some rare diseases. However, there are still many things to discover. It’s hard and sometimes I feel totally impotent, helpless. I’m 33, but it’s like I’m 80. I feel uncertain about my future, I can’t do anything I want.
Anyway, the most painful thing for me it’s the loneliness. I mean, I have my friends, I work, I do things… but I don’t feel understood, especially by my parents, my mother. Despite all the diagnosis, she doesn’t support me. And my ex partner too, he broke with me, telling he doesn’t want to be my « nurse ».
I don’t behave as a victim, as I said, I’m trying to do my life, but I understood that people don’t want to listen to you complaining. So, I don’t speak about it to anybody anymore, even though I suffer regularly.
i loved this so much thank you for your honesty, you have such a way with words
Hi Jake, I hope you're doing alright (considering). I'm also chronically ill, and just happened upon your story. I was genuinely wondering how you are doing/feeling ect. I spontaneously became ill in January of 2022 & still undiagnosed with a chronic pain & movement disorder. I know how impossible it's felt to try and get help. If you ever want to talk, (if that's at all helpful), I'm here.
Hi.
I have similar symptoms. When treating Lyme's and co infections i saw a doctor in South Africa. They pick up properly what you have i can not understand how they can't America. I did a year of antibiotics got alot better along with cds. Had a live blood anylysis and they found four different fungus types. Paracites dowm dramatically. My husband died 8 month's ago and i relapsed because i couldn't take of my self. I feel so streatched with four kids being so sick.
Just be here while you're here. 😭💙
Story of my life. Hope you pull out of the flare soon and get back to your "normal". Sad what our "normal" is, ay? 😐 But it is what it is. It's not what we want but it's what we got. Take care ❤️
You planned to post every TWO WEEKS??? Bitch, I don't have chronic illness and I struggle to finish a video ONCE a month. Also this title made me LOL. But in a dark way? Love you. Loved this. See you when I see you 💛
It was ambitious, I’ll admit. An unwelcome learning experience encapsulated in one hilariously ill-timed disaster. I would not like a repeat, if avoidable.
This amazing way you have of dealing with your condition/illness is truly inspiring. I hate saying this as I know it's absolutely zero actual physical help, but I really hope you can recover. The balls people like you have for facing things like this is genuinely, truly inspiring. I have no doubt that a lot of people have found strength from you!
Be healed.
What was your eventual medical diagnosis?
Hi Jake,
It's been a while, and as someone who always enjoyed your very articulate/sensitive/relevant/humorous posts, i find myself wondering: How are you doing these days? I assume there's a reason why you're not showing up here anymore, so it's probably a mute question.(my native language is flemish, so apologies if parts of my message read a bit weird) Eitherway: i hope you are doing well and/or are able to make some fine music.
i admire you so much. also i can't imagine not swearing anymore lmao
Olá, Jake. Que a paz do nosso Senhor Jesus Cristo esteja com você e sua família! Escreverei em português, aproveitando que o youtube tem a função de traduzir automaticamente. Estava assintindo o documentário na Netflix sobre as doenças do século 21 e foi assim que te achei. Procurei para saber como estás. Sinto muito que ainda não tenha sido abençoado com uma cura, mas não desista. Ore, tenha fé e busque o único que pode curar qualquer coisa: Jesus. Eu também estou doente, mas não podemos nos deixar abalar. A vida é uma constante luta. Um grande abraço, estarei orando por você. ❤️🙏🏻
⭐️
Sorry but… what he have?
ᴘʀᴏᴍᴏsᴍ 🙈