How does it feel to be dead?
How does it feel to be dead? A bit like machine that stopped working. Your body is shutting down slowly. Everything becomes lighter and weaker. Hands fall down, head is too heavy to carry and your desire to keep on fighting for life disappears. There are no thoughts, nor flashback, just a great feeling of freedom. “You must leave”. It’s peaceful.
This is how I felt few days after I underwent a surgery to remove huge tumor from my head; I knew I am going to die and at that stage, I was OK with it. I just had enough.
Many of you know me as @ido8all on social, the guy that travels the world and posts cool photos with inspiring quotes on his Instagram account, but do you really know who I am?
This is probably going to be one of the most revealing posts I’ve ever shared, but the reason I am doing it is- you. If by sharing my story I can help people that are going through the same situation as I did, or people that are not living their lives as they should, I’m honored to put my story up front and help.
I grew up in small city in Israel (Lod) to loving family. I like social media, music, going to the gym and eating (“Ido ate all”). To anyone who sees me, I look normal. However, if you ask my doctors they will tell you that I am “not so normal”. I am actually mutation. “MUTATION?!”, When I was 15 I was diagnosed with my first head tumor – Fibrous dysplasia of bone. “Rare tumor” (bone disease that destroys and replaces normal bone with fibrous bone tissue). First tumor was above my left eye (that’s why it looks smaller now) and the surgery almost caused the loss of my eye, but don’t worry, “I can see! I can see!”. Thank god.
Two years later, when I was 17 year old, consistently headaches made me realize that I have it again, after 18 hours surgery I woke up half paralyzed; Couldn’t move my hands for 6 months and thanks to physiotherapy and Electrotherapy (love it!), I’ve managed to get it moving again. Can you imagine living without hands? Trust me, not fun at all.The good thing about it is that you learn to appreciate the small things you do with your hands, like unbuttoning your shirt.
To my question “Will it come back?!” They said, “It’s rare. We don’t really know. Small chances though… Live with it”. So I did.
For 9 years I was clean but I lived in the fear of “the return of my tumor”; Understanding that if I give up on something, I may not be able to do it after. I lived the moment. Lived the extreme. Pushed my limits; I was part of swimming team, highly ranked lieutenant, spent two weeks in isolated island, saw sunsets, practiced yoga, kickboxing, running…. “Why?” Because I could. Because I got the chance to live more.
Over those 9 years I looked at others feeling that they have easier life. Saying to myself “I wish mine was easy too”. But I was not jealous. I always kept thinking positive, waking up with a smile every day; I have this thing, every morning I smile to myself in the mirror, so if something happens to me during the day, I will remember that guy who smiled in the morning.
But then I started feeling bad again; Crazy headache that would knock me out. Feeling like someone is sitting inside my head, digging 24/7, squeezing hard, wanting me to suffer. After lots of tests, XRAYS and doctors’ appointments, they confirmed that tumor was back and it was big- 6cm (2.4in). Their biggest concern was that it was getting inside my left hemisphere.
No pill could make me feel better and I didn’t want to take any drugs because last time they gave me Morphine, I got addicted to it and it cause me Hallucinations. There were some days when I woke up in the morning crying. Just with myself. So no one could see me. “Can the pain stop?!” I was asking god. But it didn’t and I’ve decided that he pain didn’t stop me from living. I was a fighter and I wanted to have normal life so I kept going to over. Every day. For hours.
And you get used to the pain. You can’t remember how it’s like when it’s not painful. When people was asking me “how do you feel?”, I was like, “wait, did I forget about the pain?”.
Waiting for the surgery was awful. I just wanted the pain to go away, but I didn’t know when it’s actually going to happened until I got a text message from my nurse saying “it’s happening. Everything is ready. We know what we want to do, we are going to operate you… When?! New Year’s Eve (2008)”
On New Year’s Eve 2008, at 10 pm, I woke up after almost 7 hours of surgery. Everything was white and lightened just like you see in movies. I open my eyes and saw my dad smiling and my mom crying. First thing I did was checking if I can move my legs and hands and I could. The New Year’s countdown I did with nurse Mariam and nurse Tsipi. They were surprised to see how energetic I was screaming the numbers for the New Year. I was happy. I survived.
After my surgery I felt like I am in my own reality tv show. I am locked in a small room. Not allowed to leave the bed. Actually I was not allowed to move and there’s a nurse that was controlling my body. I remember feeling like a dolphin that was swept out of the water and lost its’ independence.
Two days after my surgery, as mentioned my tube that was draining from my brain was leaking which literally drained the living out of me. At that moment, I decided to give up. I couldn’t take it anymore. It was hard and enough even for me, the fighter. 11 years I was fighting, 11 years I survived and lived, but that’s it. When my mom and sister got into the room I knew that I don’t need to keep myself alive anymore. I whispered “I had Enough. It’s over”. It was my sister’s birthday, I didn’t want to let her down, but I just couldn’t live not for her, not for myself. I just wanted “them” to take me to the other world.
But life had other plans for me. The nurse that saw me saying good called every single doctor to come to my room and fight for my life. I don’t really remember much of those moments. I remember flying. I felt free. In the movies they tell you that people see the story of their lives. I saw nothing. I had no thoughts. I was free. And the thing that people are afraid the most- DEATH, felt so good. But as mentioned, it wasn’t my time to go and the doctors were fighting to get me back and the succeeded. Thank god. And I am not afraid of death anymore, but I better be alive because I have so much to give and so much to tell and I guess the world is not ready to say goodbye to me just as I am not ready to say goodbye.
After you’ve read my story, I have few more things to add, if I may. Always hope and believe. There’s the easy way, giving up, saying I’m in pain, scream to the world “feel sorry for me”, give up. I’ve seen people that were depressed while being sick. They set in dark room and just wanted it to be over for them. But why?
- Please don’t say to people that are sick “everything is going to be alright” because it’s irritating. You can’t guarantee that. You can pray. You can hope that everything will be alright but don’t promise something that you can’t control.
- If you are the patient, let others, your friends be there for you. On my first rounds I tried to show everything that I’m strong. That nothing can stop me and actually didn’t let anyone really support me. However on the third surgery, I felt so overwhelmed with all the love I got from people. Every Text message, phone call, visit, were so powerful and supportive that you should not miss that.
- Set yourself goals. My goals were to fly to nyc and to celebrate every new year’s eve in a special place. And I did and do.
- I am not a hero and I hate when people tell me that I am. Don’t you get it? I had no choice than to fight for my life. For my friends, for my family and of course for myself.
I was hesitating a lot if I want to share my story or not because basically I want people to treat me as normal. I don’t want people to feel sorry for me. Yes, I have been through a lot, but I survived to tell, support and inspire, if I can. Here’s a video I took 7 days after the surgery and few months ago:
Just take a look at me, look at the Sockets I have in my forehead, notice the scar that I carry from ear to ear and remind yourself that you need to start living. Just like I do. This is my wake up call to you for not taking your life granted. Heart. Ido