Flesh Eating Disease

tim100

Dear Ezra and Lian,

I came close to losing my life and very close to losing my right leg. Less than 3 months after Lian was born in 2011, I got flesh-eating disease or necrotizing fasciitis.

 

This is a difficult letter to write. It takes me back to a time that I would rather not re-live. (Literally, I am squirming with discomfort and feeling sick to my stomach.) Yet it taught me so much. I will travel back there so that maybe it can teach you a few things. This is that story. This is the whole truth (in a short letter). This story is also one of the big reasons why I’m writing all these letters to you too.

 

I had one of those rare cases of flesh-eating disease that is almost completely random. It is like getting struck by lightning. I didn’t have any pre-conditions for it. I didn’t do anything serious that would cause it to happen. It just happened. Probably I got itchy and scratched my skin. In that moment, I got infected with a mutant, drug-resistant strain of a common bacteria that is present on our skin all the time.

 

At the end of May, 2011 I went on a journey to help a couple people. I dropped off a lot of baby things for a single mother in the Jane & Finch area of Toronto. Then I drove my truck to help grandpa move to an apartment closer to grandma while she was in the hospital long term.

Along the way, I stopped at an auto repair shop in Barrie, Ontario. They were fixing a lot of things. So while my truck was getting fixed, I went for a long hike. That day started out at about 22C. Hours later by the time I walked back to the repair shop, it was now slightly above 0C. I thought because of the sudden temperature change, I was shivering uncontrollably. Also, I pulled the hamstring in my right leg. I could barely move my leg. I had got lost and ended up hiking for way longer than I planned.

 

When the truck repair was finished, I began driving to Grandpa’s apartment. I could barely drive there. By the time I got to Grandpa’s place, I had a crazy high fever. Only with extreme pain could I move into the bed. I thought I was suffering from some kind of hypothermia with a pulled hamstring in my leg.

I slept that night at Grandpa’s. I was on a roller coaster of delirium. I alternated between hot and cold. In order for me to go to the washroom, I would crawl out of bed. I dragged myself along the floor with my arms and pushed with my left leg. From the previous night to that morning, Grandpa tried to convince me to go to the hospital. I kept telling him I would be fine. Finally, I said, “Ok, I will call TeleHealth (provincial toll free health line).” I talked to a nurse and told her about my fever symptoms. She said I should keep doing what I’m doing; get lots of rest, drink plenty of fluids, take Tylenol for the fever, no need to go to the hospital. I then said, “Oh by the way, one other thing. I think I pulled my hamstring hiking yesterday. I have this big red blotch on my leg and it hurts like I have never experienced before. I don’t think it has anything to do with this fever, but I thought I should mention it.” She put me on hold for about 5 minutes, then came back on the line. She said, “Get to emergency at the closest hospital now.” If I had have been by myself, I never would have called TeleHealth then. I would have never gone to the hospital. I would have borne the pain and fever for at least another day. Grandpa and that nurse definitely saved my leg and quite likely also saved my life.

The hospital was a small one. It was also a Saturday. There was only 1 doctor on call in the emergency room. It was full of minor things. There was also one young man with heart attack symptoms and a woman who needed an emergency C-Section. There wasn’t an obstetrician in the hospital or on call. The doctor hadn’t performed one in years and was trying to get the hospital to call someone in to do it or send the woman to the Barrie hospital an hour drive away. You might say he was a wee bit distracted from paying any attention to me.

 

I was hooked up to IV and given medication for the fever. I was listening to the doctor and hospital staff do triage and try to come up with a plan for everybody. Meanwhile, it was 8 hours before I got admitted to the hospital and got my first course of anti-biotics. The next day, the skin specialist was so mad when he heard it. I could tell he didn’t want to frighten me, but he would say stuff like, “That could have turned out really…….” “If you had a really aggressive infection…..” and not finish his sentences. He confirmed the emergency room doctor’s late diagnosis, I probably had flesh-eating disease or necrotizing fasciitis.

They started pumping the fluids and a stronger anti-biotic medication into me. I had to keep track of how much urine I passed. In one 24 hour period, I peed 9.8 litres. This meant I could only sleep in 20 minute shifts. By this point, my thigh had ballooned. It was like having a tire held onto my upper thigh with safety pins. When I stood up to walk to the washroom, it ripped and pulled at my skin. I would hobble over to the toilet dragging the mobile IV stand. Take my measurements and shuffle back to the bed in extreme agony. Sleep 20 minutes. Do it all over again. Again and again.

After some initial success, the medication failed to keep the infection from spreading. They tried a third medication. Then the vein in my left arm collapsed. So they had to put IV in my right arm. It took the very young and new nurse 6 unsuccessful tries to finally give up getting a vein in my right. I felt like a pin cushion. A new nurse got it inserted. The 3rd anti-biotic failed to work. It was onto the 4th drug that is rarely used. Doctors don’t want to overuse it so that it doesn’t become ineffective in the general population. They cranked up the drugs to try keep ahead of this infection.

 

It felt like a hot wire shoved up my arm all the way to my shoulder. I stuffed a pillow in my mouth so no one in the hospital could hear me scream in agony. It went on for 45 minutes with tears streaming down my face. Finally, the nurse turned down the flow rate to something I could handle.

 

After days of extreme pain, I begged God to let me die. I had reached the end of my pain tolerance. Then the pain got worse and lasted a few more days. It took me way past anything I had experienced or what I thought I could even endure. I now knew what chronic pain was like. I knew what my Mom had experienced for years with cellulitis in her legs. I became a lot more sympathetic to their plight. I also now knew, you could break me with pain. I would have said or done almost anything to make it end.

 

I thought my parents, my sister, my friends and my kids are never going to know the truth of my life. I’m going to take so many secrets to my grave. All that experience is going to be completely wasted. I will never finish writing “The Snow Tiger in the Jungle”. Really, this is how my life ends? I’m going to die alone because I and my doctor have been trying to reassure everyone, especially Mommy that I’m doing ok. We don’t want anyone to worry, so we selectively tell them the truth and hope no one googles necrotizing fasciitis.

 

I’m not even going to get to hug them goodbye or tell them face-to-face, “I love you”. In the end, it turned out ok. That’s not because I made a good decision. That is only because I was given the gift of a second chance. I should have levelled with people just how serious things were. I stupidly created a test for everyone, including Mommy. I wanted to see who would come visit me without me asking.

 

Since Lian was only 2 months old, I knew it wasn’t worth any risk to have her visit me in the hospital. I only asked to see one person. That one person was you, Ezra. Mommy wouldn’t even let you visit. “Uncle” Bob offered to drive you all the way from Pickering to Midland, but Mommy wouldn’t let you come. Even though what I had wasn’t contagious, she still wouldn’t let you see me. I had too much pride to beg her while crying. I wish I had. That was probably the probably the longest lasting injury I suffered from this ordeal. Bob came to visit anyways. Other than Grandpa, who came to visit me every day, Bob was my only visitor. That will always mean something to me.

 

I also came to realize that that is not the way I want to die. If I was in the mountains of North East India, I would not die alone. I might be surrounded by total strangers, but the “hilly people” would be beside my bed. They would bring me home food, hold my hand, sing me songs and pray for me. When I was young, I was an independent man who looked after everyone else. Now that I am older I have to confess that often, I want others to look after me. The older I get, the more those mountains draw me “home”.

 

There was an elderly Mizo lady who used to live in Canada for decades. When her Sap husband passed away, she returned to her home near Lunglei. The reason she gave was because of Canadian’s lack of community and daily visits with friends and neighbours; especially while ill or alone. I didn’t understand it back in 2008. I just thought she never adjusted culturally to Canada. Now I think it’s a Canadian cultural flaw. I totally understand now why she left behind better medical care for better community care. I will do the same thing someday.

 

The hospital doctor was excellent. He had handled flesh-eating disease once before on another patient. He began to explain possible outcomes. If this failed to work soon, they would have to cut out a big chunk of skin or amputate my leg. So far my infection had not got into my muscle or blood stream, but it was getting close to my knee. Of course, he told me my odds of dying. (75% if left untreated.)

The doctors decided due to the harsh medication and the fact I was going to be in hospital a while, the vein in my right arm would collapse soon. It was time for a direct central line into my sub-clavicle vein. There was about a high chance of puncturing my lung and 15% chance of all complications. I had to sign a consent form absolving them if things went wrong. (Just writing this, is making me nervous and squirming with discomfort.) They tilted the operating table upside down on a 45 degree angle. The nurses put this big balance beam between my shoulder blades. The net effect is that my chest is thrust forward, while my head and arms fall back. They successfully made the insertion. Then they added the plastic adaptor. The surgeon had to apply a lot of pressure while he corkscrewed into me. I was making jokes about this being like a medieval torture device. I was on the racks. I cried out in jest, “I confess”.

 

Finally, the 4th drug was successful. It halted the spread of the infection and then the swelling began to go down. Of course, the anti-biotic was so successful that it killed off almost every microbe in my body, even the good bacteria. This lets the C. difficile bacteria explode in numbers. That is highly contagious and can also be fatal. So the doctors now had to put me in “isolation”. All staff and visitors have to wear protective clothing and disposable gloves and booties to come into my room.

 

If I was offered the “opportunity” to get flesh-eating disease again, I would run away screaming in terror. It was extremely torturous. I don’t know how I didn’t melt down. Yet, I can honestly say, I am grateful for the experience. I am better for it. It humbled me. It let me experience the pain that others live with every day. I have so much more empathy than I ever had before. I learned a lot about myself. I also realized there’s a lot I want to tell you both. Tomorrow may never come for me. This is why I’m in such a rush to write you all these letters.

 

Love,

Dad

 

 

 

 

 

I was 45 minutes away from being a millionaire

tim89

Dear Ezra and Lian,

This is such a part of my life, I forget sometimes how much it freaks people out when they hear about it for the first time. I mean, the people who think they know me well. They never see it coming. It will shake my friends much more than you or I. Money often does.

Today (Aug. 25, 2015) and the last few days are like a replay of the autumn of 1997. Currency trouble in Asia has led to large stock market declines. The swiftness with which this has unfolded is breath-taking. In 1997, similar events took months to roll out. I felt the US stock market was grotesquely over-valued and fuelled by speculative loans. The stock markets doubled in value in 30 months. Billions of dollars had been wiped out in Asian bond and stock markets, yet nothing happened here in North America.

On Oct. 21, I turned 25. The next day, for the first time in my life, I bought about $35,000 in “uncovered put options” on the S&P500. All of my options were well “out of the money.” I could only make money with a big crash. If the prices on the stock go down, my investment goes up. The further down it goes, my investment would rise exponentially. The very next day, the Dow Jones Industrial Average (DJIA) went down a lot (187 points). My “investment” went from $35,000 to $55,000. The next day, the DJIA went down another 128 points. My investment was now worth about $80,000. By the end of Friday, I couldn’t wait for Monday.

Monday came and it was historic. From Wikipedia, “By the end of the day, the Dow Jones Industrial Average fell 554.26 points, or 7.18%, to 7,161.15. Back then, this was the 12th biggest percentage loss and 3rd biggest point loss on record… The S&P 500 fell 64.63, or 6.86%, to 877.01…This crash put the Dow down 12% from its then-record high of 8,259 on August 6… Volume also hit a record high. New York Stock Exchange volume topped 695 million shares, breaking the previous record of 684 million shares traded on January 23, 1997. $663 billion in market capitalization was wiped out.” For me however, I was now worth about $280,000. I picked up the phone to call my supervisor. I was going to tell him that he would never see me again at work. For me at 25, I was young enough and with no responsibilities. That was plenty for me to retire. However, I hesitated and decided to wait for late Tuesday afternoon to make the call.

I took the day off on Tuesday. I got ready for the day that I knew would change my life. I was confident by the end of it, I would have quit my job and begin a new life’s journey. I had my plan, when my investment got to $1 million I would start selling my options. Before the market opened at 9:30 am, stock futures were showing that there would be another day of losses on the stock market. Hong Kong’s Hang Seng had fallen 14% overnight. All good news for me.

From 9:30 to 10:06 am, the DJIA lost 186 points. In those 36 minutes, I “made” about $270,000. My total was at $550,000. After 10:00 a.m., I was making over $10,000 a minute. The rate was actually rising exponentially because of the nature of my investment. At this rate, in another 45 minutes I would be worth more than a million dollars. By the end of the day, I was on track to have over $4 million.

Then a funny thing happened on my way to this new life. Alan Greenspan, the Chairman of US Federal Reserve decided to intervene in the markets. In a coordinated effort with some of the world’s biggest banks and brokerages, they began buying to prop up the market. The stock market turned around. It began to rise.

I will cut out all the details. Let me just say a few things. I sat stunned. I couldn’t sell. I kept waiting for the stock market crash to overwhelm the Fed’s actions. One day moved into the next. Options have expiry dates. I literally held onto them until they were worth nothing. I had made and lost over half a million dollars in a few weeks.

In my personal aftermath, I felt like “Hmmm, I should want to kill myself for losing all this money, but strangely I don’t feel that way at all.” My parents could have really used some financial help at that time, but I made a big mistake. I really regretted not being able to help them. It was easy come, easy go. I kind of felt nothing. As the years have rolled by, I do regret my missed opportunity. It’s been really hard the last few months watching the Shanghai Stock Index fall, but not making these same bets again. Your well-being has kept me making safe financial choices.

Here are a few things you can learn from your dear-old-Dad;

  1. Greed can kill you. The last few days have probably created losses over $1 trillion worldwide (my guess). There are going to be a lot of people who kill themselves because of that. If they had been satisfied with a small return, they would have their money somewhere safe now. Instead, some like me, will have lost everything. They won’t be able to deal with the consequences.
  2. Greed can sneak up on you. Ezra, you and I are pretty non-materialistic. Don’t let that fool you into making foolish choices based on greed. Until October 1997, I had no idea I could be that greedy. I mean I wasn’t satisfied with $550,000. I wanted a million dollars. How crazy is that?
  3. Have an exit plan. How are you going to get out of an investment, decision or situation? If you let your emotions guide your decisions, you will make bad decision after bad decision. Make a plan when you are calm and have no stress. In the heat of the moment, if you stick to the plan, it can get you out of trouble.
  4. Be accountable to somebody else. All of us need somebody to hold onto us and pull on our chain when we can’t move or we are doing something stupid. Making decisions while sitting alone in front of the TV or the computer is a recipe for disaster.
  5. The single best way to get addicted to gambling or anything for that matter, is to win the first time. If your first experience is great, you will come back for more. Lots of drug dealers/”friends” will give potential clients/”friend” a free first sample. The addicted will come back for more because they keep trying to experience that first time again. I didn’t make a really good investment decision, I got extremely lucky on my first buy. That was dangerous. It could have ruined me.
  6. Practice letting go. When we fall in love with our decisions and our stuff, we can’t let go. It is a constant struggle with me, but I daily have to let go of things. This is one reason why we constantly have to save money, give money to charity, take our old stuff to the second hand store, and throw out garbage and papers. We have to let go constantly. If we don’t, our possessions will possess us. Hold everything lightly in your hands. When it grows wings, let it fly away.

This will mean a lot more to you when you are older and you find out how difficult it is to earn money through honest, hard work. I hope my bad experience helps you in some way.

Love,

Dad

 

Hebron

Dear Ezra and Lian,

In December, 1999, it was between the First and Second Intifada. There was peace in Israel and Palestine. The Palestinian Authority especially were making an extra effort to welcome tourists for the new millennium celebrations. There were big plans for Christmas Eve programs in Bethlehem.

It was a special time. I feel privileged to have been there at that time. There were tens of thousands of foreign tourists. Every day we made new friends and would hang out and do stuff together; especially us backpackers. One day, a Buddhist friend from the U.K. and I decided we should visit Hebron. We didn’t take an Israeli Egged bus. We took a Palestinian bus leaving from the Damascus Gate.

The bus dropped us off in the centre of Hebron. We set out for the Cave of the Patriarchs, one mile away. As we walked along the street, there were two young men watching us. As we approached, one of them, pulled out a handgun and pointed it at me. I did a bit of stutter step, but I kept walking.

Strangely, the two guys never said anything. They never motioned with the gun for me to stop or to raise my hands. So I didn’t. I maintained an expressionless eye contact. I never said anything or gave any gestures of any kind. But I kept on walking. I don’t think my friend saw the gun. We never talked about it. After about 30 second of walking, these guys were now about 50 feet away from me, so I turned my head and looked straight ahead. After about a minute, I let out a sigh of relief as I figured they were too far away to shoot me now. Since I can still walk now, you’ve probably guessed that they did never fired a shot at me.

About 10 minutes later we arrived at the Cave of the Patriarchs. There was a large unit of Israeli soldiers there (about 30). They provided security for this famous site. They were completely kitted out with machine guns, grenade launchers, mortars, automatic rifles, armoured personnel carriers and jeeps. They were doing running drills carrying their weapons. My friend wanted pictures with them. I took photos of him hugging young, smiling Israeli soldiers or they would pretend to be shooting him. After having a Palestinian pull a gun on me earlier, I figured I didn’t want the picture in my camera. Besides, I never used to be much for pictures.

When we went back to Jerusalem, we ended up on a bullet proof glass, tour bus. We left right from the Cave of the Patriarchs. That seemed the better way to go.

Now your Grandpa in Mizoram survived an entire career as a police officer in India. I know he experienced more dangerous things than this. I’m sure he could give you some great professional advice about staying safe. He was also the State of Maharashtra Police Pistol shooting champion. All the same, here’s an amateur’s take on things.

I had spent about two weeks enduring Palestinian violence. I had been hit with stones flung from slingshots (it hurts a lot). I had seen girls get hit and cry their eyes out with the pain. I had seen a huge fight between UN peacekeepers and Palestinians at the Damascus Gate (they were provoked by the so-called peacekeepers.) I had seen Palestinian men shout violently at young women for wearing shorts or eating during Ramadan. By the time, I arrived in Hebron, without even realizing it, I was now resisting their authority to order people around. If you point a gun at me, I’m not going to give you the satisfaction of watching me easily surrender to your will. You are going to have to order me to stop and raise my hands. You want to rob me? Walk over here and take my wallet. I won’t stop you.

It was stupid, but this is why young men do stupid stuff and get themselves shot. Push a man around long enough and he will resist. Imagine if you lived in a place where you spent your whole life like that. You won’t easily cooperate with whoever is holding the gun.

It was even more foolhardy for those two young guys to point that gun at me. There were 30 Israeli soldiers eager, trained and completely outfitted to kill them. They just needed a good excuse. Pointing a gun at an unarmed tourist would be more than enough. Young men marking territory and claiming authority over the actions of others is another good way to get shot. There’s always a bigger bully with a bigger gun.

I spent my teen years and big chunks of my twenties sleeping in a bed with a .22 rifle and a 30 gauge shotgun beside or under it. (Cue the dueling banjos music.) Strangely I never shot those firearms or any other gun. Killing rabid or nuisance animals was grandpa’s job. My grandpas and uncles hunted a lot. I’m not afraid of them, but firearms are dangerous tools. I remember in grade school, looking at a schoolmate’s leg that had just had a .22 bullet pulled out. He got shot by a hunter carelessly firing into the air. That sort of thing happens around guns. Geography affects violence. It doesn’t happen randomly. Our old neighbourhood here in Pickering had become a much more violent and dangerous place than where we live now. Our family had no reasons to justify us to keep living there. When we had finally come to accept that fact, we moved. Hebron is one of those violent places in the world. I thought it temporarily had become peaceful enough to make a trip there worthwhile. I was wrong. I ticked a few things off my sightseeing list, but it wasn’t worth the risk.

Those who live by sword tend to die by sword, or at least see more death than usual. Those who carry firearms make themselves targets for violence. Often the good done by being a police officer justifies the accompanying risk. Before you decide to bear arms, think long and hard whether what you are doing is worth the risk.

My whole encounter in Hebron involved two young men reading each other’s faces and doing a risk assessment. We listened to the other’s body language and heard no real threat. It ended well because we correctly assumed that the other posed no risk to body or ego. I never yelled for help. He never shot. We both walked away alive. Ezra, buddy, because of your autism, this will be extremely difficult for you. Listening to non-verbal communication for many people with ASD is practically impossible. Atypically, you do have some ability doing this. However, don’t let this fool you into believing you will be good at in a life or death situation. Every year many non-threatening people get killed because their risk assessments get botched and communication breaks down. It’s not even easy for trained professionals. It’s much more difficult for amateurs.

There are two main strategies, Ezra, you need to use to compensate. First, you need to use your words. You need to vocalize the words, “I’m not a threat. I have autism.” Repeat it often. Someone may misinterpret your actions as a threat or a challenge. You need to say it out loud that because of your autism, you are not challenging them. Even teachers and their aides need to hear it. You are not being oppositional or confrontational. You just need some extra understanding.

Second, don’t go to places like Hebron, unless there’s some great purpose for you there. Taking a few pictures doesn’t count as a great purpose. It is far easier to avoid complicated or dangerous situations than it is to get out of them.

This letter is already too long. I will stop now.

Love,

Dad

 

 


tim77