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.