Your life with leprosy
You live in a small town in southern Ontario. You love your family, your home, your friends.
You are struggling to find regular work. Each day you have to make a decision about whether to spend the money you have on food, electricity, or clothes for your kids so they can go to school without being teased or sent home.
You are living on the edge.
One day you notice a small patch on your arm it’s strange but with everything else you have to cope with, you ignore it – it’s probably nothing.
A few months later you realise you now have 8 of these patches over your body. And now your hands have started feeling weak and even numb in spots. There are so few jobs offered in town and you are finding it harder and harder to compete. If you can’t keep up with the work, they’ll stop offering it to you – so you hide these mysterious patches and your shaking hands and do the best you can.
You are terrified.
What if these symptoms get worse? What if you can’t work at all anymore? What if the employers and other worker notice the patches?
Your biggest fear is that your family will not survive. You have to make a choice – do you use the little money you have saved to find treatment, or do you leave the money with your children so they can buy food.
You decide to leave the money for food but as a result you have no money to pay for gas or buy a bus ticket to get to the doctor. You have no OHIP because you haven’t been able to renew your card. You have no money for medicine. You find a “guy” in town who agrees to give you a loan under horrendous interest charges and threats if it’s not repaid.
Then you begin to walk. You’re hoping the nearest town has a doctor who can help. After 8 hours of travel, the sun has disappeared and you are still walking. Now it’s raining and your feet are covered in blisters. The frightening thing is that you can see the severe damage, but you feel nothing.
You hitch a ride in the back of a truck.
The next morning you arrive in town. You’re exhausted, but hopeful that you might find out what is wrong. You go the walk-in clinic, and wait. For three days you don’t move from your spot – afraid your name will drop off the list. People come and go, but no one calls your name.
When it’s finally your turn, you can see that the doctor is busy. She’s been working for many hours now and is visibly exhausted. She says the patches are just a sign of some skin infection, so she tells you to go to the pharmacy and buy an antibiotic cream.
You leave the clinic, exhausted but hopeful that you will make a full recovery. You spend the last of your money on the cream and begin the long journey home to you kids.
After being home for a week you realize – the cream does not work.
You haven’t repaid the first loan – there is simply no money left to try another doctor. The patches begin to cover your body, and your start to lose the sensation in your hands and feet. You can’t work anymore. Your hands and feet are covered in cuts and burns – they’re becoming infected but you don’t address them because they cause no pain.
The wounds begin to smell.
Your friends and family are so scared that you will make them sick. They ask you to stay away. Your kids do not want you to touch them.
One day you are sitting on the street, begging for money, and someone from Toronto sees you and tells you that they think they have seen someone with your disease before. They believe there is one clinic in all of Canada that can treat you.
But it is in Ottawa – very far away; farther than you have ever been before.
You spend every day and every night begging for money, and have just enough after several months to get a trucker to agree to let you get in his truck in return for all the money you have.
It takes 6 days of driving over back roads and through dangerous terrain, to arrive at the one place in the whole country where you can be treated… but you have lost everything – your home, your family, your friends, your body, your hope.
Now you know how it feels.
All photographs by Tom Bradley.