We experience the world through touch. It’s how we connect with people. When you love someone, you hug them, you kiss them, you hold their hand. Now imagine a world where you can’t touch anyone and no one touches you. That’s where I lived for eighteen years. I became an invisible man.
My name is Andrew Gosse, and I live in Paradise, Newfoundland. When I was seventeen years old, I felt invincible. I was about to graduate from high school and was going into the army. My goal was to become a peace keeper and represent my country.
My hopes when joining the army were really to be all that I could be. Wearing the uniform, it really meant something. It meant that I was a part of something bigger than myself. When you travel together, work together, sleep together, eat together – it becomes your identity by and large.
I had family, friends, I thought I would fall in love, get married and then I got diagnosed. I was getting ready to go on my first, we used to call them ‘callouts’. When you’re in the army reserve and you’re going away for any period of time, it’s almost like a contract. I was getting ready to go away and I felt a little scab on my left elbow. It was maybe the size of my small fingernail. It wasn’t normal.
My family doctor has known me for a great many years. So when I went in and he looked at it, it was very matter-of-fact. There was no drama, he just looked at me and said “Oh, that’s psoriasis.” I said, “Okay, make it go away” and he said, “No that’s chronic” and I honestly didn’t know what chronic meant.
Psoriasis is an auto-immune disease. It presents itself predominantly in the skin.
With psoriasis, that process is constantly building up and building a scaly layer, and eventually it will leave just raw skin underneath.
Heart breaking, to see your son like that and not being able to do something for him. Andrew used to hide psoriasis by wearing long sleeves.
I wore hats. There are times I used to put band-aids over my fingernails so people wouldn’t see it.
Because a lot of people are afraid, they think that this is really contagious.
I would go to work for the day. I would be in physical agony most of the day. The blood and the leaching from the lesions would soak into the clothes, my socks. I would come home; I would have to tear that clothes off. So you can imagine the amount of laundry.
I was always quite prepared to serve my country both domestically and abroad. The United Nations were looking for people with the qualifications that I had. To do a six month peace keeping tour in Cyprus – I applied. I had quite a good opportunity to go, but when I had the medical done they saw that I had psoriasis and I was told at that point that it precluded me from participating.
All it did was really piss me off, that a disease that I have absolutely no control over has caused me to lose what I saw, as a great opportunity. I left the army in 1994. That set me back, because up to that point it had just been a personal struggle that I was able to hide and contain. You give up doing treatments; you give up looking into the disease, not because you’re disinterested in yourself, but you’re afraid to hope again.
I met Andrew at Tim Hortons. I was working there during university.
I mean I fell in love. Boom. Wow. There is the most amazing human being ever.
We just, I don’t know I guess we kind of hit it off right from the start, and we had a lot in common, so it just, it was natural I think for us to just, share everything.
I spent a lot of time preparing her for what psoriasis was, what it looks like, what it feels like.
There was never a thought of “Well you know, I can’t deal with this, I can’t be around this.” It was part of who he was so I mean it was, there was no, you know , if I wanted to be with him that was just going to be part of it.
She has never wavered, not an inch – which is only part of what makes her remarkable.
We were engaged, I think it was three months later. Then it was a year after that when we got married.
It is very difficult to feel comfortable, physically, romantically but you still want to be together as a couple, as husband and wife. I just started to recede.
I know it was always dark. If he had to get up in the night, it was never turn on the light.
She had always been completely okay. It was not off putting to her. She would always reiterate, you know “It doesn’t bother me.” and I said to her “No, but it bothers me. I don’t want to see it.” At night, I used to have to scratch myself pretty well all over what I could reach with a steel comb or a brush, to peel away the scale, and pour vinegar or lemon juice over it and make the skin burn. And I know that sounds very strange, or even sadistic, but you can sleep if your skin is burning – you cannot sleep if you are itchy, it will consume you.
There was one morning, he woke up. I remember looking over and he was sitting on the side of the bed, kind of slumped, like dejected. He was upset.
It’s probably my lowest point. She asked me, she said “Whats wrong?” and I was just, I was defeated. Disease wins. I just said “I’m tired of being alive. I’m done.”
It’s horrible. It’s horrible to see someone that you love, hate the fact that they’re still alive, because of their skin. I mean it’s –
Disease is a side effect of being human. We are all a patient of something at some point. Hope is a very, very tenuous place to be. Once you’ve had it removed a number of times.
Dr. Gulliver came here ten years ago, and he had a bigger than usual smile. He said Andrew, there’s a new treatment coming down the pipe. I’ve been poked and prodded, I have had skin biopsies. I had nothing left to try and I had nothing to lose. So I was enrolled as patient ‘001’.
He had tried everything. If it was suggested as “This is a possible treatment…” then he tried it.
At first it was, you know “Am I just imagining it? Was it all in my mind?” He was almost afraid to say “I think it’s working!”
And about sixteen weeks later, I was clear. There’s times emotion arrives and I don’t even perceive it coming. It’s – but – clear, clear. It was gone.
He didn’t want to put on clothes anymore. It was like suddenly he got out of jail. He was free and he just, we went and did everything we couldn’t do up to that point.
Sometimes you need to re-learn how to live.
I used to be quite concerned, if psoriasis would develop in either of my children. And again, there is always the possibility that it could. Years ago, I would have been terrified. The treatments that are available to us now I mean, they transform the landscape. It changes the game.
Oh Andrew, how are you?
Nice to see you. Welcome.
Good to see you, thanks.
How’s everything going, psoriasis still doing well?
It is doing exactly what we want it to do. Under control.
Andrew is probably one of the strongest advocates for psoriasis I’ve ever met. He has created a patient advocacy group, which has allowed many psoriasis patients to learn that it can be treated, it can be controlled.
What kept me going, even in the darkest time? Two things: my incredibly awesome and amazing and beautiful wife and hope that there was a light at the end of the tunnel.
Directed by NIMISHA MUKERJI
An award-winning director, Nimisha’s debut feature 65_RedRoses was one of the first official selections for Oprah Winfrey’s Documentary Club on OWN. Her second documentary Blood Relative screened in competition at Hot Docs ’13, and won audience awards in Vancouver, New York, and Paris (as well as 3 Canadian Screen Award nominations). Her short narratives include The Arrival Hour (winner of the Audience Award at TIFF’s Emerging Filmmaker Competition ’12), In the Deep (which broadcast nationally on CBC’s Canadian Reflections) and Beauty Mark (Official Selection Telefilm Canada’s Not Short on Talent Program Cannes ’13), which she co-wrote and produced.
Nimisha is currently directing for National Geographic while also working on a documentary feature entitled Tempest Storm for Super Channel and ARTE. Nimisha is an alumnus of TIFF’s Talent Lab ’11 and sits on the board of DOC National and POV Magazine.
What is Real LIFE STORIES?
Real Life Stories is a collection of documentary films about the impact of serious medical conditions on people’s lives. Directed by some of Canada’s top documentary filmmakers, each film brings a unique perspective of a patient’s own journey to healing, coping and seeking wellness. The intention of the series is to empower the voice of patients, raise awareness, understanding and empathy for those living with chronic disease. The 1st series focuses on Psoriasis.