Editor’s Note: Murray Rose, PRP patient snf unregistered curmudgeon. Onset of PRP symptoms in August at the age of 66. Currently lives in Surrey British Columbia with his wife, Carel and a chainsaw. Murray has been one of the “Three Amigo Administrators” serving the 2,000-plus members of the PRP Facebook Support Group, a.k.a. the Land of Chat. Having lost one of our Amigos we will have to battle over who gets to control the “Tierney Delete Button”. But, that’s another story to be told.
PRP history will remember Tierney Ratti.
Tierney’s name will be remembered with the likes of James Shooter, who in 1828 became the world’s first patient with what the medical community would eventually call pityriasis rubra pilaris including Marie Gillaume Alphone Devergie, who in 1856 published the most complete description of PRP up to that time. And Ernest Besnier who, in 1889 published a 120-page article that described PRP, and Dr. W.A.D.Griffiths who in 2003 delivered his now famous “Dowling Oration” in which he established, amongst other things, the prevalence rate of PRP at 1 in 400,000. And then a Facebook group, started by Jonah Grant-Scarf in 2008 and which Tierney Ratti who became the administrator of in 2013, to share PRP awareness, knowledge, advice and friendship and saw it become the world’s largest gathering of PRP patients and caregivers with over 2,100 members in approximately half of the 195 countries in the world. We all have our own memories of Tierney, for in addition to PRP awareness, knowledge, advice and friendship, she tossed in a large dose of love. She touched so many people. She and I had a friendship based mainly on four things:
✻ Coffee 20%
✻ Humour (humor) 30%
✻ PRP 30%
✻ Family 20%
✻ Coffee
When I first became an administrator of the Land of Chat Tierney and I chatted more than we normally did, usually every morning. Sometimes for a few minutes, sometimes a few hours. One morning she mentioned she wasn’t really awake yet and that she needed another cup of coffee. I thought I’d help her out a bit and searched Google for images of coffee and found one from a World Championship Coffee Barista competition. It was beautiful! A work of art! If it had been a painting hanging in the Louvre Museum of Art in Paris, France, coffee connoisseurs from around the world would have flocked to see it, smell it, drool over it.
Tierney replied “I like mine black.”
So back to Google I went and sent a really nice picture of a steaming hot, black coffee in a mug with sunshine and rainbows in the background. “I like that one, thank you.” I didn’t know then that she had set me up, but she had. The next morning when I sent her a “Good morning, how ya doing today?” type of message, she replied “????”. Puzzled as to what she meant, I replied in identical fashion. “????”. Her response, “Where’s my coffee?” And so a 3 year morning ritual began that I had to follow. If I wanted to chat with her, the price to do so was a cup of black coffee – no duplicates allowed. She commented on every one. If I forgot, well, she was quick to respond with “????”.
Humour (humor)
We laughed a lot. Sharing humorous images, stories, sayings, insults and barbs. I think she enjoyed the insults and barbs the most. For example, the spelling of humour (humor). I mentioned that she was spelling humour incorrectly. The correct spelling in English was from England and they spelled it humour. Her reply “We Americans have done that to a lot of English words. We have perfected them – shorter, easier to spell and type. So there!” She had a point.
Then there was the morning when I couldn’t get my computer to work. I spent at least 30 minutes fiddling, faddling – you know what I mean when nothing works with your computer? Everything I tried would result in an error message “Check your connections.” What? My computer connections weren’t the problem, they had worked the day before after all. After more unsuccessful attempts I finally checked my connections and guess what? Our house cleaner had cleaned my office the day before, after I had been on my computer, and had disconnected one of my connections!! When I was finally able to get onto my computer I sent Tierney her coffee and a message relating my tale of woe. Her reply was quite short and succinct – “Dumb Shit!” What she didn’t know was that I had been planning to create a “secret” FB group. One that cannot be seen by anybody but the members. I wanted to be able to test things or have Tierney’s thoughts on things that might improve our Land of Chat page. So, I immediately created the group and called it “T&M Dumb Shit Productions” – (T&M for short), and invited her to become a member. Her first post on the site was “Good thing I got top billing!”
I knew I had scored an insult hit because she would send me a screen shot of herself sticking her tongue out at me. I knew I had really, really scored a hit when she sent me a pic of herself with a fist, middle finger extended and upright, directed at me. When I commented that I didn’t deserve to get “the finger”, she corrected me by stating that she was just showing me she was doing finger exercises to help her type. Yeah, right! I’ve saved quite a few of those pics. Trophies of the insult wars.
She liked to try to stir things up, such as this remark during a discussion, “Women are typically better than men anyway.” Sometimes I’d respond, sometimes not. I knew when to pick my spots. She didn’t like it when I didn’t respond. “What, nothing to say?” “No comeback?” “You agree?” My silence was golden.
Our conversations were all over the PRP map. How we could improve this or that. What we were both going through at the moment. They also revolved around individual members who we knew were having a particularly hard time. Based on our own PRP experiences and knowing each other’s experiences, we would suggest to each other that we contact the member and try to give helpful advice or just listen to what they were going through. As Tierney said, “sometimes people with PRP just feel so alone. They have nobody to talk to who understands our disease and they should know they are not alone. “
Family
We got to know each other’s families – talked about them all the time. Quite often Tierney would proudly comment that she and Charlie had been married for 30 years. However, as all married souls will understand, there were a few minor, let’s say, “things”, she wished were different about him. “I told Charlie I’ve never been in this much pain before. He reminded me of childbirth. Sicko! LOL! “ Charlie did all the cooking and when Tierney was having GI problems caused by her Crohn’s disease, ingredients were restricted and not all that much to her liking. Tierney understood that Charlie was right in selecting the ingredients, she just wanted him to be wrong. I felt sorry for Charlie sometimes. He was just trying to help after all, but he was wrong when he was right and right when he was wrong. Confusing.
Tierney described son Alex as almost a “mama’s boy”, and she loved him for being that way. She couldn’t have been prouder than when Alex received his degree in Biomedical Engineering. I asked her what that was. She wasn’t too much help in explaining it. “I’m not really sure, but it’s got something to do with microscopes, immunology, cancer research and aging, I think.” She proudly loved Alex for that as well.
Daughter Samantha and husband Trey and their son Kane lived with Tierney and Charlie for a while and when they decided to move on Tierney understood things change and she would miss Sam and Trey, but Kane? The grandson who put the twinkle in her eyes? That was more difficult to accept. I really thought that Tierney might get legal advice on grandmother’s visitation rights when the grandmother couldn’t visit due to medical problems. She didn’t. I was surprised.
One image I sent Tierney, and which she really liked, was of Margaret Mead, the American cultural anthropologist, who is famous for, amongst other things, her message of inspiration and determination. “Never doubt that a small group of thoughtful, committed individuals can change the world.” Seems very Tierney-like doesn’t it?
I was going to close by saying that I have lost one of my best friends, but that is not accurate for I know that when I start my morning routine of grabbing a coffee (cream – no sugar), getting on my computer and logging onto our site I will hear Tierney remind me “I like mine black.” And when I go to the T&M site, I for sure know I will hear her call me a “Dumb Shit.” And I will smile. I haven’t lost her, for she will still be here.