Potty Mouth Renae Clare Multiple Sclerosis Interview

Potty Mouth Renae Clare Multiple Sclerosis Interview

The National Multiple Sclerosis (MS) Society reports there are approximately 400,000 people with Multiple Sclerosis (MS) in the U.S. today-with 200 more people diagnosed every week.Renae Clare is one of these 400,000 who does not let her condition bring her down. She chose instead to share her story of living with MS for 40 years in her new book, Potty Mouth: A Woman Disabled with Multiple Sclerosis Bravely Meets Life's Challenges with Courage, Wisdom, and a Profane Sense of Humour, hoping to inspire others living with the disease.

"I live life in a wheelchair and yet I am optimistic about the future and focus on the things that I am able to do, and not on the things that the disease has taken away," Clare says about why she wrote her book. "My mission in life is to help as many people as possible."

Potty Mouth began as confessions and thoughts during therapy sessions when Clare was going through an emotionally devastating divorce three years ago. Her doctor recommended writing things down as her MS often made speaking difficult, and as Clare continued this form of therapy she realised she had a lot to share.

Charming and humorous on paper as well as in person, Clare offers insight into dealing with a life-altering disability, enduring family hardships, and all the while picking up the pieces and finding a purpose in life.

"I want people to feel inspired, to feel that there is hope at the end of a long dark tunnel, to know that going to some sort of therapy will be healing and will help them get on with their life and find some hidden talent and purpose within," Clare says. "I want people to feel hope."

Renae Clare grew up on a farm in North Dakota and lived in New York for 37 years before moving to Carrollton, Texas where she now lives with her daughter, and has a son who lives in Houston. Clare was diagnosed with Multiple Sclerosis in 1972 and has been going to therapy sessions since 1998, from which she gained much of her influence for her book.

Potty Mouth: A Woman Disabled with Multiple Sclerosis Bravely Meets Life's Challenges with Courage, Wisdom, and a Profane Sense of Humour
Author: Renae Clare
ISBN: 9781468562408
Price: $19.95

Interview with Renae Clare

Question: Why did you think it was important to write Potty Mouth?

Renae Clare: I started writing Potty Mouth for my therapy as my psychotherapist recommended that I put all my writings together, in a book and then get it published. My psychotherapist felt very strongly that my writing would help many people and I came to believe that also, as time went on. Potty Mouth is all deeply personal and I had to find the strength to write it yet now I am thrilled that I could help other people and that makes me very happy.


Question: Can you talk about how you initially were diagnosed with Multiple Sclerosis?

Renae Clare: I was 22 years old when I was first diagnosed with Multiple Sclerosis - I had trouble with my eyes and then after two years I began to get other symptoms such as tingling and weakness.

Question: How long did it take to diagnose and what test confirmed MS?

Renae Clare: I went into the hospital for three days for tests including blood work and finally a spinal tap which showed the definite diagnoses of Multiple Sclerosis which was devastating. It is life changing when you get a diagnosis, such as that.


Question: What types of symptoms do you experience from MS?

Renae Clare: I am now in a wheelchair and I'm on disability (payments). Multiple Sclerosis started out with the tingling, numbness and eye issues. From there I had a lot of weakness and numbness on my left side. Fatigue is one of the major symptoms of Multiple Sclerosis, 85% of people with Multiple Sclerosis have fatigue and depression. I have pain often and something that we call 'brain fog' which is where you just can't think clearly, I could be talking and then all of a sudden my thoughts are cut off which also affects speech, where I may not pronounce words or speak correctly.


Question: How does MS affect you on a daily basis and what treatment do you take?

Renae Clare: I experience all the symptoms above of tingling, numbness, pain, fatigue, depression and 'brain fog' on a daily basis. I take medication for most of the symptoms (pain, tremors or spasticity) which does alleviate some of the symptoms. The medication helps me get through my day, it definitely makes it easier.

I do exercises every day with machines that help exercise my arms and legs. I also do psychotherapy and my psychotherapist is so fabulous, I began psychotherapy six years ago when I was experiencing a very deep depression after being in hospital for eight months and at that time the psychotherapy was wonderful. I needed somebody to talk to, somebody I could say anything to because I needed to get my feelings out. I believe it's ultimately important for those with Multiple Sclerosis to be able to express themselves although it is hard to talk about disabilities especially for those with Multiple Sclerosis as you don't want to be a burden, to anyone; which is why people with Multiple Sclerosis never talk about their symptoms or diagnoses at their work especially because they're afraid of losing their jobs or having people look at them differently.

I hid my disease for a very long time; I wanted to keep it all inside but it is important to get it all out. For me, writing has been phenomenal because I can write my thoughts down and they come out very clearly as when I am speaking I don't always believe I make sense which is very frustrating.


Question: How has the condition developed over the past 40 years?

Renae Clare: The symptoms that I had in the beginning went on and then for 10 years I had no symptoms at all which is called relapsing remitting for Multiple Sclerosis. After a period of time I began to stumble and fall a lot (I needed to use a cane) and the Multiple Sclerosis had developed into secondary progressive, which is where I am now, where I don't have periods of time where the disease goes away, my Multiple Sclerosis is definitely progressing.

I began using a cane and then my walking became worse so I was using a walker and now, eventually, a wheelchair.

I hate the word 'disabled' and I try not to look at myself as a disabled person because that is an ugly word! I push as much as I can, sometimes I push a little too hard and then I become fatigued and feel like crap the next day - it's a fine balance between what you can do and what you want to do.

Question: What advice would you give someone who has recently been diagnosed with MS?

Renae Clare: It breaks my heart every time I hear of someone getting MS because it is a really horrible disease as it takes your whole life and flips it upside down and you can't do so many of the things that you were able to do; I used to jog 3-5 miles a day and now I'm in a wheelchair!

As time and symptoms go on, adjust to those as much as you can and always keep a sense of humour! Also, surround yourself with kind and motivating people, if someone brings you down or dwells on the negative things get them out of your life so you can be as positive as you can.

The Multiple Sclerosis Society have headquarters in all countries; I recommend contacting them (www.msaustralia.org.au) as they have marvellous websites with lots of information for people who are newly diagnosed. I also recommend reading books about Multiple Sclerosis whilst also writing; I love writing and I think others should write down what their feeling in a journal which no one else ever has to see.


Question: Why was it important, to you, that Potty Mouth was humours and inspiring?

Renae Clare: When I started writing I didn't originally start out trying to be funny or inspirational because it was for my own therapy, I think it's because I am that way as a person and that comes through my writing. A sense of humour is very important!


Interview by Brooke Hunter