About a week ago I had a phone call from my sister telling me that she was very upset about some of the things that I had written in tmy memoir Potty Mouth, about a woman disabled with multiple sclerosis. As in any true life tale there may be things in the book that are hard for some people to read, although they are true. Bethany feels that somehow someone in the future is going to trace what I have written the book back to her business which I feel is crazy. She wants me to change my Facebook page so that in no way shape or form anything can be traced back to her business name. She is Nuts! Seriously, this woman has problems and none of them have to do with me or can be traced back to my Potty Mouth.
So I have written this letter to her. I haven’t decided yet if I’m actually going to send it to her before I make some changes perhaps calling her a bitch and to mind her own fucking business.
I was very sad and hurt when you called me last week and the first words out of your mouth were to tell me that you thought that my book could hurt your business. You said all the things to me even before you asked how I was or gave any care whatsoever about how my book is doing. You were very selfish and thought only of yourself and how this is going to affect your life and you expected me to change my life and what I have going on in order to suit something that we have no idea what is going to happen in the future.
First of all you only read a couple of chapters in the book and by the end of the book people see a woman who faced great hardship and yet with my spiritual beliefs and strength I got through all of that and by the end of the book I change into a strong and courageous woman.
I’ve been giving this a lot of thought and now I see that I just shoved all of my feelings down to the bottom of my toes in order to make everything okay with you. I have made many relationships on Facebook and on Twitter and for me to now just slice off that part of my life which I really enjoy and just get rid of because it has made you uncomfortable. That I would be willing to just smother a part of me just because someone asked me to. I cannot and will not do that. That is just not fair to myself.
I don’t think you understand that because of MS I rarely get out of the house and so my social networks have become important to me. Not only for the social interaction but also for my book publicity actions. It’s actually hard work and a job and we just don’t know what’s going to come out of the book. It may turn out to be a drop in the bucket or might turn out to be grand. Right now nobody knows and for me it is important and from the feedback that I have gotten, people really loved the book and everyone else tells me how inspirational it is.
I too, have started a business a tiny tiny tiny business named Renae Clare and I am proud of that. I took something that was haunting me and I turned it into something real and good. Something I can hold in my hand. And I really don’t have the time or the energy to be worrying about what effect it’s going to have on other people when in fact I believe it can did nothing but good.
I am 61 years old and who knows how many years I have left on this earth so I say kudos to me to be doing something at this stage in my life that affects people and not to just fade into the sunset. It’s not who I am and it’s not what I want. I am not looking backward, I am looking forward and I spent every day doing what I can to connect to the world and not to just be a woman in a wheelchair with multiple sclerosis who cannot do anything. I am not a victim. It is not what I am.
If you should finish reading the book you will see a very amazing and strong woman and if someone should actually put my name with your name you will be proud to say yes that is my sister and isn’t she great? I am so proud of her!
Second of all you have no idea how much work I have put into this and what a lifesaver it has been for me. For me to have found a purpose for my life, a talent that was latent, and a way to help other people brings me great joy. It keeps my mind active and takes my mind away from my physical problems which are many. I only have use one of my limbs; fortunately I am right-handed so I can use my voice recognition program in order to write. It is a blessing. Without having written Potty Mouth and found the community of other people with MS and other disabilities I would truly be alone.
One of the symptoms of MS is what we call brain fog. Because the messages from the brain don’t get to the right place or don’t get there at all speech patterns change, the wrong words come out of my mouth and there are lapses in speech patterns. So one of the things that happened when you called is that I could not get my thoughts straight, my words were not coming out the way I wanted them to and my emotions took over and I was blubbering like a baby. Instead of finding the strength that I really do have I became a victim and I allowed you to talk down to me. I would never let anyone else talk to me like that and I reverted to old patterns of letting someone else’s vision take precedence over my own, not letting myself belittled and just trying to make things all better for someone else instead of standing up for me.
Writing the book which came from therapy sessions really made me see how my self-realization was formed and how I had to learn to be a strong person. This is a very hard letter for me to write. I’m trying to get my thoughts straight here so that you read this and see my intent is for you to see that I am a strong woman and for you to be proud of your sister and my intent was not to harm you in any way. You know I love you and yet my actions cannot be cut short because of what someone else has told to me. I just can’t let you hurt me like that and worry and fret and take so much time being upset.
I know you are running a business and you are very busy. I am so very proud of you. However, that’s not an excuse to me and that hurts me. You are only a couple of hours away and that is just awful that you don’t come to visit Traveling is such a bitch by now and MS has really messed up my life and not being mobile. It is something that I have adjusted to and just another thing that I have built my life around. And I am not writing this to make you upset or angry or make you feel bad. I am just stating the facts and telling you how I really feel.
I think if I were to say these things to you in person it would be a lot better and to say this over the phone would turn into a mess which is exactly what I don’t want But I do want is your respect and that you show up once every couple of months so I can hug you and tell you how much I love you.
Remember, that we are not going to be around forever and if there are things left unsaid or issues between us you would have to drag that around with you for the rest of your life. And that’s a terrible way to live.
Call me when you read this letter. We need to talk. I can’t stand having unsaid things between us.
With all my love,Your Sister, Renae
Below with a link for the book that I have written, Potty Mouth, a memoir of a woman disabled by multiple sclerosis. You will also find on this site a radio interview that I have done where you can hear my voice and find out a lot more about me and my Potty Mouth.