I Told You I Was Sick…

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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.

Hi Bethany,

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.

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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.

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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.

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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.

http://www.thepottymouthbook.com

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5 Responses to I Told You I Was Sick…

  1. A Dog With Fleas says:

    So sorry you are going through this. It is hard for other people to understand and I am glad you stuck up for yourself in your letter. If it makes you feel better, you should send it and hopefully will make her understand what you are going through.

    Good luck to you my friend!!

  2. renaeclare says:

    Thank you so much! Your comment made me feel better and, yes I did send a letter. I haven’t heard back from her but time will tell. How are you doing You are right, it’s always better to speak your mind rather than to let it sit and fester. I have been in such a brain fog lights the and I really have to let things settle them in a little bit before I send anything that could stir up trouble. I’ve been seeing my psychotherapist regularly and with a little help I’ve been able to see a little more clearly what is keeping me back and finding my strength. Anyway, I always appreciate your notes. You are a wise one.
    Renae

  3. Kimmie says:

    Ranae, it takes so much courage and strength to face a disabling and pain filled exsistance, and still decide to grow as a person. It is so much easier to just hold on to anger, while expecting and accepting pitty. I believe family is the hardest entity to try and communicate your feelings to and also to stand up to. The strain our shortcomings puts on our relationships make hard relationships harder, which seems unfair, but is usually the case. Unfortunately many will never see the strength we live with, and may feel put upon by our frustrations, not relizing they only live with their own reactions while the one that lives ill faces an abyss of emotions and frustrations. I too struggle with being able to tell anyone how I feel, and sometimes feel unworthy of expressing myself, but we are blessings only if we choose to share the real us. Your sister may realize how wonderful you are after reading your letter, or not until this disease takes you from her, or possibly never, but the number of lives you will touch are immeasurable. Thank you for your brave words, and allowing others, including myself, to feel slightly less alone. While finding the strength to face another day.

    • renaeclare says:

      Thank you so much Kimmie
      your reply has meant so much to me and yes I am going to send that letter. I had to let it sit and stew for a while not wanting just to rough the pot and make things worse. But I really think it will make things better and open up a line of communication with us even if it starts out on shaky ground. My psychotherapist told me that many people run into this kind of situation when they write a book and that it really does open up avenues of really getting to the heart of things. Not always pretty and yet all was necessary if you want a relationship to grow and not just be stuck in the past. And I don’t want to be stuck anymore which is why I wrote the book in the first place. Your words are very wise and I felt that you were right there with me. Please keep in touch. You said when I needed to hear, some words of strength and compassion. Thank you, thank you, thank you.
      With love,
      Renae

  4. Trudy says:

    Wow, you have written words that I would love to send to my sister. Unfortunately because she is so self absorbed she would not read it. She has never asked me once how I was doing… I gave up I do not speak to her any longer, not that she ever replied back any way. It amazes me we have the same parents.

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