Last week, when I shared my post, I felt empowered. I felt like I had faced my fears by writing about the thing that scared me the most. I realized it wasn’t about how people reacted about what I had to say; it was about having the courage to tell my story. Right away, I went to write my next post. I had a rush of ideas about how I would write about my anxiety and I knew just how I was going to do it. I even wrote a first draft of that post. I am going to have to save that draft for another time.
In the last few days, I have thought a lot about about having a voice, speaking up, and advocating for yourself. I’ve been contemplating what that really means. Having a voice means you are making the choice to take on change, to be responsible for your opinions, desires, and facing the fact that NOT EVERYONE will agree with you. When you don’t use your voice, you still have a choice. You are choosing not to participate in the conversation. If that conversation is about you, you are giving others the right to speak for you and make decisions about your life.
For some of us, it is hard to make a decision, stand behind our words, and have the courage to speak up. Trust me, I am extremely familiar with this difficulty. Most times, I have a hard time sticking with my decisions about what I want to do for dinner. When it comes to my health and well-being, I have no problem speaking up about what works for me and what I will and will not accept. This is my personal victory. I see what I want, research and gather information, and develop a plan, and try to implement it. While the plan might not work out, I know the key to finding my eventual success is to keep going. These actions are a living example of the SPEAK model of self-advocacy I developed to guide myself and others to lay the groundwork and create a path for action as a result of having the courage to speak up.
This week, I experienced feeling like my voice was tested. I felt like I was being told how to feel. I was told to feel angry about cancer and like I had been cheated, not given options, and had been placed in the minority. The thing is, I don’t feel or think any of these ways about my healthcare. It is insulting when an organization or public figure says what they are saying represents the entirety of a group. I have a feeling in today’s political climate, most people have felt this way in one form or another. This is not about those politics. This is about making the choice to be heard and following through with that choice when faced with oppression.
NO ONE has the right to tell you how YOU think or feel. That is the wonderful thing about our personal thoughts and feelings. They are always ours. Will they be challenged? Yes! Will someone persuade you to think or feel a different way? Maybe. Something awesome is you may even change your mind based on new information. The beauty is it is YOUR CHOICE. Because thoughts, feelings, and opinions are internal and personal, we don’t give those up. We do however, run into times when what we do give up is our voice. Whether we feel restricted, unheard, apathetic, or bullied, somehow we manage to lose our voice, or even give it away.
I am not saying people are not ever angry, cheated, not given options, and are placed in minorities. I am speaking for myself. I will not be told how I think or feel. I was doing just fine until I was told I am angry. I am not angry I had an experience with a life threating illness which might have been different than the experience of others. I was given options about treatment. I was treated with dignity. I was cared for by a team of professionals who made time to hear what I had to say and put in an extra effort to provide me with information and research to make decisions which felt right for me. I was given fertility options. I was heard when I said I was done receiving chemo. This was respected and my treatment ended. Some of this was the good fortune of having a team of excellent professionals. A lot of it was because I made it clear from day 1 that I would be my biggest advocate. I am not a doctor. I don’t have a background in treating illness. I highly respect the people who do. I respect them even more when they recognize I am part of the team, I have a vote, and I can ask questions.
When thinking about speaking up and having a voice, the only thing frustrating the hell out of me right now is that my voice about self-advocacy isn’t loud enough. I have not quite figured out a way to get in touch with others to provide my services to strengthen their voices. I have very strong thoughts and feelings about providing others with education about how to SPEAK and to have the choice about when they want to do it! I have no interest in speaking for others. I am invested in the victory of seeing others speak for themselves. I want this so badly and I will use my own advice, KEEP GOING, and push through my frustration about my voice which is not yet loud enough to be heard. One day, it will come out LOUD and CLEAR followed by the echoes of others who have found a way to be heard!
Be Well and Be Heard
April 8th was my birthday. I love birthdays. I love them even more now that I have made it through some life threatening stuff. Some people hate birthdays. For some, it is because they really don’t like the attention. For others, they don’t like feeling old. 35 seems like a milestone…I feel that way about all of the multiples of 5 birthdays. I’m not sure why. This birthday kind of feels like a re-birthday. I have come so far and grown so much over the last year.
In the past 18 years, I have developed a skill I call resourcing. To make it this far, I had to pick up so many tricks, trades, comforts, supports, and a little of the magic. Not everything I tried was a success. Some of it was ridiculous. I probably won’t go into the ridiculous. My job now is to resource others: specifically, to model resourcing and teach people to do it for themselves. I do this using the 
Chronic Life 