What Defines Us
I hope that my friends and family will take a few minutes to read this. I have a few important sentiments to relate to the people I love, and the people that I like but maybe don’t know that well yet too. ;-) It has come to my attention that for many people the word “awareness” can be an emotional hot button, and I have always had a goal to change the face of such campaigns. I just want to share some realistic views about who I am and what motivates me. I do not consider myself to be defined by my illness. If I allowed that, no one would ever see me out of the house. I know people that live that way. I can’t do that.
Right at the top I want to state that Lupus is not the only thing I am interested in talking about. Right this minute, I am talking about it more because it is Lupus Awareness Month. This is our time to work harder and get information out there and attention for the LFA, and it is important because we need funds to research, and we need support. Because of that, I put a 2 or 3 things a day on my profile – give or take – to that end. If it bothers you, unsubscribe. I wish you wouldn’t, but it’s your choice. To those that have been supportive and good listeners, and unafraid to discuss it with me, I bow humbly and thank you. To those that seem afraid to ask me questions… STOP IT. I am open about it for a reason, and I am not afraid to talk about it or answer any serious questions. To follow that up however, I must point out that I have always had very real interests that haven’t gone away. I love the outdoors and have camped and hiked since I was a child, and I have studied wildlife and conservation. I even had my yard set up as a wildlife habitat when I lived in Banning, and documented the great variety of species that visited and lived on my property. There is a lot more in Southern CA than many people even realize. I love to swim. I have been a dancer, though I had to take a step back from it for a long time now. I have a singing voice, and used to go to Karaoke with my parents every week when we lived close enough together for it. I am an artist – I work with pencil and water color mostly. I am a traditional crafter (Cherokee nation), so I do beadwork as well when I can. I am also an Intertribal dancer – Southern Cloth, and a Stompdancer. I have studied herbal/natural medicine, nutritional health, pathology, medical terminology, and a smattering of other things. Those are the things that define me, along with my experiences in life. The illness is something that I carry, and live with, and help others deal with as much as I can by running support networks. It is something that I work hard for awareness about because many people need it. It does not however define the person that I am today.
I am very pro on not living your life from a recliner or your bed unless you’re totally incapacitated to an inability to get out of it. Many years ago I remember Richard Simmons telling people that were severely overweight and struggling, to do whatever you are able to do where you are at. He said if all you can do is raise your arms, then raise your arms. At my lowest point in 2006, when I lost half a year to what was then an unknown ailment, I was unable to walk. I couldn’t stand up for more than a few seconds at a time. What pulled me out of the mental state that I sunk to after months on end of this was that statement… Do what you are able to do. It took a lot for me to back out of the medication cycle and find a way to manage the pain and recover. I have slipped back into that severe pain over, and over, and over since about 2001, and it is what keeps me from seeing people sometimes. When it happens, I can barely walk even in my house. It does not however take me down mentally anymore, because I know that when the flare ends the pain will subside as well.. and I can go back to a semi-normal routine again. It is not an end-point for me. It is not “where I live”. I live with it, but it’s not who I am. I try to convey to other Lupus patients that there is always hope, and it is not reserved for the hope for a cure. Hope is about each day, moment by moment, and taking advantage of each one that is such a gift. It’s about sharing your time and energy with people that you love, and savoring it.
I am reluctant to convey certain lines of thinking. I see some posts by other Lupies that are angry. Although I understand why, I can’t allow that in my life. They feel slighted by both their disease and the way they are treated by others, but to hold onto that rage will only eat them up. Ignorance is curable, after all. So the angry posts about not judging me, and you haven’t walked in my shoes, won’t come from me. I have even seen some wishing that others could experience what they are going through, and I am horrified at the thought. I literally would not wish this on my worst enemies. No. There is no point. Instead, I would rather focus on curing ignorance and helping myself walk through my days the best way that I can.
Being an activist of any sort comes with pitfalls. This thing of people being afraid to talk to you is just one of them. Another is that every time someone finds out you have Lupus, and they don’t know much about it, you end up having to explain to them that it’s not contagious. It’s genetic. Then invariably someone eventually asks you if it’s terminal. There is no short answer for that. Let me just say that birth is a death sentence. We all die. Some know better what will be their end, or maybe even some idea of when.. but we all die. Do I believe that eventually some complication of this disease will be my end? Not really. I believe that something will, but I don’t have a clue what – or when. Heck, it could be my heart one day. It’s already damaged and that could be because of the Lupus, or it could be something else. They don’t know. It could be a Mack truck. I don’t know! (I’m smiling wryly here.) No one knows. Even if you get a terminal diagnosis, you don’t know if it could end up something else before it gets to that point. We are all on mysterious paths in life. That said, my illness is fairly well managed now. I fought for that, and I fought hard. I will simply continue to do that because it is a part of my own path. It’s that simple.
I may write a descriptive soon of what my day is like. Not today. Today I simply want to say to my loved ones of many backgrounds that I appreciate those that have stood by me over the years in their individual ways. I want to say thank you to those that have taken the time to actually ask me about this “Spoon Theory” I mentioned. Your attentiveness is precious to me. Your genuine interest has been heart-warming. Believe me, it is not that common.
A few have chosen to make their own stories into their own reality. It makes me sad, but I have to move on from it. A few have decided that they know all about me and my life, and they may have read a paragraph and thought themselves well-educated. In some cases, I have been left in the dark for years as to what the problem is between us. It makes me sad to lose what I thought were friends, but I cannot change what another chooses to believe. All I ask of people is to talk to me when they have a question. Don’t engage in idle gossip and presumptions. It’s really unbecoming.
That’s all for now. All my love to all my loyal friends. You may not know how much you have done for me, simply by being there or smiling and making me laugh with jokes. Laughter is amazing. You can never have too much joy in your life. I may not be able to see you as often as I’d like (face to face), but as my sweet grandmother used to tell me.. rest her soul… “You’re thought of a lot more than you are seen.” You can believe that is real.
Posted on May 6, 2013, in General Blather, I Am That Wolf, Things That Make You Go... AAAaaaauuuggghhh!!! and tagged Autoimmune, Autoimmunity, Awareness, Chronic Illness, Fibromyalgia, Healthy Living, Inspiration, Lupus, Lupus Awareness, Motivation, Real Friends, Reinventing Yourself, Systemic Lupus. Bookmark the permalink. 4 Comments.