I have to keep talking about this two-sided coin. I will advocate all day long for autoimmune and neurological patients deserving compassion, respect, and accommodations for their health conditions, and I am going to advocate for all of us to reach for as much as we can grasp in our lives as well. We live in a very strange zone that is unique to our very unusual health profiles. Most healthy people that we encounter are going to have a very difficult time understanding it initially. Some may never “get” the half of it.
I was very invested in watching Steve Irwin’s programs before his tragic death. His vitality and energy, and the sheer joy you could see it sparked in him to interact with nature the way that he did was just so amazing. He took chances that made me cringe at times, but I can’t be any more critical of…
View original post 3,468 more words
Over and over I have said that what I am doing is not easy. It is the hardest path I have chosen in my life, and every day is tremendous work, start to finish. Some days my impression is that very few people understand what that means . Hard paths are the best and most rewarding ones in life.
From childhood I have been an individual of deep thought and emotion. There are things with which I connect in ways that I cannot put into adequate words. Most of these are found in nature, whether it is adventure or beauty, and if the two are combined then all the better. It has never been in my nature to just disconnect from emotions, however I did determine a long time ago that if I do not do the work necessary to manage it, then it will be my undoing. There are times when that does not set well with others, and they do not understand why I am not being soft and sympathetic. They may think I am being cold when in reality I could be raging inside, usually because I want to scream for them to do something proactive to rescue themselves. Do you really not think I have been in your shoes? My case of Lupus might look mild to anyone just meeting me today (or anyone not paying attention). My true friends that have been there from day one, and made themselves trustworthy for my confidences, can tell you otherwise. I can accurately say that NONE of you were there when I couldn’t even stand up off the floor for months on end. That was before the support groups entirely. I went through that alone. It is part of what has made me the individual that I am today. Where do you think I built my foundation? At rock bottom, baby.
That ugly place I left behind.. the one full of agony, Vicodin, muscle relaxers, and despair… it’s been behind me since 2007. It was not however until two years ago that I really shook free of it and started to climb the rest of the way out. I know people that have never hit their rock bottom (though they may believe they have), and I know people that hit it and set up camp, and I even know a few that like me they stopped halfway up the ladder to enjoy the moderate reprieve. It’s still dark in there, and you don’t have to stick around. I am speaking metaphorically and I do that a lot. If it doesn’t apply to you, skip it. If your world is really dark.. then it probably applies.
Pain is inevitable. Sooner or later it touches all of us. Suffering is optional. I am going to keep repeating it until someone else gets it – and then some more until someone else does. If there are no military or good Veterans in your life, maybe you need to make friends with some. You can learn a lot from them, and I guarantee they will loyally be there to help you through the lessons. They’ve taken on the responsibility at it’s grittiest level to let themselves be torn down, rebuilt, molded, and perfected into beautiful strengths that only the most disciplined training can bring out of a human person. Professional athletes have to call on the same internal fire, and chose to drive themselves to new achievement for the intangible rewards it brings. We all have that choice, no matter what our level of capability is. We just have to choose to tap into it.
I grew up hearing the irritating words “the truth hurts” far too often. The philosophy was (I believe) abused. The truth is that the truth HEALS. It’s just that not everyone appreciates the mending process, and some are unwilling to accept that parts of it can be unpleasant, uncomfortable, distasteful, and even painful at times. Look at surgery as an example. Damage has to be inflicted in order to correct and repair, but it is sometimes necessary and when it is necessary then it is the right choice. Maybe something needs to be surgically removed from your inner workings, metaphorically speaking. When you hear a “cutting” truth, you react to it, and many chose to react negatively rather than to consider what is being presented. I’m sorry but I don’t have any anesthetic to present people when I am sharing concepts, and while I can mince words by choice, I tend to believe that for some people it dulls the message too much. Even in medical procedures, sometimes it just can’t be done that way. If you’re asleep when this message hits you, you’re not going to hear it. This is a wake-up call.
There is not a morning that I wake up and automatically want to get my shoes on and go for a jog. I have to stretch and move slow, and consider the messages my body is sending me. I have to converse with myself about what I want to do, what I am up to doing, what I need to push through, and what benefits and risks there are. This is after four years of treatment, the latter two including a fitness routine, two major surgeries in the midst, and a complete dietary overhaul for the last year. I will ALWAYS have to be circumspect with every move I make, every activity that I undertake, and every morsel that I consume. I committed to it because I decided that my life and living it was important to me – that I did not want to spend it miserable. This starts on the inside, dear ones. It is a decision. You cannot manifest a reality without first imagining it. There are days when I want to roll over and cry and go back to sleep. If I want the things that I desire to manifest, I do not have that luxury. This is MY choice about my own life.
Where there seems to be a problem is the reaction others have to cutting truths. If it’s not for you, then it’s not for you, but you don’t have to get upset about it in that case. Something unimportant in your world is a thing that you can walk by without a thought. If you reacted to it, maybe that’s what you need to be examining instead of getting upset at me or anyone else. When I share what I am doing, it is because I love other people enough to not want them to unnecessarily suffer. At no point have I presented anything as a cure-all for disease, but I do guarantee that you will see changes if you do the work. If you’re not willing to do that, then just admit it and drive on brothers and sisters. The hard fact is this… until you actually do what I have done, and make the sacrifices, the hard choices, discipline yourself, say no to “wants”, and stay consistent with it at length, then you cannot rightfully criticize those of us that are living proof of what can be done. You can’t have it both ways. Either admit you don’t want to do it, and accept where you are at, or make every effort that you can drag from the depths of your soul and give yourself a righteous voice with which to speak. If there were no successes, I would not share suggestions. I would not share the words of others that I admire, if I saw them to be hollow and unfounded. It is a basic truth that we are all individuals, and a disease like Lupus affects us all differently, but it does not discount the basic truths of how the human body functions. I promise you that 100% of the time how you treat your body will affect your outcome. You may not think it is enough, or significant, but it is still the truth. You are the one that decides whether it is worth the effort or not. It’s up to you.
There are people that I find quite inspiring to watch. Some of them are like me, and they have catastrophic illness to manage. Others are disabled physically in an obvious way, either missing limbs or unable to use them. Others still are amazingly fit and blessed, but they have been through horrific injuries that would make an ordinary person want to give up. Virtually all have been told NOT to do things, or that they would not be able to anymore, and they chose not to accept that prognosis. In the end, each of them has made the same choices that I did… that I continue to make. Life. Motion. Desire. Joy. Passion. Fire. Get some. Or don’t. Just don’t get mad at those of us that do. In embracing that you will be free.
It may be time soon for me to make a new video – one of me just talking to you about where I am at. Sometimes that reaches people better than plain text. You have not yet seen the changes that have taken place. I am living proof of what can be done. I am also completely sincere about wanting to help others. Truth.
Living with an autoimmune disease like Lupus.. is life in the edge of a razor. You walk a fine line of conformity to strict routines, and defined boundaries, and a small deviation can send you sailing right off – painfully. The longer I live with this stupid condition, the more I see that the only people that really understand what that means are the other people directly living it with you. That is not your family, or your spouse, or your healthy friends that say they are there to support you. It is your fellow warriors that are also afflicted. There are a lot of people that will tell you they “understand”. They will say they are supportive. The truth is, they have no idea how to be.
I prefer to write when I have something more inspiring to say. I like sharing my breakthrough moments, and successes.. but right now, at this moment, I feel very low emotionally and I have to put a few thoughts into print. One of the worst things about dealing with loved ones is that you end up spending more time and energy explaining to them what they should already know, and feeling bad (like it’s your fault) about disagreements, conflicts, and perceived disappointments. You feel bad that you have to tell people no. You feel bad that you have to tell yourself no. You feel bad that people don’t understand why any of that is happening. You feel bad that you have to explain it to them again and again. You feel bad that you are facing limitations. You feel bad that you have to pick and choose between not only the things you need to do and want to do, but also between the things you want to do when they are all there is to choose from. We Lupies could have all the money in the world in our hands, and it’s not going to take away the fatigue, the muscles that rebel and quit on us, the nerves that inflict pain and unwanted sensations and movement, or the risks of everything we are exposed to every time we try to go anywhere and socialize. Every move we make has to be a calculated risk assessment. There is no such thing as a spontaneous decision in my life. I can’t just “Hey! Let’s go to the beach today!” anymore. I can’t have a friend calling me up and saying “Let’s go have lunch” without warning, or drop everything and change my plans for a day where I have set aside to take care of matters at home. My reserves are precious, they are small, and I have to save them for the most critical things. When those are done, then I may be able to choose things that I “want” to do for myself otherwise. The next thing that happens on the trailing end of it is… someone placing a demand on your time, and your energy, what little of it is left. There is always someone that thinks they know what is best for you. Always someone that wants to put their own interpretation on the situation. Always someone with their own brand of a good idea. They also rarely want to hear what you really need.
Real life with real disease is boring. It just is. As one writer put it – and I still find this so true, even after 4 years of this – then every once in a while, something truly terrifying happens… I guess it keeps us on our toes, but honestly I’m kind of getting tired of it. Both the boring, and the terrifying are things I could do without for a while. Level would be nice. Not having to manage someone else’s feelings about my situation would be REALLY nice, considering I have enough to deal with managing my own. Hint for anyone living with an autoimmune patient: Don’t put your issues about it off on them. They’re sorting out their own challenges, so you’re going to have to sort yours too. Don’t knock them off of their edge. Don’t disrupt what little balance they’re maintaining. It’s so hard to get back.
My main focus is always telling people they have no expiration date, and they can do more than they are being told is possible. All of that doesn’t happen without some backing, some support system (which ideally SHOULD be at home first and foremost), and people that don’t create oppositional static for you. I would love to tell you that the changes I have made, and what I am doing now is easy, but it’s not. In fact it is more work, harder for me, than it was just being in a state of mental paralysis… not progressing, not improving. Giving up is easy, and you at least feel initially like you can lie your head down and rest (which is about all you ever think about doing when you have an illness like Lupus). It accomplishes nothing, but it’s comfortable. It’s also boring. Quickly. I talk about the successes, the positives, the motivation.. but it is because I have to keep my focus there in order to do it. It’s not easy. Not one step of this has been easy.
The person that knows best what they need is the one that has a daily war to fight with this disease in their own body. If you really want to support someone like me, you’ll listen to what we are saying and not try to come up with a fix for everything from your own perspective.
Not everyone is going to have the same views on everything all the time. In fact, I dare you to try to find one friend, lover, or relative with whom you never disagree, ever. That kind of a “perfect” match doesn’t exist anywhere in life, and I wouldn’t consider it truly “perfect” if it did. Differences between individuals is what makes life what it is – colorful.
Where some people get lost is in thinking that a difference means being oppositional. I have said this before, and will keep saying it, but I am always amazed that anyone is afraid to discuss things related to politics and religion. Why? Are you afraid that having a different view than someone else will make one of you implode? It’s not acceptable to share ideas and simply respect the other person having a different experience or take on it? It’s really interesting that some people take a more passive-aggressive path on this, and rather than simply state “this is how I feel”, they would rather become irritated and then fall silent. Silence speaks volumes, my friends, and not all of it is nice. If I am simply presenting what I see in something, or sharing what my experience with it has been, why is that offensive to someone with a different experience? Why can people not just accept it for what it is and stay friendly?
I’ll give you an example. I don’t approve of recreational use of marijuana (or tobacco, for that matter). Marijuana has medical applications, and tobacco is ceremonial in my culture. That said, I don’t hiss at people when they light up a cigarette, and I don’t hunt for recreational tokers to insult. I am capable of expressing how I feel about it, living MY life according to it, and letting others do as they do. If it harm none. I’m not going to tell someone it’s okay to drive drunk, because obviously that endangers them and others. Common sense. Interestingly enough however… many that defend recreational use are really very pissy about it. I don’t have a better word, sorry. If you feel you are in the right, then why are you so defensive about it? Why do you have to loudly, repeatedly declare that you disagree? Just say how you view it in a normal tone without the agitation already. That’s not difficult. I run into this over and over on various topics. To me it is disheartening. I enjoy the few friends I have that can converse without condemnation, but they are very few. In most cases I have also found that they never bothered to consider the reasons behind my views on any one thing. There is a perspective they are missing, and unable to hear it.. perhaps colored by their own experiences but none the less it is a blind spot. Once you’ve thrown up a wall of thorns about it, then I am not able to say anything else. I think there is a misconception that being open-minded on a topic means you are willing to change your beliefs. It doesn’t. It just means accept the other person’s experience as their own without judging it. There are more things in heaven and earth than any one person can know. Life is about exploring them.
Some things are personal choices. You never know why an individual is living their life the way they are, not really. You can’t be inside their head. Cultures have important nuances as well. If you’re kind and accepting, they might just share a piece of it with you though. When I see that I can trust someone, I sure try to. I also get burned a lot when people hit some point where they realize there is something unexpected in the picture. A real friendship however… is one where those unexpected things we learn about someone don’t matter. It has to be a two-way street. Differing views don’t erase the rest of the foundation in any relationship. If you never had a varied thought from the people you talk to daily, you would have nothing to discuss. That is the very definition of boring and pointless.
Here I am again on the topic of gender bashing. I know I’ve talked about this in the past, and it doesn’t bother me any less today than it ever has. The graceless words that for some seem to just roll off the cuff are in fact more and more offensive each time I see them. It’s really unattractive.
I am really disgusted at times at the double standard. In online groups that tend to end up with a member base consisting of more females than males, it seems to become the norm to make remarks about “MEN” in a blanket generalization that no one would tolerate in the reverse. Then if challenged, the posting individual either becomes indignant that you would dare to disagree, or they try to pass it off as a joke while painting you in a bad light for taking their remark seriously. “It was *just* a joke” doesn’t cut it with me, and it never did. You weren’t laughing, and neither was anyone else, and trying to backpedal with smileys and hahas doesn’t make that nasty comment any less rude retroactively. If you hate men, at least be honest enough to just admit that you have a personal problem and say that you hate men. Stop being passive-aggressive and smarmy about it and own your words. There is a lot of cowardice behind all of that, as well as inappropriate rage. An entire gender is not responsible for your issues. Get help.
Let me talk about the flipside that the man-hating populace wouldn’t tolerate. How would you like it if a man posted in such a group that all women are PMSing bitches? Would that agree with you? Is that kind of a generalization fair turnabout? No? Then mind your words about men, because no human person is created the same. Snowflakes, each and every last one of us. We all have beauties, and we all have flaws. We have our gifts and we have our unpleasant sides. Glass houses… throwing stones… sound familiar to anyone?
In tandem with this baggage comes an obsessive need to ruminate publically over the evils perpetrated on them. We have all seen it. I might suggest that while you can privately vent to your girlfriends, ladies.. and you should have one or two that you can be completely open about FEELINGS with when you’re chatting PRIVATELY, a public venue is not a good place to show your ass and be angry and insulting to the thousands and millions of others that belong to said gender.. just because you had a bad experience or ten. If it’s been 5 years… 15 years… 25 years… it’s time to move on from the incident. While you do carry scars, and it’s okay to be real with people about pains inflicted and how it affected your life, it’s not okay to wallow and wail continuously. No one even knows what to do with that. Their response is to post hearts and I’m sorry comments when they’re really sitting there thinking… WOW… Uhmmm…. Angry ain’t pretty, girls! Pick yourself up, dust yourself off, and take care of you. All that rage will literally kill your body if you keep dragging it around.
I’m not one to say that positive thinking fixes every ill in your life, whether physically or emotionally/mentally. I will tell you that it does have a very upward and healing effect though, and you can’t even buy that in a store. If you are choosing intentionally to make yourself sick with negative energy, more power to you and let me know how that works out. I will be over here sipping on my coconut water, listening to some birds, and remembering that I woke up today and I am still breathing. Everybody has pain in life, and everybody dies – nobody gets out alive. Birth is a death sentence. It’s what happens between those two events that matters. What do you want to be remembered by? Anger. Peaceful demeanor. Grief. Acceptance. Giving in to destructive behaviors. Being motivated to create change. There are a lot of choices here. By my age, I’ve figured out which ones work the best. Are you there yet?
Let me add here… men develop Lupus too. I believe that the statistics are skewed because they respond differently to illness. They are more likely to keep working, ignore pain, try to work through it, and avoid the Dr. When they do go, they prefer a quick fix, gimme a pill and get me outta here solution. They also don’t ask as many questions about what the problem is. When they do finally end up forced to stop, they are suffering so badly that the illness has taken over. This is why men are seen as being affected more severely by the disease than are women. We seek help sooner. We root for more answers. Consider that the next time you’re calling a man names for complaining that he is ill. They may be hurting far worse than you could possibly understand. They’re not going to tell YOU how bad it is, especially if they’ve heard criticism before. This society expects them to butch up and tolerate discomforts. Imagine yourself in those shoes for one moment. Now reevaluate your harsh responses and think how YOU wish to be spoken to, and about. Support groups are not a place to injure other members. They are a place to be kind and sensitive to the other human beings reading our words. You don’t have to paste hearts and flowers, and respond to every post with soft hugs to be helpful. Just try not going out of your way to be ugly.
A little addendum… anyone freaking out and thinking this is directed at them needs to take a step back. I have been in support groups for over 3 years now and this is a cumulative observation of events over that time period. So before anyone takes it personally, they should consider that the world is bigger than one or two individuals. What I am addressing happens just about everywhere on the web.
It doesn’t always make you a popular individual to draw a hard line when it comes to diet. (Refresher: that word refers to “what you eat”, not a prescribed outline like being “on a diet”.) Dietary choices – and choices they are – will make a difference in every aspect of your daily life. They determine how you wake up, how you walk through your day, and how you go to sleep at night. They’ll have effects on your level of concentration, energy, and emotional state throughout your day. They’ll have effects (positive or negative) on your sexual function as well. They’ll change the way your skin looks and feels, your fat distribution, the type of fat you carry, the muscle you build or lose, the health of your bones and connective tissues, the condition of your hair and nails, and ultimately even your unseen cellular repair and regeneration rates and quality. That’s the center of what we are in body. It’s our lifespan and the quality therein.
Quality of life is of extremely high importance to me. I am a Systemic Lupus and Fibromyalgia patient. I am also a heart patient. I never thought that I would be saying at 45 years old, “I have heart disease.” I spoke just now about choices and diet, but I want to be clear that I am deeply aware of the factor genetics play in our physical health and make-up. It is however a tremendous problem in today’s society that people are blaming such a large portion of their issues on genetics. MOST things are predispositional, and can be managed with good choices and self discipline (and a drop or two of adaptation to live by). I have some inspirational figures that I look to when I feel blocked or weary, and they are not just people that have disadvantages. They are people that have adapted and beyond surviving, they THRIVE. I don’t believe in merely surviving. I know a lot of people that feel that is all they do, and I do understand what it is to have utterly overwhelming pain and dysfunction that makes you not want to take even one more breath. I was there in 2006. I am still here in 2013, seven years later. I no longer feel that every breath is a chore I am uncertain I wish to undertake. I had to make changes for my quality of life.
I was at my rock bottom then. I couldn’t stand for more than few seconds. I couldn’t walk because the pain was so intense. I couldn’t sit in a chair to eat a meal. I couldn’t drive. I couldn’t crawl to the refrigerator because my floor was hard tile and it hurt too much. I had to have food set within reach for the day before I was left on my own, and that went on for months on end. I was on multiple medications just to keep me from screaming, and not one Dr would give me a cortisone injection or suggested any lab work for a more involved problem that “a bad back” (it wasn’t a bad back.. not entirely). I went through so many flares before I ever knew anything about Lupus, or even heard the name “Fibromyalgia”, and for many years all I could do was take to bed and take pills when this happened. Anyone that knows me knows that I don’t like to take medication if it’s avoidable. I was at the point of unavoidable. Seven years later, I can say that yes I have prescription pain medication if I need it but I am no longer on daily doses. Yes, I take Plaquenil for the autoimmune diseases but I am on a low dose. On occasion I need a steroidal med for a flare, but really not often. For my heart… unfortunately, I am probably stuck with a beta blocker for the rest of my life. I have a careless insurance/medical provider corporate entity that shall remain nameless to thank for the amount of damage I sustained, undiagnosed for 2 years worth of complaints. In the aftermath however, I will still adapt and keep living. It is a choice I make each day when I open my eyes.
I see people every day in my online travels, both autoimmune patients and those who are not, that rave about “treats” and “yummy recipes”. I see pictures of things that turn my stomach to even look at, and to my dismay the ensuing comments and applause are all either “I love that” or “I miss that”. It saddens me, because in many cases I know those same people will in short order be complaining about how ill they feel. A relatively healthy person may indulged or over-indulged and say “I know I’ll pay for that later.” That itself is tragic enough, being an intentional carelessness committed with the knowledge that it is self-harm. When I see someone that is not only diagnosed with a chronic illness of epic proportions, but knowledgeable about what those unhealthy choices will do to them, I find it appalling. I’m taking a hard line today. I love my readers. I love my friends. I love my extended family around the web. I want you to have the same and better quality of life that I strive for every day. One of my very favorite quotes in the world is from Sean Stephenson. “Pain is inevitable, suffering is optional.” We make choices every minute of every day that will have a banked effect for good or bad on whether we are going to thrive, survive, or suffer. Which do you want?
Jelly donuts, cake, and candy no longer appeal to me, even in the short-term. I will always be honest with my readers. About once a year I have 1 or 2 plain donuts of some kind. It always reminds me of why I don’t eat them too. When I “crave” something, it’s (99.9% of the time) something like avocado, cucumbers, tomatoes, spinach, various fruits, and sometimes specific types of meat, or nuts. I have allowed myself to become in tune with the nutritional needs and the cravings do serve a purpose. Craving sugar is not a meaningless “I have a sweet tooth” thing to joke around about. It is a symptom of a nutritional imbalance, and it can be controlled and channeled properly – and believe me, it will change your entire life. This is like the story about which wolf do you feed? Feed that sugar thing, and it will take over, guaranteed. The more highly processed it is, the worse it will be. Making the wrong dietary choices is – and I know this is blunt – not only a slow suicide, it is a choice to reduce the quality of life you have now as well as when you are 90 and someone has to help you.
NO, food is not “all you have left”. Food is sustenance, and a means to an end. It is medicine, and it is life. Not Lupus or any other illness or disability can remodel your life into a waste unless you allow it. It may not be the life you envisioned, or the path you thought you would have, but it is still a temporary and amazing journey that you have great opportunities to influence. I will never tell you that I do not commit indiscretions. I just told you about my once a year donut. When I say “rare” however, as you can see, I really mean RARE. I am leery of people that say “never”, and I offer the people in my life the same thing that I expect in return – respect, sincere care, and honesty. Don’t let yourself be a slave to your plate. When you’re done cleaning it off, what awaits in this life you that you may be missing out on unnecessarily? No matter your age or upbringing, you can learn to love the right choices. We have to work with the hand dealt to us. Let’s make a better life out of what we are given and find ways to thrive.
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.
I remember these tests I used to take when I was in counseling… temperament sorters. One of the questions asked in the “which is more important” list is honesty or kindness. I can never answer that in good conscience, because I simply do not believe that one can exist and function as a normal, healthy, adult in society without exercising both.
Anyone that knows me well knows that I value honesty above all else. That does not however excuse anyone’s need to blurt whatever they are thinking. Sensitivity to others is just as important, and you don’t always need to say what is on your mind. I believe the applicable saying here is that discretion is the better part of valor. If you want to go with childhood rhetoric, then “If you don’t have anything to nice to say, don’t say anything at all” works. I don’t believe in keeping everything bottled up, don’t get me wrong. I just see a trend lately where people feel justified in regurgitating their bitterness and distress all over the internet. Then they sit back and say, “What? I’m allowed to have an opinion.” You are. You are also expected to have a conscience about how your actions affect others. If it’s of no concern to you that words can cause hurt, and you don’t care about fellow humans, then by all means blurt away. In the mean time, I will be spending time with my friends that understand compassion and accommodation for the feelings of others.
There is more than enough hatred to go around. We don’t need to add to the pool, so learn to temper yourself a little. Be a REAL warrior. Warriors are not about attacking everything in their path. They are disciplined and introspective creatures that take steps sincerely and know when to stop and observe in silence. That is an honorable path to walk.
We all know the expression, “I wouldn’t wish this on my worst enemy.” For anyone with any level of decency about them, that is a genuine principle to uphold, and as an abuse survivor I think I am qualified to say that I have known individuals that could be wished harm. I don’t. What purpose does that serve? Is my own harm going to suddenly vanish because someone else paid some nebulous “price” that we can’t even legitimately tie in to retribution? Is it really acceptable to relish suffering, just because you don’t like something about someone?
I’m not just talking about evil people here. I don’t feel qualified to define between individuals and their level of deserving ill befallen. I could sidetrack to the legal system here and crime, but that isn’t where I’m headed.. so NO. There are two things bothering me, and neither of them have anything to do with criminal behavior. When I log in to Facebook lately, there are days that I just want to cringe. It’s not just there, mind you. Anywhere I go to read public input in posts has the potential for being an unpleasant enlightenment to what is inside the ugly minds of far too many. How did we end up here?
Topic 1 is about the Lupus community. We are supposed to be a support network for one another. We are the only ones that truly understand what we all go through living with this disease. I have talked before about it not being a competition – who is the sickest and most deserving of sympathy – but it goes beyond that. I am seeing a trend that is disturbing, and it is one where a sicker patient actually wishes harm on others so that they can better “understand” their plight. It’s bad enough when someone wishes that a healthy person could be sick, but to wish upon another Lupie that their disease were more advanced? Seriously? What did you just say??? Yes, I sure did read that. So those of us without major organ involvement are somehow privileged and should experience damage so that we can better sympathize with your personal nightmare. Got it. I mean I have a damaged heart. I can’t remember ever wishing anyone else could experience my difficulties with that – even for a day – so they could be educated about it or so they could be humbled or something. I don’t wish my discomfort or ailments on anyone. I am also not lacking in compassion from my support network for that or anything else. When did it become acceptable to turn on each other? I am seeing some elitist snobbery that I really dislike. FYI, anyone with Lupus in any form has the potential for eventually developing organ involvement and damage. It is the thing we pray for others NOT to experience. That is our appointed place to stand. Save your bitterness for conversations with your deity about how to manage it.
Topic 2 is the vitriol over the present uproar on marriage equality. I don’t have a lot to say about my opinions on it, because there is no point. I will say this one thing however, and it is because again I cannot stand the vitriol being spewed from all sides. Why is it considered acceptable to make hateful statements while arguing that it is not acceptable to hate? I have seen some of THE ugliest and most violent suggestions of what should happen to people, and no I am not about to repeat them here. This was not coming from the religious sect arguing that gay marriage is wrong, although I have seen that as well in scores. I am talking about those that are pro on the subject. No one will be swayed to accept you when you suggest that people should be violated and abused, or make threats on them. If you believe in yourself, your life, and your choices, and the individual that you are, then be a fine example of that and stop acting like a homicidal maniac. It’s not an attractive color on anyone, no matter what your orientation is. I have tried surfing conversations because I am open-minded and unbiased. I have left conversations feeling like I needed a shower because of the horrible things I read. No, I am not referring to lifestyle statements, as that doesn‘t concern or affect me. I am referring to remarks that are tantamount to an assault – from those defending their right to their rights.
I’ll take you seriously when you show me that you really are about peace and love. How you have been treated is no excuse either. I don’t cut any slack to my Native brothers and sisters either on that one. We are in 2013, and we are adults. We make our own choices about how we live, and what we believe, how we present ourselves in this world. If you really believe in karma, you won’t inflict hatred in any form, on anyone, for any reason. Show me.
One of my favorite Maya Angelou quotes: “I can be changed by what happens to me, but I refuse to be reduced by it.”
I have plenty of reasons to be mad. I am caught between worlds in many aspects in my life, and held in the prison of an uncooperative and sick body that I constantly battle and bargain with to have my moments of life that so many people take for granted without thought. I have survived being beaten and damaged by someone that was never punished for their crimes. I have survived other terrible things inflicted also by individuals that were never punished. I am multicultural and often rejected by both sides for not fitting a mold. I am possibly too liberal-minded in some areas to be a true conservative, and I really don’t like labels anyway. I’m not living where I really want to be, and unable to change it just yet. I have had support and health insurance ripped out of my life due to illegal actions and false accusations on an upstanding individual, with no assurance that a legal case can be made to fix it. I still don’t have health insurance and I am a fairly sick lady. Oh yes, and now I am required to have insurance so I guess I have to pull that money out of somewhere. *cough* Should I go on griping some more? Why? We all have baggage, damage, and burdens. And?
I can be changed by what happens to me, but I REFUSE to be reduced by it. My life experiences are a part of who I am. How I embrace and process them, and then act on them, is my choice. It’s yours too.
Have you ever felt the need to reinvent yourself? Self-define? Start over? Some points in your life just warrant a change, and it’s amazing how many people will resist and question something so personal – a thing that really doesn’t affect them other than to acknowledge that it exists. The friends that can take it in stride are the treasures that I hold dear.
I’ve never really had a great attachment to my given name. That fact doesn’t seem at times to go down well with the ones that chose it for me. I suppose I could lie and pretend I feel something about it that I don’t, but it’s just not in my nature. It’s nothing personal, as it relates to their involvement… it’s just the way I feel about the name. To quote a friend I recently got back in touch with, “Having a unique name SUCKS,” and believe me it does for many reasons. No one ever spells or pronounces it right, or remembers what it is, and when you really don’t want to be tracked down there is nowhere in this modern electronic age that you can get away. You can’t personalize things easily either when you want to. I was always the kid with either no license plate on my bike, or a similar one that was the wrong name… invariably either the wrong name people would call me by, or my middle name. I found out as an adult that the believed meaning of my given name was wrong anyway. I like the real one better but… that’s neither here nor there. If you’re going to look at meanings, you’re going to look for something of your own choosing anyway. I am Native American (albeit mixed) and in that culture, name changes are normal and expected. They move with the very being of whom you continue to become throughout your life, and have great significance based on personal achievements and experiences.
I’ve had so many nicknames by this time that everyone would be confused if they all got together. I’ve lived in different places and had such variant social circles that it really doesn’t matter. If you know me as one person, then you know all the other friends that do too, and no one wonders who you mean. That’s okay. I’ve moved on from some things in my life to others, and I am very much “where I am” and happy with that, not lagging somewhere in a broken past that I can’t go back to anyway. Each has special meaning and purpose, and a place in my heart, and I can respond to them without wondering who it is calling to me. Maybe that’s just my way of organizing the segments of my life.
I grew up in a household with a mother that went by her middle name her entire life, as though it were her first. You would think with that, there would be some grasp of the need to self-define. I’m never under the impression that anyone gets it though. We all choose self-definition in one way or another, whether by name, or personality, or appearance. The world only sees about us that which we choose to reveal, at all points.
My world right now is my art, my writing, and awareness/advocacy. It’s the first time that I’ve really felt I had a sure purpose with which I could take care of myself and help others at the same time if I so choose. Those things take an investment of time and energy. If you don’t invest, there is no return. It’s been in my best interest to make a clean break and start fresh to make that happen. With it comes a name. If I am to “make a name for myself” then it should be one that I can feel a connection to, even if it was because I just needed to simplify everything. Someone very special in my life has taught me much about simplicity, by the way that they keep their own form of order in the world. It’s easy to get stuck in the trap of “too much stuff”, and lose what is important amidst the stacks. I have grown to appreciate even more than I have over my previous lifetime some of the smallest things. For a time I let myself be led down a path that was foreign to my basic nature in that regard. This year, I needed to take the control back. So here I am.
One dear friend that I have not spoken to in almost 25 yrs gave me the precious gift of not even hesitating to say to me, “Hello Tala. How have you been?” It is not a name he ever knew me by, and yet the respect for the choice was acknowledged and without strangeness. It was a heart-warming moment that I will not forget. I’m not asking my blood relatives to call me by anything other than they’ve ever known. To my friends and other “families” that are able to embrace and understand, I do appreciate your willingness to adjust. It’s a label… like a brand, or a title. It’s DBA. It’s AKA. I suppose it’s like any pseudonym. Either way… It’s mine.