A friend said this to me: “The truth is, most of us are a ticking time bomb… the question is, is the bomb a dud. At any minute, one of us could get really sick and face death. It’s one of the many reasons why we shouldn’t take things for granted and should care about others more. BUT… I think some people want to insure that their bomb will go off.”
This is unquestionably the truth. It may make you uncomfortable to address the fact that there are those intent on amplifying their distress, malingering in their burdens, and even relishing the situation, but we have to acknowledge that it does happen. This reality takes nothing away from the people that are genuinely taking a beating to their health. We know that people die from autoimmune diseases, or more accurately the consequences of them. We are not dismissing that fact. We are addressing how you live your life between the written lines. Both those that cry loudly in their pain, and those that choose to focus on positives and progress, may be equally ill. The only difference between one person and another is often how they manage the events. How gracious are you capable of being, how grateful for the breath in your lungs, when it hurts to take each breath? It’s easy to be grateful when it doesn’t hurt. What happens when it becomes difficult is what shows the world your character. Let me point out again, before anyone gets mad about this, I face these issues myself. If I’m not facing it now, I have in the past. Otherwise I wouldn’t talk about it.
I will even tell you bold-faced that I have been in the position of self-sabotage in the past myself. So don’t even think that I am pointing fingers at people, not knowing what I am talking about. I wouldn’t address this not knowing what it’s like to simply feel there is no hope, nothing that I can do for myself to climb out of that pit. I would not be posting what I do on this topic if I had never been the person that could talk about nothing but the pain and sickness.
I did not STAY THERE. I have already proven it’s not necessary to stay there.
Some of my responses in the conversation at the top: Ironic or something… considering lupus eats muscle. Sure NOW I decide to build muscle.
With LVH [left ventricular hypertrophy] my heart could stop without warning. That’s a reality I live with. The beta blocker, weight loss, conditioning, all of it is intended to lessen that risk. It doesn’t eliminate it though.
My having faced my own mortality that bluntly at.. I guess I was 44 when I got that diagnosis… it changes you. You have to decide how it changes you though.
That kind of lays a responsibility at your own feet.. to live that way.
I could be fearful… wake up and think OMG.. what if I have a heart attack? Spend the day fretting about everything I do. My choice was to laugh.. literally… “omg lol seriously? My heart could stop… for real. Okay well, not today!”
Initially I was shocked, nothing short of devastated. I was taking medical terminology and knew what the big fancy words meant. I left the Dr in a daze, sat in my car and sobbed for 10 minutes, drove home, called my father for advice… I was a mess.
….it also made me look harder in the mirror.. not a bad thing. It’s not just that I was 232 lbs. It’s that I let the disease and injuries steal my life for a decade. I lost conditioning, muscle tone, strength… and motivation. Grown woman, love my curves, no need to ever be a size 5 again. I can live w/ 14, maybe 12. I don’t need smaller. I don’t need small. I need me. I need my power back. I like curves, I like muscles. I don’t need to be waify.
This is a new mindset for me too. I kind of liked working w/ weights when I was 18 to 20 thereabouts… but never got far with it. I didn’t have a reason to other than wanting strength after the abuse [a relationship when I was 17-18 yrs old]. Now it’s more… it’s not about him, it’s about me. I want to feel centered and have accomplishment of my own merit. That to me has value.
I read this somewhere: “We can either cry our eyes out, or laugh in the face of our enemies. I choose the latter.” I do. Every day, I choose the latter. I have to, because it is my life and it is what makes me even want to move. Is the enemy my own body? NO! I haven’t said this in a while, so I will go over it again… being a Native woman, and my clan being Wolf, and having an affinity for them my entire life to begin with, this reference to “fighting the wolf”, “being attacked by the wolf”, and the like really offends me. I started the I Am That Wolf project for this reason. Our perspectives are skewed and horrible in this society. Lupus is not the wolf, I AM. I am a powerful and intelligent, cunning, top of the food chain, beautiful, loving, THRIVING, and adaptable creature with incredible capabilities for survival. Look at a malar rash sometime and remember the markings on a wolf’s face. There is where the name came from. Find a reason to draw strength from the wolf within you and please stop maligning the magnificent beasts that they are with this ridiculous “vicious stalking killer” image. There is nothing stalking you in the shadows, drooling for your blood, sniffing at your heels, except for the personal baggage that you choose to drag with you relentlessly. Let it go already. You can.
I know, I know… some of you are not ready to find that mental space yet. That’s okay. As I said in my last entry, I’ll still be here when you are. I am aware that it is a process. I am not heartless. I am just determined not to leave anyone behind. Would you rather I keep all the goodies to myself and not offer help? People have strange reactions (I have observed) when you offer them solutions. I am sorry (maybe) to say that I am not very good at ordinary sympathy. I just do not find value in it. Once in a while, I simply note someone’s pain and tell them I hope they feel better soon, send them a little heart emoticon… sometimes just the heart, because I don’t really have useful words to offer. That is simply an expression of affection however, and although it has it’s place at times, it is not my daily routine. To me the most valuable thing that I can offer a friend is a solution (if there truly is one), and a hand up. Hand-outs don’t last as long, do they? I mean I can keep throwing snacks down in that pit you’re sitting in, if it’s what you really want, but it’s going to tie up a lot of my time running back and forth and your choices will be extremely limited. A ladder would be better, no? Then you can climb out and get whatever you want. If you have ever questioned why I speak the way that I do in posts, this is it. I think ladders are more useful than candy bars when you’re in a hole over your head. Got it?
I met someone recently that is always pleasant to look at. I see her photos and she is always serene, smiling, at ease – even in the hospital before and after a surgery. That kind of peace cannot be faked. It comes from the inside. That is someone that has learned how to process and adapt. It is the ability to accept the hand they have been dealt and walk through without bitterness. When you fight from a place of disappointed rage, you not only throw away your power but it becomes a fight with self. When you fight like a true warrior, first disciplining self to recognize the right moments and where to direct your energy (and knowing when it is not a time to fight anything), you then have peace. Being a warrior is not centered in anger. It is centered in acceptance and fluidity. As Bruce Lee said… be like water.
When it came to my most worrisome diagnosis, I had to decide that “today is a good day to die” essentially. That isn’t about having a death wish though. It means I have spent this day (or will) in a way that is fulfilling.. sincere.. honest – everything I would want as a legacy. So, if I do depart, then all is well because I have done well. In that peace, you will have more years and more quality in your years to walk this earth, I guarantee it. It’s never a “bad” day (even when I may call it that). It might be a character building day. I sure have had a lot of opportunities to build some good character in the last four years.
Accomplishments have real value. Money and possessions come and go, but personal achievement will stay in the bank for you. What you choose to invest yourself in heart and soul is going to determine what’s left at the end of the day. You cannot buy self-worth or a sense of peace. You are the only one that can create a warrior out of yourself. Are you going to invest in fear and doubt, or in strength and goals? That is a thought to pause on every single day.
I haven’t been truly hungry for anything in life in a long time. I remember the last time I was, and remember it well. A year ago I got that back, and I will never let it go again. Find something to be hungry for. You are the only one that will know what that is deep down.