I wrote this years ago but never posted it. I cannot believe how much things have changed. I’m on Medicaid. I have help. I’m off methadone and on fentanyl . And I’m still in agony unless I lay flat. Also, a new wrinkle: Insomnia. Big Time. Could be withdrawal. Hopefully, it will return. I need my sleep. When I came across this, I struggled with whether or not to post, because I try to be upbeat. But I want people out there who struggle with NF or something else, to know you are not alone. And I have to keep reminding myself that altough Aimee Copeland is an inspiration, she is 35 years younger than me and, here's the most important part: I am not her, and neither are you. We all fight our battles in our own way; there is no shame in crying or feeling frustrated. Try however, to steer clear of despair..
This letter, dear body, is about my rage. I know it's not your fault, but I am very angry at the way I am feeling, at what you have put me through physically, and what you continue to do on a daily basis which makes living a full life not possible. At least not for me. I get other people manage to have full lives in spite of physical challenges. I am not them, I am me. And this me is angry.
Let's start from the feet and work our way up, shall we? Lately, and this is somewhat new, my feet have been driving me bonkers. No matter how I rub you, you hurt me muscle wise. But that's not the main thing. The main thing, is you, dear toes, who vanish from me when I touch you. You are so hard to feel, it's like I'm touching another person's toes, not mine, not you. So as a result, my balance is way off, my gait moves forward so fast I fear I will fall (again). Very scary. Why can't I feel you? I know, I know, it's the tumors, the damn tumors. Let's all gang up on the tumors, shall we? I'm all for it, but first, I need to address what hurts.
Moving upward, dear calves and thighs....both sides.....dear legs in general; this is where most of the pain resides. Why do you torture me so? What did I do to you? You are just relentless with the pain that radiates through you, Mr. Tailbone. Some days I can't walk, it's not worth it. Other days, I push myself and pay for it big time later on. That's when no one sees me. Sees the real pain. When I'm with people, especially my family, I say as little as possible, though to them it might seem like moaning and groaning. Who knows? Soon, I don't think I'll be able to walk. Here is why. You disappear on me more and more often. From my hip on down, just GONE. I bang on you and scream and it comes back but one day I fear it won't. I call the doctor, they do the MRI's and then they tell me the tumors haven't grown, 'huh? I wonder why you are in so much pain?" And they don't believe me, I think. If they can't see a problem, there is no problem, that's what they think, I think.
I am very scared right now, and very angry at the whole lot of you. Ganging up on me like that. Breast cancer,achelasia (another rare disease, as if NF isn't a rare enough disorder) and now possibly thyroid cancer. But I'm keeping you, dear thyroid. I pray you aren't cancer, but I'm going about it a different way (vs having it removed). I do reiki anyway, so I am increasing that work, I'm seeing a healer, and what the hell, if it's cancer, I guess its cancer. They want to do chemo and radiation if it is, and I'm not going down that road. Mr. Immune System isn't very strong, are you? I take so many supplements to help with all that is wrong and it’s still wrong. Very wrong indeed.
But I want you all to know how angry I am at this life you have given me. My friends and family all work, travel and have lives. And yes, they have challenges. They deal with them and get to the other side. Where is my other side, dear body?
Work. Relationships. Travel. Children. Not sure I wanted children anyway, but the option that is what was ripped away from me. Do I have things to be thankful for? Hell yes. But I am furious, as I watch the beautiful day unfold from my window that I cannot do but one thing in a day without horrible pain. When I have the audacity to behave 'normally' and try and do my shopping AND go to the library AND get a haircut or whatever, that it flattens me.
I am terrified too. Terrified at what lays ahead. I want to die before anything else happens. I hurt so badly. And I am so angry at you, dear body. You have betrayed me as surely as a spouse betrays his/her partner by cheating. You have betrayed me as a parent betrays a child by molestation or neglect. You have betrayed me as a business partner betrays his partners by embezzlement. Or as a president betrays his country. Betrayal is a horrible thing. But unlike those other betrayals, I cannot get away from the perpetrator because we are connected. I can only meditate away from you for short periods of time. I have tried pleading, I have begged for forgiveness for whatever I did to make you this way...but nothing works. Not prayer. Not meditation. Certainly not western medicine. I am a freak. An angry freak.
Yes, I have accepted this for the most part. Maybe it's not your fault. Maybe you, too, are crying in desperation. I don't know. I don't know who to be angry with anymore. G-d, if He exists, surely doesn't know I exist.
It’s beautiful outside....mid-sixties, will reach the mid-seventies this weekend, not a cloud in the sky.....a perfect day for being outside and enjoying the weather with friends or family. That's a guess. I'm inside. On my couch. Lying flat, pain. Boo effing hoo, right? My legs and arms and fingers are twitching like mad. I have seen too many doctors to count. But in the end, what's the diff?
I am so tired of forcing myself to be upbeat. I must be upbeat or people don't want to talk with me, and my phone barely rings as it is. Of course, if I were healthy, chatting with those stuck inside really wouldn't be a priority for me, either. There are so few beautiful days in Seattle; one must make the most of them when they happen.
Oh, dear body, why do you torture me so? What are you trying to tell me? I have been attempting to do my Mantra on healing every day, but it's hard. I listen and listen and I read the words, but it just is so hard to say. I can do parts of it, but I can't get it down. Perhaps just listening helps, too. Of course, I started doing it because of the nodules on my thyroid gland. More problems. If it is cancer, I'm not going to treat it the way they are recommending, so what's the difference?
I never know what to do....sometimes, I want to fight like a champ, other times, I just want the chips to fall....and they are falling... like leaves off a tree, they are falling off me fast and furious. And the world is moving so far out of alignment with the Universe that all I want is to get off...so my body is trying to fulfill that wish, I guess. Most of the time, I just think of what is in front of us as human beings and I want off....now, before it gets any worse.
And personally, I'm nothing but a burden to my family, my friends, and the world. I contribute nothing, and I take all that I need. I do work on keeping expenses down, and I worked like crazy to get the measly amount that I get from disability, but I do get it and it does help.
I can’t ask for any more help from my family. They are hurting too, and paying my rent and I appreciate that beyond words. Its nuts. I don’t want to play anymore. I want to take my bats, my balls and go HOME. Please? Or just make it not hurt.