we all hide who we are

This is from an email letter I wrote to a young mother in summer of 2010 who was feeling devastated with a life crippling illness making normal parenting almost impossible. The hard copy I printed out is a time-stamped proof of who I am. I have been sharing a very arduous personal journey for many years online, but all people see on the internet is just that. Well, there is truth, and then there is truth. 

Hi, J- 

Your mom occasionally forwards emails you send out, so I just read your latest one about Job.

I could write a lengthy book here, but I'm not going to. (Actually... ok, it's a book.) I don't openly share a lot about myself and my own pain that I've endured since my mid-20s, partly because others don't have the stamina to keep encouraging me since this is nonstop. They are at a loss what to say or do for me, and I have learned to 'let them off the hook' so they won't feel guilty for neglecting me. I've been literally abandoned by two different churches over ten years, which are still very painful memories for me. I've had many and very long personal conversations with God and have come to realize this is about me, not them, not the churches. Yes, it is shameful when churches let people with great challenges fall through cracks, but where 2 or 3 are gathered in His name, there He is among them, and as you know, we are NEVER alone.

I'm glad to hear you still have some support, mostly via that doctor who you know so well. At least that is something. I lost my 17 year long history with Cox when our insurance changed and I had to flip to St. John's, which forced me to drag through a long list of new specialists and spend tens of thousands more in copays, deductibles, tests, and ER to reestablish a new history, despite 500 pages of medical hardcopy from Cox. And ~still~ they debate about what is going on with me, and I have no relief. I was told by a pain specialist last year that he was afraid to even try a pain shot in my neck in radiology (fluoro needle guidance, they call it), as I have become so chemically and physically sensitive that my body reacts instantly now with lupus-like reactions even to the smallest disturbance. I no longer take contrast with MRIs because I finally had allergic reaction. I've had nearly every test from head to toe, and joke that I've had more brain scans than any person I know.

Then I see warnings on the news or something about radiation from over testing causing cancer, and I just laugh my head off.

The hardest part, as you were expressing, is losing vital social contact, losing activity that defines us, losing connections and hopes. Many people who go through these feelings go through horrible depressions and sometimes suicide. People who have never been through this don't understand the depth of despair we must wade through simply just facing the reality of being alone in our pain and defeats.

On top of the pain, there is the added insult of going through regular illness, or worse, debilitating illness that does not strike others because they are normal enough to handle it. Being worn down from pain and medications leaves a person especially vulnerable. A couple of years ago I spent months recovering from CMV, one of a thousand types of mono that most people never even know they have, and I lost even more ability and became so weak and foggy brained that I could barely function. I rarely tell anyone how bad things get, but I'm sure you know the drill.

I don't know if you blog, but there are MANY of us 'out there'. My biggest relief was finding other people who know how I feel, even if I just lurk and don't interact. My biggest challenge is facing death every single day (because it FEELS like death, and the doctors keep checking, and even though I ~seem~ healthy, this pain is daily death), and not falling into despair.

Some years ago it dawned on me that God 'gave' me lupus (or allowed it) to teach me something. We've reached the conclusion (so far) that this is a neurological illness that cause lupus flareups and is now affecting my brain (but no damage seen yet, thank goodness), but the common thread through it all is that it constantly ~slows me down~. Why? I think back on my life and realize that slowing down gives a person volumes of time to think, deeper realizations to reach, conclusions that others may not get to until old age or sudden horrible accident. I'm actually being allowed to learn *gently*. No sudden impact on my life that rips my world apart, just this long slow daily trudge, a death that has so far spanned two decades.

Realizing this point of view, I began to question- what am I to learn? I'm already forced to become the most patient longsuffering person I know, so what is this all for? I look at the world around me, busy Christians running hither and yon, and realize even more that I've already lost everything and have learned to be content. I can't even sit in my yard under a shade tree on a cloudy day without risking severe burns (I also have PLE, polymorphous light eruption), I can't walk through Walmart (and I crash into things when I drive a motorcart, gets pretty funny unless you're someone I've just barely missed), I can't travel with Scott to Florida when he sees his dad (travel in any form devastates me, I can be ill for months after a long road trip because of what sitting does to my spine and nervous system, despite all precautions), it's all I can do to meet my sisters at a restaurant every 6 months for a meal and then I need to go home right away while I can still handle a car. I seem to have a 'window' on good days, after that window closes my body and brain shut down and I become quite dangerous on the road.

(Much of this in the above paragraph has been resolving over the last couple of years, although I'm still nowhere back to any kind of real normal.)

I don't like telling people all this stuff, because I despise the 'you poor thing', although I don't mind the 'bless your heart' stuff. People can bless my heart all they want, just don't make a weird puppy face and put me in a spotlight.

What I want is to LAUGH. I told God some years ago, as I lay in my bed in such sadness for all that I'd lost in life, what I want is JOY, like the little lambs that bounce around in the fields. If I can have nothing else back, at least give me that.

Joy came to me that day and has never left. It's very real. I feel like I have a blanket around me, and even though I still go through my daily trudge and still have crippling pain and utterly embarrassing brain fog and seemingly no hope for 'happiness' and 'fun' with other people, I have an insight that fills me with stuff I can't even describe to you. It's like stepping outside of myself and being able to really see the bigger picture, the wondrous stuff. Never before in my life have I had understanding like I do now. I see patterns in human behavior, I see unique aspects in every person, and even though I'm NOT the feel-goodity type that loves the human race (I have Asperger's, I joke all the time that I was naturally born to hate people), I see their 'insides', pains and anguishes, almost like I see their hair and eyes.

I have chickens. I've often wondered what it must be like to live that way, no kisses or hugs for comfort, no privacy or escape from the group, no words to explain, and I can't even twist my mind around putting my head upside down while standing up and keeping my balance, on one foot while I'm at it. Encumbered by long pin feathers out of every part of my body. But if you watch them long enough, you see that they do find comfort. Even on hot nights, they roost shoulder to shoulder. If one is having a bad day, it squeezes into the middle. I used to think chickens were cruel, because they peck each other, but when Spencer (my freaky-outy chicken) flew cackling back to the group from the woods, Macy (the boss) pecked her in the face till she shut up, and it hit me that's what it was, "shut up, you fool, something could have followed your screeching back from the woods and gotten us all". Another time Spencer cried and cried because she was sick and molty in the winter time, and all the chickens gathered real close and grabbed little neck feathers in their beaks. At first it seemed mean, but as I watched I realized it comforted her to have them all right there, paying attention, and when she quit crying they still stood quietly by her.

Humans are like that. God watches us 'flock' together, doing what we do to comfort each other, or hang out doing stuff. And He can see us like I see my chickens. Only better, because He doesn't get tired and go in for a nap like I do. Just like I know every inch of each chicken and know from day to day how they are feeling and what brings them joy or fear, so God knows us. And if we have the time (most people don't have the time at all), God shows us ~us~, the way He sees us, and shows us how to see each other the way He sees us.

There was a reason God allowed me to be stripped of everything that made me me. He is creating a new me, a more blessed me who is less attached to this body and the things of this world, and more insightful to His real plans for us. What I used to think I wanted to do for Him was only a distraction. He wants more of me. Maybe I can no longer sit in a church pew or visit people in hospitals or get involved with VBS (and I do still miss all that), but what I can do is amazing. We have the power to transcend our bodies, and our pain. Doesn't mean we don't have pain, and I'm not for one moment downplaying your pain. I've had long weeks, months, years of pain that all but ruined me, and I'm here to say there IS hope, and light at the end of a tunnel, if you want to use that visual. Almost adding insult to injury, in what is one of the big cosmic jokes of the century, I am now allergic to so many meds that I no longer take pain killers. Yowza. No muscle relaxers, nada. I took handfuls of meds for years until the meds themselves nearly killed me. A swollen liver is no fun. And here I am, still going. Severely limited, but still going.

I discovered about 4 years ago that I can blog in such a way that I attracted a LOT of people. I found out that others were looking for the same things I was looking for, and they found me in the search engines, and I gave them hope. I tend to be more comical about it, but it held true for just about anything anyone was going through. There are certain things we are all here to learn, and I just happen to be on the fast track. I realized that just by sitting in my house I could reach thousands of people all over the world in an instant. Who knew a hopeless middle aged puny person could actually make other people feel better just by moving her fingers?

I have talked to a LOT of people online, all ages. Kids who have completely lost faith in their parents' religions (usually Christianity), women who secretly cut and abuse themselves out of guilt, men with rage problems that destroy their relationships, kids with terminal illnesses, you name it, I've run into it. Or they have found me. The biggest problem common to all of us is that we don't feel accepted or loved, we don't feel forgiven or forgivable, we feel lost in a big maze of people, none of us have lives like what we see on TV, and we all hide who we are. Even with all this technology and the most psychologically healthy century this planet has ever known, we are afraid to TALK to one another. Really talk.

God isn't finished with you yet, as they say. You will (hopefully) round a corner where you kinda forget about yourself and what you left behind. You'll see a way forward and feel useful again. You'll feel less picked on and more guided through your body. I have learned that any kind of pain spike when I'm around people means I am to ~shut up~ and let them talk. It's happened so often it's like I'm trained. I'll be fine, I'll be ready to open my mouth, pain spikes through my head or arm or something, and after I keep my mouth shut, someone else says something that was either more important and needing to come out, or shined more light on what I really should be saying, not what I thought I should be saying. I feel like a horse with a bridle on, like what happens in my body guides me. I am meant NOT to be more involved in certain ways, not because it's a bad thing, but maybe God wants others to figure things out their own ways. Maybe He wants me to enjoy THEIR singing (I sang in a church choir on TV, I know what you mean about missing singing). Maybe He even wants me to go out of my way to tell them how much I enjoyed THEM. And I'm not a flowery compliment-y kind of person, but I'm learning that other people need to hear it. It's like, and I hope you are 'old enough' in your pain now to appreciate this, it's like the weaker ones need the attention. Us stronger ones are subdued out of the way. Because, J, you are quite a strong person. You may not feel like it right now, and you may even resent me saying this, but you are so strong that you overshadow others. We are like a garden, God tends to us.

You said someone said that you are like Job (I happen to love that book, in my top 5 faves in the bible, because I love cranky people, and Job, honestly, was a demanding whiner who glorified in his suffering just to annoy his 'useless' friends) (ok, that's just my interpretation, but nevertheless), anyway, the point being made that every pain was being used against you, etc. That is true in the beginning and can be true for many years. Yeah, there's no 'escape' for people like us. BUT. God wouldn't have allowed it if you weren't strong enough. You are SO strong that Satan is taunted by your presence and takes glee in your suffering. The more you writhe in agony and anguish, the more he glories over you.

Or not... There comes a point in the human soul when a person has had enough, and pain becomes meaningless. It will simply always be there. There are men on this planet (and women, no doubt) who have suffered terrible things, many for 'nothing'. Men spend years in foreign prisons, starving, beaten, and tortured. People die in terrible fires, a horrible pain I would never trade this life for, no matter how fleeting that pain is. Men have had their heads hacked off, women have been stoned to death, all for others' whims or beliefs or madness, and mostly for 'nothing' but Satan's glee. Just being born on this planet means we suffer, in every conceivable way, whether physically, mentally, emotionally. Millennia of billions of people suffering. We must not let our recent illusion of freedom and shopping whisper that we somehow deserve to escape suffering, just because we live in a new nation with ideals and people going soft with cushy lives and what the rest of the world would call wealth.

What we choose is how we handle what we bear. We can become bitter, or we can become joyous, yes, even in our suffering. I had to ask for it, there was no way I could become joyous on my own. Life can sparkle again, even on your worst days. Little moments can transcend what once were great deeds (in our eyes). Perhaps that is the whole point- the little moments are more important and more precious than "a life well lived". It's hard not to feel envious of others who 'work for the Lord' and whatever, have sooooo been there. It's not fair, it's cruel fate, it's ironically stupid. But you are given an opportunity others won't be given because they are not strong enough for this kind of challenge- to step back, to see the bigger picture that God sees, and to become something even better. The key is to let go of the feelings that naturally come with being stopped in your tracks like this. Bitter disappointments, resentment, despair (no hope), anger. These things eventually fall away like scabs, but we must stop picking at them. Let go of what you ~could~ have been. Embrace who you are now, love your poor body for what it must go through to serve (it helps me to think of my body as my steed, my faithful companion through thick and thin, my vehicle that keeps clunking along no matter what, even if it has to crawl- I actually feel sorry for it having to go through this with me), prepare to rise to the challenge being asked of you, and pray for peace on your soul, protection from more harm, safety from disaster (read your tornado letter, too, that was amazing), pray for everything else to be EASY and SMOOTH, because your life is already hard enough. And pray for joy. Approach the throne boldly with your requests, knowing God will take care of you. It's hard to do that when we feel punished daily, with no reward of relief.

Off the subject, but one sleepless night as I lay on the couch asking God what it's all for, I suddenly thought to ask Him who I am, please show me who I am. I had the most awesome dream that night, one of those attitude altering dreams. I was so wowed, and there is no way I can describe it. All I can do is recommend trying it yourself, dive into metaphysical philosophical questioning (be demanding like Job!), and some really incredible stuff will be shared with you.

Love you. I won't say 'hang in there' because when people say that to me I'm usually mentally crumpled up in a heap on the floor and the hanging in there part is long over, but at least know that a shovel is coming to scrape you back up off the floor and set you back into a chair, and that even if this happens over and over, you soon learn to enjoy the shovel ride. I know, things get weird when you visualize through pain, but it really does work.

Again, some of my problems have been somewhat resolving, especially the pain levels I lived with for many years, and it's weird to look back at it now. I did leave one thing out in that letter, and that was to pray for healing. I did that one day about 6 months after I wrote this letter. I wrote down what happened at gotta see your face some more. I'll put an excerpt over.

Through all these things I've been learning how to balance my natural innate negativity through embracing publicity, challenging my baditudes and praying to be good for other people. I have prayed for 2 things for myself through the years. Usually prayers are for other people or all of us or something, but 2 very definite things I have prayed for myself.

• Years ago during my worst illness and growing ugliness (hair loss, weight gain, attitude affected by meds and pain), I cried and told God if I must lose everything else, at least let Scott come home happy to see my face. I looked pretty rough for a few years, and I had to stop fixing my hair and wearing makeup. I couldn't afford nice clothes with all the money going out for medical, and we went bankrupt before I wound up with full disability. I was so depressed. God, please let Scott be happy to see my face, because I don't know how he can stand to even look at me. Well, my hair still hasn't gone gray and I barely have a wrinkle on my whole face and I'm 56. I've been told that being on estrogen therapy for 20 years can do that, but was also told I'd start aging very quickly after getting off those in 2012. Not really holding my breath resisting, still can't wear makeup, but I've been able to grow my hair back out and Scott and I laugh together about something every day. I'm glad to see his face because he's my best friend, and I guess and hope he's still glad to see mine, even when I still have bad days and get very cranky with him, and he doesn't deserve it. My brain is my enemy on those days, not him.
• I also reached a point where I prayed for healing. I was raised stoicly believing that to pray for one's own anything was vain, so I've never really prayed for my own well being. We are all here to learn through our suffering, right? Well, after some deep thought just before I met my latest doctor in 2011, just before Christmas of 2010, I prayed for healing. I had come through some very hard years of months and months of back to back viral illnesses on top of severe nearly unlivable nerve disorder pain, and I was reaching a point where I wasn't sure I could keep hanging on out of spiritual duty. I was breaking inside and could no longer hide it. I reasoned for a few days that if I really do pray for healing, I mustn't be stupid about it. God doesn't work miracles for us to toss it back. If I commit to that prayer, then I commit to true healing with everything possible I can do to help take care of myself. I wouldn't get better to be stupid about it and ruin my health again. One day I was ready and I prayed. The next day the holes in my pierced ears had both closed up. They had never done that in 20 years. I immediately decided it would be blasphemous to get them repierced and gave all my earrings away. From then on has all been positive progress. It has been long and hard, but I wound up with the best possible primary care doctor, got diagnosed immediately and fast tracked so the right specialists and physical therapy. Years of doctors before him were just struggles with very addicting medications and the long slow descent into the hell of premature aging, without hope.

So laying there in pre-op, I knew I am ready now. I've done what I've apparently set out to do in this life coming to this earth, and I felt at peace. I've learned how to heal relationships, how to take much better care of myself, how to network with other real people with success and hope in mind for all of us. And I want to continue that. I know I'll have brain crash days and be very mixed up and brain chemical spills splashing on others, and I hope they can keep forgiving me. I'm facing a future of dementia as I age, and since brain problems run in my family, I've accepted the idea that I need to keep brain training now while I can to be good for people before I lose more control of this wonderful machine I live in.

This is very long and right now my brain is tired. I've made it through nearly 24 hours of fairly high dose opioids and enjoyed it immensely, but soon I let it go again. Addiction is a bitch, protracted withdrawal will make me mean again, and I wanted to write these feelings out before I forget I had them.

I really like this song, it got me through a lot of hard. At the time, I was deep in hanging on through fandoms. If you are having a rough life, so many hugs to you. 💗💗💗 Bless your heart.