When a Christian friend offered to pray for me, and I facetiously declared: "I'd need a miracle!", he asked me what that miracle would look like. After some serious thought, this was my reply:
If I could have a miracle, I would want one year. One year to be a normal person, with a normal body, and normal problems (I'll deal with heartbreak and money woes, the painful bunions and the bad-hip from tripping during a faulty fire-alarm at Indigo-Chapters.) I wouldn't care if I died the year after, but I would want ONE year of being able to go where normal people go, eat what normal people eat, and live as normal people live, without fear of my health worsening or my brain getting re-injured. One year to have normal relationships not strangled and tortured by the strings of my past. One year to just be a healthy and functional human being - and not have to be a survivor and a fighter every day of my life.
I decided some time ago that I would rather die living, than to live as I were already dead. Quitting easily isn't in me. Most people with MCS don't travel. Many of them don't even leave their house and have to have others run their errands. They certainly don't ride public transit or couch-surf or put themselves in unpredictable environments as much as I do. MCS is a condition that worsens the more one gets exposed to chemicals and every time I go out in public I am exposed to automobile exhaust, perfumes, chemical cleaners etc.
But with the choice to fight and to pretend to be normal, comes consequences. I often have a painful time breathing, and over time I've noticed myself becoming increasingly sensitive to smaller amounts of fumes. [I went to Burning Man and] There were more than 50,000 people on the playa, and although a handful of people I spoke to were bothered by the diesel fumes Thursday night and the toxic garbage burning Monday night, only one person (me) had to spend both nights in the playa's pressurized hospital tent, having to be put on oxygen when her blood-oxygen levels were found to be too low. The normal people barely noticed a thing; they partied while I had to hide indoors. Similarly, the chemicals in perfumes and fragrances are healthy for no one (this list is unsourced but insightful - and indicates why perfumes/fragrances affect breathing http://www.ecomall.com/greenshopping/badfragrance2.htm) but I wish I could function around them and not be so bothered and incapacitated by them.
That aside, I also have the freak injury thing happening for me, whereby my favourite hobby is a very real threat to my mental health. I have what essentially amounts to a floppy brain, as a result of past head injury inflicted on me by a temperamental adult-child who opted instead of raising me to simply lift me up and chuck me. I think I may have mentioned it before, but I had a very domineering father who chose whacks to the head as his primary mode of communication. This was compounded by a few other injuries, including the collision with the T-bar that knocked out my teeth when I was a teen. The last CAT-scan revealed inflammation around the brain, and the current theory is that injury = inflammation = pressure on the brain = shrinking of brain tissue = more room for brain to flop around when head is bumped or jostled (ie sudden movement in vehicle) = even more injury. I get concussions REALLY easily. It scares me. My mind is one thing I value most and I'm afraid I won't always bounce back intellectually. I'm afraid I might go a little crazy (crazier?) the way many brain-injury patients do. But I LOVE to dance and I loathe the thought of quitting... If I could have one year where I could just dance and not have to worry about further injury. One year with a normal brain so I could laugh off a lead's forearm to the head the way most follows do instead of spending a week in aches and dizziness...
Then there's my teeth... Oh the trouble they have faced! Six years of braces that included painful pallet surgery to uncover and bring my eye-teeth down through the bone 1 mm per month, faithful brushing/flossing... only to collide with that T-bar. Another painful surgery to reattach teeth, later followed by countless x-rays and four root canals (two of them while I was no longer under family insurance - at a tune of $1000 each!), followed by the eventual breaking of those weakened teeth, the extraction of teeth, and then two years singing "All I want for Christmas is my seven front teeth" (oh yeah, I was real sexy those two years!) before I could finally afford the $1000 partial (that is now breaking apart and which I can't afford to replace right now)... And if that trouble weren't trouble enough, the accidental aspartame reaction that precipitated my MCS also led to the break-down of my enamel on all remaining teeth. $3000 already spent on fillings/extractions and another round of that to come in upcoming months on newest cavities... [edit: I just realized today how very bad ten of my remaining 15 teeth are - and badly inflamed too, which according to latest Health Canada reports leads to brain damage, especially with age] if and when I can find such money again... Since we're asking for a miracle, I want my full-set of teeth back. Normal people my age don't have the ability to cough out their teeth. :P ...Failing that, I'd like to have access to a good dental insurance plan at very least.
I'd like to not be alone. This is something I don't always admit, even to myself, because I've grown to depend on myself and myself alone. I trust myself, I enjoy being with myself and because of my past I learned at a very young age how to survive emotionally when I felt completely unwanted and unloved by anyone else. (I wrote a mystery novel when I was ten!) I can be oddly extroverted in social settings (my social fix) and if you watch me chatting up strangers like they were old friends you'd never know how alone and misfitting I feel. I am rather verbose and talking comes easily to me but I have to make great efforts to develop deeper connections. I have to be intentional about making plans to go out and socialize one on one - and following through on them. Given the opportunity I often prefer the safety of my computer projects and photograph-tourism.
But we were not made to be alone and there comes a time when my longing for belonging and my need for human connection can't be fixed with blues dancing and the rush of being surrounded by hundreds of people. I want to know and be known. I want true and honest conversation, I want to be an integral part of some people's lives. I want a family, whether that be by blood or by choice, children or adult. My biological family barely knows me or cares to know my whereabouts, yet the Bible says that God "sets the lonely in families" and I yearn for that to be so. I have great love and empathy for the homeless on the streets - most are there because they were forgotten. When their health deteriorated too far, or their mind failed, when despair finally kicked them into giving up and not continuing to fight against their ghosts and their struggles, eventually there was no one left to say "I'm not going to let go of you!" I'm terrified of ending up there. I'm not the co-dependent type and I don't need to be married. But I know I do need the miracle of family, a place where I can always go home and know that if I lose my fight, I will be fought for.
I want a home. I long for a place to be and to belong and to be long. I may seem like the eternal wanderer, but I'm truly not. Homeless nomad is a far cry from my childhood dream of stay-at-home mom. I'm sure I'll never be immune to the travel bug and will always love adventure and the challenge of the open road, but deep down I long for a place to unpack my heavy bags. I want a garden to grow my own food, and a kitchen with my favourite tools for all my home-made wonders. Tolkien aptly said that "Not all who wander are lost"... but some of us definitely are. I'll admit that vagabonding is an odd way to look for a place to settle, but I just ran out of ideas and direction back in Ottawa. To quote the hymn of my life, sung by U2: "I still haven't found what I'm looking for."
Which leads me into the next area. I need direction. Spiritual and vocational. If God is anywhere, I need to be led. I have asked, I have cried, I even ran out into the middle of the desert and screamed at the stars in case he was hiding behind them. I know where my strengths lie, but I don't know where I'm supposed to go, what I'm supposed to be, how I'm supposed to support myself given all my obstacles. Proverbs 3:5-6 promised us in Sunday School that if we trusted in God he would make our paths straight. Mine have been anything but. Circular and jagged. Full of bumpy sharp rocks. And while walking that path I've been asked to carry a really heavy back-pack that wears me down when I walk and crushes me when I lie down.
I won't get into all my God and Bible issues right this second cause I've discussed this at some length already on FB, but I'm currently needing some really solid answers that I'm afraid don't exist. Reading Erhman's "God's Problem" has clarified the Bible's position on suffering and put to rest a lot of the trite Sunday School answers I've received most of my life. But it's also opened a whole new can of questions and shed new perspective on suffering around the world that makes my own pale in comparison. If God/Jesus is real, I'm going to need a lot more than maybe's and I-don't-know's to get me hanging on. I'm teetering quite close to the edge of publicly declaring myself agnostic, and as I hear myself coldly mock Christian declarations I realize I'm slowly eulogizing and grieving the God I always thought I could count on.
Miracles. Why? Because I believe if God is, he should be just. Because I believe there is a Christian version of karma that SHOULD render things right. There should be a fairy-tale ending for someone who has suffered all their days dontchaknow? God should look down and see how grieved the little princess' heart is, and because he loves her so, he will embrace her with gentleness and kid-gloves cause she's been through so much already... and not ask her to suffer something else while she's already overwhelmed. Now get sicker, now lose the love of your life and carry everything alone, now get exposed to asbestos, now have your bag stolen, now find out that you can't go to SFLX after spending so much to get here, because your request to volunteer never made it through the computer and you can't afford to pay...
Deuteronomy 6:18 "Do what is right and good in the LORD's sight, so that it may go well with you" .... So when do I get to live happily ever after?