“Coward: A person who lacks the courage to do or endure dangerous or unpleasant things”
I endure, but only because I fear something worse. I am a coward. I don’t want to die.
If I spend life only being afraid or avoiding fears then that life isn’t mine anymore. I may be skilled at surviving, and I may sacrifice choice and dignity or endure what others fear, but for what purpose?
And so with a cowards’ cunning, I am skilled at surviving, sacrificing what others don’t consider, evading, plotting, and above all, keeping a few heart beats or breaths away from what I fear the most: death. I said to Linda, “’To be with loved ones’ post death, that’s my nightmare,” I shuddered, “Ug, spending eternity with Grandmother ‘helpfully’ ripping my actions and decisions apart to tell me what I did wrong with my life in detail”
In ‘Ne Le Dis a Personne’ (Tell No One’: the winner of nine film awards) the protagonist Alex gets an email at his pediatrics office eight years after the murder of his wife Margot. The email only opens at 6:15 pm, and shows a CCTV camera atop an escalator. A woman stops and looks around, then stares for two seconds into the camera. She is Margot. Alex, a man who has a job, a car, an apartment, everything but what he grieves. As he searches for what, why and most of all how with this and other emails, he is framed for murder with the police closing in. But Alex believes he is close to finding about Margot, and has an appointment that might mean seeing her. So he runs.
In watching this grand French chase scene, I about how different a person looks when they are running toward something than when they are running from something. Alex did not scramble, did not waver, and did not look back. He was running towards love, towards the dream of reunion and end of the long grieving. How could a criminal, a coward, thinking only of evading, match that?
What about me, am I running towards something or away?
Away.
I survive, but in not dying I am running from living and I don’t know how that happened.
When did I lose my passions and vocation? When did my life reduce to a focus on not dying, no more hospitals this week or delaying degeneration? Maybe it happened during the 15 months of scratching by, the fear that sets in when there are days and then weeks without all the medications, or even the important ones. Or was it because we kept running out of food, juggling money to keep the power on. Or did I lose focus in the two years I didn’t have a GP: or the twenty months without pain control? Pain is like the water which cuts through stone, as it erodes you day by day, smoothing your life into a hazy drudgery. At some point I sacrificed the freedom to dream. Yes, I’m alive, but without the aspiration beyond simple survival.
People describe their goals and dreams in different ways: some speak as if it has happened, some speak soft and shy, lest it scamper out of their life, some talk boldly, their defenses already up, guarding the hurt inside. And then, over time, that description changes, until it is mentioned with an embarrassed laugh, when and if it is mentioned at all. Others talk about it with a smile because they found something on that journey of aspiration that was worth stopping and building around: stumbling into unexpected contentment, which have us repeating with wonder, “This is my life.”
But ‘this’, a collection of medical emergencies or things I do to avoid dying isn’t my life. It just happens to be the situation I exist within. Linda, in her generosity of kindness, devotion and compassion gives me the security and comfort of our home serving as my ‘care home’ (for whether it is public, private or other facility, my disease now requires near full time care in a controlled environment). She also gave me, as a birthday gift, the grace of choosing to dismantle the emotional wall of protection she built over the two years of hospital trips, emergencies, specialist who gave up, and the conversations with ‘white coats’ about the specifics of my death.
Nothing I am or have done deserves her gift. MY life is better because she is with me, not just physically, but as ‘one flesh’. Linda’s choice to grieve with me, to wound with me, and live without emotional defenses with the person she loves most of all as I experience the late stage pain and degeneration. She bears this in order to share the joy, tedium, frustration, compassion, spontaneity, kindness and humor fully as my partner, my lover, my friend, my companion. She is running towards me.
What am I running towards?
There is no going back to ‘before’, not for me or for anyone, you grow forward, not backward. Neither we or this planet can ever stay still, the only things captured in amber are those long gone.
Langston Hughes in the poem ‘A Dream Deferred’ asks what happens when our dreams are deferred for us socially. But what about those who spend too long getting beat down just in order to survive?
Medically, I have hopes that one of the greatest medical problems from the last year is now in relapse. And if that stays true, then I will enter this summer with more energy to ‘do’ instead of just ‘be’. I don’t get any more energy or time, but in teetering stability, I will have my energy and time to spend elsewhere.
I have goals, barely visible. For example, I’d like to qualify for the Boston Marathon. I figure no reason not to dream big.
In order to qualify I have to be able to wheel a marathon first. And that means I need to wheel a 10K before that. So I am aiming to wheel a 5K. And I have an agreement that if I wheel more than two 5K’s before late autumn then we will look at renting a racing wheelchair again. And to that end, I have been wheeling outside by myself once a week. I can do 1.5 km now.
It takes a lot of planning and ‘doing’ to reach a dream.
I am tired of surviving. I want to live, and that takes risks, both emotional and physical. Even now, exhausted and in pain from my 70 minute workout at the Y yesterday, I want to shake my brain like a snow globe and see what dreams become clear as the rest of stuff that clutters life settles into background. Curious to start living. Yeah, I’m back.
I had another post but some things take days to say, though I am working on it.
A song for you Linda, and that vulnerability you have kept, which trusts me to love you enough to hold you emotionally without pain. I am sorry when I fail in that. I am thankful that you commit to this, to ‘us’ and let that vulnerability show again, even when it is hard. And for all that you do to remember me, above and beyond the disease, and come for me to bring me safe home. I have no home; I only have it with you, when safe. Thank you.
Linda, I have held on, and I hold on. I will never give up on ‘us’, never stop loving you, never. We didn’t have a ‘good marriage’, we ARE married. Our Riches, Our Poverty, Our Sickness, Our Joy – my body might be knocked about, but my soul is full.
Well, I can’t sit around being moody and ‘significant’ ALL the time (well, I guess I could be moody less, since I have that pegged). So this one is a song I was going to have about me, and had a video for it, but I found this one, which you should see now, before it is removed. It is for all the Uke’s out there (and yeah, those girls are guys, just a little cross dressing) – for Yaoi love and Uke’s: the one who is a bit more, um, well, er, the Seme is on TOP, does that help? The guys being clueless – Uke’s, well kinda.
Characters from Loveless, Sukiso (anytime a boys school has the new student fighting off his roommate by midnight and voted to be the ‘school prize’ for being kissed while crossdressed, accept that yaoi is nearby!), Ouran Club – yeah, ‘host clubs’ are about yaoi fantasy, SURPRISE!, Junjou Romantica. Watch it twice and then try to get the song (and some images) out of your head.
Last time I blogged before the video, I mentioned in a blog post about how the societal expectation of women is a construct, one that is expected by men and maintained by the silence of women.
Part of our western womanhood is beening taught that if we are NOT like the Barbie/June Clever image then it is shameful, embarrassing, and something that if talked about at all, is talked about, or rather TOLD to you in a female only assembly with the instruction of silence. Always told not to tell.
So who then is to blame the guys for being a little confused that women have all sorts of things they just ‘don’t talk about’? US! That ranges from disordered eating, facial hair (40% clear facial hair once a week, 5% every day), hair loss, balding, monobrows and thick eyebrows, PCOS, extreme cramps, extreme PMS, periods every 10 days or once every 2 years. Of course we NEVER fart and we don’t ‘sweat’, we ‘glow’. I am sure that each woman could list how they are not…. Fill in the blank. Is the ‘Swimmer Shoulders’ or even the host of disease which only now are not just considered ‘women’s disease’ like CFS/M.E. and fibro. Why a ‘woman’s disease’? Because it goes in the section the general population and most men either don’t understand, don’t WANT to know about, or is just part of the mystery of ‘you know, women get……stuff.’
Only in the last year or two were the same sexual disorders men have like lack of arousal (erection issue for dudes) which were present in women (no sensation or too much or constant sensation) were considered to NOT be part of a) a psychological issue stemming from the woman and b) probably Post Traumatic Stress Disorder. And that is AFTER studies show MRI’s that women are telling the truth and even then, it takes on average a woman FIVE doctors before she is believed.
If we had a stack of medical diseases and conditions that women who had them were blamed and shunned for having them, it would be quite the Tower of Babel. Of course, that shunning also induces silence, when the word ‘hysterical’ is involved, or is blamed on psychological factors though that includes, or has included, MS, seizure disorders/epilepsy, Autism Spectrum, CFS, Fibro, Lupus (yeah, that used to be ‘mental’) along with most genetic disorders (now only believed due to genetic testing).
We are part of that silence. We too easily accept that there is ‘too much’ to know and that stereotypes of what we shouldn’t talk about dictate our responses. I too easily accepted that, and in parts I still do.
Intersex does not mean something where there are three boxes: ‘male’, ‘female’ and ‘other.’ Though the six to eight heavy machinery laying foundation 6-20 feet from me for 10-12 hours a day and computer problems have slowed me down, to the point of very ill and supported by Linda, I will be talking about the lie we believe, the lie of ‘normal.’ Over this and other topic specific posts. It was the reaction from the intersex issue earlier that encouraged me to start with a 'Basic' intro.
Survey after survey, do you know the first thing that parents feel when told their baby has ambiguous genitalia or an intersex condition? Shame. Shame and ‘what did I do wrong?’ That also happens to be the SAME feeling that parents with babies who have large wine birthmarks on their face feel. Does that make that little boy or girl an ‘other’? Not a boy? Not a girl? Because of a birthmark? Sure, it is different: it doesn’t involve those words: the one we get all hyper about, particularly in the USA: SEX.
First, don’t use the term Hermaphrodite. Sure, it is a ‘historically medical’ term (as are SO MANY offense terms). But the same ‘historically medical’ people who made and used the terms like Pliny the Elder also said that the only cure for a headache was tying fox testicles around your forehead (People with Migraines might be so desperate to try but trust me, or trust Stephen Fry, it doesn’t work!). So unless you feel confident enough in medicine to separate the four humours from the anatomy of melancholy and can explain the use of SRY in genitalia development, please don’t use terms that those with intersex disorders (including the 1 in 500 men with klinefelter syndrome) find hurtful. That’s why clinically now they are called DSD (Disorders of Sexual Development: which to many people SOUND like the person has some puberty problem or has become a peeper, hence not really loved by many intersex individuals). It is called DSD because most conditions stem from that time at 17 weeks when the sexual development occurs (Not gender identity, but the actual 'bits').
Okay, if you, a loved one, a friend have a white spot, if you have webbing in your toes, if you have an extra nipple or like me a few extra ribs, then you have some anomalies in your 46 (or 45 or 47) chromosomes. So do people who are born with ambiguous genitalia, or people who like those with diabetes who have problems with insulin, have problems with androgen, or estrogen. Except androgen and estrogen can make you stand out as different during puberty, when you least WANT to be different that way. Of course, it also happens in male and female menopause, but we don’t email or tell all the women taking hormone supplements due to early onset or post menopause that, “It’s okay, I still try to think of you as a woman.” No more than we tell a guy with diabetes, “Don’t worry, It doesn’t matter to me...just, um, you know, use the stall shower after the game...cause, I don’t mind that you’re different but…”
This may appear to be me going wonky, but please, yes, have questions, have opinions but if you want to reassure me, question me, or others about intersex conditions, please, please put it in the comments. Why? Because so few people EVER talk about this that I don’t want a bunch of whispers in emails. When someone does a search because they just got some doctor’s report and have to wait 2-6 weeks for tests, I want them to find the questions, the things people might have already said to them in comments, and dealt with. I’m letting you know, if you email about it when I post like this, I WILL put your question/statements in the comments.
Why?
Because I wrote that three million women in the USA have just those 4 intersex conditions, I didn’t count the dozen plus other ones, and yet, I got a lot of assumption about one person: me. Yeah, because of those anomalies in my 46 (or 45, or 47) chromosomes, they are doing a genetic and chromosome work-up and a doctor seems SURE that I have condition X, another person thinks I have condition Q which is actually rare enough not to be listed in the intersex/DSD conditions (different conditions means different parts of chomosome code are missing, which means you can be prone to heart, lung or other conditions). But either way, if I have Huntington’s or other diseases found from hereditary (remember that doctor who was convinced I was inbred, my mother was not amused when I let her know my medical records sort of now indicate that her sex partner was granddad or another close relative is my ‘real’ genetic father) or other chromosomal issues, maybe it will help. For the most part, the diseases found cannot be treated, or some can, but not in Canada unless you are in Toronto. And since in this city people can’t get diagnosed for cancer because they won’t actually give them an X-ray, or follow up on blood work, I am not seeing stem cell treatment in my future oddly. But I am going to talk about it.
If you live in a city, if you know over 1000 people, including bank tellers, store clerks, managers, students, people in your high school then you already know, several people with Intersex/DSD conditions. That is what I said before and I say it again, no, not on the internet, face to face. If you feel you ‘know’ someone who has an intersex condition over the internet, I am telling you that you ‘know’ about 4-5 people minimum who have a DSD/intersex condition in your regular daily, monthly life: face to face. They just never told you. And maybe we should all ask ourselves why?
When people transition their sex to their gender identity as an adult, it is hard not to notice, not to hear about it. Because people talk, and look and have think because they saw it on a TV show they know the score. “Not a real woman”, we hear and see the intolerance of those around them. What do you think those whose earliest memories are of a gaggle of doctors examining, measuring, re-examening their genitalia while making comments to the student doctors who were watching are feeling?What do you think those men and women whose early memories are those of surgeries they were told to lie about to class mates, and were told, ‘Kept it secret’, are thinking?
Even the most basic intolences I have heard: sitting next to Linda, my spouse with a German mother, about how ‘Those Germans are heartless bastards to the last one.”, heard how “lesbians just need a good.. (arm pump)..ya know” or "all them short haired lesbians want to be men". I have been treated and all but told that being disabled and being on welfare was the same thing (and the same type of people..ya know). That drug users are a drain on society (I know a few transit workers who are steady heroin users), that people who take X should be locked up (I tell them I take drug X – “Oh, but you’re a different story”). I am pretty bold, but I didn't stop enough of that crap. I too ended up with a head full of baggage; actually I think I have an whole train of baggage cars! So imagine, in Cardiff, when an eight year old girl with leukemia finally had her hair grown back long enough to go to school and the first day her head is set on fire by her fellow schoolmates (true story), how much attention do you want to draw to yourself?
In the UK, there is anti-bullying day, and the Prime Minister wore a patch. Is there an anti-bullying day here? What kind of rape is it when classmates, children viscously open about their stereotypes, want a look and force you down to rip off clothes and check your groin? And when adults, who have the same stereotypes, just a little more restraint, just want to whisper about it, or treat a person different?
The responses regarding a few paragraphs of about intersex and that, yes, I am being tested for one, depressed me to the point that my health deteriorated because of what people thought, in a post about me having a fever. No one seem to care about the fever. But over a dozen emails, from people I had not even had an email before to let me know their ideas on a topic they knew next to nothing about. We keep the silence, and we enforce the silence.
Linda said not to write on it again, because of the pain it put me through. She did want to have to pick up the pieces, she doesn't want to see me hurt. She remembers the fragility.
I lost my will. But I'm back. And maybe I will lose some readers, or be hurt or burned again, but I will talk about this, about FSD, about all the things women are supposed to enforce the silence about. And convince others to STOP the silence about it: Neither I nor the women who get clothes from the men’s section (or the men who get clothes from the women’s section - go androgyny, YUM! Okay, terrible clothes for an archer but he is looking good!) want to be a the opposite gender (at least that is the majority – male cross dressing is primarily a heterosexual ritual for reasons I am still trying to figure out – 10% of hetero men do it regularly, (two dudes, deal with it) almost ALL have done it at least once for some reason - whether sober or otherwise). As for women and crossdressing: we steal everything that might make us look good – your shirt is our sleepshirt, your sweater…MINE NOW! We are crows, if it is shiny, it is mine, if it smells good, it is mine! Mens socks are thicker…mine! I used to buy my shoes in London at a store for gay guys, because it had FAR better selection in better colours (pink, powder blue, a velvet burgandy) for larger feet and wider feet. Hey guys: we saw your tights and high heels in the 18th century to make your ankles look svelte and we have been wearing them ever since, same with the eyeliner we stole in Egypt. And the corsets to keep a gentleman slim in 1895-1910 have become the underlining of today’s goth girl corsets.
Sorry, clothes…got distracted.
Okay, research done, articles being written, now time for kittens and cats. Oh geez, out of room kinda. Um, I hope more tomorrow if the fever isn’t back, but this here is Oreo, a black and white cute little cat that likes me, hates all other cats and isn’t too fond of Linda. Also my purple Skelanimal top which I like a lot because it helps show off my…um, kittens? Oh, the reason that Oreo isn’t fond of anyone else is a territory issue. You see, Oreo walked into my lap and made herself comfortable. She rode everywhere with me, the only problem is that every time I got her off, she would just figure a way to step back on as I wheeled past something. When she got on the first time I said, “Oh, do you want me to be your owner?”
As you can see by the look she is giving Linda, I got that relationship wrong, as she is saying, “This is MY property, back off!” But still a very good lap cat and 10 years old, though she looks much younger.
There were also two twins, the one in black is the dominant one, female and is bigger (and a bit of a bully). They need to be adopted together. Alex, the boy, was very, very cute and inquisitive, but we could only see him while throwing treats to the back of the area. Here Alex is very interested in the Camera. Very, very interested. Okay, that was your ‘AWWW!” moment. Back tomorrow with some lighter stuff I hope. With all the noise, earth shaking and heavy equipment so close it is hard to maintain my health and my state of mind.
For those of us who have hard to diagnose diseases, how often has the ego of the doctor been of more importance than our well being? How often has what they ‘feel’ been our commands? Now try to imagine living 15 years ago, pre-google (yes, I know, PRE-google?), and before genetic testing was available and imagine what it would be like to see those doctors 2 hours after the birth of your child. Imagine being a child and having five or more of those doctors telling you what to do, what to think, how to act, and how often to come and be touched by them, from earliest memory. Imagine pictures of you, your genitals being passed around at conferences, being taken against your will, at four, at six, at 12. Never get between a doctor and his ego, his paper, his publication, his test theory.
Without diversity, there would be no wonder in the universe. I'll let you in on a secret: Women fart. Linda doesn’t of course, but OTHER women. Women can have PMS so bad, or mood swings from it so violent they scared me (how can a woman that small scream so much!?). And women can miss a period while hetero partner is away without it being a virgin birth. Oh yeah, and some of us women have little mustaches, and some of us have fuzz, and some of us have lots and lots of black hair all over, and big sideburns. And we are still loving and lovable.
I decided to take everyone’s advice and have a day off, just rest. Except it was sunny. And here it rains every day by noon. So Linda and Cheryl wanted to go scuba exploring, and I helped them find a series of heated tidepools on the edge of the Southern tip of the Southern island. No one swims out in the surf because at 2,700+ miles from the USA, if a rip tow takes you out to sea there is only…um…Antarctica as the next southern piece of land.
Then it was the drive through the woods where the wild things are. Then the visit to the state park of lava trees. And to town to pick up mail. And I did the decoration and preparation of 17 postcards. And then to sleep in order to go see the lava viewing. It was 5:30-10:00. I got 1/3 of my sleep and had a giant nosebleed. I thought I shouldn’t mention that until AFTER the lava.
We parked and everyone who passed me stared. The state workers and police who guard the viewing of the lava for safety said, “We don’t HAVE a blue badge parking section…we don’t GET wheelchairs.”
One person who had brought his wife in a wheelchair said, “Oh, you’ll have to stay behind, look at the lights of the lava going through the lava tubes.”
I had been told it was 1/10 of a mile. That was off a bit. Several workers stared then yelled, while I started the hopping of my wheelchair on the back wheels from one bulging bubble of lava down and over a crack to another rippled fractured lava stone. They yelled, “It is over three quarters of a mile!”
I yelled back that I was here to see the lava.
Lava is geology is motion. It is solid rock which is heated so hot that it is liquid, a liquid river of rock running down to the sea. Only something as large as the ocean can cool the lava in an explosion of fire and a smoke of acid and tiny stone fragments. And then the island is larger. This is the beginning of the story, the face of what we float on in tissue paper thickness of land called ‘plates’. Yes, I was going to see the lava, not just heated sulphur fumes but the lava itself. Click on the picture to see the waves behind the molten rock as they are about to hit it, creating another plume.
The path to see the lava wasn’t. There was no path. There was a lava flow on which reflective strips had been put. The first 200 meters were individual boulders with cracks large enough to eat my tires and not a flat surface in sight. It was hell.
After that, I decided it would take too long (I only had three hours to get there, watch and get back), and though my heart rate increased beyond what should be my maximum heartrate to 170-200 beats per minute, oxygen deprives and with nausea, I was helped upright and used the push handles on the back of my Ti-lite like grab-bars in the bathroom. It was falling down with a wheelchair, casters up, using that motion to go forward until I did fall down, or over the back. Feet flipped and I ground my ankle into razor lava (at least I didn’t feel that), I had legs which couldn’t keep up or my body lost balance and fell left or right. There were breaks with drinking Gatorade and water, and then onward, and onward. A 15 minute walk they said. Well it was an hour for me, with Linda holding me up and using her flashlight to find the next direction to lurch, a crash in motion.
It turns out that this beats boxing as I sweated from EVERYWHERE. Cheryl noted that my knees, which have NEVER sweated were wet once we got there. But I made it.
I couldn’t face leaving. One more picture. The truth is, I was oxygen deprived that I didn’t understand English, or really anything. I had used up everything to get here and see the lava. “How did you do it?” I got there by using every ounce.
After a short 30 minutes it was time to go. More falling. Cheryl told me she would need to hose me off. I was down, Cheryl telling me I couldn’t lie down, “Never Give Up! Never Surrender!” I used my hands as fists on the lava to go on. As we got close, followed by state officers and police, Linda said, “Look at the hut, we are almost there.”
I said, “close doesn’t matter, only once the finish line is passed does it matter.” I fell, and again, and pulled myself in my chair, and jumped a few more boulders. It was 20 minutes longer getting out. The officers behind me said that not only was I the last one out but I was the only person who had managed to get the wheelchair all the way to the viewing area. One half of my body was covered by muck, and I was wheeling one push at a time when the state police truck stopped and the officer thanked me for “an inspirational experience”.
I was confused. I WAS here to see lava. I wanted to see lava. There was lava. Ergo, I was going to see Lava.
Linda, Cheryl and I were all exhausted beyond description. Cheryl had to do the same as me with a hiking pole, an ankle run over by a tractor, a post broken pelvis and a back which was so crushed, it would leave a hand or limb limp and unfeeling when tired. She took the same trail. We were there to see lava.
As we finished and got to the van it started raining. See, I wanted to rest...but it was the sun's fault.
Cheryl couldn’t move, nor could I, so Linda who was driving opened the gate but when she closed it, she fell. Fell hard on our jutting pieces of lava, cutting through her jeans and slashing the hands she held out to stop her fall. I cleaned the dirt out of them, slowly, to stop her passing out. The first aid kit we had on the wish list was used extensively (about a quarter of it used up for all the wounds). The wounds are clean and healing but her hands are damaged. I will not be going to the top of the mountain to look at the stars. I would not do that to Linda, driving on non paved roads with those hands. Things happen, we all have had accidents happen, things happen. A van where you try to turn the key to open the door lowers the windows instead is easy to lock the key inside.
Tonight we drink champagne bought in Waikiki for what we accomplished. We saw the face of this earth: the raw creation. Tomorrow...I WILL rest...after I get those postcards done.
In some days I will be heading to Hawaii, I think it is in a week.Some people think or say that I begged and emotionally manipulated my way to a vacation. Others have ideas about what Hawaii means to me. Most don’t know that all this time in planning I never believed I would return from Hawaii. Or that I worked on a suicide plan and started stage one because I believed that Cheryl and Linda were going to Hawaii to only make me happy. Or that I have spent almost a year working to go to Hawaii and 10 weeks working every day, every minute selling things, including hundreds of dollars of books. Nor have I asked for aid to go to Hawaii, or taken money with one exception (that I found out about). Times are hard. I don’t want to do that to my friends.
I have diminished mental capacity (in certain areas). I also have limited physical capacity. It has and will take me eight times longer to do the same blog as it did my first year of my disability. This naturally restricts what I can share about my life. Even though I work, work, work. I feel I am on a train where the events around me are rushing by, and I can never be in the same time stream as anyone else around me. I do not know what day it is. I know I had a disagreement with Linda, an argument. That was last week. I know that because someone told me in an email I read today, I don’t know what the argument was. That is what having no memory beyond a day or two means. You can come up and punch me today and I will be mad. You can come up in four days and ask me how am I, as it looks my nose is swollen and I will thank you for noticing and think you are nice but tell you that I have no idea what happened, I must have fallen down. That is one of my impairments.
So I am not going to Hawaii to make memories. I am going to Hawaii because I love Linda and Cheryl. Linda has never been to Hawaii. Cheryl has never been off the continental 48 states. I wanted them, my family, to go with me someplace where they could experience someplace new. I dreamed it, I dreamed what it could be and I wrote it on my brain board. But just because you try doesn’t mean it is going to happen. You simply don’t know what is possible until you try. So I tried. And I convinced Linda and Cheryl to try.
I will likely not remember being in Hawaii the week after I get back. I will return to my room, across from the construction, and try to survive the winter.
These last two days I have been on oxygen almost continuously because I pushed too far, and the weekend took it out of me. That is what happens, I do something, I plan something, like the plans I have on my board for getting my wheelchair onto the breakwater: something I did because Cheryl had never been on the breakwater. And I wanted all three of us to go. And then I try. And when I do, I do it all, I leave nothing back, no reserves. So I pass out. Or stop breathing. Or aspirate. I have aspirated into my lungs every day for nine days. When that gets infected, I get a fever.
Over the past 12 months, Linda, Cheryl, I and others who help have sent out the equivalent of $14,000-$19,000 to other people (in the Postcard Project and other ways), many people that we know almost nothing about. As one example, we of the Postcard Project have sent enough postcards for every mile to cross the USA: 2,900. If I live a few more months, you could drive from one coast of the United States to the other following the trail of postcards laid end to end. But they don’t lie down on the road but reside all over, here is a picture one reader sent of the postcards they have received.The Postcard Project, like Hawaii, was something I wanted to try. I wanted to believe, and put my heart, my money, what I could sell, and yes, my writing, to create a community which believed that people are important. In the 70+ weekends since I started, I have NEVER had a weekend without creating, matching and sending postcards: whether hospitalized, whether ill, whether passed out. Much of that is due to people who gave in ways I can never repay: financial support, stamps for the postcards, postcards, and some weekends, Cheryl and Linda physically carried me. One weekend I leaned because of fever, when not passed out, with an oxygen mask on my face, finding Linda and Cheryl having collected postcards from a list I made earlier of people ‘most in need’: the dying, the lonely, the children, and those who needed encouragement when tragedies had struck. People mattered. And, so when I was conscious, oxygen mask on and at maximum, I worked on postcards. Worked knowing if I died or was hospitalized that Cheryl and Linda would post the postcards I finished, or help finish and post the remaining ones.
Is it so strange in this world to say, “I will be there for you.” And attempt with all human effort to do so? I made a promise to people: “As long as I live, you will get a postcard through your mail box”
But I also have OTHER plans and dreams. And because I am open about them too on the blog, and open about my worries, or anxieties, I have many, many complaints, all Anonymous (I kept about 80 from the hundreds). The following is typical of what I get lately.
Anon: Why in the world would you have a wish list for people to buy you stuff while you are planning a trip to Hawaii?????
I guess the answer is: “the same reason other people do.” I didn’t go on a summer camp-out, or vacation, because I can’t go out in the heat. Many people did. Most people I know have wish lists. When I can, I give those I know and care about things that surpass or come from those wish lists.
Don’t worry, because the Anon’s made me feel so dirty, I eliminated virtually everything on those lists that was not for Linda, or a memory device for me (I can go look at the list and know what I am saving towards). I am EXTREMELY thankful for those who got me gifts off those lists over the months. I am, because in the nights where I was weak, in pain, or impacted and hurt so bad I wanted to cut myself just having something to stare at helped a lot. Ask Linda. Ask Cheryl, since I know she bought often. Or Linda who said, “I would do anything to take this pain from you.” Every Anon says that my life is a lie who hurts the ones I love. Mentally I am incapacitated in certain areas. I can regress for long periods. Telling a 5, or 8 year old that because they are alive and ill, the two ‘Adults’ who take care of them will never be happy, that ‘Bethie’ is BAD, that ‘Bethie’ is a liar doesn’t help. Telling a young teen from a sheltered society where she is taught only to obey that she did not obey, is bad, and she does things GOD does not like doesn’t help. Because it not only brands all those who give me care as liars (and co-thieves), but leaves messes, emotional messes and a human wreck to be cleaned up. It is easy to destroy. It is hard to love.
Cheryl bought off the list because she loved me and knew that things on the list, like a manga or book make me happy. She likes to see me happy. That is her choice. The DVD’s I worked and saved for on my own. And when pain makes me a bit off my head, having another reality to see and live in to distract can help a lot (thank you 21st century!).
Don’t worry, people don’t buy any more and I am fine with that too. I don’t understand time, and days and weeks and month starts or ends. But I know that my friends care about me, love me. And so if someone wants to be angry because I do need specialized socks, then I guess they will be angry.
When I give gifts to friends (and strangers, because I ‘feel’ they need it – to know the joy of spontaneous caring), which I do every week, my presents to others are ordered from around the world, taking a month or two to arrive. They are limited editions or rarities of interest which I spend time to find: from soap called ‘Blood’ from Villianess to out of stock limited edition 2005 cult stationary, or sometimes just Hello Kitty Gum and something fun like a Yo-yo. I get an allowance, I have ‘mad money’ which is put in my account and that I choose to spend it on postcards, rubber stamps I think people will like, or gifts to give to people is my choice, right? If you care about someone, if you LOVE them, then you want them to be happy. I love dozens and dozens and dozens of people, most of which I have never met most of which I will never meet. But I love them all the same. The Anon's would want me to think, "Oh no, what if they are a scammer!" If they ARE a scammer, and laugh at the stuff I send, then I hope they can remember the love of the act, later, when it matters. But truthfully I would never think of anyone who has emailed me as a scammer (Well, maybe when they told me I won the BBC lottery worth 12 million pounds, or when a princess in exile needed to put 15.6 million dollars in my bank account)
Some people, over time, we will write, email and gift each other regularly. This is a choice I do and a choice some who care about me do too because we like each other. My favorite plushies are all gifts: Rabid (the Squirrel) who has holds for quadriplegic hand grips and watches shows with me, Pounce (orange stripped tabby), HKA (My punk Hello Kitty Beanie Baby), Miko (The grey cat guarding me on bed days), and Eiki Eiki who holds Linda’s heart. And when I can’t remember who gave me the plushie, Linda is there to tell me.
When I have a bad episode, or regress, to a period where I am terrified of everything, Cheryl says that if I am given Eiki Eiki I calm down. When Eiki Eiki was made, Linda chose the heart to go inside, which she was supposed to make a wish. Her wish was for my life. Eiki Eiki holds my life: Linda’s heart.
I will soon be moved from here to Port Angeles, stabilized then a day later, moved the two hours to Seattle and stabilized again, then moved to the airport. I only spend nine days in Hawaii, but six to nine days in the 120 miles getting me safely to and from the airport. And maybe in Hawaii I will do and see things like float in lagoons of 100 foot visability and watch dolphins play (yeah, it exists). I might see the 1,400 foot waterfall in the Valley of the Kings (still inaccessible for wheelies), or the Green Sand made of semi-precious stones (inaccessible for wheelies). I could explore a tropical rainforest (so far inaccessible), or see a plantation town intact from the 1920’s (kinda accessible). I might see flowing lava, or ascend to the top of the mountain, above the layer of heat that makes the stars twinkle to stare at the stars, bare in glory. Or I might not, I might not see the 16th century Kyoto Temple, I might not see anything at all. And all those books sold, and all those DVD sets sold for nothing.
But I came up with an idea and I tried. And because of that idea, and work from Linda, Cheryl and I, now Linda and Cheryl says going to Hawaii is “okay”. We are going to Hawaii and all is paid for (or so they say to ME). Yet almost every place I have on my top list to go to has an explicit warning: “Those with heart and lung conditions should not under any circumstances proceed ……”
I never meant to come back from Hawaii.
I love Linda. I love Cheryl. They know I do what I must to survive, whether that is badminton, or a 10K. And I pay the price. Is my risking my life worth looking at stars? Yes. Is my risking my life worth flying to Hawaii? Yes. Is my risking my life worth spending 50+ hours working only on postcards broken only for sleep? Yes.
I do not want them to say “She was alive, but she never lived.” In many ways, I would that people remember what I tried to do: care about people and remind them that they matter. My name doesn’t matter, the idea does. I wanted all people but particularly those alone, depressed, in darkness, or in trouble knowing that someone worked every week, regardless, because no one should be in those states without people caring. And someone did.
This weekend, I came up with the idea to go to New Orleans. Cheryl has never been to New Orleans. Never been to the French Quarter! This is a tragedy that must be remedied!
Right now, it is just an idea, a train trip to New Orleans, where I can lie and watch the country go by. But I don’t know what is possible until I try. So maybe I will come back from Hawaii. Even though I will know of it only from pictures. Pictures I took. And Linda and Cheryl will have memories. And maybe this winter I will dream of New Orleans.
Fly or Fall? I face the wind, on the breakwater, face the sea and imagine I am a seagull, riding the strong current. We stopped first at the farmers market. More on all this later, as now I might be fevered and sick, but I don’t regret how I exhausted myself. Live. I’ll let the photos do the talking. No, not local seafood but soaps, hand carved by a local soap maker, who starts the night of the market for the next market. Then some fresh peppers. The sun shining. I found myself a small Japan town, only two stalls wide, where customers wearing kimono’s speak Japanese as they buy food for Udon, with Daikon’s and other vegetables. From there we went to the one place I used to jog all the time, every day for years: The breakwater. When I was in Wales, all I wanted to do was jog it, I yearned it, I dream of jogging it. Longer than a km, it has a path to get on then a pedestrian u-turn to squeeze past in order to stop bikes, and roller blades. We had to dismantle the wheelchair completely. I hurt my arm, Cheryl hurt her back. We paid. But we rolled. The wind was high and smashing the water against the century and more old stones, sending up jets of water and covering the whole walkway with spray at times. It was the breakwater. I was home. Wheeling back we saw a large seal diving in and out around in the protected side, along with sailboats and pilot boats. So much more to tell… Back home for hot chocolate and doing postcards. There is beauty everywhere, all over the world. It was a good couple hours. Fly or Fall.
