i was seen // hangover diaries

When I was little and sick, my mum would fetch me a snuggly quilt, make perfectly crisped toast, sit by my bed and pat my back so soothingly that one day I would try to emulate that exact motion for my own young. Having your mother sitting there is the gold standard of being unwell, and it's harder to find once you grow up. You're so seen and loved in your pain when you're small. Symptomatically alone, but that's where the alone stops dead. There's no emerging from your illness and being asked "where were you? Oh you were in your room with a fever for three days, I didn't know." Nope, she's seen every limping trip to the toilet, and passed you water the whole time.

But now I'm grown, and no one is patting my back.

My cushion is damp. I have watered a lot of cushions and pillows these eight years, preserved them in salt. I don't soak them with gushing waterfalls anymore, because shock and grief have mutated into sober familiarity, a mellower, gentler beast. I sometimes think it's unnecessary that it still trickles out...like there is a pool behind my eyes called 'chronic pain' which ought to be empty by now. I cry the exact same tears, the cause is unaltered, and the emotions have long been acknowledged and disected. My pool seems to have a refill mechanism when I'm lying quietly, and my body is raging ungratefully that I participated in life outside the home. How dare I. I was once asked, "but can't you use less energy when you're out? Tone it down?" No. I can't. It tumbles out, my small supply, and I watch by in trepidation, powerless to gain more power, or prevent loss of power. Powerless to prevent my own suffering.

The droplets are salty, but the salt isn't bitter.

The droplets are more, this is disgustingly uncomfortable, as usual, as expected. It's just as I knew it would be. It's identical.

No one can see into the misfunctioning cells, muscles, sense of balance during the time or afterwards. It's in the dark recesses of me. I can tell them, but it's so dreary and morose I can barely be bothered, so I will just feel it myself. If I'm not seen by anyone in this time, if no one can imagine my pain or view it, let alone cure it, how alone I am. How nobody I am in this moment. I must lie and wait, wait till it eases, invisible, feeling helpless and dispensable...but for my all knowing, all seeing, sky painting, language making, human weaving, gift giving God. So I am seen, I am not forgotten. I am as legitimate and valid as a mother's sick child.

This thought is warm and luminous.

On my porch this hungover December, hungover from festivity-x-suffering, sat a large woven basket with my name written on it. I unwrapped a large sheet of fabric encasing the contents to find no ordinary pre-packaged hamper. It was filled with home-made cake I could eat, home baked cookies, and crackers, and hummus, and bars. Sparkling water, tea, soap, berries, every conceivable festive, delicious and healthy thing in sweet pottles. It contained every special treat on the menu to those with sensitivies, many un-buyable. It was a bottomless pit of seriously thoughtful time consuming gifts, brimming with every thing I hadn't shopped for and hadn't baked and wasn't going to.

The note was from the mamas in the group I don't go to. One of the harder things all year was seeing and knowing that women with babies were meeting in groups and I couldn't manage to because - well, I had to nap twice a day and it fell during group times, and if I used energy seeing people I couldn't make it through to dinner time. The usual complicated trickle down of Chronic Fatigue Syndrome.

The note said that they dearly loved me. They barely know me, they haven't seen me enough. I have been missing from their times together, they met dozens of times times, and I tagged along twice. They're talking about the verb - to love.

To extravagently love someone who has done nothing for you.

It would be easier to make a huge handmade hamper for a person they had grown fond of all year, but no.

That hamper said: You are so seen. You are no outcast.

It was the most overwhelmingly golden standard, in adulthood - love, because they also know the "you did nothing for this, but I love you" kind of warm luminous love.

someone on my porch

I was feeling blue going on grey with despair today, and prior.

I began an ineffective inspirational pep talk about how much I have to be thankful for. In a mind as emotionally limited as mine, all I could think was, “Yes. But it’s hard to appreciate all these things when you feel this ill.”

Only two words explain the physical problem: endless poison. The common cold which comes knocking to all each Winter, banged on my door in March and has not departed except for rare half-day trips.

So then, keep plodding. Life goes on.

And life is going on, but in such a painful manner that I dread its continuance. I wake with my red throat, pudgy tonsils, eggy glands, and I sleep with them. I carry leaden fatigue with me for as many hours as I am awake, and then repeat and repeat and repeat. I feel like every vein is infected with this nasty achey poison. I find myself longing for ‘just one day off,’ but I know it would never satisfy.

   

At some point, my mind became sad too.

We scour the internet for a specialist, a clinic, a somebody who knows something about endless poison. Last year, and the year before, my medics exhausted their virus ideas. Leaden and lifeless, I remember how we hoped this year of stability would be the environmental answer to the problem.

Wolfie barks furiously at something outside, and the something happens to be someone on my porch holding a bouquet of flowers.

It's for me! The angel someone didn't know that I was feeling this way, but knew that constant sickness can bring on misery. Over and over, something has come when I feel most crushed. I put the bloom in a vase with water, and dry my wet cheeks, and keep thinking that it is providence. What else could it be? 

  

words for wednesday {page 10, advice}

Weeds are flowers too, once you get to know them.”

 

A.A. Milne

“The best way out is always through.”

Robert Frost

Last week had some tears because I had a difficult conversation with someone who implied that I needed to do more ‘spiritually’ to get better, and who thought if I believed I was better I would be. Sometimes I have a sad week because I’ve told someone that we can’t catch up and they ignore it or off handedly ‘forgive’ me for the inconvenience I’ve caused them.  But the experience last week was worse because it made me so frustrated to think that some people don’t see that tough things can bring about good, that they don’t all go away fast and its part of the grand plan not a failing on the sufferer’s part.

Having CFS is horrendous at times, I cannot recommend the experience – my tissue box knows that I have plenty of ‘why me, what happened to my life?’ sessions.  But right alongside that grief, I also see that incredible good has come out of these years and I’m quite ok with the way it has shaped me and changed the way I live.  

Last week I was wishing for compassion and empathy rather than advice or rejection.

I wish we could crawl along with people in their lows as readily as we’ll party with them over their highs. 

“Although the world is full of suffering, it is also full of the overcoming of it.”

Helen Keller

I wonder, is overcoming suffering being freed from it or going through it well?

I thought I was the only one. {Meet my friend}

found here

A lot of unexpectedly good things come about from a health collapse. Trust me. You start to think some unexpected things, change in some unexpected ways, and find that you are drawn to sick people – which you never expected. When you meet a sickie, it’s like meeting a fellow Melbournian in Germany. In that sea of people you find a person who keeps saying, ‘Me too! I know exactly what you’re talking about.’

This particular friendship which I’m going to tell you about began in the kitchen at the flat I was living in during my university days. I was exhausted after a gruelling day of trying-soooo-hard to attend uni and really needing to be in bed. She was visiting someone at the flat, and so we ended up both needing to go to the kitchen for some reason. Now, when you are sick, you really don’t want to meet new people at night in the kitchen. It’s just something you absolutely dread because it will take up so much energy and because you don’t have any, you will go into energy-debt. I’m not sure quite how, but we began to talk, and it come out that neither of us were well. In fact, we were both sick with the same illness, and shared a whole host of common experiences from our ill health. We actually had a most enlivening chat that night. That was the beginning, and now we have a precious understanding of each other’s health, but we have found we have far more than that in common. 

My friend is the kind of person you want to know. She’s a book-reading, tea-drinking, dog-loving, cake-baking, laughing kind of person. You don’t meet her and think, “goodness, she is a tired and sick-of-life person”, which wouldn’t really be surprising after being severely sick for well over a decade. She’s loving, empathetic, generous and hilarious when she could so easily be bitter and depressed. 

I told her that I sometimes struggle with feeling jealous of all the people around me who didn’t get sick; who got to continue with their goals and dreams.

 She fully understood my feelings, but related to me that she didn’t even get to finish secondary school! We laugh and laugh about this, this tragedy. Being unable to finish school could so easily be a touchy and emotional topic for someone with crushed dreams. Despite being bright, talented, and losing the ability to put her life plan into action, she is completely fine with it. Her formal education ended, but she kept on bettering herself.  And now she can giggle about it! And here I am, cut that I didn’t get to finish university. I silently remind myself to get a bit of that perspective, that courageous ability to make lemonade out of lemons.

I love her for having taken this journey to contentment. I know it’s been a journey, because she’s told me about the years where she wasn’t here yet. I don’t think you can ever get sick and immediately go, “Ok, no worries. I’m totally cool with this.” Grieving is the natural process, but it can either continue on and on and produce bitterness, or plant the seeds to a new way of life and contentment. I’ve seen it grow a new life in some people, and the life that I see is fresh, wise, and inspiring. Why do we think that there’s only one way to live, really live?

I have often thought, “I don’t think I could bear to be sick if I had to move back home and hadn’t met Ben.” Or I think, “If I was still as sick as I was when we first got married, I couldn’t keep on keeping going.” But my friend is older than I am, less well than I am, living at home, unable to work...and she’s happy with her life. You can understand why I’m glad to have met her.

She wrote to me, “God has been able to teach me things I never would have been able to hear if I was off living the life I planned, and I am so grateful for that.” 

She says that she focuses on the good, and then the not-so-good becomes less. 

I get to hang out with this person who has learnt about love, empathy, life, and most of all trust. I see how her life has had great value. And when I see that, I start to see more clearly that all the emphasis on life milestones and success are not the whole story. Secondary school followed by degree, followed by vocation followed by family – that’s not the only way to live a worthwhile life. At all. Every set of life experiences and gifts adds a value to the world and fills a role. She’s knows how to care for people, a skill that we need more of in this world. And if her life had gone the way she’d planned, she wouldn’t have been so well equipped to care.

This quote I found here {and it was first written here}. I like the emphasis on living & giving right where you are, rather than pining after the life you had planned. My friend has definitely taught me a lot about that.

“Avoid Comparison-  You are enough.  End of story.  That girl over there… you don’t want her life.  Because you don’t have the grace for it.  You have the grace for yours.  You don’t have her kids, her job, her talents, her hubby, and her network FOR A REASON.  Because you are needed right where you are at.. by Your kids, Your job, Your hubby and YOUR network!  Do what you can, with what you have… right where you are at!  And be grateful..  Always be grateful.  What you are taking for granted, someone else is praying for.”

   

wish i were a polar bear

found here

It’s a cold gray Sunday, and although everything is technically right with my world, I have this insane urge to hibernate. I want to put my white bear skin on, snuggle up in a deep cave, and only wake up when I can cope again. I struggle with this fragility which engulfs me if things have been too busy, too intense, for too long. And they have been. Two weeks of extra stress is enough to tip my fine balance over. 

It used to be that stress affected me far more physically. It was the headache or migraine, the bowel trouble, the dizziness. That was simple. I could hibernate in a wish-i-were-a-bear kind of way and say, “I’m not well” to the world. Then I would cuddle up with my quilt until the pain had subsided, and emerge in a day or two when I had improved. 

But when you’re physically about the same as usual, and it’s an emotionally overwhelmed pain you feel, it seems different. Physical pain seems more legitimate than mental, in this world where mind pain is taboo. I didn’t want to write and say that I was ‘unwell’ to the person I was supposed to see today; because I was worried it was a lie. 

Was it a lie? 

In my state of no-confidence, I felt unsure and sick inside. Maybe it was a lie and I was a cop out? But the little intact part of me said no, it wasn’t a lie.

It absolutely was the truth. The mind is part of the whole body, and the mind can be unwell just as the body. ‘Unwell’ is still the term for it. And to be honest, it was exhaustion and dizziness and sore throat mixed in with emotional fatigue. If stress used to give me a migraine, and now it gives me a teary fragility, I still need it to let myself recover. I still need to let myself continue to travel along this road of getting better, and sometimes it means I have to disappoint someone. Sometimes, a mental health day is just what the doctor ordered.

Ben has empathy supplies beyond anything I’ve ever known. When I want to hibernate, he wants to be ten times bigger so that he can wrap me all up in his arms and keep me safe. I imagine that I’m a tiny Polly Pocket doll, and I just get to curl up and nuzzle in. When I couldn’t fall asleep the other night, he began to hum an old hymn which I grew up singing as a girl. 

It’s the most beautiful song of security, and hope.

It was penned by a rich lawyer in 1873, just after he got a telegram from his wife saying that their children had all been killed when the ship they were traveling on collided with another. He is rooted in the peace of knowing his God.

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

please pinch me, hard

The sky has no colour, no life, just a melancholy and listless gray which permeates all that lives beneath it. Survival is possible, but I don’t think radiant joy is. 

Bit by bit, it peeps through, that soul and earth warming star, the sun, and makes every living thing sparkle. The sun stipples the trees, it warms my back, and it makes all living things want to live more. Golden and beautiful.

That is how these past months have felt, like glorious warm sun kissing my skin and hair, after an eternity of weary, depressing gray. 

I am a lamb frolicking in spring, with fresh vigour. I have taken wobbly steps out of a dim-lit hovel in which I’ve been trapped, trying to survive; into fresh air. I am a bird soaring in the skies. I am intoxicated with the blessing of health. Always in my mind is the gray sky, the dungeon, but revelling in freedom is so much sweeter for the suffering which came before. 

The absence of continual pain is shocking. Why don’t I have a headache right now? Why do I not need to rest after seeing those people? Why have I still got energy, after such a busy week? How come I haven’t collapsed in bed feeling ill, dead? Why haven’t I needed those drugs and a trip to the pharmacy this week? I begin to measure my good health in weeks, and months, rather than hours. It used to be, “I had a well hour this morning...” now it’s “well I’ve kind of had a well month”. That’s kind of 720 hours. Not all of them well of course, but overall. 

Am I sane? Please pinch me hard, because I don’t want to wake up and find it was a dream. Alive. Not half dead, as I am accustomed to surviving.

“I feel like me again, the real me”, I keep repeating to my ever patient husband. He is excited, amazed, and curious, because he has never met the old me. I think he likes it. A lot. It's kind of like Snow White waking up, and she can finally kiss her prince back.

When did I last sob for my despair at the awful endless illness – for doctors who couldn’t help, for years ticking by? Rather than crying to God for healing, I pour out my thankfulness.’ Thankyou’ never ever does it justice, but I know he knows that overwhelmed feeling I have in my heart. He doesn’t need me to articulate that feeling.

I feel excited that in two weeks I will turn 22. Somehow celebrating a life of health excites me a lot more than recognising another year of survival, of patient (or not so patient) endurance.

I just realised, I’m not enduring life at the moment – I’m actually living it. 

And if I do relapse? At least I will know this is possible, this is an actual reality for my body. But I don’t dwell on that thought; I’m living here and now in these sunny days without blighting them with fears of the night.