Sydney in Autumn is a sight to behold. We walked around to drama, dodging trucks and construction of the light installations for Vivid, which starts this weekend. There were buskers and tour groups taking in the history of The Rocks. My daughter has a ritual before her class. I give her money and she buys a strawberry donut from a takeaway shop at Circular Quay. The elderly Vietnamese man sees her approach, and has the donut in the bag before she asks. My daughter says they are the best donuts in the world. We weave our way through wedding parties and photographers, my daughter entranced by the gowns, but grossed out by the romance and smooching. I call our day in the city my caffeine day. When you have such extraordinary coffee and barista’s at your disposal, why wouldn’t you indulge? To redeem myself, I order the best salad in Sydney. Spoilt for choice, it is hard to settle on one, and they are a triumph of assembly. The sort that you wouldn’t bother making yourself at home, unless you had a spare hour or so.
Scenes such as the one above take my mind off my physical pain. Thank heavens my daughter’s balance is better than mine! On this particular day, I decided to travel over the Harbour Bridge on the train, to see friends. I insisted we try the quirky Hello Kitty Café at Chatswood.
My friend and I are under the care of an endocrinologist. Both of us are sugar-impaired, shall we say, and we try to behave. This was something of our last hurrah on that front, which is just as well.
Yes, I drank/ate the Freak Milkshake above, and was suitably buzzing and silly afterward! To my delight, they had a tofu burger on the menu.
It was a sweet little café, and we enjoyed our outing. It has taken me two days to get over our big day out, but you gotta live, right? I had seen this place had opened over a year ago, and determined to go one day and check it out. It niggles at you, doesn’t it? The events you miss and promise to get to the next year, the things you want to do and people you want to see. Sometimes you just have to do it. We are looking forward to the next adventure! Sydney is brimming with them!
We had seen a video on how to make fairy lanterns, and went to a discount store to find the jars, tissue paper and glitter required for our project. I had felt the need to apply a mixture of turquoise, blue and purple to my hair. Now, when you front up amongst a crowd in a quirky manner, certain people gravitate to you. The artists, the poets, the dreamers…They see in you a kindred spirit. I stood in front of an aisle of craft supplies, discombobulated at the wide array, uncertain of which to choose. I noted a lady facing the same conundrum, next to my daughter and I, and smiled at her sympathetically. She was tall, with bohemian clothing and a funky short hairdo. “Excuse me,” she said, “could you help me?” She had a bag of marbles in one hand and a jar in the other. “Do you thinkthese will fit in this jar?” “Afraid not, especially the bigger marbles,” I replied. She explained that somebody very dear to her was facing a deluge of sorrow, and was hanging on by a spindle. They had expressed that they were afraid they were losing their marbles. “I want to present them with their marbles,” the woman stated. “I need them to know that I care; that what is taken can be replaced.” I squeezed her hand. “You are a good person.”
I guess my fairy lanterns are also thematic. Here are these little fairies, highlighted with a background light, illuminating the way. When I was in the clinic as a teenager, I was privy to many stories. I recall that the term PTSD was rarely used back then. It was called ‘the horrors’ instead. I was fourteen, and quite naïve. I became friends with a gentle fellow called Denis. He was kind and funny, and also severely traumatized. He quietly told me that he had been a vet. “How wonderful! I love animals,” I smiled. “Bless you, kid,” he laughed. I learnt over time what he actually meant as I heard him scream throughout the night; witnessed him slip into catatonia for days on end. I was told I had a strong mind, which bounced back like an elastic band, no matter what I was enduring. I wasn’t even clinically depressed, according to the experts. Rather, I railed against cruelty and abuse, to the extent that I would prefer to leave this world than remain in suspended animation. As my own PTSD began, I thought about Denis often, how despite our generation gap, we had this horrendous condition in common.
My mind takes me to dark places and I regularly fall into deep depression. None is more surprised than I. I am a genuinely happy soul, who can seemingly bounce back from anything life hurls at me. I call myself a smiling, laughing depressive. I have been around long enough to understand what my triggers are, and try my best to avoid them. I have a delayed reaction to triggers. I may explode a day or two later. I need time alone to process what has transpired. Alcohol is a no-go zone at such times, as it leads to dreadful melancholy when I already feel low. I have to get out in the fresh air and walk. I have to turn off the phone and not have too much stimulation. Now is the time to get out my first aid kit. It contains ambient music, books, exercise, essential oils, candles, soup, a fruit platter, gardening, art, writing, playing with my daughter, the theatre and retreat. I am a happy woman with a tortured soul. It is quite the dichotomy. I have had to save my life many times over. There have been mountains that have seemed unconquerable; events too awful at first glance to be survivable. I have had to make that choice.
There is hope beckoning to me outside the bramble where I lay. There always has been. I cut through the brackets to reach my friends, and my life. Life as a smiling, laughing depressive can be confusing. It is concealed from other people, and felt behind the scenes. “You are always smiling and appear happy darling,” an elderly friend once said, “but I see the sadness in your eyes when you think nobody is looking.” I told her she was far too perceptive. I think my spirit animal is the phoenix. Ignited by passion and a love of life, and consumed by the same. Perishing and emerging in an endless cycle. You can be the most positive, joyous person around, and still be pursued by depression and anxiety. The two states eye each other off warily. As long as you have a jar of marbles, you will never lose your own. My fairy lanterns are visible proof of an illumination inside my mind which can never be extinguished, despite the odds.
We are stronger than we believe we are, and can survive what we thought we couldn’t. We are also fragile, and deserving of kindness. If you have been through trauma, your brain has been left battered and bruised. It needs love and time set aside in its quest for reparation. I can’t help being an extroverted introvert. It’s who I am. I love people, and socializing and I also adore being alone. The same is true for being a smiling depressive. I love this life, and have had to reconcile the fact I was almost destroyed by it. My path isn’t paved, and nor is it straight. At least I have my lantern to light my way.
I seem to have entered the next phase of my journey. I had been trying to cope with my spinal pain with minimal pain relief for several years, something I can no longer do. My MRI results showed that the remaining discs are reduced to something akin to chalk-dust and my spine is riddled with arthritis, pressing on the nerves. The pain management program has ramped up, and is necessary to keep me moving. I have had a strange sense of vulnerability as a result. Some of the medication makes me tired, and I have had to have early nights. I find it hard to remember the names of people I don’t see often, and find going to large social events trying, as I am away with the pixie’s. I want to be quiet, have rest and not have too many commitments. Sitting for long periods is agonizing and I need to move around. I have to plan everything well in advance, even the weight in the lunchbox I carry when attending excursions with my daughter. I am dreading winter as I know too well the agony that grips my frame. I have to know the time it will take to get somewhere and when I can expect to leave. If I am prolonged, it can mean a day in bed afterward. A day lost. I have left items in stores as the weight would be too much to carry. I have had to pardon myself from the table so I can move around outside. There are hundreds of examples I could give you. Things people without this damage wouldn’t think about at all. My doctor said that elderly ladies’ she knows find their spinal pain excruciating when ironing. I need to dose myself up before this task, and look on with dismay as the laundry basket fills with items needing to be ironed. I have the spine of an eighty year old, and somehow it has to keep me going for the next half of my life.
My daughter and I have a synchronised routine. At the dishwasher, she deals with the lower section. She loads the front-loader in the laundry and puts the washing on the line and takes it off. We have our dance, and it works well, an unwritten love and understanding flowing back and forth. I have high hopes that within the next decade, they will be able to rebuild and strengthen backs with a simple injection. I am walking several kilometres most days, in spite of the pain. Living in a semi-rural environment helps you escape the confines of your body and focus instead on the nearby river, the kookaburra’s and cockatoos, their laughter delighting my angst-ridden mind.
I need to have some of my back teeth rebuilt, after they came loose on a sesame cracker. I would rather have spinal surgery, the truth be told! You have to laugh; I was trying to limit my intake of bread, so for lunch ate these gluten-free, rock-hard crackers, and lost my teeth! Even if I end up in a wheelchair, I honestly wont mind. I am so grateful for the years I have had being able to walk. I am grateful I got to carry this child, despite the odds. I am happy with my lot in life, even if I have to plan my itinerary of a day as if embarking on a mountain trek! It is about focusing on what you have, not what has been subtracted from your life. I will need to recalibrate my life, and my expectations of myself, but it wont be the first time I have had to do so. The headaches from the Lyrica have finally stopped, just as I have been advised to double the dose. Always a mountain to climb. As long as the backpack holds a tolerable weight, it will be okay.
The period between school terms went by in a purple haze, taking with it, Prince. Fans woke in shock to hear the news of his passing last week. This year has taken so many individuals in the arts, and it’s only April!
The holidays were divided between time at home, and being out. My daughter caught up with a few of her gorgeous friends, and it made my heart soar to witness the bonds deepening. The girls put down their electronic devices and made up dances and spells, plays and songs. We also went to plays, including The Peasant Prince, and Cautionary Tales for Children at the Sydney Opera House. It starred the extraordinary Virginia Gay. She held my daughter spellbound.
I was gifted these divine bird pegs by a friend. I have written about this friend before. A nurse, she has had healthissues the past few years, and has astounded me yet again, by putting her hand up to support a local lady as she flies to Singapore. This young lady has MS, and her symptoms have escalated. She has gone to Singapore for intensive chemotherapy and stem cell treatment. I am thinking of both these valiant women. They will be in my heart every time I peg an item on my clothes line. My friend Diana Reynolds is an artist, and she gifted my daughter and I this enchanted painting. It has pride of place in our home school room, where we get to admire it daily. To check out more of Diana’s work, click here.
My MRI results weren’t what I wanted them to be. I had hoped to receive a procedure known as a discogram, to shrink my remaining discs. It was found that they had all desiccated, which explains why I wince every time a bus or car I am travelling in hits a bump. I have no shock-absorbers! I wish it were merely a case of changing the shock-pads! There are many more issues, which I have neither the time or inclination to see to at the moment. I only had one day in bed throughout the holidays, so I am relieved. I carried on, throughout social occasions sometimes with the aid of a stiff drink and for that I am grateful. It is a nasty, merciless agony, which has grown into a monster. I humour it; I temper its fury and I promise it the world if it will just let me do what I need to do. When my daughter is a little older, I will have that longed-for overhaul. I will admire the bird pegs, and the symbolism behind them. They have the ability to fly, and yet they are anchored. Perhaps it’s a comfort, behind grounded. They know that they have a choice.
Term 2 has just begin in Sydney, and I look forward to many more adventures. You could live for a thousand years and still not experience all that there is in this world. I had a conversation with a friend who is extremely ill. She told me her simple wishes for the next year or so. In light of her disclosure, I am going to apply for a passport. Life is too damned short and it flies by like a bird unanchored. Pain and illness, nor nothing else is going to stop the experience of new horizons. It mustn’t.
There is never enough time, have you found that too? As an aside, we often tell ourselves that now isn’t the right time. I ask myself, when will be the right time? Do we wait for the planets to be aligned? Sometimes, you have to plunge straight in. I don’t know where time goes, I honestly don’t. 24 hours has glorious potential when I wake at 5am, but I soon run out of sand. My daughter and I are planning on opening an Etsy shop by the end of the year. I have a desperate need to take her to the opera, the theatre, each and every cove and parkland around Sydney. I can’t sit still. I am afraid to stop. The truth is, I don’t know how to anymore. I find my release by helping her locate her point of peace. We went and saw The Peasant Prince yesterday at the Monkey Baa Theatre, and I watched the joy on her face as she “got” the lesson regarding never giving up, believing in yourself, and trusting your instincts. I realized that my point of peace is wherever she is.
I am sometimes terrified of failing her. The worst moment of my life was when I almost died after surgery when she was three years old. They let her ride with me on the trolley, and she stroked my hair on the way to theatre. I am her teacher, her guide and her parent. I am everything to her. I have been putting off having medical tests because I am quietly afraid. I have been waking in the middle of the night, crying in pain. People don’t witness this war going on within my body. It is getting worse. If I fall down, there is nobody to pick up the gauntlet. What occurred with my last surgery scarred me. It was close. I had bigger surgeries, before I had her, but I was filled with the bravado of youth and had nothing left to lose. Now I have everything. I keep on keeping on, but shall get the tests done and see a surgeon. I am on Lyrica at present. I don’t know if you know of it. It was designed for epilepsy, though is also used for neurological pain. It has knocked me about as I get used to it! I am willing to try anything. The bone and metal shards left in my spinal canal literally feel as if I have been knifed in the back. I guess I had been, many years ago.
My daughter is on school holidays, and as we walked to the park today, I stumbled. I told her to go ahead as we were meeting friends at a playground. After she left, I looked down, and there was this nest.
Lovingly created, the chicks had flown and it was discarded. I picked it up, and carried it to the playground. I have always found nests to be my symbol of hope. One dropped to my feet when I was despondent during IVF. I still have it. Every time I have been in hospital, a dove has perched on the windowsill of my room. It can’t be coincidence. As I caught sight of my daughter playing with her friends, the pain diminished. I brought the discarded nest home with me. My evenings may be filled with pain and I may no longer be able to sit on a bench without back support. My lungs may struggle, and I may find it all hard and lonely. However, when I look at a nest or a bird, my resolve strengthens.
Sometimes we have to grab time back; either that or smash the hourglass. Sometimes, time can seem to stop. It does for me when I see a transcendent performance, or delight in the antics of my child or pets. Referring to pets, that includes our hermit crabs. They can be enormously entertaining and run like the wind! The only relief I have is to seek out beauty. It is the source of that which is mightier than this merciless pain. If you look hard enough, you will find it. If you close your eyes and concentrate, you can stop time.
I can’t tell you how much the response meant to me after I posted Til it Happens to you. The support was incredible! I was too overcome to respond for a while. People have asked how I got through it all. I suffered status epilepticus at 13, meaning I had continual seizures which couldn’t be controlled. I stopped breathing and was in a coma. It took a long time to recover from this event (it was predicted I wouldn’t). The next year, I met a monster, and was abused. The finale was being thrown off a building at fifteen. My healing has taken over twenty years. There are some things that have helped.
1. I can’t handle violence of any kind. I can’t discuss literature, nor movies, let alone view them, if they are violent. At first, I didn’t want people to think I was fragile. I didn’t want them to see the distress that talking about violence (parcelled as entertainment to the masses), conjured. I would pretend that it wasn’t hurting me. Nowadays, I don’t pretend. I gracefully bow out of conversations and invitations which would bring me into this sphere.
2. I couldn’t leave the house by myself, even to go to the letterbox. It has taken many years and many small trips to gather the strength to go farther afield. I plan ahead, and the apps I have on my phone make my preparations easier. If you are agoraphobic, be kind to yourself. Every little step is a triumph. My major incentive was that I had to get to the IVF clinic early in the morning, and simply had to do it. It made me braver than I actually felt! Now I take my daughter everywhere, and the freedom is liberating!
3. I have had to confront my deepest fears. The ones I was frightened of encountering, as I would surely fall apart. My fears included rejection, loneliness, being left alone and finding out that people weren’t as they appeared. Confronting these fears has been terrifying, and it has hurt. I have uncovered that people I looked up to were abusive behind closed doors. I have been let down and let go, but I have survived. I learnt not to leave myself behind in the process. Comforting myself became of premium importance.
4. People see a smiling, functional adult when you are out and about. They don’t recollect the child kept alive in Intensive Care on a respirator. They came into my life during a different chapter. I know what it took to get to here. The hundreds of hours of physiotherapy, the scores of surgeries… I have to remind myself of my achievements and give myself a quiet pat on the back.
5. Boundaries are a big one for a survivor. I felt as vulnerable as a newborn when I started to make a life for myself. I believed anything anyone said, and believed everyone was a friend. It has taken trial and many errors to come up with boundaries, and to trust my judgement above all else. It was a revelation, to give myself the space to honour my instincts. If a person or situation doesn’t sit right, and makes me uncomfortable, I walk away. It is imperative to do so, as I have a little girl watching me. I need to display good boundaries so she knows that its okay to be in touch with her own. It has sometimes taken me being struck mute in the company of somebody who is toxic, for me to comprehend that my body is trying to protect me by producing physical symptoms. I am free, and thus I get to decide who stays in my life. It may not be anything that anyone is doing. Rather, they remind me of someone from the past. I still have to honour my discomfort.
6. Things will trigger me on a daily basis, and much of it is out of my control. It could be a song coming on in the supermarket, an aftershave I detect in passing. It might be a conversation, or visiting a friend in a hospital where I had prior surgery. Deep breaths are required, and sometimes a visit to the lady’s restroom to compose myself. I tell myself that my anxiety is a natural reaction, and I am doing fine. If I am with close friends, I will tell them that a memory has come up. If I am not, I will breath deeply, find a focal spot to concentrate on, and reassure myself quietly.
7. I will not drink to excess, nor take tablets to blot out a bad day. Sometimes, the memories hit hard, and along with the massive amount of pain I suffer, it becomes overwhelming. Alcohol is a depressant, and thus, is disastrous as an antidote. I will only have alcohol when in the company of friends at dinner, or as a toast of celebration. It only compounds the depression which inevitably comes after overworked adrenals have crashed. Instead, I go for a walk, swim or am otherwise active. It helps tremendously.
8. I will space out at times. When you hardly sleep, and are in pain, it happens naturally. When you put flashbacks or a panic attack into the mix, let’s say I am sometimes away with the fairies! Writing (and preparing for a writing task), also lends itself to spacing out. If you holler at me on the street and I don’t respond, that’s why! I am escaping into my inner world, which is expansive and magical. I nearly jump out of my skin when I am walking along and a car beeps me. I remain jittery for the rest of the day. I am hyper vigilant; always scanning a crowd for danger, even when in my own world. It’s quite a combination!
9. You are allowed to say “no” to a request. You are allowed to rest. I keep going until I can’t, and at that point, I retreat for a bit. I have to. It is a revelation, when you learn that you can keep free spaces in the calendar. Even thirty minutes to sip tea and daydream is heavenly. I need time alone to restore and reboot. Time is precious, and I try to use it wisely.
10. My survival has been an odyssey of epic proportions. I tried to run from the memories. I attempted to smother them, as one instinctively does a fire. The smoke streams from underneath the cloth, and then the flames explode forth in a cacophony of rage. It is like burning off disease, only to have damaging adhesions form underneath. Running doesn’t work, and it certainly doesn’t help. Over many years, I have visited my places of trauma. I have wept and I have released at each site. I only did so when I was ready. You have to be ready. My natural instinct is still to run when triggered, but now I have tools. They come in the form of a laptop, a paintbrush, a pastel. They come to me as bird song, my walking shoes, my friends and my music.
When I was a child, I had big dreams. I had a determined spirit and an acute awareness that what was being done to me was not only wrong, but evil. I felt as though a cannon had ripped through my psyche, smattering me into pieces. Over time, I have laid out all the pieces, and put them into place. I am glued, sewn, fused and grafted together. I was once a china doll. Now I am reinforced and can never be broken again. It takes time to heal. You will want to give up. You will consider yourself beyond repair. You will want to run and you will try to escape your own mind. You will want to give up. Please don’t. The joy of finally accessing the tools to help you cope are worth the fight.
I love surprises of the pleasant kind! A dear friend texted me to ask if I wanted to go see Simply Red at the State Theatre. She had free tickets given to her by her DJ sister. Her sister lives in London, and had arranged it from there! Now my friend had a very bad car accident a few years ago, and had many injuries, including a broken back. She is in constant pain. My reaction to this lovely offer was the same as hers had been. We both thought of the practicalities of getting in there, and whether we would be able to stay awake until the set finished at 11pm. We worried about our pain levels escalating, and how we would feel the next day. We checked in with each other the day of the concert, and we resolved to go. To hell with the consequences! Now came a comedy of errors. We found parking under a popular city landmark, and I alighted the car with my trusty walking stick. My friend went to retrieve hers, only to find that the only aid she had was a hefty three-legger with a folding seat!
We went to the lift, only to find that we couldn’t go through the shopping centre. We saw security manning the business foyer, and we both burst into peals of laughter upon discovering that the escalators weren’t working and were cordoned off. We had no choice but to walk up the steep stairs alongside. We asked how on earth we could get out, and the security guy said that he would push a button to make the lift go up. Outside, we were completely discombobulated. We are city gals, and know our way around, but our pain-addled, weary minds couldn’t get it together. We punched ‘State Theatre’ into our smart phones. Well, the bloody things took us in the wrong direction, a fact that only dawned on us after a block or so! We put the phones away and relied on our wits. After a stiff drink, we arrived!
By the time we got to the theatre, we were late, and Simply Red were on. We were guided to the VIP area, which happened to be in the lowest section of the grand old theatre (which didn’t have a lift). We laughed some more as we negotiated our way down many steep stairs. I am sure Mick Hucknall looked straight at us as we hobbled along to our seats. Our tricky bladders were up to their usual mischief and we had to find a loo at differing times. I had forgotten just how pure and emotive Mick Hucknall’s voice was, and man, the band were in fine form. We moved in our seats, performing our unique interpretation of dance. We squeezed each others hands, thrilled that we had gotten here and were doing this. It was a celebration of having survived, for her and I. It was an act of defiance of the pain we will have forever. We were sneering in the face of exhaustion and depression. We were simply two women out on the town, listening to the sublime Simply Red.
I noted my friend’s jaw tightening toward the end, and I asked if she was ready to go. She nodded, knowing that I knew all-too-well, and she didn’t need to conceal her discomfort. We quietly left, walking through Pitt St Mall and to the carpark. We once again had to walk up to security, in order to operate the lift. We then had to negotiate our way around the cords and machines that the cleaners were using. We chatted all the way home, mostly about who we had been before our spines were broken, and then about our wonderful kids. We talked of the joy of sleeping for four hours straight, and what a rarity it was. It was a gift of grace, being in the company of a soul sister, one for whom no words are necessary. We laughed at the same time upon seeing more stairs and barriers. We knew when each other had reached our threshold. We grumbled about uneven paths and sticky-out objects blocking our way. Mick Hucknall, if you happened to look in our direction as we were leaving early, I can assure you that we had an extraordinary time in your company. Your music was the perfect accompaniment to a night of revelry for two ladies with damaged spines. We left on a sweet note, to your dulcet voice caressing our ears.
On Sunday, we watched a short film that Rev. Bill Crews is putting into a festival. It centred around the homeless residing in two parks near Central Station. How it must feel to be out in the elements in heatwaves and bitter cold… Many in society have a tenuous grip on their security, and it would take but retrenchment or ill health to plummet them into the homeless community. Perhaps that is why many look away. Fear will do that. A lady talked about her daughter’s high school, how they went to one of the parks, armed with sleeping bags. The kids asked questions and listened to the people table their stories. The people became human beings with back-stories, rather than ‘the homeless.’ What a wonderful thing to do!
In the evening, I took my daughter to Govinda’s, a vegetarian restaurant in the city. My daughter proudly ate a lettuce leaf, and some sunflower seeds, and then devoured a bowl of ice cream! She has promised me that she will try new food every day, and I am holding her to it! It would be great to expand her repertoire from beyond Vegemite, apples and Lavash crackers! Okay, she does eat more than that, though barely. Kids can become fixed with their eating habits. I have found that when I leave it up to my daughter to uncover the joy of a new food, it ends much more happily than if I had forced her to try it!
On Monday, I was waiting for the bus with my daughter, to go to drama class. The lady I befriended at the bus stop a few weeks ago pulled over and offered us a lift. Bless her, she went out of her way to take us to the train station. My daughter was impressed with her Hello Kitty seat covers and the delicious air conditioning. It beat waiting in the blazing sun! Australia is having a very hot week! How wonderful it is when strangers become friends.
We were at a show yesterday, and I was seated next to a stranger. She was an older lady, and she asked whether my daughter was having a day off school. I explained how she is home schooled, and that it has been great for her dyslexia, to be able to take her time. She told me about her grandson, and how he is dyslexic. Sadly, he has no confidence in his abilities, and left school early. I was able to give her some details about the Exodus Tutorial Centre-among other resources -whom may be able to help. Her eyes lit up, and I knew it was not by accident that we were seated together. She lives not far from me either! Life is a strange and wonderful thing!
It has been a whirlwind week, and it is only Wednesday! More activities have been heaped onto my plate, and at the moment, I am eager for them. I haven’t started the medication for my nerve pain as yet. I have been warned by my doctor and those on it, that whilst it is effective, it will certainly cause drowsiness. I am making hay whilst the sun shines! It is going to be factored in within the next few weeks, making home time necessary. Life is cyclical, isn’t it? I am in the season of crazy-busy, and within a month, I will be in the cycle of repose whilst I get used to this new medicine. Nothing lasts forever; not the whirlwind, nor the sleepiness. Its a matter of adapting to your situation.
I am amazed and delighted that my last post, Who Am I, resonated with so many of you! I try my best to negotiate each day as a free spirit, unencumbered by my body, whilst at the same time, factoring in the need for rests and a regime. I am sure that those of you with physical challenges can relate to the following scenarios. Our local movie house has a ramp, from the ground level to the 2nd level. One has to stop at the first floor to get tickets and snacks. There is a lift, but it operates with a key which is often hidden under detritus in the office. Trying to negotiate the long walk with tickets, drink, popcorn and a walking stick is arduous. I don’t want to hold up my friends by waiting until the lift is available. I don’t want special treatment, or to draw attention to myself.
The second scenario is when you have your day planned. It may be a day in the city. I have a regime drawn up, stating what time I will be at particular places and when I expect to leave. My body holds me to the promise of pain relief and rest at particular times. If I am held up, there is hell to pay. It is a different way of being; engaging with the world, whilst having limitations. A fine juggling act.
I panic if I am home later than I anticipated. I know there will be hell to pay. It may be no sleep that night, or vomiting because I had to take extra pain relief and the side effect is nausea. The danger with the pain relief is that I am agreeable to most things, and the pain is discounted. I am floating! I sure come down to earth with a thud when it wears off!
I still hold to the theory that I am not my pain, nor my body. Do you suddenly become a car because you are driving one? It is just that my vehicle is a little rusty, and has to be treated tenderly. Perhaps I will wait for the lift at the movies, to make life easier on myself.
A few years ago, I called in on a mental health nurse that I knew. I had long admired his work, and his holistic approach to his clients. He even had a gymnasium installed in the rooms, and kept a watchful eye on people’s diets. “Right, that does it. I am not able to cope without medication. My depression is getting worse, despite my best efforts!” I proclaimed. “Can you please prescribe me something?” He did something unexpected in turn. He laughed. “Are you kidding me?! You have had X, Y and Z happen in the past few months, and these events have pummelled you. I would be concerned if you were behaving as though everything was as it should be. You don’t need medicating; it wont help you. You have reactive depression, caused by the events unfolding about you. The feelings you are experiencing are normal and a sign that things need to change. Your depression is normal, as are you. You are coping tremendously well.” It was on this day that I discovered the difference between reactive depression and endogenous depression (no obvious cause). I have had both alternately throughout my life, and there is a marked difference between what responds to medication and what doesn’t (when someone points it out to you)!
I was hoping a pill would make the discomfort disappear. Instead, I was urged to sit with it, journal it, and hear what it had to say. It has been dark, windy and rainy the past week; a perfect time for reflection. Here is a screen shot I took of my constantly humming phone this morning.
40 text messages and 1,056 emails. Sometimes, there are many more of both, not to mention Facebook messages. Last year, I endeavoured to answer them all. My schedule was to get up at dawn, answer messages, and write content, for myself and others. By 8am I would organize my daughter for the day and ferry her to workshops. If we were at home, I would work with my daughter for six hours, then get her to classes in the afternoon. In the meantime, there would be more work for me. On top of this, there were social activities. There was the forever buzzing phone too. At Christmas, I stopped going onto Facebook. I found I just couldn’t cope. I felt like Mickey in Fantasia, when he conjures up the buckets, only to have them flood the room. That is very much how I have felt with all the messages. During December, I heard the most horrific stories of abuse and of deep sadness. I carried it on my shoulders, and the weight slipped down and smashed the already broken column of my spine. There was little lightness, and much darkness. My child needed me, and so I had to stop. I am forever grateful to this little girl for what she teaches me. My energy has been replenished by our walks and games. You can be in the same room to those who mean the world to you, and yet still be a world apart when distracted.
As with a few years ago, I don’t need medication for this particular brand of disquiet. I just need to organize a more manageable way of being. To put my contact list into categories, and un-subscribe from everything that chews up precious time. There have been days when I haven’t had time to eat, nor do what is necessary to maintain my health. Trying to be everything for everyone and feeling like I am failing. Putting myself last on the list of priorities. I have had time this week to put together a plan of action for this spine. I am going to undertake the discogram and chemonucleosis that was offered me years ago. I had it once before, and it provided relief for quite some time. If successful, it will do the same and bide me time. This decision feels right, and so now I start saving for it!
I know many of you can identify with the overwhelm. If I hear my phone ringing, I have an anxiety attack. I am slowly making my way out of my cocoon, but never want to go back to the unsustainable, 24/7 demands I made of myself. How terrifying and liberating it is, to finally have time. Returning to the world whole, rather than chipped and hollow, is what I desire.
RAPHAELA ANGELOU 