What is mental health?

Before William died I had no experience of the mental health care in the UK. I’d had no reason to need it personally, nor had I known anyone personally suffering with their mental health. It wasn’t even taboo, because I didn’t even afford it much thought. I would often catch the news, mental health being known as the cinderella service of the NHS. Hard to access, not enough facilities or not the right facilities. This may be true in some areas or for others experiences. But, I can say that had it not been for the care and guidance of the mental health team in Cornwall, I would not be here. They have been the scaffolding that has been wrapped around me for the last 11 months, and continue to be. When I fall I know they are there. When I’m falling and I don’t know it, they catch me.

Anyone in my position will know that time is like a punishment. Nothing you can do to stop it, always ticking by, excruciatingly slow. Initially, days passed in shock, weeks passed in disbelief and months have passed without me even knowing, carried along on the tidal wave of grief, churning me round and round in the eye of the storm, discarding me just where it wants too. In the initial few months, everyone has time, everyone touched by William, and they now have a life tinged with sadness, but albeit a life that they return too, maybe after the funeral, maybe after the inquest, maybe when I returned to work. Slowly people drift away back to their own lives, no time to sit with me anymore to go over and over things like I did back then. I still need to do that, so who do I lean on, who do I turn to when people are living their lives and I am on my merry-go-round of despair and can’t get off? I turn to those who I know will always be there, with a bucket load of time. Whether it be when I have a complete meltdown in the dairy aisle of the supermarket and the crisis team need to come and rescue me or whether it be the day before my scheduled one to one appointment and I need them now. I know I can rely on them to change my appointment.

I have full capacity. I am not mentally ill. I have a problem that they cannot fix. They cannot bring William back. I could be hospitalised because of my suicidal ideation, but knowing they could not fix me, and they would only be removing me from everything that is William would increase the intensity of those feelings. So, what do they do? One thing they haven’t done is give up. But, one thing they have done is respect me and respect my decision. I am a vulnerable, high risk adult. What does that mean?

Vulnerable Adult – A vulnerable adult is described as a person aged 18 years or over, who is in receipt of or may be in need of community care services by reason of mental or other disability, age or illness and who is or may be unable to take care of him or herself, or unable to protect him or herself against significant harm or exploitation.

High Risk Adult – Current or recent moderate / high risk of intentional self harm

So that is what I am. Am I embarrassed or ashamed to be in this category of society? No. You see just like any other debilitating illness, mental health problems are real. They don’t go away when you take medication. You can’t ‘just get over it’. You can’t make yourself want to live. You can’t make yourself eat or sleep if your body is telling you not to. You can’t stop tortuous memories of finding your son passed away in his cot. You can’t stop hearing the call handler’s voice as she talked you through CPR. You can’t ever stop the image of your child in his coffin just pop into your head. You can’t stop that fear of knowing that tomorrow will be just as bad, after all William won’t be here then either. With these flashbacks and thoughts come physical side effects. Chronic insomnia, days with no sleep, after two, three or four days you start zoning out. In a complete daze, losing hours at a time. Sometimes you imagine things to move, sometimes you think you hear something, but you are alone. It is terrifying. Sometimes the anxiety is so bad, regardless of how much medication or exercise you do, you cannot write, because the tremors control you. Sometimes I cannot stand colour, movement, noise. Why? Because I simply cannot process it. The scores of pock marks on my skin, when in an effort to control my anxiety I pick my skin. Or bite my nails. Or pull a few hairs out. Sometimes I don’t want to talk, or involve myself in the conversation. Why? Because sometimes it is such a huge struggle to even be in another person’s company, when all you want to do is be swallowed up by the gaping pit of grief.

Mental health is not a choice. It does not discriminate. No matter your colour, your religion, or where you were born. If it wants you, it will take you.

Everyone in their life at some point will have suffered a bout of depression, most people have seen or gone through trauma like a car crash, a marriage breakdown, or the loss of a parent. But life after losing a child, is an indescribable journey of survival. A life sentence.

People move on. But I am stuck, sometimes the quicksand is deeper and the struggle to fight to get out is just that, a fight. On these days, I know that if I call the mental health team, they will come with their scaffolding, they will build it up around me as high as I need it to go. They don’t just build it and leave. They wait. They listen with compassion. They cry when I cry. They don’t try to fix me, knowing that I can’t be fixed, they guide, advise, and aid. And most importantly they do not judge, they understand. They understand that mental health is not a taboo. It is very real.

I saw one particular psychiatrist for months. We had intensive EMDR sessions, followed by psychotherapy. As a doctor he wanted to fix me, make me better, but he knew, he understood, all he could do was help to make the path I am on a little easier, so maybe when I get to the end, it wouldn’t be the end.

Not many of you know but at the end of January I spent time in a secure psychiatric unit, why? Because I had tried to take my life earlier that week, I was found in time. Had I not been found, I would not be here. Several days later I knew what that feeling felt like. The desperation to be with William, it is not a means of escape, it is not me trying to escape the pain. It is about wanting to be with my son. To sit there and actively know that what you are about to do is end your life is an extremely courageous and brave step to take. Knowing there is no returning. No going back. To be at a point, where for whatever conflict is taking place in your head, people need to exit their life, is not a cowardly way out. For some it is the only way out of a lifetime of enduring pain. For some it is a means of escape, who are we to judge, that whatever is happening in their head is tolerable or not? Because I for one moment ask you to put yourself in my shoes. If you lost one of your children, what would be your oblivion?

When I was in that psychiatric unit it was very apparent that I am not mentally ill. I have heard of schizophrenia, and psychotic disorders, split personality disorders, bipolar as I am sure most of you have, you might know someone with one of these mental health conditions. But wow, those people do not need shunning, do not need bullying, those who are very poorly require the most intensive round the clock care that can only be given in a secure unit. I sat with one man. I won’t tell you his real name, but I’ll call him John. John was 35, that is what he said anyway. He shook my hand and said hi, my name is John. I politely replied, that my name was Melissa. Within 15 minutes we had repeated that very small conversation over 30 times. Did I mind? No. John told me about his job in a shop. Told me about what clothes he sold, he told me about the people he worked with, he told me where the shop was. John had been in that unit for 5 months. John didn’t have a job. John didn’t work with anyone. I don’t even know if he was 35 and his name was John. But it didn’t matter, because for those 15 minutes he was happy. Is it his fault that he has been afflicted with a terrible mental health illness? Does he deserve it? Did he ask for it? The answer to all those questions is no. But John didn’t get a choice. Schizophrenia and psychosis picked him. I was there purely for my own safety. John was there because that is where he was living.

So I ask you, when you see me walking down the middle of the high street, my eyes bloodshot from the lack of sleep, my hair not brushed because when I left the house I was too busy kissing my son’s casket goodbye to remember to brush my hair, that I am on my way to have more scaffolding put up to help me continue the fight. Without that scaffolding I wouldn’t be here. Without the mental health team I would not be here. I can’t help the way that I feel. I can’t just change the way I feel, it’s very real and all-consuming. Knowing I can make that choice tomorrow prevents me from doing it today. It has worked so far. I have a safety net. Suicide is my safety net. I don’t need judging, I don’t need fixing, I need scaffolding. If you want to judge or fix then please don’t. If you want to scaffold, build away. I do not see it as ending my life, I see it as going to continue it somewhere else with my son, for eternity.

Www.justgiving.com/Williamoscarmead

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Do you have any children?

Mummy and William selfie x

Mummy and William selfie x

The question that I have been dreading since the day that William became forever 12 months old. A very easy question to answer, of course I have a child, I have a little boy, his name is William. But, how can that question be answered without prompting awkward silences? I cannot and would not even imagine saying no, that would be like denying his existence, an intolerable thought that makes me feel sick just saying it in my head. How could I ever say no when all I want to do is shout from the roof tops, that I am a mother, my child may not be here, but he existed, he was part of the same world that you and I exist in today. And that’s exactly it, an existence, an earthly existence. I do not feel part of my life anymore. I feel like I am viewing life from behind a thick glass, I can see, I can hear muffled sounds but none of it is real, none of it is relevant. I can just see people moving from A to B. Getting in their metal cars, driving to work, not really paying attention to what is going on around them, making meaningless conversation about the food you ate and the television you watched the previous evening, undertaking a full day’s work to earn money to pay the bills for the small brick house you drive to at the end of everyday. A brick shell that you pay money for, take ownership of, clean, a place to nurture your family and keep them safe. A place where you make memories, but what is all this worth without those that make these memories so special. As much as I am attached to my home, of course, this is where William grew up, learnt to smile, learnt to laugh and learned to love. But it is also where he died, it feels so empty and desolate without him, but yet it is his home. I no longer feel I belong anywhere, not even in my own life.

It is so easy now to see how life was taken for granted before, since William died I have become incredibly hypersensitive. I am more aware of my surroundings, noticing the tree tops on the way to work, not getting sucked into the monotonous tarmac as the road forges on; were the trees ever that tall? I’m sure I would have noticed that before. There are so many different species of tree on the way to work, I wonder how many? So many different shaped leaves, such a wide palette of colour’s, all merging together to form a sea of ‘green’. Sitting on a cliff top allowing yourself to relax, really relax, allowing your arms to flop down by your sides, the tension to be released from your shoulders, what can you hear? Can you hear the waves? Can you hear the waves bearing down on the cliff? Can you hear the wind? As I sit there and close my eyes and let the darkness gather me up, i am aware of the hair on my arms tingling as they stand to attention. My skin succumbing to the sensation that is goosebumps, a reaction to my surroundings. This is what it is to listen, it’s not simply to hear, but to feel, feel your surroundings. Encouraging your body to let go of your peripheral vision and become part of the world. What does the wind really sound like? What does the wind really feel like?

It sounds relaxing, idyllic, at one with nature. Escapism. Freedom. To me I do not feel free, I cannot escape from my thoughts, my reality, the clarity of mind that keeps reminding me that William is not part of the life I’m viewing. The life that I am forced to be part of. By default I am here. Stuck, trapped. Suffocated. The breath knocked out of my lungs, by the wind that laps at my face as I sit there, no freedom, no escapism, just an annoyance, my long hair hitting my face as the unrelenting wind serves to keep me in the present.

As the date looms closer for William’s inquest. Just a little over 3 weeks. Preparing my impact statement seemingly an impossible task. How can i possibly find words adequate enough to write down, to read, to convey the depth of love for my little boy. Although I sit here and I write now. How can I do him justice. I don’t want people to listen to my words, I want those people to close their eyes and feel my words. I would like for just one solitary moment, for those people in that room to feel a tiny bit of my pain. There are no words for that. I cannot put into words the unfathomable pain that courses through my veins. As each day passes I find myself crying more and more, unable to articulate my pain. My body is tired, weary, the end I know is near.

I have an end date. When I close my eyes at the end of another day I mark off the calendar in my mind with a big black marker. Another day over, another day closer to the time when I can finally close my eyes, and open them with my boy.

Invisible mother

 

William, 10 months old x

William, 10 months old x

On Sunday I went to the beach with my nephew Rowan, he is 6 months older than William and turns 2 next month. Standing at the water’s edge, with his toes curled up in excitement, he would steal backward glances to his dad to make sure he was safe. When the waves had receded he would throw his ball and run away, stamping his feet from side to side, impatient for his ball to be returned by the tide. William would be walking by now, and I’m certain would be playing with his big cousin, both working each other up, both screaming in glee at what seems a tidal wave to a small person but gentle breaking waves to me and you. The magnitude of William’s absence overwhelming. To watch the way that Rowan would wait for his dad’s words of reassurance, the trust so deep-rooted, Rowan hanging onto his every word.  The bond so inextricably woven into their eyes. I miss that. I miss having a little person being unconditionally dependent on me.

There was not a moment that passed without me thinking about what William would be doing, would William like the water, what would he be thinking. It’s moments on the beach that drive home the loss. Other parents playing with their children, building sandcastles, exploring rockpools, I want to do all of those things with William, but I can’t. To everyone on the beach that day I was a twenty something woman taking pride in observing her nephew overcome his fear of the “bubbles” getting closer. Edging a little bit closer to the waves with every throw of his ball, being careful not to let the “bubbles” roll over his toes. After all, it was a Sunday, the weekend, surely if she had a child they would be with her on the beach. The ‘people watchers’ who’ve decided that Paul and I are a childless, young couple, enjoying our weekend off. I know I am a mummy, but I almost want to broadcast it to the world, a big sign above my head which explains in big bold letters “I am a mummy too, I didn’t choose this, my baby is in heaven, we are a family.”

It is very hard to distinguish between love and grief, because they are one of the same thing. Grief is all the love you want to give but cannot give, the more you love someone the more you grieve. The happiness and joy love brings turns to sadness and despair when unspent. Grief is just love with no place to go. Missing William and grieving for William is not about not moving forwards or living in the past, it’s about me loving him in the present.

The moment those words were spoken “I’m sorry my love, but he’s gone” just like that, it was over. William was gone. In that moment, my soul died too. Leaving behind a broken shell to walk this earth. I feel like I’m stuck in purgatory, somewhere between heaven and hell. Since losing William I have read a vast amount online from similar bereaved parents, not wanting to go on, not knowing how. Finding that their surviving children, the only reason to put one foot in front of the other. Some of us in this club don’t have other children, trying desperately to find another reason amongst the pain to forge on an impossible task. My only drive is to get to the inquest, to be William’s advocate, to be William’s voice, to not just tell people how losing him has impacted our lives but to make them feel it, feel it for just one moment, the enduring pain that we feel, that we will be feeling for a lifetime. Beyond the inquest is a black abyss for me, not wanting to stick around the most desirable choice, to be reunited with my baby again. See, it’s very hard to understand these feelings, unless you’ve felt them. Some may say that taking ones life is selfish, but step back for one second and think; it is selfish to ask me to endure a life sentence, a life of pain with no desire in order to save the heartache of others. What you are asking is ‘please put up with your pain, because if we lost you, our suffering would be unbearable.’ To be there for me, to listen, to love, to help guide me, and sometimes just to know that you love me and that you would miss me is ok. But to say it’s selfish is not something anyone else can judge. You do not feel my pain, you do not feel this pain. You do not have to live through the agonising seconds, minutes, hours and days waiting, waiting for this to all be over.

I’m not asking you to accept it, to like it but just try to understand it. Suicide is the most significant part of my care plan. Knowing that I can do it tomorrow, discourages me from doing it today. My get out clause. My safety net. I know this will sound alarming to you, but try to understand. If you don’t want to know the real answer about how I am, it’s probably best not to ask.

I do not want to hurt, I do not want to die, I did not want William to die. It would be a waste of my life, but it was also a waste of William’s life. I know all of this, but mostly I know that I cannot live without my beautiful little boy. I did not choose this, it has been chosen for me.

Stuck somewhere I don’t want to be

This photo was taken just over a year ago, the flowers are in bloom again, the grass is loving the warmer weather of Spring and the sun is shining. But you’re not here. I stand at the window and look at the pathway where you once sat and it’s so empty. How can a pathway be empty? Well ours is. It looks like something is missing, and it is. Mummy had to mow the lawn the other day mostly because I couldn’t find the hole to put the washing line in, but the whole time I remembered the days we spent together on maternity leave. You happily watching mummy whilst she mowed the lawn for you to practice crawling on. You were so content, so calm and so happy. You didn’t cry or whinge, you didn’t get upset because mummy put you down, you trusted me. Trusted that you were safe with your mummy. Your eyes the picture of innocence.

Instead today I spend my time biting my nails, itching my hands, picking at my skin, sitting on the bed, twiddling the cotton in my fingers, laying down, turning over, sitting up, laying down, turning over, sitting up and getting up again because I’ve exhausted all possible positions. No position is comfy, I am constantly agitated. I go to the toilet for the fifth time in an hour, either because I’ve forgotten I’ve been or because the anxiety forces me too. My tummy rumbles constantly, I’m sure I’ve eaten, I’m sure daddy made dinner, even my tummy is crying for you too. I don’t want to ‘do’ anything, but I can’t sit still either. So mostly, I sit on the bed, looking out the window and twiddling the quilt. This somehow passes the time, part of control. I can sit for hours, although I have no concept of time. The only difference I notice is when the sun sets over the rooftops, the street lights flicker on, and I know that it’s now time to get in bed. You see, if I go to bed before it gets dark it messes up what routine I do have. If I could stay in bed all day then I would, but I can’t, so darkness is the signal I wait for. I don’t really know what I expect from getting into bed, because it’s no different from sitting on it. I don’t sleep, I lay there twiddling the quilt, cuddling your teddy and thinking of you. When my shoulder starts hurting I turn over, then when that shoulder starts hurting I lay on my back. There is no relief from the relentless torture of knowing you are not in the next room sleeping soundly. It hurts, mentally, emotionally and physically. I don’t just miss you, I yearn for you, I need you. Every muscle and fibre in my body is screaming out to embrace you, feel your warm skin on mine, lose myself in your sweet smell when you bury yourself in my neck, just to love you, physically.

When I step over the threshold and stand on the carpet in your nursery it feels different. Different than any other carpet, I somehow feel rooted to the floor, the last room you ever saw. Your beautiful darkwood kub walda sleigh bed that mummy took so long to choose, making sure it was the right one and perfect for you. It’s beautiful, the wood almost warm to the touch. I sit on the floor hold on to the bars and peer through, I sat in this exact same spot the evening before you went to heaven, cradling you in my arms, soothing you with mummy’s touch, whispering in your ear and cocooning you in my love, you calmed down, you fell into a deep slumber in my arms. As I laid in bed last night, my body crying out for sleep but my mind not allowing it I got out of bed and walked into your room and I immediately feel a sense of calm, this is your sanctuary, your warm and cM osy safe haven. When daddy came to get you up in the morning you would be all sleepy, not quite awake and wanting to snuggle. You’d grab your little reindeer so as not to leave him behind, pop your thumb in your mouth, nuzzle into daddy’s neck and come into mummy and daddy’s bed for cuddles.

I feel trapped here without you. I don’t feel like this is my life anymore, it’s not the one I wanted, this is now a life sentence. A cruel existence. As every day passes I can feel myself detaching from life. I am physically the same person, but really I’m not. I feel no better today than a week ago, a month ago, or the day after I lost you. People treat me as if I am, if they asked themselves truthfully, they know that life isn’t any easier, but it is easier to talk to me as if it is, everything to me seems so petty, I am virtually irritated by everything. As everyone around me deal with their grief differently, I feel like I am bringing people down when they are having a good day, but I can’t help it. I’m not happy, I’m not jolly, I smile but it’s forced, i laugh but it’s fake. I don’t feel real without you Grumpus, I’m just stuck here without you, paralysed by my love for you.

 

 

Living with anxiety

“Nobody else will ever know the
strength of my love for you.
After all, you’re the only one
who knows what my heart
sounds like from the inside.

Acceptance of where I am on this insufferable journey has somewhat given me some breathing space to not expect any more from myself than where I am and what I’m thinking. It is normal to think and feel the way I do. The thoughts about not wanting to die but equally not wanting to go on without William to co-exist is a hard concept for anyone looking from the outside in to understand, but for me it is a personal battle that I enter into every morning that I wake up, again to the realisation that William is gone.

The only change since my last post is the noticeable difference of the symptomatic side effects of anxiety. I still sit here with heightened anxiety but the medication has lifted the lid on the intensity. Sometimes it’s not enough, I become more and more agitated and what ability I did have to string my thoughts together completely diminishes. This feeling is unsettling and leaves me in limbo. Whenever I come up against something difficult I’ve always taken a very logistical and pragmatic view on how to break it down and deal with it. However, I can’t make sense of this, how can you? How can you break something down and manage it when the foundations of your life have been destroyed.

All I am doing each day is tolerating life, tolerating each day. Not wanting to or having the desire to move forward without William. I kind of feel like moving forward with life or even each day is somehow leaving William behind, leaving behind what has happened. I can hear you all saying to me ‘but you carry him with you’, ‘he’s in your heart and in your mind’, ‘you’ll never leave William behind, he’ll be with you always’, and you are right but it’s not the same as William being here, to me it feels like a betrayal to move forwards, to get to the end of each day. I now know I am not going to be moving forward knowingly, not by choice but if I do it’ll be naturally without me knowing. It doesn’t help when people point out subtle changes in my mood or something that I might do, all this does is exaggerate that it’s a ‘marker’, a ‘sign’, but it creates more of an issue for me, pointing out that I have managed to cope better with something doesn’t allow me to move forward naturally without me knowing or noticing, but just highlights that it’s happening, and that is what I want to avoid completely. I don’t want to move forward.

To even begin to entertain the idea that there is a life without William, there is another element that my mind is fighting against. That is needing William’s permission, William’s permission that it is ‘ok’, ‘ok’ to function and exist without him here. This is something that William cannot possibly tell me himself but something that I need to ‘feel’ him say or ‘sense’ him telling me. At the moment I am not ready or willing to allow this to happen. So for now I will carry on tolerating life, tolerating each day.

One thing I am certain of now is that if I carry on with this life, the life I have been left without William, I will only ever manage to live with what has happened. I will not leave it behind me or move forward but learn how carry it with me through life. Like I carried William for 9 months, like I carried him in my arms for 382 days, and now like I am left to carry him, only in my heart.