Nothing is like it was…

This month’s insomnia has been sponsored by infertility. My inability to reproduce occupies far to much space in my head & life. A big problem with healing from pregnancy loss is how taboo the topic remains. Things have improved a little, but on the whole I still feel like most people do not want to hear about it. Some have very valid reasons to shy away from those conversations. Others merely feel uncomfortable. Rightly or wrongly that leads me (& others) to feel we must keep it to ourselves.

Obviously I have attempted to combat the silence both in my writing & my life. I know it helps those who have lost & those around us to be more open. My own attempts to get on with it quietly were incredibly harmful to me. Still, there is so much that I have not shared. There are important people in my life that I’ve never spoken about my miscarriages or infertility with. It’s not a secret, but many things have prevented me from feeling able to discuss how I have felt.

Beyond emotion there are so many details that aren’t revealed. Common place aspects of miscarriage that are only ever referred to in hushed tones by those who have been there. There are various behaviours that I kept to myself because I feared they veered towards crazy. I’ve subsequently discovered they’re common rituals. Humans find comfort where they can, it would have been less frightening to know I was normal.

Most of all, the secrets are weighty. I feel laden with the obligation to keep the unmentionables shrouded. I don’t want to feel this way anymore. I definitely don’t want others strapping on this load. I need to let some of it go.

I say some, because, there are people & realities I cannot change. Crashing against solid stone will bring me no comfort. Thus, I want to reveal the parts that I can with this kind & ultimately faceless audience. Hopefully it can help others who feel burdened by conventional decorum. At the very least I may finally feel lighter.

I fear you’ll judge the box I’ve kept for 20 years. Adding items that others have hinted should not have been saved. Very few know it exists, the suggestion that it shouldn’t have has always hurt. I don’t think the positive tests from each pregnancy are gross. I’ve still felt the needed to hide them. Saving hospital bands & paperwork makes sense to me. I don’t understand why wanting to hold onto something (anything) connected to my children is morbid. I’ve been assured it is.

Positive pregnancy tests
Document requesting blood pregnancy test

I’m embarrassed of the few new born pieces I dared to purchase. So often I’ve seen childless women with tiny socks stashed in a drawer portrayed as lunatics. Dangerous, even. The type who might steal your baby. I hide the pregnancy, early years & baby names book. They’re packed away with the baby grow I saved from my niece’s early days. I thought one day I could frame pictures of them both babies identically clothed. Yes, the frame that would have housed those photos remains box fresh alongside. I have no need for this paraphernalia, I just can’t bear to throw them away. I worry this will be viewed as pathetic. Another crazy lady whose biological clock went bang. They were logical purchases when I made them. I was pregnant. When those pregnancies failed I was certain the next one wouldn’t.

I’ve never shared the pictures I took when my stomach started to change shape during my last pregnancy. I wanted to show off that development, but I didn’t think I was allowed. At the time it would have been tempting fate. Afterwards, there is instant unease if the subject is approached.

ly is wearing a red dress and taking a side on mirror selfie

Then there are the memories that will never leave and are never uttered. Unpleasant shards of the mess no one wants to witness. The exact tone a nurse used when she told me it was for the best because I was so young. Or the ice cold that runs through me everytime I see an examination table with stirrups. The fact that a miscarriage is more than blood and that more must be dealt with. I don’t talk about sitting alone in my bathroom trying to decide what to do with the bloody fragments of the child that will never be. Or the torture of bleeding a little & then having to wait. Clinging to hope through blood tests and scans. Only to be told you’re technically still pregnant, but it’s no longer viable.

Risk of infection, prolonged bleeding, the extent of the pain are all things I only become aware of through experience or via other women in private groups. We’re all so squeamish about the reality of pregnancy loss. I think it’s entwined with the patriarchal disgust of ‘female’ bodily functions. The same whiff of shame hangs over the process. I have felt I must not reveal anything too corporeal. Almost as though declaring the facts of my physical condition is gratuitous. Likewise, I have restrained aspects of emotional responses for the comfort others. It simply isn’t sensible to treat such a traumatic event with polite moderation. The inhibition has damaged me.

The older I get the more I seek clarity. Much of the pressure that society brings to bear obscures my view. I don’t want to submit to it anymore.

Pale white feet standing in Loch with pebbles

The September Issue…

Autumn has always been my favourite season. The drawing in of the nights & cooling of the air used to be welcome. These days this time of year is more complicated.

All of my babies were due in August or September. As the weather changes I am beset with anniversaries and reminders. People who were pregnant with me throw birthday parties. I quietly mark dates I had hoped to celebrate.

This year my orbit is congested with pregnancy announcements creating a perfect storm of emotion. All are depressingly familiar. I’m sad and lost. I don’t know how to find a purpose big enough to fill up my life. Each time I begin to believe I’m approaching acceptance I’m overtaken with this stale grief.

It’s so heavy and I’m so tired of dragging it around. I want to be able to move past this, but there are too many ghosts. A million tiny pricks. Triggers lurk everywhere; always something to yearn for. Even in my happiest moments I’m aware of what’s missing.

I can’t comprehend ever making this ok. Yet, I don’t wan’t to be this tragic old bitch. I’d like to stick all my consolation prizes together & collage myself a happy enough ending. I’m scared I’m not sufficiently good/strong/grateful to make do & mend.

When will they stop…

I used a hand sanitiser in a train station the other day. It was one of those super strong types that you find in hospitals. As soon as it hit my skin I was whisked back in time. For a second or two I was somewhere else. Somewhere I didn’t want to be.

The cold sensation drifted through my body. A zoetrope of mixed up images spun in my head. Blurry flashes conjured by the clinical scent. I felt dizzy. I sat down, took some deep breaths. It passed. I was grateful.

Blurry spinning image of trees & sky

It wasn’t entirely gone. That night the whirl of disjointed scenes dipped in & out of my dreams. Random words have jarred memories. My mind has wandered mid thought or conversation. I have felt the panic rising. Spells of forcing my head to connect with my physical reality have emerged. Struggling to focus on what I can actually see, hear, smell in this moment. Ignoring the feelings climbing my throat.

Tonight in the shower I couldn’t shake the feeling that the hot water streaming down my legs was blood. I couldn’t wipe the hospital aroma from my nostrils. Nor soothe the ache that spread from my back to my thighs. The hand sanitiser has triggered a reaction. My body is recalling the trauma stored deep within. It’s a phenomenon associated with PTSD known as body memories.

I haven’t experienced this symptom in quite some time. It lies dormant; rising unpredictably. Sometimes reacting to obvious & painful stimuli. Or, like this week, triggered by a tiny insignificant detail. My olfactory senses seem particularly attuned to old wounds.

New born baby feet with words birth trauma Association

This time it’s the initial loss. I feel my body failing. I know it isn’t happening. I have learned how to pull myself back to the here & now. Still, those moments when I’m dragged to the past feel completely real. I am not just thinking about unpleasant events. I am feeling them. My flesh & nerves & senses are reacting to something that happened 20 years ago.

Body memories are excruciating. It becomes a battle between what you know & what you feel. Fighting strong emotions is a challenge. When you add physical sensations grounding yourself is an onerous task. I have experienced these episodes replicating the sensations I felt during miscarriages & pregnancy. At times these physical memories are accompanied by flashbacks & other PTSD symptoms. Other times they occur in isolation. They mirror my actual experience so completely that I’ve found myself taking multiple pregnancy tests when I knew it was almost impossible for me to have conceived.

Sands logo

It’s another aspect of PTSD that I rarely see discussed in the mainstream. Post Traumatic Stress Disorder is not only (or even mainly) associated with combat trauma. Yet, it’s the link most people draw. The violent outbursts in media portrayals of the illness are not accurate. New studies are highlighting how prevalent PTSD is in women who have experienced baby loss & birth trauma. For most of us, managing PTSD is an internal process. Distress may leak out, but the grind is with yourself. Accessing the right help, surviving that help (trauma therapy can be brutal), learning to manage symptoms, accepting the parts you can never fix & the impact they will have on your life.

It’s painful & exhausting & many of us never completely recover. To stand any chance of healing specialised therapy is essential. There are so many barriers to reaching that help. It can take years to obtain any psychological intervention without the resources to pay privately. Even longer to receive the specialised therapy that can actually help. So many people can’t afford to wait.

This month I’m supporting The Birth Trauma Association and Sands. Both organisations support families who have experienced trauma surrounding baby loss & birth. Please join me if you can.

I miss you like sleep…

Too much time in my head is distinctly bad for me. Not getting stuck amongst all the crap i’ve crammed up there is an ongoing project. It is not an endeavour that is aided by inaction.

Staying home alone all day, everyday is not ideal. I require distraction. I need people who make me feel swell and to do things that help me feel worthy. I like knowing that I could jump in a taxi and go anywhere. Having a sense of control is massively important.

Being entirely reliant on others for almost everything makes my insides jitter. I feel more of a burden than ever. Which activates my guilt & anxiety. I’m obviously also worried about myself or someone I love getting ill. Plus the horror of all the people who are suffering & dying every day. I’m basically a big ball of negative emotions.

I’m struggling with pain. I miss my little ones. I miss all my people. I can hardly sleep. There’s very little work. There’s too much time to think. All this on my own time thinking about what I miss inevitably highlights the major omission.

When left to its own devices my is brain predictable. It clings to trauma. If not occupied with the business of living, I regress. Slip back into dreams of the births I’ll never labour through. Flashbacks of the blood & pain I did. Haunted by the over used phrase that always signaled it was over.

There are so many what ifs. Too many of my own actions to question. Huge & tiny alterations that could have changed the outcome. Things I never said. Words others can never unsay. Blame to place. Regret to carry. Penance to complete.

I feel trapped with all I’ve lost and every little thing I can’t share. The good memories are as painful as the bad. The selfies I took when my belly began to change shape. That magical second line on the test. Marking midwife appointments on my calendar. Blood tests with the right numbers. Making lists. Checking what ridiculous object the app tells me my baby is now the size of. Plans & scans & the bam bam of heartbeats.

Rainbow reflection on pale either arm

My body remembers it all in such intricate detail. I recall the fractionally altered taste of mint tea. Sex felt different and the smell of everything intensified. I was heavy with fear. Dulled by fatigue. Yet still floating on hope and entirely delighted to experience whatever this new life threw at me.

It never goes away. I can never take my foot off the pedal. I’m always close to skidding off the road. Lockdown is like a battle not to drift to sleep at the wheel. Spending too long contemplating my past or the what might have been is dangerous. Finding ways to keep my eyes open is getting harder.

Two lines to indicate positive result on pregnancy test

Just give me a reason…

I’m lost. I’ve spent this year trying to reposition my future & navigate the present. I have tried new things, met new people, considered a million & one possible permutations of the next 30 years. I remain astray.

I’ve always had an ultimate goal to strive for. I had one non negotiable role. Motherhood was at the centre of all my plans. It was a reason to do better and the motivation to persevere. I worked so hard on building a safe, comfortable nest. I fixed all the parts of me that could be corrected. Found a way to accept the parts that couldn’t. I believed I had a purpose. I wanted children powerfully enough to force myself into viability.

When it became clear that it wasn’t going to happen I was destroyed. I knew I’d have to fight hard to create some other life. I was aware it would be painful, but I really did believe I could lay a new path. Life’s been a fucking journey so far, but I somehow eventually arrive at ok. I thought I could do it again. I told myself I needed time to grieve, to heal, to process. Then I decided I must push a little. Or a lot. Get to the next step professionally. Say yes to things that scare me. Date fun people, keep an open mind, pay attention to what makes me feel good. If I keep moving I’ll stumble upon my new direction, right? Wrong.

Happiness ahead in lights

11 months of forcing myself to breath. Smiling, rascalling, writing, resting, networking, researching, grabbing hold of anything that sparks any kind of anything. Honestly, it is getting harder. There is no deeper meaning to my efforts. I’m proud of work success. I am grateful for all my gorgeous people. I have love and opportunity. My life is mostly in colour. It’s just very hard to keep the grey from seeping in. Even harder to convince myself it adds up to a reason for being.

I’m hollow with zero ideas of what I should be full of. I’m still at the reminding myself of reality stage. Checking myself daily. I don’t need to remember that gorgeous Swedish name because I won’t be naming anyone. Reading that piece on delayed cord cutting is futile. I should get rid of the paint for the spare room. Forget all my child rearing dreams & schemes. Thinking of this stuff only causes pain, but I have nothing to replace it with.

Search lights fanning out of darkness

I don’t know what to do. I’m not entirely sure I even know who I am anymore. One day at a time is good and well temporarily. It does not hold up as a long term protocol. When everyone else takes their children home there has to be something that makes my life feel significant. I need a reason. I need more.

Blue, I love you…

Dear Son,

Today has always been hard, but this year is worse. I always thought I’d give you siblings & they would help remembering you to be less painful. It never occurred to me that I would be reliving your loss over & over again. I hope they’re with you. I wish you were all with me. I’ll always love you.

Love

Mum

Sapling in moonlight

I’m longing for your heartbeat…

Saturday is my due date. Or would have been my due date. I’ve been so scared of its approach because I have so many unresolvable feelings.

I tried not to know my due date. I had asked in previous pregnancies not to be told because I knew the knowledge of the first one haunts me. I got a little too confident after I heard a heartbeat & let the midwife tell me. Then I made the mistake of setting my calendar to that date. Now I can never forget it.

It is sad & overwhelming for all the obvious reasons. I haven’t processed this grief. In that sense Saturday is just like every other day. I’m always thinking about this in some sense. Be it specific memories of the miscarriages or thinking about all the memories I’ll never make. Mostly, I feel lost.

Project post it

I am not entirely sure who I am anymore. I haven’t ever envisioned a life without children. I don’t know what to do now. I have to accept that my future can only ever be not quite enough. Moreover, becoming a mother has been my driving force. It’s the dream that kept me going when I wanted to give up. It was my inspiration to get stable & pushed me to pursue writing.

It’s very frightening to have your reason to fight melt away. It’s even harder to grieve the loss of this baby when it is such a crucial part of my big picture. I don’t know how to let go of that heartbeat.

I’ll be 39 next month and I have not a single clue about how I fill the rest of my life. A huge part of my identity was a mirage. I have a new reality. I don’t know how I learn to live in it.

Heartbeat on red background

Don’t speak…

I’ve talked about the misguided things that people say in the wake of a miscarriage. Although these things can hurt, I understand that no harm is intended. I’ve been hesitant to tackle the other side, the people who say things they know will cause pain. Try as I might I cannot understand what they gain from this. Bear with me, I’m going to do a little blog therapy.

I can’t believe this has to be said, but here goes. A person’s stance on abortion is not relevant if the have a miscarriage. After my most recent loss it was suggested that my pro choice beliefs made my devastation over the miscarriage incongruous. Actually I think they were insinuating that it was hypocritical of me to grieve the loss of a foetus when I support the right of someone else to terminate one. Let me be clear, I support each individual’s right to choose. My experiences of pregnancy and miscarriage have only strengthened my pro choice convictions. Carrying a pregnancy and giving birth is an undertaking of such enormous magnitude that it should only ever be done willingly. My desire to have a child is not in conflict with my refusal to deny others bodily autonomy. I don’t want or need an abortion, but I will fight for those who do. Using that against me at my most vulnerable moment is cruel. Choice is the operative word. I had no choice in losing my wanted pregnancies. My dead babies are not a debating point. Attempting to litigate how upset a person is permitted to be is disgusting.

Choice clouds

Equally repugnant and heartbreaking was the proffering of surprise that I would be hit so hard by a fourth miscarriage. The reasoning being that I should have expected it may happen (I did of course) and that I should have become hardened to it by now. I can’t comprehend the lack of empathy it would take to think such a thing let alone say it loud. I don’t understand how one comes to the conclusion that reliving the worst time of your life over and over would make it easier. I can’t understand how anyone would imagine that having a worst fear realised is any less awful because you knew it could happen. Forcing someone to defend their distress is cruel in a way that must be deliberate.

I also wanted to touch on a group of platitudes that are offered frequently. Variations of ‘everything happens for a reason’, ‘god moves in mysterious ways’ or ‘it’s a blessing in disguise’ are never ok. I have been repeatedly assured that good intentions lie behind these phrases and I’m calling bullshit on that. They’re just lazy and ignorant remarks. Even a moments thought would uncover how inappropriate it is force your religiosity on someone. If you somehow take comfort in believing that ‘god’ purposefully snuffs out specific unborn that’s bizarre, but your business. To impose those ideas on fragile people in the midst of trauma is wilful ignorance. It is choosing to prioritise your own comfort above that of someone who is suffering.

Blurred light

I’m incredulous that I have to say any of this. It hurts to be forced into these unnecessary conversations. These aren’t blunders, they are examples of selfish agenda pushing. There is no kind reason to pursue these topics. It’s callous & inexcusable. Don’t do it.

I give up…

The universe is determined to give me opportunities to discover social faux pas. The events of the last weeks have revealed to me a host of new things that lots of people say when one talks about miscarriage. The vast majority of these comments are very well meant, but nonetheless, have considerably missed the mark.

Being open about having had multiple miscarriages seems to unfurl two main threads of conversation. The most prolific being enquiries as to why it keeps happening and what I have done about it. I think I know why people ask these questions. Partly fear, no one wants this to happen to them. I suppose people think if they know the whys they can avoid it or fix the problem. The other side being an assumption that everything can be fixed. I understand that, we are so used to living in a world where things can be cured or treated. I know from having chronic conditions that people are often confused to learn that some things can not be corrected. In the case or recurrent miscarriage this enquiry is unhelpful for variety of reasons. Firstly miscarriage, recurrent miscarriage and infertility often fall into the category of ‘don’t know’. About half of those who suffer recurrent miscarriage are unable to find a reason after testing. I am one of those people. I have had all the standard tests and investigations to little avail. I did have some adhesions that were successfully removed and I have PCOS, but no Dr I have consulted believes that to be the cause. The short answer is, no one knows. Asking this question isn’t helpful. If a person doesn’t know, you’re just underling that difficult fact by making them explain it again. If they do, they may not want to discuss such private and sensitive information with you or anyone else.

Offshoots of this such as, Have you seen a Dr about this? You should get another opinion, My friend did such & such or surely there must be something they can do, are unwelcome. I have had four miscarriages. I have lost four children that I desperately wanted. Of course I have done everything within my power to find out why and prevent it from happening again. The suggestion that I haven’t offends me. It indicates that you think I am either stupid or careless. I understand that wasn’t the intention, but please, think before you speak. It’s also important to be aware that the NHS usually won’t begin these investigations until after a third miscarriage. Not everyone has the resources to seek private medical treatment. Anyone in that situation doesn’t need nosey salt in their wounds.

The other comments this loss has garnered are of the don’t give up variety. A lot of people have reached out to tell me there’s always hope. The have shared their own experiences of loss or struggles to conceive and assured me that miracles happens. That they eventually had their baby and it was all worth it. I know you think you are helping. I know you are trying to be kind. Let me just say this, not everyone gets a miracle. We are not all able to try again. There are limits to what the body can do, physically & emotionally. There are time constraints. Relationship constraints. Financial constraints. At this moment I don’t feel like I have another try in me. Losing another baby would destroy me. Maybe I will feel differently in the future (it would have to be the fairly near future), but I don’t think so. Facing the reality of my limitations is not weak. Recognising that I can not square this circle is not giving up.

I don’t intend this as an attack. I realise these aren’t purposeful attempts to hurt. I just want to have an open discourse. I think these confusions arise because we don’t talk about this topic enough. If you want to offer support to someone who has suffered this kind of loss it will be appreciated. Simply offering your condolences and assurances that you are available is enough. Respect that everyone grieves differently and your kindness will cherished.

 

Look back in anger…

I’m angry. So angry that it’s hard to contain. The problem is there’s no specific target for my rage. It’s a generalised, tear everything down kind of fury. There’s no release. I can’t spew my anger over unsuspecting bystanders. Keeping it in doesn’t feel like a viable solution either. Where does one put all the free floating resentment that no one is actually to blame for?

Life isn’t fair. I came to terms with that fact a long time ago. I’ve accepted a lot of bullshit. Fought crazy & illness & disability & mistreatment & loss to build some sort of something. I’ve struggled, but I’ve rolled with the punches as best I could. There’s only ever been one thing that I’ve felt I couldn’t do without. One single imperative. When you’re willing to get by without so many things, it feels so desperately unfair to be denied the thing that would make it all ok.

I watch everyone around me do the thing I cannot. Some with such ease it leaves me breathless. For others it’s a harder journey, but they reach their destination. I love those people and I love their babies, but it’s so hard to be the only one stranded.

I’m angry that I have to do this again. I’ve been tricked into hoping. Now I have to deal with the fall out. I am mad at myself for being stupid enough to believe. I resent having to submit to medical interventions. I didn’t ever want to hear someone say they can’t find a heartbeat again or look at another bloody speculum. I’m furious that I’m still bleeding and that I have to cope with all that triggers. It’s agony to be constantly reminded that my body has failed again. It’s exhausting to face the nightmares and flashbacks of all other blood. I don’t want to relive each of the worst moments of my life whilst trying to get through this one. I’m sick of blood tests and transfusions and putting on a brave face. I hate that I don’t get to opt out. I’m not strong, I just don’t have option of walking away because it’s too hard.

I don’t understand why it has to be me. Why my babies keep dying when I want them so much. Why does the universe give life to those who can’t or won’t love their children? Every time I read a horror story of abuse it feels like a personal attack. I think of all those terrified pregnant teens, the adult women who can’t feed another mouth or just never wanted to parent and I wonder why it couldn’t be me instead. I’m not angry at the individuals; everyone should have the right to choose. I’m furious at whoever or whatever makes decisions. What could I possibly have done that disqualifies me?

I see people smoking as they hold their child and I have to restrain my scream. Each impatient, inappropriate or lazy exchange between a parent & child kills me. Even the standard complaints about bring tired and tantrums make me feel like punching someone. I know I’m not being fair, but it’s like bitching about your diet to the starving. Don’t they know what a miracle they’ve created? How can they forget how much that little person needs them to do the right thing. I know it isn’t easy. Kids are exhausting and all consuming, but they’re worth it. The joy outweighs the sacrifice.

I’ve had enough therapy to know that burying your feelings is never helpful. I know I can’t dig a deep enough hole for this much emotion, but I have no idea where else to put it. I can’t lose it with every person who is rude or mildly inconveniences me. I have no desire or intention of venting on the people I love. I used to work this shit out with a scalpel. That’s no longer an option. What do I do?