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When She Whispers and When She Screams

I believe one of the hardest challenges of motherhood is putting your own health and wellbeing to the forefront. When our babies are born, the second they are placed in our arms everything we knew about the concept of time disappears. Now it is literally all about them, 24 hours a day, seven days a week. We do not think twice about this. We simply do this out of sheer need and love for our little ones.

We sacrifice our bodies, sleep, rest, space to be alone, time to eat, shower, to even think….the list goes on.

If we have a support structure around us, we sometimes get help to start the recovery process and to be able to focus on our wellbeing. But some either do not have that support or for all the reasons just cannot.

The years can slip by.

I have an eight-year-old now; oh how I know the years can slip by.

Even when you do get a bit of breathing space, the list of outstanding demands of things unattended can be almost impossible to tackle.

Sometimes your body will whisper at you that she needs things and sometimes she will scream.

We so often drown both out.

I have been highly effective at ignoring both such whispers and screams. It has equally enabled and inhibited me. My ability to have a tunnel vision and block out everything got me through a PhD giving birth to two sons along the way, the second born at the start of my final year. It continues to enable me to write books and speak on stage shutting out the 30 plus mental tabs constantly on.

This is not a super-mum badge.

I have done what was needed to be done – and still needs to, in order to hold my place in the industries I work in. It is also my Achilles heal.

I have worked so much on this over the years. I have developed strategies to manage the demands of both home and work, to not reach burn out - all from harsh lessons of not having anything in place. However, there is much still to learn.

Listening to her whispers and honoring her screams is still not something that comes naturally or easily.

More tough lessons continue to be learnt.

Over two years ago my body started whispering to me, literally in my ear and then eventually she screamed and screamed. I did not listen, and I did not act until it was far too late.

On the first week of June this year I had major surgery for an advanced cholesteatoma in my right inner ear. This is a growth that occurs inside the ear, more common in older patients. In my case it is not clear why it happened. This growth is not cancerous but it does spread and eat away and surrounding tissue and bone including the hearing bones. If left it will ultimately spread to the facial nerves, brain membrane and beyond.

The name of the surgery I had was called a modified radical mastoidectomy. I have given birth three times and I would easily opt to give birth a further three times than experience that surgery again. It happened five months ago, and I am still healing. I will need further surgeries and I will never fully recover. I have permanently lost two out of three bones of hearing. The advanced stage of the cholesteatoma had already eaten away at these two precious bones. I have lost significant ability to hear in that ear. I cannot get my ear wet or experience the utter joy of my head being under water for the foreseeable future. My scar aches and hurts with cut nerves trying to reconnect again. Adapting to the loss of hearing and increased noise sensitivity (my ears cannot balance sound as well), as someone naturally sensitive to this in the first place, is also ongoing. Let alone the huge emotional side of healing.

As hard as this has been….it could have been worse. I know many go through so much worse. Lessons have been learnt. I have new steps to listen to the whispers and know how to respond to the screams.

This blog is to share those steps with you and encourage you do the same. Especially at a time of year where there is huge pressure and stress – you are still important mama.

As a side note, this year I have started referring to my body (and mind) using the personal pronouns as she/her. These are pronouns that indicate a person might identify as female. This I do, but it has been more than this for me too. I have found that speaking to my body in third person (rather that ‘it’) has enabled my own self-talk to improve. This has helped me immensely in my healing journey and there has been a lot of healing this year – postpartum, post-surgery, post last baby, and the mental impacts of a world-wide global pandemic.

The Back Story

This background is to show you how I missed those first whispers and how I should have responded when my body started screaming at me. It is also to share with you the challenges of conflicting needs in motherhood especially when it comes to your own health.

I first noticed symptoms back in mid-2018. I got the feeling of a slightly blocked right ear. I fly regularly and have done for the best part of five years and thought it might have been related to that. We were also preparing to start fertility treatment for baby number three and still negotiating the terms on the contract for my cookbook with the publishers. It was so easy to brush off these first signals. I thought it would just go away and ignored these whispers for numerous months.

Come November (Nov 22nd, 2018) the situation with the publishers completely unraveled. I got that email (you can read here) and my whole being became focused on this, and two small children at home. Fighting to keep afloat not knowing the outcome. Even fertility treatment plans got thrown out the window.

My mental health at this point went from whispering to screaming in a mater of weeks. I was experiencing crippling anxiety – the most anxiety I have ever faced in my life – as a direct result of the inhumane treatment from my previous book publishers. This level of anxiety was beyond my ability to manage alone. I was seeing my GP for this and on anxiety and sleeping medication. It was at a check-up for this that I asked my GP to look at my ear. She did, but unfortunately brushed it off saying she did not think it was anything and to just go and get the ear cleaned.

Ever tried to get bookings for something medical related in December and January? It is a nightmare as many go on leave with available bookings very reduced. It was mid-January of 2019 before I could get to an ear cleaning clinic that did the suction that was required (supposedly). Over this time, I even went to an accident and medical clinic one bad night from pain in the ear and was yet again brushed off with the same response and advice. On both occasions I should have been referred to an ear, nose and throat specialist (ENT). I should have pushed for this myself, not accepted what I was told. My poor body, she was screaming at me but because I was not in a good place mentally, I still did not question the advice.

Shortly after this I finally got in to see an ear cleaning clinic. I had two appointments there and a keratin plug was removed which I thought was the end of things. We were still bound by a non-disclosure agreement and fighting the publishers so again I ignored any whispers my body gave to get this checked on or seek a second opinion. I had done what the GP had suggested and moved on.

In early February I also experienced a miscarriage. We were not actively trying to have a baby with everything happening, but we were not, not-trying. Those who have walked the path of fertility will know exactly what this means. It was in April, finally free of everything to do with the publishers and we were about to start fertility treatment when we found out (in the fertility office) that I was miraculously pregnant with our much hoped for third baby. A true rainbow at the end of a hard season. Life went from busy to extremely busy and exhausting and again the ear was forgotten about.

It was around when I was about 28 weeks pregnant that symptoms started to come back in my ear. This time I went straight to an ear cleaning place thinking that was all I needed. The nurse however looking at my ear was a bit worried and I happened to be in a clinic with an ENT in the same building. She asked me to wait and have him look in. It was this specialist that identified the cholesteatoma (well over a year since first symptoms) and told me that I would require surgery to remove this. However, I was not able to have this while pregnant and I would need ongoing treatment until I was.

I would like to say this was the end of the saga but sadly it was not. Ray-Ray came three weeks early. My first proper consultation with the ENT was scheduled before his due date but this I had to cancel as there was no way I could focus on my ear with a brand-new baby nor have the surgery then. Back into the Dec/Jan situation again which meant no appointments until February 2020. There was one morning in that time I woke up with blood coming out of my ear. Ray-Ray was only a couple of weeks old and probably what I should have done is go straight to the hospital but that is not an easy choice with three small children. We did go to an A and E clinic and we were promptly told to go back to the private ENT and not the public system. Looking back, I wonder if this was also a mistake. I do not think my body could have been screaming at me any more than she was but in the haze of newborn days, trying to keep my business going especially with Ray-Ray coming early I just did not really stop to consider the best path or to ask for options.

Come February there was a lot of confusion around both the public and private systems. We had a huge insurance battle – by the way I have learnt so much about health insurance and how screwed that is - and finally in both worry and frustration we paid for a nanny and my husband and I went together to Auckland hospital to get some answers. At this point the pain in my ear was ongoing and had started to travel down the side of my neck. I was also getting a lot of vertigo which would come in waves. This by the way was to continue until I had the surgery. Now I was finally listening to the screams. Writing these symptoms, I cannot believe I was still questioning how severe they were. It goes to show how hard it is to advocate for yourself especially with small children to look after. Ray-Ray was only just a couple of months old. After a two-day stay and numerous tests, more appointments afterward (it is “elective surgery”) finally in March this year I got surgery booked…..and then COVID hit.

I was literally due to have my pre-surgery consultation on the Wednesday one day before Level 4 lockdown was to come into play. Due to the seriousness of my condition by this point (now nearly 18 months since first noticeable symptoms) I still went in for this appointment which by the way I had to question for when they rang and said they were only taking serious cases. I asked, ‘is mine not a serious case?!’

It was very surreal when I went. The staff were in a state of heightened pressure, all in masks, the hospital was empty, and my surgeon had to tell me he literally did not know what was going to happen from here. That it could be six months or a year before this surgery happened. As my surgery involved drilling bone it carried the highest risk in terms of COVID. Simply put; if I had COVID everyone in the operating theatre would get COVID without question. The only way surgery would be done is if it became life threatening – if the cholesteatoma crossed into the brain membrane. I was explained the early symptoms of this, and was then to have weekly appointments at the hospital to keep an eye on what was happening – these were also not pleasant as they had to extract some of the growth either under local anesthetic or without pain relief.

Least not forgetting the reality of keeping a business going, suddenly being the sole source of income as my husband’s business took a stand still, looking after three children at home and the country completely locked down.

Fun times in 2020 right.

My work has always been my saviour and there is something to be said about keeping busy as it was the best thing I could do at the time. Like so many of you, total survival mode kicked in. As soon as we got to level three preparations began for my surgery. I was the top of the priority list. When alert level two was announced I was up.

It was a couple of days after my surgery that the idea came to me at the dinner table with all the boys to create a children’s book this year. I could not sleep very well especially at night with the pain and discomfort from my ear. Working on this book ('My First Vegetables') in the wee hours of the night gave me purpose when I needed it the most. It was to be one of the silver linings to come from this ordeal.

I have spent hours going around in circles wishing I had done so many things differently. Wishing I had listened to those first whispers. Wishing that when my beautiful body started screaming that I too started screaming. Like all paths, this one has yet again humbled me and remined me just how challenging our health and wellbeing is .…yes as someone who works in this very field. The demands that we juggle are regardless of our work or even if we are working. This is a challenge of modern motherhood….parenthood actually as this is also not exclusive to just mothers. Deep down many of us are simply trying to keep our heads above water.

I have shared this because I want to pass on this learning. To encourage you to check in to what your body is telling you. Are there signs that you are ignoring? When was the last time you had a check up of….anything??!!

When my tours ended this season, I intentionally planned a ‘health check week’ for straight after. Basically, I did all the things! I saw my GP to check a small lesion I was worried about (have had one removed a few years ago) and got some bloods done. I was due for my smear test and got that over and done with while I was there. I got a second opinion on the lesion at a skin specialist and did a full body skin cancer check. I had a dentist check-up - when did you last go to the dentist? As my eyes have had to take some of the load from my lost hearing, I booked an eye check as well and got a referral to see a specialist. This we did on Friday and as I could not drive home, my husband came with me and we needed to pay for a nanny just to do this.

Lastly, I finally got a hearing test. I have been putting this off as not knowing the full extent of the hearing loss has been too hard to swallow but it was needed to know what my next steps are. This was not offered in the public system, so I just did this privately. I do know that more surgeries are ahead, but this is the first step in figuring all that out as well.

None of this I ‘wanted’ to do. It took a lot of time and it did take extra finances too. But having done it, I do feel more at peace. I found it worked better for me doing it all at once and at a time that was slightly less pressured. Each year I will now continue to do the same at this time. An annual health check so to speak – being a step ahead of things I might ignore.

I believe this is a conversation we should be having with each other. Not focusing on getting back into your jeans, losing your baby weight or all the other superficial things our society is obsessed with. So, if I happen to ask you while having coffee when you last had your smear test done you will know why! It is also one of the hidden challenges of COVID too that we should acknowledge because we so often need help to either get to the appointments or need an advocate with us. How can you get your smear done with small children in the doctor’s office? I would honestly watch any of my friend’s children for a long as they need to do this but asking is so hard because we just do not talk about this. Let us have these awkward conversations because it may save a life.

I was lucky and I know this. Yes this learning has been hard but many go through so much worse. Life has been largely able to continue as normal. I am so grateful for this. I am also glad this was me and not any of our boys. I would chose me any day. I know some of you reading this may not be as lucky and my heart truly goes out to you.

I cannot take away this mammoth challenge of motherhood. I can however, encourage you check even one thing out that is niggling at you. Do not ignore those whispers and if she is screaming and no one is listening, then you start screaming too and do not stop until you get the answers you want and without question deserve.

xx Dr Julie

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