A Girl Beyond Closed Doors

By Jessica Taylor-Bearman

Part three of the number 1 bestselling series. After twelve years of being trapped in the world of one room by the M.E. Monster, Jessica's dreams start to come true. She's pregnant! But Jessica has to adjust to being a disabled mum in an inaccessible world and face the critics who doubt her abilities. Balancing parenthood and chronic illness, expectations versus reality, Jessica discovers alternative fairytale endings are possible...

• Language: English
• Publisher: Hashtag Press
• Release date: Oct 19, 2023
• ISBN: 9781913835316

Book preview

CHAPTER ONE

2018

Jessica Taylor-Bearman? the neurologist called loudly into the waiting room.

I took a deep breath and followed him into his office. Ever since the years I’d spent hospitalised, I’d been terrified of neurologists. They tended to suggest that my symptoms were psychological, that it was all in my head. It was the reason it’d taken me years to see one about my shaking limbs or about my worsening pain symptoms.

I can see that you have a shake. Is this normal for you? The neurologist looked up absentmindedly from the notes he was reading.

It’s been getting steadily worse, I think, I said earnestly. But I’ve suffered with the shakes for a long time.

The neurologist took a deep breath as he watched my limbs spasm. I think you have dystonia, Jessica, as well as your M.E. of course. I’m going to prescribe you with some medication that we can try.

Relief filled every fibre of my body; I’d been listened to. I’d finally been heard.

*

I took the first new tablet in the evening and within a few hours I felt peculiar. My brain felt heavy, as if made of lead.

I don’t like this feeling, Samuel, I said wearily as I covered my eyes with my hands.

Hopefully it’ll make you feel better soon. Samuel stroked my head as I turned on my side and curled up in a ball. I know, why don’t we talk about your favourite things we’ve done this year. I mean it’s been a big year for us!

Well, staying in London and seeing The Lion King at the theatre was amazing! I said softly as the effort to speak felt like too much. Hakuna matata and all that.

"Ah yes, that was a good one, but I think I enjoyed Aladdin even more. I mean the genie was incredible."

I could hear the excitement in his voice, which made me smile.

Our honeymoon was special too. That Norwegian cruise was a brilliant idea from your brother.

I smirked and nodded my head in agreement. Oh, the fjords. Then the other cruises we went on too.

Samuel pulled the duvet up over me, turned off the light and cuddled into me. It’s safe to say that our lives have changed a lot in the past twelve months.

That was an understatement. My parents had decided that after thirty-four years of marriage, it was time for them to go their separate ways. Mum’s poor health had made them both reassess their lives; she’d been fighting cancer for over two years, alongside her uncontrolled bipolar, and we’d been told that her prognosis was poor. Somehow, she seemed to just keep on going throughout all the various treatments. Cancer had become a ticking time bomb inside her and she suddenly realised that she wanted her and my dad to live the lives that they’d always desired.

The household split in two; Mum, my sister, Becky, and her boyfriend, Ben, went to live twenty minutes away in Faversham, Kent, whilst I stayed at our family home in my accessible room with Samuel and Dad.

I spoke to Mum and Becky on video call most days. It felt strange to be so far away from Becky considering we’d always been partners in crime, but she had to look after my mum now.

Shall we FaceTime Chloe and Nellie in the morning? I asked Samuel. She might be busy though . . .

Chloe had given birth to Oakley, a little brother to Nellie, in the past few months, so she had her hands full. The welcoming of another baby into the family had made Samuel and I talk even more about what our options were, but every time we reached a dead end. We’d thought about adoption, but that was ridiculously hard due to the fact I was disabled and unwell. We’d thought about surrogacy too but that cost a fortune and I still wouldn’t be well enough to look after a baby once it was born.

Samuel? I turned my head round to see that he was fast asleep.

*

The morning came and I didn’t feel any better, in fact I felt worse. I took the medication again.

It should get better once my body is used to it, I told Samuel as my head started to feel tingly.

Should you really feel this bad? Maybe you are crashing from the M.E.? he asked. Payback from going outside a week ago?

Days went by and I couldn’t get out of bed without collapsing. I couldn’t lift my head off the pillow without feeling dizzy. I was nauseous, even moving my eyes from side to side made me feel queasy. My life was becoming more restricted again, as I had to lie completely still.

I’m just going to check your blood pressure, I don’t know what else it could be, Samuel said, as he pulled the blood pressure cuff tightly onto my arm and it started to pump up. He did a double take as the machine beeped and showed the reading. 70/52.

Did I just hear that right? Dad had walked into the room in his bottle-green paramedic uniform having just arrived home from work. Let me check again because that is dangerously low.

A furrow appeared in between Dad’s eyebrows and his tired eyes as he looked again at the reading. Right, you need a drink and salt. We’ll have to check with your consultant, but if it stays this low then it must be the medication.

It remained low all day, so that evening I didn’t take the new tablet and hours later, I already felt so much better. My blood pressure had increased. Although my shaking was worse without the medication, I started to feel more human every day. It was as if a suffocating fog had lifted from my body, and I could see again. It took weeks for me to recover from the mess the tablets had left me in. When I contacted my consultant for help, he told me that I must have been sensitive to the drug and was suffering from a rare side effect. I slowly started to move from my bed again with Samuel and my carer holding my weight.

Experiencing my body crash so extensively had been terrifying. It made me think that if that had all been down to one medication, then what was the vast concoction of pills I took daily doing to me? How many of my symptoms were being potentially exacerbated by what I was putting into my body?

The medication I took was all about giving me a better quality of life, but the reality was I’d been on these high doses of strong opioids for over a decade. It was a tricky balance to get right, as the meds weren’t prescribed to cure the M.E. Monster – after twelve years of suffering, there was still no treatment for that – but they had previously made the pain more bearable. By meddling with it, was I going to cause myself more suffering? It was something that I was willing to find out.

CHAPTER TWO

2019

It was New Year’s Day and Samuel, and I were curled up next to each other on the bed in our room. Dad was cooking a turkey curry in the kitchen next door with the leftovers from Christmas and the smell was making me feel sick.

It’d been a few months since I started experimenting with coming off some of my cocktail of medication to see which ones were still working, and I’d noticed that my gastro symptoms had started to increase.

It was strange because despite feeling more nauseous over the past few weeks, I’d also felt more alive than I had for years. Whether this was due to the fact I’d finally come off the morphine, or the M.E. Monster had decided to give me a break, I didn’t know, but it’d been a pleasant surprise.

For the first time since I was a teenager, I’d managed to get to the bathroom every day to sit on the loo with the help of my carer – and that felt like progress. Previously, I hadn’t been able to even sit upright in a shower chair and had only managed to get to the bathroom once a week to wash my hair! Even though I was still unsteady and needed to lean on others, I could now manage to walk the five steps to the ensuite.

Once Dad had finished with his turkey extravaganza, I transferred into my wheelchair to eat my food at the table. It was only moving from one room to another, but it still felt like a luxury that was hard to put into words, after spending years of being unable to leave my bed. To maintain my energy levels, I still needed my carer to help feed me. Since coming off the medication for my dystonia, my hands always violently shook when I tried to do anything with them. I’d become accustomed to not being able to manage basic things like eating my food or going to the bathroom by myself. It was all part of the disabled world of the M.E. Monster.

Being able to feed myself was my next big goal, and it’d require me to have the strength in my arms to repeatedly lift a fork to my mouth. After I’d been fed a few mouthfuls of Dad’s feast, my stomach started to turn.

I tried to put the nauseous feeling to the back of my mind, but as I moved my electric wheelchair towards the bin to get rid of my half-eaten plate of food, the smell of overripe banana from the food waste filled my nostrils. Before I had time to ask for a bowl, I’d vomited the content of my stomach all over the floor.

After my carer and Samuel had cleared me up and got me back into bed, to my surprise the sickness started to ease. It was just the Monster making my sickness symptoms flare up, I thought as my stomach gurgled loudly. I just needed to rest, I told myself, so I turned over on my side and attempted to sleep it off.

*

The sickness didn’t seem to fade the next day. I drank a bit of water with my medication, and I could feel my stomach starting to contract. I was used to my symptoms flaring up when I was sick, the pain always increased, and my exhaustion doubled. It never went away quickly. But much to my surprise, I felt a lot more stable an hour later. It was as if the sickness had never been there.

That night I ate the dinner that Samuel had cooked without feeling sick.

It must’ve been your cooking that made me feel sick! I teased Dad as we cleared the plates.

I went to brush my teeth in the bathroom but once I put the toothbrush in my mouth, the familiar feeling of nausea came over me like a wave. I didn’t have time to take the toothbrush out of my mouth before I started to gag.

The rest of the Christmas holiday was filled with intermittent moments of sickness throughout the day. It seemed to be more prevalent in the early morning and the evenings, which seemed to coincide with the times that my energy levels were down.

But why did I feel constantly hungry? For years I hadn’t even known what it felt like to be hungry. It’d been this way since my first experience of being fed by a tube, which pumped food straight into my stomach, bypassing my mouth. In the past week, I’d felt sick with hunger, which was totally alien to me. When I looked in the mirror I was perplexed: my skin was glowing, and the colour of my cheeks made me look healthier than I had for years.

Samuel came into our room holding something in his hand. Is it alright if we have some time on our own? he asked my carer.

Of course. I’ll come in with your next lot of medication later, she said to me before shutting the door behind her.

He sat on the chair next to our bed with a quizzical look on his face. Jessica, your body has been acting so strangely lately.

I know! I’ve no idea why my symptoms have changed so much.

Right, I want you to hear me out, but when was your last period?

I looked at him in surprise, Well, I mean . . . I took out my phone and started to look in calendar.

I know it’s probably nothing, but it just seems like it was a while ago. He shrugged as he watched me scrolling through my phone. You know I was thinking it’d be nice to go on holiday together soon, just the two of us.

If we can afford it, that’d be nice, I said whilst scanning the dates. It had been a while, but knowing my brain fog, I’d probably just forgotten to write it down.

Have you found it?

I shook my head.

So, I’ve been thinking about the past few weeks, and I think it’s best . . . He took a box out of his hand, and I did a double take when I realised that it was a pregnancy test. I know you probably aren’t, and it’ll just be the M.E. Monster but I thought it was . . . well . . . best to check. He looked sheepishly at me as I gaped at the very idea. But maybe take the test and if it’s negative, which I’m sure it will be, we should just look into booking a holiday. Go on, you’re making me all nervous!

There you go. I handed Samuel back the test. My heart was hammering in my chest with anticipation as I thought about what that test meant to me. Could it really be a possibility? What would I do?

Shall I decide where we are going on holiday then? I tried to fill the deafening silence as we continued to wait.

Samuel grinned at me. I’d love to go back to the Norwegian Fjords.

It must’ve been two minutes now, I moaned.

I looked at the wall in front of me at the painting I’d done for Samuel’s birthday. It was of one of the fjords we’d first visited on our cruise eighteen months ago. I transported myself back to the stunning scenery that had surrounded us. The sky had been the brightest of blues and the sun had made the snow-covered tops of the mountains glisten. I could’ve watched the fast-flowing rivers and the wildlife forever.

Jessica . . .

I was still smiling at the thought of returning to that beautiful place soon as I turned my head. Samuel’s shocked eyes were transfixed on the pregnancy test. He took a gigantic gulp and looked up at me.

We aren’t going on holiday.

CHAPTER THREE

Five Weeks

As I stared at the vivid line on the pregnancy test in utter disbelief, my hand instinctively went to my stomach. It was most certainly a clear line. I was one hundred percent pregnant.

For a moment, all I could feel was jubilation at the impossible task that my body had achieved. My heart lifted at the fact that my body, the body that’d survived throughout the odds and had been told multiple times was too weak to even hold itself up, had managed to get pregnant. We’d always wanted a baby, but we hadn’t been specifically trying.

Then the realisation hit me like a tonne of bricks. Thoughts came in every direction at one hundred miles per hour and the panic began to spread like wildfire, as suddenly what had always felt hypothetical was now very much real.

What were we going to do?

Shit.

Medication.

Shit.

The M.E. Monster.

Shit.

Coping with pregnancy.

Shit.

The medication . . . the medication . . . our baby . . . I can’t . . . I can’t hurt it.

Shit.

Before I could even voice the fear that was flooding me, Samuel pulled me into a warm embrace. I let my body collapse into his arms, and he held me up, as adrenaline flowed through every part of me. We sat in silence both trying to come to terms with our new reality: we were going to be parents.

When I’d married Samuel, it’d become our dream to have a child. It was a plan for the future that we’d endlessly talked about together. But the plan hadn’t included still living in one room of my dad’s house and being mainly housebound – I’d wanted my health to have improved from that.

Samuel kissed my forehead. We’ve got this, Jessica.

His voice was soothing as I tried to calm my thoughts. It’d been everything that we’d wanted, even if it wasn’t at the time we’d planned for.

Think of all you’ve been through, he continued. You’re a Taylor-Bearman and we can deal with anything.

A surge of excitement rushed through us both. A baby. Yes, a baby!

I typed a list of every person that I needed to contact.

I need to ring the midwife number. I started surfing the internet to find the contact details. I’ll need an emergency doctor’s appointment today. I’m sure I’m on medication that could harm the baby.

We’re going to need to tell your carer. We’ve just shut her out of the room for the past hour, Samuel reminded me.

But I don’t want to have to say straightaway. I need to try and process everything. You should be the only one to know. I sighed frustratedly.

Being cared for and reliant on someone else was hard. I had no privacy or space for myself; everyone had to be involved in my care as they always had been.

The doctor’s appointment was in a neighbouring village and the only way to get there was with my wheelchair-accessible vehicle, but neither my carer or Samuel were able to drive, and Dad was at work. I had to get to there, no matter what. I needed to know that I’d done everything for the little baby growing inside of me. I had to have someone medical tell me that everything would be okay and that I wasn’t going to harm the baby with the medication I still had to take.

As I called Dad’s phone my heart felt like it was beating so hard that it would come out of my chest. What was I going to say? What would he think? As I tried to take a deep breath, Samuel’s hands clasped protectively over mine.

Hello? Dad answered.

Hi Dad. I was just wondering – err – I need to get to a doctor’s appointment in Wainscott. Is there any way I could get you to take me?

But the doctor’s always come out to you honey. Don’t they?

They can’t see me at home. They’ve asked that I come to the surgery. I tried to say it in a calm voice, even though I felt anything but.

I can’t get away from work in time. I mean, is it urgent?

I started scraping my fingers through my hair. Oh okay, it is urgent, and I need to get to the doctors for four p.m.

What’s going on Jessica? You don’t sound yourself.

I’m alright, I just need to find a way of getting to the appointment. Can someone else take me? Maybe our friends from up the road? I was drowning in panic.

If you can get a photocopy of their driving licenses to send for the records, then yes. What’s going on darling?

There was long pause as I contemplated what to say.

Well, I’m okay, I think. I’ve–I’ve just got some news . . . well, Samuel and I are . . . we are going . . . we’re going to be–I mean–I’m pregnant.

The silence on the line was deafening.

Wow. I wasn’t expecting that— Dad said before nervously asking. And you’re going to . . . you know . . . keep it?

I was stunned. I turned to Samuel who was staring down at the floor shaking his head. Despite the fear that was engulfing me, I gathered all the strength I could and said, Of course I am.

Then we’d better find a way of getting you to that appointment, Dad said with concern.

Adrenaline surged through me, and my hand instinctively went to my stomach. Even though I was terrified, one thing I did know was that I would go to the end of the earth for this little human inside me.

CHAPTER FOUR

Six Weeks

Butterflies filled my stomach once my name was called in the doctor’s surgery waiting room.

So, congratulations are in order! Dr H beamed at us as she shut the