I Am Titanium

As part of the Slater and Gordon #HospitalHelpingHand campaign, I want to share with you all some hints and tips on visiting a friend or family member in hospital.

As you’ll see through my story below, my time in hospital was not the most pleasant, but it was important. Having visitors was crucial during this challenging time.

My biggest tip is to bring a smile. For me happy faces cheered me up no end. Another tip is to bring sweet surprises. I still remember the mint choc chip ice cream one visitor brought me. Finally I would say to go with the flow mood wise. Sometimes vibrant jokes are great. Other times your company with minimal conversation means the world.

Medical Intervention and the Social Model

When you’ve been involved in disability activism as long as I have, it’s second nature to repel all mention of medical intervention (writing a rap here was not my intention).

Nonetheless it’s good to acknowledge the occasional need for hospital help. Despite us all agreeing that the ‘medical model‘ is bad. Sometimes medical support is invaluable. Plus its still very much within the ‘social model‘. As it enables people to overcome the societal barriers.

When I was asked to join in the digital campaign #HospitalHelpingHand I knew exactly what to write about.

My Scoliosis

Most people with my impairment (Spinal Muscular Atrophy type 2) develop a scoliosis of the spine. Basically the weaker muscles can’t hold the body upright, and gravity causes the spine to twist and curve.

I was no different. From around the age of 12 my physios tried out different seating cushions and eventually a full body harness. It was horrible. So uncomfortable. As I was chubby it gave me moobs. All at a terrible age too.

By the time I was 15, the less medical interventions were not working. I was so hunched over to my right side. Plus my spine was twisting and squashing my insides. Beyond the pressure on my elbow, and the general discomfort, I had something even scarier on this horizons.

Being rubbish at coughing (damn those weak muscles), every winter was scary. A common cold could easily turn into a chest infection. Or worse – pneumonia. I’d often needed antibiotics to get me back to full steam.

With my scoliosis the risks of this were higher. My lung capacity and function was being restricted.

From Sunshine To Surgery

So in 1999 I was told I’d need spinal fusion surgery. Meaning I’d have 2 operations at Stanmore hospital in London. The first was to remove my growth plates (now they can extend the rods non-invasively, meaning this is not so required). The second is to straighten the spine, and screw 2 titanium rods onto it. Leaving me upright and healthier.

As you can imagine I was scared like a politican is of real facts. I’d have to be in hospital for 4 weeks. Spend the 6 week school holidays recovering. Then return to do my GCSE exams.

Imagine the pain. Imagine the potential worse case scenarios. Imagine the test of character.

We had a family holiday with mums side and with friends, to Lanzarotte, before my operation. I wasn’t told the exact date so not to ruin the trip. But it was imminent. I remember my mind racing throughout that holiday.

The first day after the sunshine vacation my dad woke me up. Today’s the day…

It’s all a bit of a blur how I felt. I remember the nurses being very welcoming and friendly. I remember the liquid they gave me to sleep better. I remember feeling drunk on it and flirting with the very pretty nurse looking after me. Damn those 15 year old hormones.

My first operation took 6 hours. They deflated my lung, and took each growth plate out. One by one. I woke up to a nurse who sounded like my Nanna who’d passed away years before. Her strong northern Irish accent asked me to breathe more as my SAT’s (oxygen saturation levels) were low. She soothed me a lot.

Then as I came around more I was sick. I didn’t stop vomiting for days. Keeping food and liquids down was impossible. So I went on a drip. The week inbetween the 2 operations are totally blank. However I do remember some visitors, and the kind Stanmore staff.

I was then put out for the second surgery with a different anaesthetic. Evidently the first didn’t agree with me. This one took 8 hours. It’s hard to imagine what my family went through waiting.

This isn’t my xray, but it looks the same

Then the next day I awoke to a weird sensation in my throat. The nurses explained I had a ventilator down my trachea. I had a pain in my back (duh!), but it was actually just from pressure. It was scary not being able to articulate this.

Luckily my aunty was there with my mum. Her son, and my close cousin, is deaf since birth. I therefore knew enough sign language to spell my needs on her hand. Being Davids mum and a BSL interpreter Julie could understand me 🙂

The Recovery Process

Day by day I grew stronger. The tube was removed in a day or so. The sickness from before had gone. Back on the main adult ward I had some toilet issues. But I’ll spare you the story with the French lesson. Eventually I was wanting ice cream smuggled in and this time flirting with the hot Essex girl opposite. She was far more my age.

The first time I sat up was weird. After 3 weeks on my back. I was suddenly taller and straighter. And ridiculously dizzy!

Back home I was full of summer frustration. It was so hot. I wanted to get out of bed for longer. But pain and fatigue were my enemy. I beat them in the end. Of course.

For about a year I struggled with weight loss and anxiety spells. I went down to 4 1/2 stone. Every time I went to social events I felt like I’d pass out as my heart palpitated. At school I’d almost fall asleep in class.

It was horrible.

It was also the best thing ever. Once the pain, fatigue, weight loss, and dizziness stopped. My sitting position was more comfortable. My breathing was far stronger. My cough improved. I never looked back.

As much as I wouldn’t wish this on anyone including my worst enemy. It was a fundamentally important procedure for my long term health and wellbeing.

It’s a testament to the physios, OT’s, doctors, nurses and surgeons who made this happen. I don’t think I ever said this before, but thank you.

So as much as I repel those who want to cure me (I’m happy with all my ways). And as much as I work to breakdown the societal barriers that disable me. I’m forever grateful of this #HospitalHelpingHand.


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