Ready or not, here I come, you can’t hide
MS finally catches up with me as I receive my diagnosis
… continued from my previous post “Dear Life... ”
It’s 2012. I’m hiding behind the long curtains in our living room, cold cup of tea on the window sill. I oscillate between profound joy and deep ‘parent of a toddler’ exhaustion. I close my eyes for twenty seconds, or if my hiding place is good, a minute of rest. Our beautiful gold-red haired force of nature comes to search for me in our daily game of hide and seek.
“1, 2, 3, 4, 6… Coming, ready or not…”. She’s learning number order.
On doctors orders from 2008, I was getting on with my life. We were getting on with our lives.
We had healed as we took three USA road and rail trips in as many years. Five years after his cancer diagnosis Jase had been given the all clear. We could finally go through the adoption process. Long and arduous, as expected.
But all forgotten when our daughter arrived, in 2012, in a whirlwind of soft pink, fully formed likes and dislikes, a mini-killer sense of humour and a collection of teddies. And we settled into family life, a little unit of three.
But in 2018, I find myself having another conversation about multiple sclerosis.
This time with my GP. My physiotherapist had referred me. The exercise programme for the scuffy walk I’d developed hadn’t had the expected results. I’d already had numerous visits to physiotherapy over the years to investigate back pain and stiffness, none of which resulted in any tangible improvements. This physio felt there was something else going on that was outside her remit as a musculoskeletal practitioner. She thought I should have an MRI. And this made me worried. Through the tiniest of cracks left from 2008, the MS spectre seeped into my mind. Slowly pervading my thoughts. Hadn’t I been spared? Surely if it was MS, I would have had other symptoms? Maybe it was something worse?
My GP was kind. He started piecing things together. The optic neuritis. The unexplained back pain. And latterly, the changes in my walking. I suspected what was on his mind. But when he invited MS to sit with us in his consulting room, I was angry. I didn’t want this.
He asked me to take off my shoes and socks. He examined my feet. A sliver of shiny gold paper had attached itself to the bottom of my right foot.
“Looks like the kind of thing I’m always finding in my house” he said, “you have kids?”
“A daughter. She’s 9”. I gulped down a cry.
As he made the referral to neurology, I asked him, ever so tentatively, what he thought the chances of a positive MS diagnosis was, given my history and symptoms. His answer was 50-50. Sensible.
The wait was going to be a long one. Months and months languishing on an NHS list. Couldn’t anyone see how urgent this was? Lucky enough to have rainy day funds, we paid for a private assessment and MRI so I could be seen sooner.
Jase and I sat with pits in our stomachs in the shiny private hospital. A nice bland waiting room with upholstered chairs, complementary tea and coffee, filtered water and generic landscapes framed in mottled pastels. It offered compensation for our troubles.
The neurologist called us through. He was as tall as a pine. As he towered alongside us on the walk to the consulting room, I felt even tinier than I had when I woke up that morning.
He was a genial host. That pumped me back up a little. We went over my medical history and current problems. I demonstrated my walk.
I think we should have an MRI, he said. Was he coming too? I pictured him fully suited with his long legs and gleaming shoes sticking out of the end of the MRI machine, while I waited for my turn.
He explained it would be a scan of my brain and cervical spine. It would last about an hour and a half. What? That long? But the wait for an MRI in this hospital of dreams was short. And in less than a month I would know whether MS had finally caught up with me.
😱 I was terrified of the MRI. Was it the claustrophobic looking tube? Yes, but for me there was also something about a brain scan that verged on the creepy, and almost grotesque. The uncharted territory inside my head. 🧠
👨⚕️On the day of the MRI, another friendly health professional tended to my fears. I filled out a form confirming various things ruling out the possibility of metal in my body that could interfere with the scan. I was glad I’d never taken up that welding apprenticeship. There was a strange helmet-type contraption to fit around my head. I made my terror plain. He knew I needed reassurance. He showed me how the table that you lie on worked. I could even try it out before committing to the process. I could choose some music to listen to. And there would be a mirror so I could see outside the machine. All this helped. He would be behind the screen taking the images, and I would have an emergency call button if I needed to speak to him. And it would be best if I could keep as still as possible to get optimum results. The optimum result for me being that I didn’t have MS, but I don’t think that’s what he meant. 🆘
💥There were ear plugs. I found out why. An almost unrelenting barrage of clatters, bangs, buzzes, and drills, some seeming to come out of nowhere. Like the noisiest construction project in the tiniest house. But without the tea breaks, or the ability to leave when it all becomes a bit too much. And there was music, filtering in and out. All this, for an hour and a half. My plan to maybe take a nap had been foolish. I tried meditating. Focussing on my breath, the rise and fall of my body on inhale and exhale. And that worked for a while. Until a strange little irrational fear wormed its way into my brain. What if there was a fire? And the MRI technician ran out and left me in there. What if that had actually happened and the flames were lapping at the door as I lay there listening to soft rock? 🎸
🗣“Just one last scan. A shorter one, about 25 minutes”. He ripped up my hot little fantasy. 🚒
And didn’t I have real things to worry about?
I did. Two weeks later I was back with the tall doctor.
I liked my neurologist. Somewhere in the midst of necessary clinical speak, he said ‘shenanigans’. I’m not sure in which part of the medical training it’s advised that using this word might take the edge off the receipt of an MS diagnoisis, and I can’t remember the context in which he used it, but it lightened the tone.
Jase and I sat in silent perverted wonder as images of my freak show brain beamed out of the computer screen. I’m not sure what I’d expected but I was surprised to be confronted by the inside of my head in such a way. As an aside, I wondered whether this was taking marital intimacy to another level.
In a warm pitch, the doctor pointed out lesions, multiple ones, hence the ‘multiple’ in sclerosis, and the confirmation of the diagnosis.
Multiple Sclerosis.
He also said I had almost certainly been living with MS since that case of optic neuritis around ten years before. He would have handled the whole thing differently. I would have had an MRI right away, more than likely a diagnosis and possibly an offer of medication. In the time it had taken to get here, my diagnosis was of secondary progressive MS, from the get-go. That’s the one people tend to work towards. I would be unlikely to have relapses, but I would not have periods of remission either. I would likely notice symptoms worsening over time, probably very slowly. There was no clear prognosis, and for this type of MS, no treatment.**
‘Everyday’ me would have had questions. A list. No one gets out alive until the cross-examination is one hundred per cent complete. But punch drunk with the diagnosis, I sat in near silence. Just listening. And the ten year delay would be a mindfuck for another day.
As we left the hospital building I felt a new chapter open through sliding glass doors. We walked across the car park. Leaves were turning yellow and orange in keen October sunlight. The air was sharp, the afternoon sky brilliant blue.
“Look, I can still walk… not bad eh…” I said to Jase, in a desperate attempt to wring something positive from this dreaded outcome.
“You’re going to be ok” he said. Strong. But equally lost.
We didn’t go straight home. One of our favourite parks was nearby. There were worried people to call. Messages to send. It seemed easier to give bad news in the open air.
Our daughter was safe in after school club. We drove to pick her up. She came out to greet us. Her hair the shades of those leaves, I noticed. She was getting older. Her cute red cardigan no longer mottled with the day’s lunch.
“So what did the doctor say then?” We locked eyes and she looked to me for answers.
We were going to be ok.
Footnotes
* I love Elizabeth Jameson’s work and “Emerging” felt like the perfect piece to accompany this post. Elizabeth also lives with MS, and this is image comes from one of her brain scans. She takes the grey, unsettling clinical images from her MRIs and creates beautiful, colourful and thought-provoking pieces of art “to spark curiosity and conversation around what it means to live with an imperfect brain and body.” “Emerging shows both the interior and the exterior of the brain. The bright white line of the skull in between acts as the divide between mankind and the universe beyond.” http://www.jamesonfineart.com
** At the time of my diagnosis there was no licensed disease modifying therapy for secondary progressive MS. Since then Siponimod has become available on the NHS for ‘active’ SPMS.
Thank you for reading
Jane 💛
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Time now to enjoy the break !