Somehow this rebel girl turned career art girl turned out to be a stay-at-home mum with Secondary Progressive Multiple Sclerosis (SPMS) and two young kids. This wasn’t the dream, it would be fair to say. So how did I end up in Tel Aviv, about to undergo Hematopoietic Stem Cell Transplantation (HSCT), a potentially risky treatment, to try to beat it?
My back story is pretty simple. I had Oscar on September 21, 2006. It was a pretty uneventful birth, apart from the extraordinary baby boy. I hopped up afterwards and walked to the car. The next day I went for another short walk – I had a few stitches so I wasn’t rushing around. The day after that I couldn’t walk at all. Doctor number one told me, “it’s just a reaction to the epidural.” Only it really wasn’t, and did I mention I walked normally for three days after that epidural? Oh that’s right, yeah I did. Fast-forward through 1.5 blissful years and I’m pregnant again with baby number two. By now my Relapsing Remitting Multiple Sclerosis (RRMS) that I don’t know I have is transitioning into SPMS. Not the rarest disease in the world, but you’d think it was by how bloody long it took them to diagnose me. Ira was born in February 2009. I was finally diagnosed in August 2010. My baby was 18 months and I could no longer walk normally for more than 200 meters.
I’d known there was something seriously wrong with me for a couple of years before I was diagnosed, but the 11 doctors I saw all said the same stupid things. “I keep tripping over my right foot.” “You’re pregnant, it will come right.” “Hey, BTW I keep tripping over my right foot.” “You’re a young mum, you must be tired.” “I keep tripping over.” “Ummm… breastfeeding hormones.” “Hey my leg stops working after I’ve been walking for 20 minutes.” “Maybe walk less.” I had hip X-rays and an MRI of my lower spine. I was tapped, prodded, poked and measured. Nope, nothing wrong. I went to healers and doctors, no answers. Finally, my body riddled with symptoms, I went to see my childhood GP. Sitting in her office I burst into tears and said, “No one believes me but I really can’t walk.” Knowing I wasn’t a hypochondriac and that it took a lot to make me cry she told me, “It’s almost my lunchtime, stay and we’ll go for a walk.” 200 meters up the road I had to rest. “Wow,” she said. “You really can’t.”
Next stop was an orthopaedic surgeon. Standing in his office in my underwear after attempting to walk up and down, I listened as he told me that it might be neurological. Right, I thought, then looked at his face and thought ‘yikes what does that mean?’ He wanted me to have a brain and full spine MRI. Ok, I knew this drill: book in, wait a few weeks, have the scan, wait a few more weeks, get results. But this seemed a bit different. He was on the phone himself booking an urgent MRI (yikes what’s happening?$#!%). Your MRI is in 40 minutes on the other side of this private hospital. Good I thought, it will probably take me 40 minutes to walk there. He asked if I had a support person and I remember looking at him blankly. What? I don’t need a support person. I’m a rebel girl.
The main lump of fear I swallowed on this particular day was knowing I had two little kids at home and this man was looking at me like I might have a brain tumour. So I rang home and asked Mum to feed the boys and I remember thinking how amazing it was that my voice didn’t sound small and scared. “I’ve just been a little held up, I’ll probably be another hour or so.” “Everything ok sweetheart?” Yip, I got this. The technicians and nurses are the human face of all these tests and procedures. They reassure you, hold your hand, talk you through it – then it’s over and you go home and do the dishes, read stories and cuddle your kids and wait. ‘If it’s urgent we will call you tonight,’ you are told. Which translates roughly to: if you are dying of a brain tumour we’ll let you know sooner rather than later. I asked the technician in passing “do you think they’ll call tonight?” She shook her head no and that was my only reassurance I didn’t have an inoperable brain tumour.
Little did I realise I was waiting for a voicemail to be left on my work phone. “It’s Dr blah blah, sorry to leave a voicemail but I’m going to Fiji on holiday. I’ve seen your scans, I was right. The areas of demyelination suggest it’s neurological. I have referred you to Dr [Dickhead], you need to ring and make an appointment.” I rang and made an appointment to see the next doctor (who at this point hadn’t earned his pseudonym) and finished the board paper I was writing. Then I typed demyelination into Google and spent my lunch hour reading about MS. With a horrible, sinking feeling I knew that I had SPMS and that my first attack had been in 2006 after Oscar was born. In a daze I walked into my boss’s office, sat down and burst into tears. Everyone at work had been puzzled and stressed about why I couldn’t walk and what was happening, so in a way it was a relief for us all to have an answer. I still remember Gail, an amazing boss and mentor, being puzzled at how it was that I had just found out and that I was at work. I was too embarrassed and feeling too vulnerable to tell her I had just found out from a voicemail and a Google search.
I can’t recall much of the three weeks that followed, but a few things stand out. I was relieved that I wouldn’t die soon and leave my babies. I read Michael J. Fox’ book Always Looking Up. I talked to a friend who played a character with MS on a soap opera – she was the only person I knew that knew a lot about MS. There was also my sister’s friend’s sister. I was at a picnic with her once in Sydney. She was in a wheelchair, she had kids. I remembered her eating French bread, drinking French wine and being glamorous.
Then I met with the stupidest of the stupid doctors in the stupid doctor parade. This was my first encounter with a neurologist, and this time my sister Sue had insisted on attending. By this point rebel girl was a little quieter than normal, so I sat there and let Sue ask most of the questions. Feeling overwhelmed I summoned the courage to ask the toughest question a mother of a 4 year-old and a 1 year-old could have. “Will it affect my life expectancy?” His reply? “Only if you kill yourself.” I can still hear Sue’s sharp intake of breath, still see the narrowing of her eyes. I can’t for the life of me remember what happened next or what she said to him in response, but that doctor has been known ever since as the bloody awful man by my mother and that mother-something-else by Aaron, Sue and I.
So began life as someone diagnosed with SPMS. I had been living with the disease for a couple of years at this point, but now my waking thought became, ‘I’ve got MS, holy shit how did this happen to me?’ Which would be quickly followed by the more standard ‘What shall I feed the kids? Who needs lunch? And when can I fit in folding the washing?’ Over the next year I tried to come to terms with being sick, being disabled and still trying to be an independent working mum, but also learning to accept and ask for help while still having an inner rebel and trying to project a constant MJ Fox positive attitude. Which I faked the majority of the time.
There was a lot of retail therapy as I tried to shop my way out of the horror of MS. I bought many pairs of designer flat shoes and walking sticks and dark pants and baggy jeans. You sort of change your look if you don’t wear heels anymore. My kids’ birthday parties got wildly extravagant. I read Learning to Sit Still, My Life with MS, books on meditation and inspirational stories of overcoming adversity and illnesses. I did yoga, followed MS recovery diets, went on an MS retreat. I meditated, exercised, tried to be zen, tried to be still, I tried to still be fun and I tried to still be myself – not yet realising that I was changing. I worked through all the stages of grief and then did them all over again. I went to physio, osteo, healers, acupuncture; I saw Indian doctors, I swallowed my bodyweight in vitamins. I ate lentils and tofu, gave up meat, coffee, diary, eggs and gluten. I toyed with giving up alcohol, but hey let’s not go crazy – and SPMS marched on. Perhaps my interventions slowed its progress, but every summer my walks along the beach became a little shorter and my daily battle with fatigue grew harder and harder.
There was the fallout. The good friend who told me he couldn’t handle being around sick people, the staff member who didn’t want a sick boss, the people who looked at you like they might cry with the pity of it all. Then my family, my big crazy family. I can remember almost exactly what my mum said: “little one we can do this, we’ll just all soldier on.” If you’re born the baby of a family, especially a big one, you are always the baby even if you’re a tough rebel girl. Sister Sue said, “if there is anyone who can handle this Kate it’s you.” She still reminds me of this when I need to hear it. There was my yoga teacher who said to me once in a private class, “you don’t have to hold it together here.” Little did she know that I really would take her at her word. So the majority of the time I soldiered on and handled it and saved falling apart for 2.30pm on Tuesdays and later on in therapy on Friday mornings.
Then there are all the amazing people that pop out of the woodwork. The school mum who sees you struggling and helps get your kids to school day after day, the best friend who cooks endless dinner parties catering to my extremely extreme dietary requirements. The extended family who bend over backwards to include the boys in fun activities, the childhood friend who takes your kids to the beach when you can’t, the countless friends and guests who graciously host themselves in your house when you can’t get up. The friends who pick you up, drop you off, come to appointments, run errands, fold washing, trick or treat, light fireworks. The countless strangers who have given up their seats or places in queues, rescued Ira from numerous perilous heights in playgrounds, chased courier drivers from mobility parks. One kind stranger, a 50 year-old lawyer, sat on my dirty car in his fancy suit and refused to let it be towed as he could see I had a mobility pass and two carseats. When I finally limped back to the car with two sick kids in tow he took the ticket and paid my fine. I said to the boys on the way home that day, “one day I hope you are as kind and generous as that man.” These random acts of kindness and general kindness and love have made it all so much easier.
I found out about HSCT via an email from my sister-in-law with a link to a 60 Minutes clip. Which I saw in my inbox and couldn’t be bothered to watch. I love my sister-in-law, but when you’re sick people send you any reference to MS that they come across and while it’s amazing to have people think about you, one does get a little sick of having to think about MS. Anyway, for some reason one day a couple of weeks later I watched the clip and there was Kristy Cruise and her story of HSCT in Moscow. I replied to Chloe’s email and said ‘what shall we do next?’ Chloe, being the smart, driven, amazing woman that she is decided to track down Kirsty’s email address and fire some questions at her. Which Kristy answered because she too is a smart, amazing, driven woman, and so the HSCT research began. I read everything I could get my hands on: published papers and medical journals, I followed studies, analysed figures. I joined Facebook groups and followed people’s progress. I spent hours getting my applications together, and applied to every programme I could find. For us money wasn’t the biggest factor, timing was. I have a progressive form of MS and needed treatment as soon as possible. So while I got into other places I chose Israel because I could get in sooner.
Day before leaving | October 14
Everyone is tense. The kids are tense, Aaron and I are tense, and I feel like I have a million things to do. All my friends and neighbours are dropping in to say goodbye and bringing me presents or doing lovely acts of kindness, or texting or emailing their well-wishes. Sue brought over so many movies there is simply no chance of seeing them all, even if I watched them back-to-back for six weeks. I’m not sure how I am feeling about it all. I feel great about the presents and support. I’m not sure about the HSCT, but I’ll turn up. I’ve kind of gone into autopilot and am just really trying to be more hardcore about it and not too whiny.
I almost didn’t do it: one night watching Ira sleep I decided that I wouldn’t. Not in a flippant, it might be hard way but in the selfless mother kind of way. Can I do this? Can I leave them? What if I don’t come home, what then? Luckily I was seeing The Punk Singer the next day and sitting in that movie, being reminded of my love of Kathleen Hanna, my inner rebel girl took hold and I decided that I would go. That I would get HSCT and that I would halt MS and start on the long road to recovery. The what ifs? Turned into what if I don’t? And the friend I was with that day nodded and said, yip do it. So I am.
Kate Paterson is a mother of two from Auckland, New Zealand and is currently undergoing HSCT treatment in Tel Aviv. Follow her journey here.