17 Letters And A Heart Full Of Hope
Twelve years ago I got a nasty diagnosis delivered in a letter. The irony was that it was the same diagnosis my mum had been given at exactly the same age as me. So, in moments like these, what’s left? Hope and a great big dose of belly shaking humour.
THE diagnosis came in a letter. Not a phone call from my GP or the hospital. A LETTER! There it was written in black and white. Two words, 17 letters. How could they be so devastating?
I read them over and over and over. I even read them out loud, hoping they’d dissolve perhaps. Each time hoping against hope. Can’t be. No, not me. I felt the lump in my throat tighten.
HOW COULD THIS BE? The rage began to bubble. I feel fine now, I protested. No loss of sensation in my feet, my legs, my arms, my pelvis, no incontinence, no dizzy spells. I am good. I am more like the old me. Hell, I’ve even started taking the dogs out on long walks again. I’m WALKING!
MRIs — two of them. I ‘blame’ them. It was ‘their fault’. It wasn’t, of course, but that realisation was to come later. In this moment I needed a patsy and the scans were mine. Damn that myelin sheath damage even if it did leave ‘pretty patterns’. Those scans were determined to play tricks. The first one took great pleasure in lulling me into a false sense of security as it came back clear as a daisy. Must have had a pact with the myelin sheath avengers to stay out of sight and cover me with hope.
So much hope that when I went into the ‘magic’ tunnel for the second time I was convinced all was well. WRONG! When the scan came back weeks later it was like a ninja had been ‘partying’ in my spinal cord and my brain and made a right mess. So much mess it was going to take more than a bucket and a squirt of disinfectant to clean things up… to ‘clean’ ME up.
So, I suppose it’s no surprise that when the letter came through the front door, my hope went scuttling out the back door.
Those two bloody words were already very familiar to me. They were old adversaries in my home growing up. My mum had battled them too.
What was life going to be like post ‘diagnosis’? Not a clue.
One thing I did know though — I DO know — is that those two bloody words were not and are not going to get the better of me. They can do one!
According to Wiki:
Multiple sclerosis (MS) is a demyelinating disease in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This damage disrupts the ability of parts of the nervous system to communicate, resulting in a range of signs and symptoms, including physical, mental, and sometimes psychiatric problems. Specific symptoms can include double vision, blindness in one eye, muscle weakness, trouble with sensation, or trouble with coordination. MS takes several forms, with new symptoms either occurring in isolated attacks (relapsing forms) or building up over time (progressive forms). Between attacks, symptoms may disappear completely; however, permanent neurological problems often remain, especially as the disease advances.
While the cause is not clear, the underlying mechanism is thought to be either destruction by the immune system or failure of the myelin-producing cells. Proposed causes for this include genetics and environmental factors such as being triggered by a viral infection. MS is usually diagnosed based on the presenting signs and symptoms and the results of supporting medical tests.
There is no known cure for multiple sclerosis.
Encouraging eh? #Hintofsarcasm
I was 38 when the symptoms reared their ugly head. I remember that evening well.
Visiting my mum in Kent. The mum with MS who had made the brave decision to try living on her own in the family home after my dad’s unexpected death.
Being possessed of that incredible ‘Dunkirk spirit’ that is part of the make-up of so many from our parents’ and grandparents’ generations, mum had declined the opportunity to move in with her children and instead was living alone with regular carers popping in night and day in between our own family visits.
On that evening, it had got to that horrible time. The part I always dreaded because it almost always ended in my tears. Not in front of her. No, the tears would usually come just as I got on the A2 and last until I crossed through the tunnel and into Essex.
I dreaded that time because it meant saying goodnight, leaving my mum alone in the house until the carers came at 10pm. I’d stay as late as I could and on occasions would manage to have a quick chat with the carers as they arrived to help mum to bed. That bit broke my heart too. Mum was never an early bird, but always a night one. My sister had had to push so hard to get her the last call on the rota otherwise she could have ended up in bed before 8pm. And that would have been even more cruel.
But staying ’til 10pm with a 2 hour plus journey home, especially on a ‘school night’ was always pushing it when it came to remaining alert. Sometimes I’d have to ring home to say I was stopping for a caffeine fix to avoid falling asleep at the wheel.
Anyway, it was that time. Collecting my things together I paid a quick trip to the loo. My stomach was not feeling great and suddenly what started off as a quick wee turned into something else.
Without being too graphic, I tried to push but I felt nothing and I mean NOTHING. A strange buzzing, fizzing, numbing feeling travelled from my bottom down the length of my left leg. It was odd. A rise of panic, then back to practical mode.
‘Sorting myself out’, I dismissed what had happened, went back to my mum, said my goodnights, then called them out again as I put the key in the key safe and headed for my car.
To this day I cannot tell you how I got home safely. All I know is that I did, just over two hours after I left my Kent childhood behind.
As I put the key in the door of my Lincolnshire home, I had numbness all the way down my left leg and to the knee on my right leg. Things were not right. I went to bed sick with worry.
The next day, things only got worse. My legs and feet were numb and I was doubly incontinent. I had no feeling ‘down there’ and by early afternoon had suffered the humiliation of several accidents. I was scared. This pattern was ringing huge bells for me. Taking me back to a childhood with a disabled mum, when accidents of all kinds were commonplace.
Fast forward a little while and there I was, sitting on a hospital bed. My wife-to-be beside me. A doctor mumbled something about tests but, to be honest, it wasn’t’ really going in. At that point I’m guessing I was in shock.
However, my good manners kicked in. So, I smiled and said ‘thank you” and waited for what was to come next. Given some of my symptoms, those tests turned out to be far from pleasant. When I was told to put my underwear back on, I was embarrassed and tearful.
We went home. Me numb — in so many ways, not just in a physical sense. Scenes from my childhood crowded in. Memories of Mum falling in the bathroom again or not quite making it to the smallest room in time.
There were and are plenty of positive memories too. A testament to my mum’s courage and determination.
My wonderful baking loving mum, busy in the kitchen, creating sweet treats for us to the sounds of The Archers and Radio 4, while she battled her disability with humour and a smile. Often she’d get cakes out of the oven and ‘forget’ to use an oven glove and then joke that she had heatproof hands.
My mum. Inspirational, yet it would be a while before I’d appreciate just how amazing she was. When you’re a teenager, even mums with disabilities are still ‘just’ mums. A fiery, teenage Asha was to turn into a fiery adult. Not the most understanding.
Fast forward to the day after my hospital visit. I’d spent the night in a mixed ward — the only woman — having to suffer the humiliation of letting the nurses know every time I needed the loo so they could scan my bladder to make sure it was emptying properly. My only privacy was the curtain drawn around my bed.
After an overnight stay, home again and questions, so many questions running around in my drowsy head. Co-codamol and I are not the best bedfellows.
Could I be as positive and brave as my mum if I needed to be? I doubted it.
Becoming a Home Hermit
By this time my mum was elderly. I made the decision there and then to not tell her about my diagnosis. For what purpose? She had her own battles to fight. She gave so much to me: her support, her humour, her love….why add worry and more into the mix? I would cross that bridge if it came to it, but it was never needed. My mum passed away a few years later. A battler to the end. A ‘Woman Of Courage’ as I referred to her in my poem for her funeral.
In the weeks following my hospital visit, I became a hermit. I also became quite an expert at getting upstairs to the loo, on my backside, at record breaking speeds.
The independent me, the me that had passed her driving test first time at the age of 19, was kicking and screaming (even with legs misbehaving at the time). No driving. No popping to the shops to pick up a paper and a pint of milk, for fear of falling or having an accident and — shame of all shame — having to ask for help.
The internet was my saviour and my biggest adversary at the same time. On the good side, it kept me in touch with people. To the outside world, this was the same Asha. Only a few people knew what was going on for me at that time. I could still use my hands to type messages. But those hands could also search for answers and, in doing so, create another load of questions…
Desperate to know even more about this horrendous condition that has been running rings around the medical community for years, I did the classic Google search.
Put those 17 letters into the search bar and just about anything and everything comes at you in glorious technicolour. POW! That hurt. I know, I thought, I’ll join a support group. That’ll help.
And this, dear reader — at the risk of offending fellow ‘sufferers’ — is where it all went wrong for me. I read page, after page, after page of people describing, in minute detail, their symptoms, their challenges — their pain, their anger, their frustration pouring out at every click of the mouse.
I totally and utterly respect people’s choice to be part of these online communities and I acknowledge their importance for many.
Good To Talk?
However, for me, it was not to be. I found my online experience nothing but depressing and demoralising. When the main topic of conversation is the condition then, for me, it’s time to move on.
This experience brought back memories of a chat with my mum, many years before, when she and my dad had been discussing going along to a social organised by the local MS group.
She didn’t want to go, for the same reason that was to be cited by me many years later.
I know it’s good to talk, to share with others going through similar experiences. I get it. But my worry is that, like most things, there needs to be balance. For me, too much immersion in the world of the MS ‘sufferer’, surrounded by other MS ‘sufferers’, can hold you in the energy of the condition and not allow you to move on and through to a more positive mindset and life experience. Suddenly, I truly understood my mum’s wish to not want to sit around with lots of people in wheelchairs for hours, dissecting every symptom in minute detail.
I also know, compared to many, I have had relatively mild symptoms. Today I’m walking, talking and feeling good. Would I still be saying this if I was wheelchair-bound? In all honesty, I don’t know and I plan to never know.
Am I in denial? Perhaps, although I don’t think so.
I grew up with a mum with this awful disease and know how things can turn out. A mum who went from stumbling, falling over and walking with sticks to a mum in a wheelchair. A mum who was often covered in bruises from her falls. A mum who spent years in pain and discomfort, but still managed a smile and to see the good in the world. The very best kind of role model. My eyes fill with tears at this point and I feel proud to have known her, even if we didn’t see eye-to-eye at times. Two fiery souls cut from the same cloth? On reflection, yes.
It’s great to talk, but not to the point where it keeps you down in the depths of depression, where the disease is winning the fight, not you. Positive, supportive, empowering talk — that’s the way for me.
To help me ‘walk my talk’ with this I am very blessed. I am surrounded by inspirational, motivational people who are there to keep me positive and give me a ‘leg up’ on the not-so-good days.
Sadness, Nervousness and Irritation
Now, time to return to my back story. Fast forward several weeks. I am invited to another ‘local’ hospital to meet a consultant for the first time since my ‘episode’. I use the term ‘local’ loosely. The hospital is more than 50 miles from my home. Thank goodness for my chauffeuse wife. To be fair to the medical community, I understand that 12 years later there is work to provide more localised services to cut the travel time, distance and expense so that’s an improvement.
We arrive at said hospital and head for the right department. As I walk through the door, I am greeted by a packed waiting room, downturned faces and a weird atmosphere — a mix of sadness, nervousness and irritation, cut with a dose of anger. Was it ‘in the air’ or was it my state at the time? Whatever the case, not exactly the greatest of environments to spend time in.
I smile at the receptionist and she books me in. After a quick scan of the room, we find two free chairs and take a seat. I feel like 100 pairs of eyes are on me and I shrink back into the chair, doing my best chameleon move so I can blend into the background. A minute later and it seems to have worked. The heavy silence is replaced with the odd snippet of conversation and loud explanations for a new arrival at the ‘check-in desk’.
I wait. I glance at my phone, but I can’t focus. Don’t want to focus. I’ve done too much of that in the last few weeks. When your mobility is compromised and you’ve run out of mindless TV series and movies to take your mind off things, you can’t help but focus on the future — and that’s a scary prospect in this moment. It’s not like I knit, crochet or cross stitch. Never understood any of that ‘stuff’. My mum knitted — and taught me to knit — but I never understood the attraction and never got past the knitting a hot water bottle cover stage.
Looking around again, I long to be able to get in my car and drive far away. But I can’t… and that’s a killer. I’ve been driving for years. I love driving and I am so not a good passenger. I can feel car sick on a 15 minute journey if the conditions are ‘right’, ie oppressive atmosphere, rain on its way, too hot, too humid, a driver who ‘drives on their breaks’ and takes a roundabout like a circuit at Brands Hatch.
I read the same signs on the wall for the umpteenth time. Oooh goodie, more support groups. I go into sarcastic bitch mode and sigh inwardly at my shallowness. My cornered rat syndrome is on display and it’s not nice. A sign of my high stress levels.
Behind The Door
The time ticks on. My wife-to-be, my wonderful, beautiful, supportive, inspiring, partner, looks up from her phone and smiles. I smile back and blink away the tears that want to come again. Please not now, I’ve spent the last few weeks doing this and it wreaks havoc with my make-up!
Just in time, a man, probably in his late 30s, appears from behind a door along the corridor. He looks serious as he calls my name and averts his gaze as I look towards him. Funny that. He looks almost apologetic for being there, for being the bearer of bad news, perhaps? Or is he just a negative Nelly? You could hardly blame him if he was. He’s got a day full of difficult conversations ahead.
Taking a deep breath, I stand and walk slowly towards him (striding out is not an option at this stage), flashing him a weak smile. He looks over my head (not difficult when you’re facing a vertically challenged munchkin like me) and gestures to the door of his room.
What follows next is the most bizarre experience to date since my MS ‘adventure’.
Cue general chat; I tell him what’s been going on — the lack of mobility, the ‘fizzing’ legs and feet, the incontinence, my mum’s back story, etc, etc, etc….
He nods in all the ‘right’ places, still never making eye contact with me. He makes eye contact with my ‘wife-to-be’ or should I say ‘carer’? #Anotherhintofsarcasm. Funny that. Actually, it’s not funny at all. It’s insulting and confusing when you’re trying to get a feel for what’s coming next. He jots down notes and puts down the pen, looking over my shoulder for some inexplicable reason. No, nobody there.
Then he reaches into his drawer for the ‘pins’. The sharp things he runs across my feet, down my legs to test my responses.
The Ministry of Silly Walks
I’m then asked to stand up and go back out into the corridor. I’m tasked with walking in a ‘straight’ line down the hall. Not embarrassing at all really. I feel myself flushing up and am glad when I can scuttle back into his ‘office’.
After sitting, the man across the desk from me goes into full scale serious consultant mode. He tells me about the different types of MS, about the significance of the next 10 years and how the condition may develop and then, just to put icing on the cake, he talks to me about the real probability that I could end up in a wheelchair. Just to make this absolutely clear, he repeats this fact several times over. Lovely.
I feel the tears coming again and bite my bottom lip. I can’t look at my wife-to-be now. I don’t want to see my pain reflected in her eyes. Too much. I look away and sob inwardly.
The air is thick with sadness, frustration, anger — anger at this bloody awful life-sucking condition, anger at the consultant for how he delivered the message and ‘robbed’ me of my future happiness — our future happiness — with his trite phrases and box ticking approach to his job. Hell, if he was in the land of corporate, at the very least he’d be hauled over the coals and fast-tracked for customer service training, wouldn’t he? He should be. Where’s his compassion? Where’s his sensitivity?
And then, as hope has flown the room, a wonderful thing happens. Going into full weird and witchy mode now, I firmly believe that often when the shit totally hits the fan, when hope has gone walkabout, the ‘powers that be’, the spirits, circumstances, whatever you want to call it, drop something in to help you bounce back. And often, it’s humour that saves the day, at least it was for my mum, and so it is for me.
When Humour Gives Hope A Helping Hand
My funny hope-saving moment goes something like this. The consultant, for the first time, looks me in the eye and asks: “I want you to do this please”. He takes his index finger and, almost reverently, touches the tip of his nose. I observe and nod, trying to match his reverence.
And then I do it. In a move my wonderfully witty, inspiring, brave mum would have been proud of, I make a complete twat of myself. I hear my dad’s words ringing in my ears — the words he used when he teased my mum about some of the strange things she got up to.
Said with love: “You silly old crow”.
I take MY index finger, look the consultant dead in the eye and then touch my finger to HIS nose!
What’s so funny?
The look on my wife-to-be’s face is enough to know there’s something wrong or, maybe, it was her very loud guffaw! I realise my mistake, whip my finger away quickly and bow my head in embarrassment. I try to stifle the giggle rising up from my gut but it’s impossible. Nearly crying with laughter, I apologise.
The consultant says NOTHING.
Instead, he makes a few notes (I’d love to see how he described what just happened). His silence only fuels the merriment further. Sensing things could really get out of hand, he closes my file and I am free to go.
The pair of us leave the room and walk down the corridor, our giggles echoing around the space and spilling out into the waiting room.
Seeing Eye To Eye
As we pass by the place where our hospital trip began, I make eye contact with people waiting their turn. I smile and get a faint smile in return. The atmosphere, maybe it was simply my mood, has lifted. Like a beautiful breeze of positivity, sprinkled with Tinkerbell magic, has cleared the way for the good stuff.
In this moment, I’m very aware that Hope is on my shoulder. She’s always there. Sometimes she may go walkabout, even spend some time on a sabbatical, but she comes back if I open my eyes and am prepared to look for her. She almost always has Laughter in tow and what a fine fellow he is.
Those 17 letters they can sit there looking ‘fancy’, but there’s no chance of them getting comfy. However much they try to draw me in with their negative outlook, their heavy phrases and air of doom and gloom, they’re not welcome here.
No more letters.
No more worrying about the future.
Just love, life and laughter to be enjoyed.
Hope never dies. She just keeps giving.
So be sure to always leave a space for her.
Asha Clearwater is an NCTJ (National Council for the Training of Journalists) qualified journalist who’s been a news reporter, features editor and arts editor, as well as editor of several national business magazines.
Today, through her business Turquoise Tiger, she coaches SMEs on the art of great storytelling to promote their products and services.
Asha occasionally freelances as a writer for national magazines and is even behind some of the information boards you’ll find strolling through Woodland Trust Forests.