MND monster not invited!
MND monster not invited!
Positioned front and centre, I lead the way. Numerous eyes on me, I take a deep breath, hold my head high and focus ahead. Most people notice me, some take a quick look while others take the time to stop and examine me from head to toe. I can turn heads, make jaws drop and cause children to run away in fear. I’ve had tourists gather beside me and a family follow me around, all for a better gawk. A trip out and about is never boring with me and my wheelchair!
A very dear friend of mine asked me to write about being in a wheelchair. Her beautiful young son uses one to get around and she wanted to know what it felt like. My handsome buddy and I experience life from a different position and I was delighted to share my perspective with his mum. My initial enthusiasm to write the blog quickly dissipated though: I began to realise that my vanity and insecurities were major factors in how I felt being in a wheelchair. The biggest issue for me is people constantly staring. I just can’t seem to get over it, it really, really irks me!
Some of you might think I am being ridiculous: “Who cares what others think?” “Sure, it’s natural for people to stare.” “Just ignore them.” – I’ve heard it all, believe me…. A while back, when my son was six, I remember him asking me; “Why are all the people looking at us?” Heartbreaking that he noticed the unwelcome attention. But if even a young child notices it, then it’s not just me being paranoid!
Slightly ashamed that I was letting my vanity overshadow my thoughts, I contacted my friend to explain my writing block. She immediately responded with a long list of her experiences of the starers too. No surprise that our stories were very much alike. And we both have similar defence strategies; stare back with ferocious intent. My friend has the added advantage of being able to vocalise her retorts. My failed muscles on my face and in my mouth preclude me from reacting like I would really like to.
Now that I’ve got that off my chest(!) here are some tips on how to handle an encounter with another ‘human’ in a wheelchair. These are all from personal experience:
Good manners and common sense, it works wonders and can help us avoid offending others. Four years ago I’d never have given a second thought to what it felt like to be in a wheelchair. I’ve been in a chair a relatively short time so I have enormous respect for those who have been in one all their lives. I have a spare wheelchair if you would like to see what it feels like 😉
Funny tee shirt available on Zazzle.com
“Do you miss driving?” my friend asked me recently. She was unable to drive for a few months and was frustrated at her lack of independence. I asked myself the question again, I was surprised at my lack of an immediate response. Do I miss driving…? Suddenly I was aware that I had not answered her and she was still looking at me, waiting for my answer. I reluctantly nodded “yes” to escape my muddled thoughts.
Later that night, while lying in bed unravelling the day, I found myself stuck on the question again – do I miss driving? I was perplexed at my inability to answer the question. Yes, obviously I missed driving but there were so many other losses I mourned since then; driving paled in comparison.
Nothing happens overnight with my MND monster. One day you begin to notice a mundane task starts challenging you. Ignoring it doesn’t help so you start overanalysing it, attempting to understand what’s happening to you. Before you realise it, your body has compensated by adapting a less fluid or clumsy motion to work around the failed muscle. That was how my body struggled to cope in the opening scenes of my MND nightmare.
By the time I could no longer drive, I knew the routine of a failing muscle too well. My car was adapted so I could drive entirely with my hands. Fantastic, until my hands began to fall apart right in front of me. My way of dealing with my losses took a recognised pattern. Shock, fear – tears. Realisation – more tears. Admittance to others – floods of tears. When the muscle finally relinquishes – uncontrollable tears. Through the torrential downpouring of tears, I somehow find the strength to pick myself up and move on. I have to, every body is willing me on from the sidelines.
Yes, not driving anymore was a huge loss, now I depend on others to drive me – but at the end of the day I am still getting around. I look down at my lifeless, misshapen, swollen hands, although still part of me they are useless now. Made redundant by disease. I desperately miss how my hands engaged with life. It’s the little things that I miss the most; random things, things my hands used to do.
I miss having a cup of tea on a cold day, wrapping my hands around the cup, soaking up the heat.
I miss rummaging through “that” drawer we all have, finding something you forgot you had. Rejoicing in the discovery.
I miss holding a pen and writing, especially birthday cards, it is just not the same when your mammy writes your husband’s birthday card.
Scratching an itch. Oh God, I miss it so much.
I even miss petting the cat and dog.
Above all, I miss skin contact, making physical contact with others. Touching, feeling and engaging with the world surrounding me.
I miss picking up my son and holding him tight against me. Feeling the soft skin on his back, caressing it to remind him of my unconditional love.
I miss holding my husband’s hand, how our fingers interlocked, tight and inseparable. Stronger together.
I miss giving and receiving hugs. Like a firm hand shake, a tight hug is a good sign, the feeling of hands across my back, full of good vibes.
As my eyes feel heavy and my body succumbs to sleep…I know tomorrow will awaken a plethora of new losses to lament.
Despite the presence of the MND monster, our seven year old golden haired boy continues to make us smile every day. For almost half of his life, all he has known is the diseased me. He can barely remember when I walked unaided and spoke with an unslurred voice. Happy ever after was stolen from our sweet innocent boy.
He is a good child, kind, considerate and full of fun. Our greatest worry in the early days was the negative affect MND would have on his life. Going through an unpredictible period in life stirs up terrifying emotions. It is hard to prepare for the unknown. There was very little advice forthcoming on how to support a child when a terminal diagnosis is dumped on a family. Finally the voice of reason and experience invited me into her office one Autumn morning: Dolores, the owner of the family-run creche he still attends today, took me in, comforted me and gave me invaluable advice on how to talk to him. She suggested we explain in simple language, a little bit of information at a time and let him digest that. When he needs to know more, he will come back with new questions. This allows us to support him emotionally and gauge his thoughts and concerns. Many times it is his innocent and simplistic approach to my condition that teaches us all how to cope.
Children are incredibly resilient but need ongoing love and support. Our family, friends and community have put a protective seal around him. His school and creche instinctively put this in place. Everyone helps in whatever way they can, always looking out for him. He is an open and chatty child so it’s easy to spot if something is bothering him.
There is a constant stream of medical equipment coming into our home to aid my ailing condition. Every piece is fascinating to a child and requires a thorough investigation – box and all! The most exciting arrival was the full body hoist with large sling. He brought the hoist in to the living room, climbed into the sling with his cat, then raised the hoist to its maximum height of nearly six foot and watched TV – as you do! An electric wheelchair to a seven year old screams “fun, fun, fun!”. When I am not in the chair, he drives it around the house with such precision, you have to admire his skill.
He loves the carers and keeps them motivated by smacking their backsides and tickling them. He adores being in the centre of all the action – he puts on his medical gloves and insists on helping out with the night time routine. His favourite job is rubbing copious amounts of cream on my hands and feet. Once he is in the room keeping us entertained, he is of course dodging his bed time. When they’ve finished he likes to walk the girls out to their car, give them a kiss and hug good night. They have to drive away and beep their horn before he goes back inside.
In his mind the carers are there for his benefit too – well why not, if they look after me, why not look after him too?! On one occasion he asked the girls to give him a shower just like mine. So he got my shower wheelchair, stripped off, popped on my shower cap and shouted out, “I’m ready!”. He was treated like a prince – powdered and puffed from head to toe. He was chuffed with himself, getting treated just like his mum!
We don’t lock doors and hide things from him, that instills fear and exclusion. He is allowed come into the room when I am getting ready but does understand I need privacy occasionally. This took a little fine tuning in the early days. One Saturday morning, a couple of years ago, he was excited his friend was coming over. When his pal arrived he couldn’t wait to tell me so he brought him in to say hello. The only problem was, I was in the shower… There were screams everywhere as my carers jumped in front of me to protect my modesty. The boys, bemused by the commotion, shrugged their shoulders and walked out. Fortunately they were too young to understand what they had done.
Recently, I had to spend time in hospital for the first time since having MND and we were all a bit anxious about it. The night before I was admitted, my sweet boy presented me with ten of his ‘precious crystals’, he told me they would help me feel safe and protected. How could I be scared now, he was taking care of both of us?
We try to make an abnormal situation as normal as possible, it’s the only life he knows. Providing him with a loving and happy home, we hope for the best. One thing is for sure – he is a very special boy.
On the surface, I try to keep my emotions in check, maybe even slightly suppressed, well, most of the time….. I have always been a glass half full kinda’ gal; the default emotions are set to positive. I guess most of this is down to coming from ‘strong stock’, but I think a bit of it comes down to brain training too. I made a decision shortly after my diagnosis of MND/ALS: It was either sink or swim, I opted for the latter. What makes this possible are the boulders of support, propping me up from every angle: Physically, mentally and emotionally. I was not only born from ‘strong stock’, I married into it too! Fortunately I am not alone in this nightmare.
But under this veil of so-called strength there lies a chasm of sadness, fear, grief, heartache, loss, frustration, anger… It only takes a scratch on the surface for the whole veil of strength to come crashing down, releasing all the negative emotions. Sometimes I think to myself, “Fuck!”, how have I managed to get this far, living with MND? The answer is that I take one day at a time. This is how I cope.
I avoid my reflection: I am hiding, not wanting to recognise myself in a severely disabled state. If I close my eyes and concentrate on just my breathing I still remember the old me. My favourite escape is when lying in bed, in the early morning, just when the dawn chorus is warming up and the early light throws a soft glow at the top of the curtains. I am in a semi conscious state of slumber, not knowing what’s real and what’s not; this is the sacred time I get to escape from MND. I start planning something to do that day; a walk on the beach – yes definitely, the dog hasn’t been out in a few days and my son loves beach-combing. Maybe we could eat out tonight…Yes, good idea. Now, where to go?… As my brain starts to awaken, my thoughts go in a different direction. I stop them going there. No, nothing is wrong, it was all a bad dream. I try to move my arms; I am fully awake now, in my living nightmare. My escape was brief.
MND has been the greatest challenge life has thrown at me, my husband and my family. It has changed everything. Despite this, we keep going, life still goes on. The human spirit is incredibly strong. As someone wise once said: “You don’t realise how strong you are, until being strong is the only option you have.” Fuck you, MND – I will live to fight another day!
On the 23rd August 2012 my life changed forever: I was diagnosed with Motor Neurone Disease [MND/ALS]. There it was, a death sentence; my death sentence. MND took ownership of me that day. It wasn’t only me that was dealt a blow that fateful day. My husband and son lost the promise of a happy future, my parents and sisters lost a cornerstone of the past. I will never forget that drive home from the hospital, the eerie presence of bad news hung over us. My husband turned to me and asked, “do you want to be with your family?”. I nodded yes. We drove up to my parents’ house. My mother was carrying clothes out to the line. She didn’t look over to smile and wave like she usually would. If we had beeped and waved over, that was a signal that everything was ok, but we didn’t. She kept her head down, avoiding the inevitable bad news, clinging on to normality for just a moment more. We met my dad in the kitchen, he had a look on his face that I didn’t recognize, he was studying my demeanour for an indication of the verdict. I remember sobbing in his arms – my dad could fix anything but we all knew I was diagnosed beyond repair.
To understand the medical effects of MND on the body, that’s easily found online. But I want you to understand more than that, I want to tell you how it affects me, without the medical jargon. MND is relentless – once it arrives it is with you forever and no matter how good a fight you put up MND always wins. For me, its arrival was subtle but within months it was in plain sight. Chipping away, slow and steady, the MND monster unleashed inside me, free to destroy everything.
It started its initial destruction in my legs and when they could no longer hold me up it moved onto my hands and arms. I was able to study the muscle wasting closer this round, watching my hands slowly lose shape. Not satisfied with destroying my limbs, the monster, as subtle and sneaky as ever, went for the big one, my speech, my voice; the essence of me.
Motor Neurone Disease is known as the 1,000 day disease because most patients die within this timeframe. I’m approximately 1,300 days living with it and although I am effectively paralysed from the shoulders down, I still feel I’ve got some fight left in me yet!
I have decided to start blogging for a couple of reasons. Many people are curious about how I cope, what I do with my day and what it’s like to live as a disabled person. It’s not all doom and gloom, although it’s not a bed of roses either. I guess I want people to learn that despite having MND/ALS, I still get joy and meaning out of life.
I hate, hate, hate pity. Got that? So this is not a vehicle for a ‘pity party’, ok?! I envisage this blog to be a honest and wry insight into a world from the perspective of a recently disabled person. I never had any friends or family with a physical disability, so I had really never thought about it before. I now experience life from a completely different angle and, boy oh boy, I have learnt so much about people – good and bad. This is what I am most excited about sharing with you and I promise to give you a few laughs along the way.