I have to admit that the thought of beginning a regular blog about my life as a disabled woman feels a bit scary, a bit like inviting over the new neighbours in the hope that they’ll not only accept me, but will also be able to ignore the social cobwebs. My social life over the last nine years seems to have existed mainly around hospital wards, outpatient departments, and hydrotherapy sessions, and my most enduring relationships with a string of different specialists! As any survivor of a spinal cord injury will tell you, it’s never just a ‘broken back’ thing, it’s also a bladder and bowel thing, and a pain management thing, interspersed between daily physiotherapy routines in an attempt to reboot damaged nerves. Having been through seven major spinal surgeries, one fancy electric wheelchair (thanks to the generosity of the Mobility Trust) and the on-going dedication of a Canine Partner, I’m finally at a place in my life where I can start looking ahead and that’s the journey I want to share with you all. Am I nervous? Am I heck! My off beat humour may has got me though many tricky manoeuvres in the past, but it remains to be seen if it will work for you too!
For the majority of the last nine years, my life has been essentially home based, as basic tasks proved time consuming and tiring to master alongside regular spinal surgeries and systemic management systems. Without my canine partner Tally I would never have got as far as I have today. I can still remember exactly where I was and what I was doing when my mum passed me that article in the British Medical journal about canine partners. A doctor, a keen skier and newly diagnosed paraplegic, had been frustrated by the limits of an overburdened NHS and so turned to the charity Canine Partners. I remember that moment so well because I actually laughed mockingly at my mum. How on earth could a dog possibly improve my rotten life? I’d half sneered as I glanced angrily down at the article (I didn’t cope well in those early days!). Yet from that moment on, the rusty cogs of my independence began to turn! Tally came into my life eighteen months later and was to become my personal carer, motivator and physiotherapist during some of the toughest times of my life. Last year I faced my seventh spinal surgery, but thankfully the forward thinking hospital staff fully embraced Tally’s role and the difference she made to my recovery was astounding. I had been warned that the day after surgery a team of physiotherapists would be arriving to ensure I got out of bed at least twice a day and that pain would be a necessary evil to prevent further lung problems. During a previous surgery to install Harrington rods (from T4-T12), my left lung had been collapsed to access the thoracic discs denting my spinal cord, but re-inflation had proved problematic and I now had a permanently collapsed lower left lobe. I still remember waking up in ITU later that night in a panic. They were absolutely right, it was incredibly painful, and the thought of moving even a few inches onto the trolley to get me back to the ward was terrifying. Unbeknown to me, my awesome son had already arranged to bring Tally in first thing, and when she spotted me in bed she wagged her whole body furiously in that unique ‘Where have you been all my life?’ canine way and my focus immediately changed. Without a second thought my son and I carefully negotiated the various IV tubes and got me into the chair for my daily pet therapy. When the physiotherapists arrived an hour later their expressions were priceless and the focus quickly changed from getting me up, to walking me down the corridor! Thanks to my furry medic, I was allowed to leave the hospital in half the anticipated recovery time. Animals have an incredible capacity to accept us unconditionally, and Tally has been not only my personal assistant, but also my personal psychiatrist.
Once home she went straight back into what she knew best, collecting my clothes, removing my socks and coat at the end of the day, emptying the washing machine, picking up dropped items, pushing open doors so I could pass through, passing me the phone, collecting the post and stabilising me when out and about. When you watch a majestic golden Labrador pushing her nose determinedly into a washing machine to pick up your smalls with her teeth, and then delicately dropping them in a basket, it changes something in your psyche. It pushes you to try that little bit harder. Hey, if Tally can use her mouth to help me, then what’s the big deal about re-educating slumbering legs? I used to say that when I was with Tally I felt a bit like a celebrity minder and that still stands to this day. People weren’t bothered by my wobbles and stilted movements. That isn’t what got them staring! They were just fascinated by the concept of Tally and from day one she’s got me out there and talking to people again. With Tally I forgot to be afraid of what my body might do or fail to do in public. I just focused on telling them all about her, and my recovery became the positive side effect of that mission. Far cheaper and far more effective than daily physical therapy!
I owned an electric wheelchair in the earlier years, which in theory gave me the freedom to shop locally, but I found negotiating the wheelchair unfriendly local pavements a nightmare. Tally and I literally only had one set route that we could use outdoors to access a local park and that was it. By the time we arrived at the park I would be anxious and exhausted and already dreading the journey home, negotiating one lowered pavement adjacent to a fast -flowing corner for traffic. I wanted more for Tally and me and that’s when the idea first took hold, but I initially rejected it outright. I’d been told my limits loud and clear and part of my recovery was accepting those limits right? Yet Tally and I needed more choices so I persevered. That was seven years ago and today I can finally say that my legs are much more under my control, as long as I respect that their limits, and I’m even the proud owner of a disability car now. Tally literally walked me through those early toddler days paw by paw, and without her I’d not have had the confidence to keep going, as it certainly wasn’t a pretty sight. I was all lurches and lumbers but it’s definitely been worth it. That wheelchair has finally been relegated, replaced first by a walking frame and then by a tripod walking stick. Without Tally I’d had given up pretty quickly, but with her beside me I knew the world would understand my struggle. And I was right.
That wasn’t the end of Tally’s contribution to my recovery. I was so impressed with my furry physiotherapist that I wrote about her for a dog story competition in 2011. She won it, and that year was named Dog of The Year by the magazine Dog Training Weekly. We were even offered a slot at Crufts to formally accept her award, but sadly I still wasn’t strong enough to travel up north, so Canine Partners accepted it on our behalf. However I began writing a monthly article called Tally Talk for Dog Training Weekly, and the readers went on to raise 10K for Canine Partners (www.caninepartners.org.uk). That’s roughly the equivalent of half of a Canine Partner for another disabled person, as it costs the charity around 20K to train each dog and owner. I bags the back end every time. After all it was that wagging tail that got me through some of my toughest spots!
After Tally Talk, writing became my go to place, where I could feel connected to that part of Mandy BD that I really missed. As an ex teacher I was used to helping children and parents en mass and I sorely missed my giver role. My years of rehabilitation seemed to have robbed me of that capacity and I struggled silently with despair, too embarrassed to admit how I really felt. A friend then bought me a book called Joni, by Joni Eareckson Tada, and that book literally changed my whole outlook. Joni was a 17 -year -old American girl when a diving accident left her quadriplegic, frustrated and bitter. Yet she went on to become a talented artist (using her teeth), prolific author, radio host and founder of Joni and Friends (www.joniandfriends.org), a Christian organisation for the disabled community that provides wheelchairs to some of the poorest communities in the world. After a few hiccups in her early recovery, Joni came to view disability as a climbing frame, rather than the brick wall, and her writings encouraged me to do the same. I saw professional writing as my ultimate prize and began in earnest. It’s still very early days as yet, as I produce published short articles for specialised markets but I’ve got big plans for my future! I’ve already written three quarters of a Sci Fi book for teenagers, started during the days when Sci Fi and Fantasy films became our new sport when my son and I were both housebound. I have also completed an autobiography of my journey so far, which I hope I can find a market for once My Sci Fi book succeeds. Climbing frame not brick wall right! Joni changed me whole view of disability, and I want to be able to pass that favour on too.
Since my own changed status from able bodied professional to disabled woman undergoing treatment, I’ve noticed a growing trend in society to undermine the needs of, and discount the potential in, disabled people; from the cuts in social care budgets and mandatory re-assessments of financial needs for those living with incurable conditions, to the media emphasis on disability cheaters rather than disability life -changers. Some of my more recent dealings with Adult Social care would make your toes curl, but that ones for my next blog! Not as a rant, just an example of the hurdles now being placed in front of those doing their very best to manage both disabling conditions and a way to contribute in the world. I’m fortunate in that my earlier profession gave me a voice but it haunts me that there are those out there who are suffering in silence, and I know I have to speak up for them. I have been inspired again and again to aim high by a plethora of extra-ordinary disabled people out there today, but I would hazard a guess that many of the public would neither recognise their name or their achievements. Sure there are those that we all know and love, but many remain silent witnesses to the courage of human endurance and endeavour. Here are just a few examples and I’ll begin with some of the famous ones! Professor Stephen Hawking, ALS sufferer and theoretical physicist and prolific author. Heather Mills, amputee, businesswoman, activist and fastest disabled woman on the planet! Helen Keller, blind and deaf, and lecturer and activist. John Nash, Schizophrenic and renowned mathematician. Christy Brown, cerebral palsy sufferer, poet, painter and author. Sudha Chandran, amputee and acclaimed Indian dancer. Marla Runyan, blind, professional runner, five times gold medal winner and author. John Hockenberry, spinal cord injured, journalist, four times author and Emmy award winner. Jean-Dominique Bauby, Locked –in Syndrome, journalist, ex editor of Elle magazine and two times author since disability. My personal favourite of course has to be Joni Eareckson Tada! The list remains endless. Film such as The Theory of Everything sends out powerful and positive messages about disability. Professor Hawking may be seriously disabled but he has a ferocious intellect and is a sound reminder that we are so much more than our physicality. It frustrates me intensely that the media often seems to have a very different agenda around disability.
I hadn’t been able to write for ages as my peace of mind has been sorely tested by neighbours “renovating” their adjacent terraced property for more that six months. This was to be the year we would start taking in language students and I began tutoring but alas our home is no longer user friendly as our sound resistance has been massacred. We now get to enjoy their daily sounds from 06.30-11.00pm (from showering, toilet flushing, sweeping, talking, laughing, dancing and music) at the weekends, and daily drilling and hammering during the week while they are at work. To give you an idea of the paucity of our new sound resistance, after a very loud social last Saturday night, the male of the house belched noisily in his bathroom at 1am (next to my bedroom) and advised all who could hear (me included) that “a mans gotta do what a mans gotta do!’ Arrgh! Really? So anyone out there who could advice me on this matter would be greatly appreciated! Unfortunately Building Control advice me that due to “issues with resourcing” they cannot help! So any advice would be gratefully received guys! Anyhow on that particular drilling day my carer and I couldn’t hear each other speak over the drilling and all I wanted to do was express my fury. Unfortunately my timing sucked and I followed through at the exact moment that the drilling paused, and my poor carer nearly hit the ceiling. I’d never screamed before and it now felt too much for both of us! After apologising profusely, I clicked open my emails and in that moment everything changed. My inbox contained an email from a partially sighted disabled Italian man called Carlos. In broken English he told me how he had suffered from anxiety, depression and insomnia for 35 years, now lived in a home for the disabled, and felt friendless and alone. My Easter blog had ‘touched him deeply’ and convinced him to see himself in a more compassionate and positive light. To be honest I still have no idea what I wrote or even where and when I wrote it, but the thought that I had been able to reach out to a traumatised stranger lifted my spirits no end and got me back on track. Disability has taught me an important lesson. Each of us have a unique place in the world, from being front of stage famous, to changing the belief system of one lonely stranger and all of our roles matter to someone. For me the key is happiness has been discovering what that role is and accepting it wholeheartedly. I found a love of writing and if I can change at least one person’s view of life for the better then it would have all been worthwhile.