|Back to 'The Office' this evening to start another 5 days of protons being fired through my head.|
I've had a relaxing couple of days with having the 'weekend off '. Saturday I went up to Euston Station to meet an online friend who is a great fan of actor and TV presenter Alexander Armstrong, and who had the great joy of finally meeting him the previous week after the 'I Know Your Face' final on ITV. She is a lovely lady who is very forthright and also for the most part out of her house, wheel chair bound. She suffers from multiple sclerosis which makes my problems seem miniscule if you put it all in to perspective.
We had a lovely late lunch at a nearby indian vegetarian restaurant and 'fangirlied' over Alexander (who likes to be called Xander) Armstrong and of course the magnificent Ben Miller!
But that aside, she is also a very clever lady who was completing a PhD on issues about dying but had to give that up due to her illness. And it got me to thinking, what is the most devestating thing one could lose when they become disabled and lose their livelihood as a result?
To me, it's not been so much about losing my job but losing my sense of purpose, my sense of usefulness I guess. Now I am very lucky in the fact financially I can (just about) keep my home. At the beginning, when I sat in an office at the hospital I was working in at the time, I was on 'secondment' until I hopefully would recover enough to return to my duties - I was only meant to be there for a few weeks, but it stretched in to five months. Sadly I didn't get any better and was assessed by an Occupational Health Physio who wouldn't even consider observing me walking with my stick in adjoining corridor next to the offices where I worked, let alone on a busy medical ward!
It suddenly dawned on me at that point it was all over. My career at an end as I could no longer fulfil my contract of employment. All I could do was just sit there and sob my heart out, eventually having to leave work early that day as I had become so distressed. I was not only just losing my job, but also what had pretty much defined my existence for thirty two years of my life since I was eighteen. I can even tell you the date, time and place I first put on the uniform of a nursing auxiliary as we were called back then. It was 9am in Gloucester Royal Hospital, Ward 18 up on the ninth floor of the tower block, on the 29th June, 1979. I started my training at The School of Nursing, Treliske Hospital in Truro on the 9th March 1981 at 9am. I passed my State Finals qualifying as a Registered General Nurse as we were known back then on the 28th May, 1984. My career ended on the 22nd March 2011 at 5pm in the Medical Records Department at West Cornwall Hospital in Penzance and I have been foundering ever since.
My biggest fear back then, and still is to a certain extent, was about paying the mortgage and bills, and how in God's name was I going to be able to do that? Eventually after several battles over a period of time, financially we're just about breaking even on a small pension, contributions based Employment Support Allowance and Disability Living Allowance, none of which I would have now if it were not for the help and support of a dear friend who is also an Advocate for the Disabled.
Anyone faced with such a drastic change whether being made redundant due to economic climes, suddenly dismissed for whatever reason will probably tell you the same thing. The panic and drama indeed does give way to anger, fear, dispair, depression and disorientation as to what one can do to survive. In my case it was all of the above and my losing my sense of purpose, which I am still trying to get back.
The hardest thing I have to do now is to continue to *try( and get my sense of purpose back, to have something that will get me out of bed in the mornings. I spend a *lot* of time on Twitter and Facebook, but before you decry that, they are my conduit to the world, a world I would otherwise have never known and in this last little while, a form of salvation in terms of having something to do and look forward too.
However, both have to be used with caution as they can become addictive and one has to remember all that one says in both social media, its out there in public, 'where no secrets are hid', as part of the weekly creed in the Church of England says. I have had a public meltdown or two on Twitter, the worst being last year in October when I finally hit that brick wall of brick walls, alone in a small hotel room near Paddington Station. My obsessions, and desperate attempts at being relevant, busy, sociable, plus managing a heart stopping 8000 miles worth of travel in the previous two months finally hit me like a granite block being dropped from a great hight.
I won't go into the details, the ramblings were in this blog at one point, and I have deleted them as they are counter productive and as it was a rant from someone going through the very horrible experience of reactive depression, which can still bite if not careful. I have also discovered that if I get a sudden change in mood & become a bit childish and irrational, that is also a precursor to a seizure of the most odd sensation.
But I digress.
I think a sense of purpose, belonging and usefulness is an essential human need in nature, it is to know our place in the social groups, societies and hiearchies that exist. While humans can and do function alone, there's no worse feeling in my opinion, than being excluded, no matter what the reason. And for all the best will in the world, excluded you do become especially when it involves loss of employment, function, status and defintion. I was defined by my career for the best part of 32 years. I was happy with that as it gave me a sense of esteem as well as fulfilling my need to be needed.
Don't get me wrong, there was and still is the genuine desire to help, ease suffering if possble for that person's sake rather then my own and be there if I can. But I am also honest enough to say my career was also my ego, my 'status' if you will, my reason for being, and it gave me a sense self worth in a way I never had before. And the stupidest of things highlighted that loss, no longer would there be annual work do's, Chrismas parties or dinners to look forward or be invited to.
To see all of that disappearing as one approaches the edge of the cliff, unable to stop, indeed speeding up towards that loss, can be too much to take in all at once. Some will tell you 'stay positive','chin up' and that's not a bad sentiment if you have the energy to do that. But also I have found (and I am ashamed to say have done this) these things are as much to reassure the person giving those sentiments, rather than for those they are aimed at. I also get a little embarrassed when people tell me that I'm 'brave'. I am most certainly not that, there'll be no gongs for me on the new year and official birthday lists for courage!
Be careful with telling someone to be 'positive' as the very sentiment you want to use to instill optimism to the affected person, might actually make them feel worse; being positive takes energy and that's something a lot of ill people just cannot summon up at will. I certainly can't. On my lowest days (profanity warning here!) I just want the world and everyone in it to fuck off and leave me alone, yet I am also a very needy person at times, finding muself craving attention on occassions too (not with this blog I hasten to add!) which is embarassing and not healthy. So sorry folks, you'll just have to be patient, understanding, but do not be afraid to let me know I am going over the top as well.
The questions of what use am I? What can I do? What can I *not* do? What about my future? Will I get a life back or will I remain on everyone's 'pity party' list of invites (easy to do, gushing sympathy is a lot easier to live with than scorn!) and will I only ever be seen by what's growing in my head? Will I only ever want *to* be known now as the poor woman with a brain tumour?
You can dump the 'pity' bit and as said before I am by NO means couragious nor brave - I leave that to those who have far worse challenges than I have with my wobbles and slight absence seizures - but I *do* have a big mouth so might as well put it to good use, and with that my sense of purpose is coming back slowly. I want to shout this from the roof tops. to make people aware that brain tumours, along with every other unsexy illness/disability is worthy of attention, of research, of concern, of knowledge, of all that and more. In short I guess I am getting my passion and activism chops back and can work towards contributing to others' sense of wellbeing and welfare again.
It's not much, this blog, and again, this isn't 'all about meeeee'. I just want to inform, to teach, to raise awareness, to share my experiences so others might get a taster of what is to come and yes, hopefully inspire those who read it. I want to highlight the difficulties and dangers with this disease with all it's 120 different tumours and 4 stages of agressiveness, but also to encourage a sense of hope, of dignity and empowerment. I will try to look at not so much what it is I cannot do in the future, but what it is I can (realistically) do and plan for. But for that I need help, which that sadly for people such as myself in these times of 'Austerity' is not aways forthcoming.
To sum up, personally for me, my greatest loss *has* been my sense of purpose and is the same for many others. So I am urgently trying to get that back. I am positive by nature and in the most part feel fine. But on my worst days when I am reminded of what has happened, the only thing I'll have left to fall back on *is* that sense of purpose and hope it will always be there.
Algy will always be in my head, but I hope over time he'll not always rule it.