Comfortably numb…

Life, at the risk of sounding self indulgent and more than a little self pitying can best be described in the title above. At least for the time being and that’s ok with me. Comfortably numb sits comfortably. 

I have loved this amazing song for many years but, you will forgive me if I defer to the Scissor Sisters version and the soothing warbles of Jake Shears than the sanctimonious, anti-Zionist (read anti-Semitic no matter what he may say) Roger Waters opus. 

It’s a song I have sang along and danced to in the past. Briefly thinking on the lyrics only in so far as much as trying to remember them for appalling, impromptu karaoke. 

But of late, they are strangely soothing and a fitting discourse of this time in our lives.  

Urban Dictionary’s top definition: http://www.urbandictionary.com/define.php?term=Comfortably%20Numb

Doesn’t that describe the perfect “safe” place? Removed from the sharp stabs of real life, set apart from the disappointments, the difficulties, the knocks and the scrapes. And if that is so, then comparibly the edges dulled off the fun, frivolity, light and laughter?

Does this make me melancholy? I do not think so. Does it make me less able to participate, share, enjoy? Perhaps. Nonetheless I will gladly settle for this numbness. There is little that can surprise me or scare me in this half life. It allows me to maintain a sense of glass half full. 

I realised on our journey to hospital this morning that my benchmark for stress, nerves and worry is very different to what it once was. 

Not to take away from any parent/carer watching their loved ones suffer or go through scary, frightening procedures but this is our norm. Different child, different hospital but largely the same. 

Did I appear to the nursing staff cold, unfeeling? The soft “are you alright Mum?” after the anaesthetic had been administered and my not so little boy’s head gently laid back upon the bed, a kiss on his still baby-soft skin , barely registered. I was dry-eyed and calm. I have walked this walk, talked this talk more times than I can recall. Is that admission in itself shameful? Should I know, unbidden, which child, what number anaesthetic? Why? 

I find myself waiting, pausing for a beat, attuned for updates. News of medical tests, results, tribunals, social care, and so forth; the envelopes received with post-marks from various hospitals, the no caller ID flashing up on my mobile, the ping of an email: I am both strangely alert – a cat on hot bricks and yet not really surprised by the lack of information.  I’m a bit bored of it all. Blanketed by ennui. 

So for now I will embrace the numbness, float along. The bumps are smoothed out. Temperate but equally obdurate. 

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Smoke & Mirrors…

Busy. Keeping busy. Every waking moment. Planning, doing, moving and shaking; albeit not in the term of “big business” more anxiety and jangling nerves that leave my hands jittering and spilling drinks, dropping bottles (gaviscon off the garage floor anyone?!) and generally causing me frustration and embarrassment.

My mind is never still, nor am I physically. Tick tock tick tock. I have come to the conclusion it is a protective measure: too much time on ones hands to ruminate is dangerous. Thoughts come unbidden.  They still have a tendency to take me by surprise: a mental stock-take of the medicine cupboard; an appraisal of potential “weapons” – it’s amazing what you can do with the most run of the mill household items. The need is still there. Particularly on the bad days.

The house is clean, washing up to date. I have baked, entertained, ironed, meal planned and filed paperwork like a woman possessed. 

I look well. I have make up on, painted nails, hair clean, smelling fragrant. Not only is it my armour, it is an artful misdirection. A new take on the magicians slight of hand. I show what I want you to see. 

Slow down. Take time for yourself they say. Rome wasn’t built in a day. Rest when you can. Why? Will that be the magic fix? 

There are yet even more people involved in our lives now, more meetings, appointments, frustrating phone calls & emails. Everything is happening and yet time stands still. Limbo. At the beck and call of authorities who push deadlines and time frames then move the goal posts at the 11th hour. I no longer want to be reasonable and considered yet moderation is key.

I am raging. I burn with white hot anger. It spills over to my every day life. Fragile children, already clingy, needy, uncertain. They demand, understandably,  so much from me. I am torn in wanting to soothe, appease, console; but I am selfish. I feel conflicted and unsure of my approach with them. They want answers to promises I cannot make. My ferocious, voracious stance is only matched by my impotence and threatens our burgeoning protective bubble. The bubble is as delicate as those blown in childhood from bottles. 

I am told I need to stop with guilt. Ha! It is a laughable suggestion:  I am a mother, a woman & Jewish at that!! We give the Catholics a good run for their money where guilt comes in! If only chicken soup really did cure all ills. I’m sure the NHS would be most grateful though big pharma, maybe not so much?

Do not get me wrong. It is not all black. There are things to enjoy and things to look forward to. Realisations of how much friends and loved ones. mean. I hope they know how appreciated they are – both my virtual, on line support network & the flesh and blood variety. Guilt creeps in when I am too tired to reply or comment. I should be able to support others as they have done me but I cannot find the words, nor sometimes the energy. 

I am in equal parts engaged and yet withdrawn from the real world. I keep waiting for the sense of normality (whatever that is) to resume. Instead I feel I am wavering, teetering. I am reminded of the Stevie Smith poem “Not waving but drowning.”

 

A work in…. progress??

I’ve been truly over-whelmed and grateful for all the messages, emails, texts, visits and all round offers of support in the last few weeks. 

If ever I needed a kick in the backside and a reminder why I am actually privileged beyond all doubt, the last 9 weeks have galvanised that thought process entirely.

In the most utterly dark, dismal and scary places I’ve inhabited over the last few months (both literally and figueratively) there have been sharply crystallised rays of light, a beacon if you want lighting the way and guiding me in the darkness. Cliched? Maybe. True? Certainly, at least for me.

It is well documented that the very worst of times can bring out the very best of people (I refuse entirely to dwell on the paradox that you may also see the utter waste of inhumanity and degradation) and from those that have stepped in at short notice to ferry the kids about, entertain them, help hubby in anyway possible, iron, wash, cook, clean, shop; family, friends, acquaintances newly made (rapidly turning into firm friendships)and friends of old both in the wider world and closer to home in Yorkshire, I am humbled and grateful.

There is so much I want to say about our “bigger picture,” what led me to the depths but for legal reasons I can’t. I’m sorry if that sounds a bit obtuse (I hate those annoying fb posts where people say something really leading, enough to pique your interest and then leave you dangling  – probably because I’m nosy!!) but at this point in time, I do not wish to jeopardise our issues going forward (again, note the optimism; I cannot entertain the thought that things could crumble and leave us wading and wallowing in the 💩again….) Hopefully in due course I will be able to elaborate further and end with “and they all lived happy ever after” type scenario.

For now, and because frankly I’ve been a bit rubbish in the last few weeks at replying to people, I thought I’d try and sum things up a little – I guess this is the blog equivalent of either the (depending on your perspective!!) loved or loathed round-robin Christmas letter.

I think I mentioned a few blog posts ago that I was struggling to answer how I was feeling. I wanted to say what people wanted to hear. I know that with the best of intentions those closest wanted to hear “I’m fine” and see a steely grin of grit and determination. In truth, I was more of a soggy mess and I haven’t dared wear mascara in a very long time (way before my admittance) as even waterproof would have given in to the torrents of tears. 

Fast forward to present day, I am testing out a proper reply to the question of “how are you?” During some points of some days I could honestly answer that question with “I’m fine, good even!” And I wouldn’t be lying. Other days, other moments it would be a more honest answer of “not so good” and you may end up with a wet shoulder if you proffer it for me to cry on.

I haven’t started ‘proper’ therapy in here as my team believe that the best place for that is once I’m home. So for now, I guess the best answer is I’m a work in progress. But an evolving one, striving to move forward and embrace myself imposed motto: if the glass is half empty, there’s always more room for wine! 

Of course I’ve barely had a drop since I started on this road! Obviously you can’t on the ward but even on the occasions I’ve been out for meals or gone home for a night or two, I’ve only had a small glass, mindful that alcohol is both a depressant and doesn’t go well with hard core medication. (NB – I’ve checked with staff and I can have a little glass if I want!!)

I’ve not had huge epiphanies whilst I’ve been an in-mate but I have had moments of clarity and realisation. I’ve absorbed some of the comments from the psych team; turned & twisted them, then embraced them even though they do not always sit comfortably with me. Prickly truths and all that.

I’ve been shocked at times how devious my thought process has become in the months that I hit my all time low. Moments where I feel almost as if I’m an observer of myself. Distanced and looking on at the crazy woman who pontificates how she could sneak tablets and other items to harm myself back into the  hospital, avoiding the inevitable bag searches (FYI, I haven’t, mainly because I’m more worried about other patients who may be even more fragile than I and the potential dangers I could put them in if they went through my stuff) when I return to the ward. Then appalled as my mouth seems to disconnect from my brain and share these thoughts with the psych team. The brain is screaming “shut your mouth!!!!”at full volume whilst the gob goes spouting on and I tell them the numerous and awful ways I could do various things. For obvious reasons I won’t elaborate on those. I’m told however by the team that the fact I’ve been honest with them is a good sign so I’ll hold on that as a win. Lisa 1…. depression/anxiety,/deviousness well if not exactly a 0, at least not wholly defining me.

I know I have a long way to go. I’m not naive enough to think that once I go home everything will be magically sorted and I can bounce back, go straight into full on mode as I had been doing for so many years. I am a realist. And I’m aware that being back at home will bring the stresses and strains of the real world and I may have blips. But that’s ok. With appropriate support, therapy and remembering not to run before I can walk (I’ve never been a running fan anyway unless it involved shoe sales or last orders) I’ve begun to accept that I can regroup, rebuild and restablish myself. 

I know inevitably there will be days I can’t listen to the salient, sage advice – be that by necessity of stuff HAVING to be done (& there is a definite difference in what HAS to be done and what I would LIKE to accomplish in an ideal world) for with a medically complex child and one with autism there are always needs that are imperative and have to be addressed. But I also will acknowledge that if I don’t unload the dishwasher there and then, it’s unlikely to be a deal breaker, the world will not stop turning and the biggest issue I might face as a result is no clean tea spoons (where do they all go? Along with Tupperware lids and single socks that I know went into the machine in pairs!) 

I’m a do-er by nature. It doesn’t sit easy with me to kick back, leave things to others (control issues? 🤔) and not organise, create, or be involved.

Guilt even now is a constant companion. Guilt knowing that Martin is (awesomely) juggling a stressful job, home, kids etc; guilt that those around me are having to pick up the slack; guilt that my loved ones are worried about me, my frame of mind and whether I can cope; guilt when Minx cries after a lovely weekend spent together but I have to return to the hospital. Guilt that I can’t read bed time stories or provide in person encouragement to our son doing A-levels. Enormous, crushing, at times all encompassing, over powering guilt that I can’t wave a wand and enable our autistic child to access not just what he deserves but needs in order to meet his potential.  Even guilt that the poor dog is on his own for large parts of the day if no one is able to be at home with him.

However, guilt is not my friend and it is self destructive. So instead I choose to remember that I have made it out and about, home at times,  walked the dog, (even if it’s been late in the day) cuddled my children, kissed tears, sore knees and sent messages, spoken words of support and suggestions of help and for now that is enough. 

I am after all a work in progress ….