Let It Be: Me

One of the hardest lessons I have had to learn through all this is, I can only be me.

When Jo first awakened from the 16-day coma of critical care I was there. I can still remember the look of fear and bewilderment on her face and my overwhelming desire to take all the pain away. I wished then it was me so she wouldn't have to suffer and the feeling still rises to the fore every time I see Jo struggling with the aftershocks of what has happened to her, of the cruel hand that fate has dealt her.

Today Jo dislocated her jaw, not through some trauma but by the simple act of yawning. The hemiplegia means the muscles on her left side are weaker and, as she was tired from the Physiotherapy session today, a massive yawn engulfed her and dislocated her jaw.

A very capable doctor at A&E put it back but, later on tonight, another overwhelming yawn caused another dislocation. I had seen what the doctor did and had also suffered such a dislocation myself on several occasions. Perhaps I am just a slack-jawed idiot. In any event I was able to coach Jo through the process of resetting her own jaw by yawning widely and moving her jawbone sideways while doing so.

I could see, through her tiredness, her bewilderment and resentment that this was happening to her and I realised that this was just another thing she was going to have to come to terms with; that I could not bear this for her, in fact that learning to "keep her big mouth shut", as I jokingly chided her, was her lesson to learn, not mine.

The light at the end of my garden

Last weekend a volunteer team descended on Arolla to clear out a year's worth of weeds and restore some semblance of order to the garden.

This has been organised by the almoner of my Lodge, who has also invited us to apply for funding to; finish the conservatory, pave part of the garden to allow Jo to access it in her wheelchair and widen the doorway to the kitchen, thus allowing Jo to access it from the conservatory.

In addition he has organised a lawyer to take up our case against the insurance company and is also working on funding to provide Jo with a residential course of intensive neurophysiotherapy in the Wellington hospital in St John's Wood, which has a specialist unit for neuro treatment.

Jo's GP was particularly supportive of this latter move, when we asked him for a referral letter, saying that he, "was really looking forward to it" as he was firmly of the opinion the intensive treatment would help Jo regain her independence.

Jo herself has been suffering muscle spasm in her left shoulder, occasioned by the enforced lack of mobility as the insurance company has left her languishing without physiotherapy of any kind for six months. The pain was so great she had to be coaxed to sit out in the conservatory to watch the garden team but professed that she was glad she did afterwards, the sight of her beloved garden being restored having raised her spirits.

When the going gets tough...

When this incredible journey began a friend remarked that, "It must be extraordinarily hard." Those words have stayed with me as I traverse the many byways and cul-de-sacs the events of 08/08/2008 have led us into.

It is extraordinarily hard to keep on keeping on, to keep a positive attitude and lift another's spirits even as your own are crashing through the floor.

When my own father suffered a stroke I felt equally powerless to do anything, a futility borne out of my distance from him and my mother as they struggled to cope with the devastating effects of stroke.

Mother used to phone and I could hear the weariness in her voice. Then she would put my father on the phone while she went off to busy herself with what I now know are the unseen aspects of caring for someone: preparing meals, washing clothes, doing the housework or the garden. All those normal activities that are suddenly a burden because you are doing them alone, your partner being unable to perform those mundane tasks alongside you and so turn them from chores to shared experiences.

While my mother was doing this my father would unburden his soul to me. He would tell me how he only felt half the man he was, how the holes in his mind and his memories had diminished his sense of himself. I came to realise that this was now my role, to bear witness to these dark depressions and, in sharing them, lighten his load a little. I soon learnt that he kept these gloomy thoughts from everyone but me as he struggled to lighten the burden upon my mother, to keep a cheery face for her and my sister.

I now know his loneliness only too well. I cannot share my moments of despair with Jo and if I unburden myself to anyone else I only increase their sense of frustration and powerlessness in being able to help me cope.

Truly we live this life alone and all we can do is keep going.

The Battle of Nevermore

After a 5-month hiatus, when we received no communication from the insurance company and all efforts to evince a response from them were met with a promise "to get back to you", they finally communicated that they would not be funding any more treatment. The reason given, that, according to a report in November last year, Jo's condition was at that time "the same as it was before the accident" is damning for a number of reasons:

1. We never agreed this as a success criteria. Given the damage to Jo's confidence and the delay caused to her rehabilitation I have always been clear that they need to recover the ground lost.
2. If anything was to be restored to the condition it was before the accident that was Jo's confidence. That has not been done, largely due to the drip-feed nature of the way they have doled out treatment.
3. The prevarication by the insurance company last year in meting out further treatment led directly to Jo's pressure sore and pulmonary embolism, the latter caused by DVT. Both these afflictions were a result of enforced immobility while waiting for a decision from the insurance company on further treatment, regressing Jo's physical condition.
4. The further hiatus this year has led to Jo being without any treatment for 5 months as the NHS physiotherapy cannot resume as long as private treatment is still extant.

We must now take the matter to court and I am currently searching.for a decent lawyer to battle on our behalf to ensure Jo is nevermore left to languish.

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