It was Callum’s 33rd birthday this Wednesday! What better moment to update everyone who loves him, on how he is and where he is?

As before, I start with apologies. Happily, the local grapevine here in Hay means that a number of you have at least an idea of how he is doing, but this is not true of his friends further afield and I am sorry for that, though I have had my hands rather full, especially in the autumn. The last update was in August, so over six months have passed. But the enforced quarantine that we are all in right now creates some space to ground, regroup and be in touch with everyone, for which I am glad.

Callum is still at Frenchay Brain Injury Rehab Unit-BIRU- in Bristol. Or rather, he is back in Frenchay after a brief month’s foray to another establishment just outside Ledbury. More of that journey later, but for now I am thanking heaven that he is safe, with people he knows well and trusts and who love him to bits, with first-class care and therapy. It’s tough not being able to see him and be with him but that is how things must be for now, for all the reasons we understand.

Since writing last August, our amazing and determined young man has continued to progress with only the occasional setback. Nearly every week there have been smaller and bigger things to celebrate, it seems, and sometimes even OMG moments, although the world of brain injury is ‘another country’ and may appear subtle to those of us who inhabit a world of more headline-grabbing achievements.

During the autumn he progressed to being able to walk outside without the need for any ‘walking aid’, except for a hand on his arm. Farewell wheelchair! And then farewell stroller and finally farewell hip harness!! Inside the building, he worked to the point where he now doesn’t even need an arm as support and latterly has been practising doing a bit of speed walking with his physio – the days when I felt I had to almost jog to keep up with him, pre-accident, do not feel impossibly out of reach, suddenly.

His cognitive deficit, coupled with the lack of sight in his right eye, mean that it is not safe for him to walk on his own, however. He needs to be reminded to keep scanning on his right-hand side, and also down at his feet from time to time, especially outside, to negotiate kerbs or obstacles like uneven pavements or low lying branches. He tends to walk looking into the middle distance, which while great for his posture and enjoyment, can sweetly make him a little like Mr Magoo (look him up) in his blithe lack of awareness.

He also relearned how to get into and out of, a car, which has transformed our time together: We started to go to a pub for lunch, or to Snuff Mills, a local beauty spot, for walks by the river. The first time we went there, in the autumn, he spent minutes looking up through the foliage to the sky. His lovely Speech and Language Therapist asked him later the impact of that walk on him: Was he happy? Was he at peace? Comforted by being in nature? Perhaps all of those things? He looked at her and couldn’t find the words. She wrote down all the options. He underlined ‘All of those things’ and drew arrows from the separate feelings to that statement.

I have tears in my eyes now remembering that. So often, and in ways that are gifts, he demonstrates, like then, the depth and complexity of his internal world of feeling, experience and emotion, and gradually he is relearning the ways to express them to us once more.

There have also been a couple of occasions when he has taken my car keys and insisted that he drive us to the pub. These times had me punching the air inside, as initiation of any action has been massively challenging for him. But inevitably these were poignant conversations too, and very tough to hear for a young man who loved driving so much.

He has relearnt how to go up, and later down, stairs. First one step, one step, and then fluidly as you or I would use stairs. Coming downstairs is still something that he can at times struggle with when he is fatigued. The cognitive challenges at such moments are too great. He understands what is needed but cannot ‘join up the cognitive dots’. Similarly, he can hold liquid in his mouth and be completely unable to swallow it when he is very tired, even though he knows it is there and what is needed. Luckily he is adept now at expelling it into a cup, as aspirated pneumonia is a real danger otherwise. Resting during the day will be a feature for many years to come, perhaps for the whole of his life?

The highlight of the autumn has to be the Tinariwen concert at the Trinity Centre in Bristol. Beautiful Thea floated the idea and miraculously Frenchay agreed, as long as there were the two of us with him. It felt a little like the proverbial swan sailing serenely downriver while paddling furiously underneath, in order to make it work fluidly (What if? What if?), but we just had the most amazing time, and everything went like clockwork. We went for a bite of supper beforehand in a really cool bar close by- Callum teared up as he sat and looked around at people chatting quietly over a beer and food. And we did take the wheelchair for the concert but he stood up the entire time, dancing with Thea of course, and the venue staff were outstandingly kind and enabling. I swear: Callum generates and draws the most amazing loving spirit towards him always, even when he was in a coma in the ICU at the QE in Birmingham, and certainly that evening, from folk who didn’t even know him.

And there have also been trips to Thea’s house, to the Bristol Aquarium, the Botanical Garden, to a Wildlife Park where he walked nearly 5000 steps (this last in February). Such enriching experiences. It’s like watching a flower unfold, witnessing him as he drinks in these times.

So his physio continued with stretching, balancing, getting on and off the floor, treadmill, cycling, cardio bursts. Repetition is the name of the game until the neural pathways are reinforced once more till it is automatic for him. And the same with showering, dressing, putting on shoes and socks and mastering shoelaces- this last is extremely taxing cognitively. But he is getting there.

I thought that cognitive gains would be a lot slower to manifest than his physio progress and so it has proved, although it surprises me how one merges into the other. For example, his consideration of others is absolutely there: he will usher me through a door first and then follow and close it, or he will sit Thea down in the more comfortable chair. He cried when he heard about Danny and his Dad’s devastating robbery. He dances at the slightest opportunity. He can sing along, word for word, to fast reggae patter. He laughs at the dry humour of Cori, one of the other patients. He winds up his therapists regularly (Orientation example: ‘Hello, my name is Jo. I am your therapist. What is your name?’ ‘Israel’. ‘OK, I’m going to go out and come in and try that again, Ok?’ ‘OK’ ‘Hello, my name is Jo. I am your therapist. What is your name?’ ‘Callum’. There was also an incident involving an F and a C that cracked us all up. You will need to grab me when you see me if you want that one. I am not writing it down. But it was hilarious and so typical of Callum). He is absolutely present when he is not tired, though he can veer from being surprisingly articulate for short bursts to not being able to signal a yes or a no to a cup of tea. On our return from an outing early in February, he stopped as we arrived back to say ‘ I am resolved to tell you…’ and then paused to gather himself and find the words, to continue ‘ I am resolved to tell you that I find even the most simple things difficult’. I was so moved. His ability to have insight into his challenges, and then to articulate them, is a measure of how far he has come in his time at Frenchay.

He has continued to have periodic (around two monthly) self-limiting seizures, which apart from one episode, has not necessitated time at South Meads General Hospital, thank goodness, though they wipe him out for a couple of days afterwards. His consultant tweaks the meds to try to achieve the right balance- It turns out that Cal is very sensitive to medication. We strive to manage the risk of seizures against Cal becoming too ‘knocked off’ by the sedative effect of some of the anti-seizure meds. We all know which side of that balance he would want to be.

And so to recent events. By Christmas, Powys had taken over responsibility for funding Callum’s care. A big CHC assessment meeting had taken place which had been very sensitive and constructive. It was collectively decided that although Callum was continuing to progress at Frenchay, that the moment may have arrived where being closer to home in Hay would have a really beneficial and motivating impact for him. And so in early February after an extremely emotional leaving party at Frenchay (we were all in tears: staff, patients, me of course, Cal) Callum moved to Ledbury. The new establishment was in the country and just ten minutes drive from town. However, it became quickly apparent that not only were they not able to offer Cal the focussed rehab that he so badly needed still, but that despite being very caring, there was a lot of basic ‘stuff’ that was falling between the cracks. And so the benefits of being closer were outweighed by those factors, in my firm view. I expressed my concerns to Powys, who was very professional; we agreed a period to see if things could improve.

Then Coronavirus started to accelerate. I started to get very concerned at the thought of Callum being on lockdown for goodness knows how long without being able to be there to support him and to guide staff on how to be with him. And the advantages of being closer to Hay were going to be completely erased by the inevitable lockdown. Long story short, with outstanding professional support and speed all around, he was back at Frenchay within five days of me starting to explore his return there as a possibility. I cannot put into words how relieved I am. The Frenchay staff and I actually did a jig when I ‘hand-delivered’ him back last Friday. The day after they went into lockdown. Talk about under the wire.

And that is where we are today. In this period when no visitors are allowed, cards and messages will be tremendously important for his morale. Thank you to all those of you who have been in contact with him in this way already. He is in Room 17, Maple, North Building, BIRU Frenchay Bristol BS16 1UU. I will endeavour to update further in the weeks to come.

May they and we get through this relatively unscathed

Thank you for reading. Thank you all for your incredible love and support. Take care, everyone.