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Post 27: “Help”

Warning - this is a long post and covers issues that some people may find distressing.

I’ve been trying to use these posts as a way of sharing some of my real self, partly because I'm used to hiding behind jokes and characters. In Post 2 (“Don't You Forget About Me”) I wrote about some of the effects of my neurological disorder. This is a period of my life that I've never written about before although I have spoken about it publicly and privately. I was blown away by the generous response to that piece.

At some point I hope to write more about when I fell ill and the experience of those months in and out of hospital, but for now I'm not quite ready. Instead, these are some thoughts about the recovery period and what it taught me.

At the physically lowest point during the onset of my condition, I was unable to move unaided, lost sensation in most of my body, couldn't speak clearly and had forgotten all kinds of information. When I was finally discharged from hospital, I was just about mobile but very wobbly, still slurring my speech, and quite disorientated. Remembering this I'm a bit resentful that I had the same after effects as if I'd been out drinking and dancing until dawn but with none of the fun!

My recovery followed a pattern of peaks and troughs, I was relapsing and remitting for quite a while. During that time, I experienced some immense acts of kindness, but also a drive from some quarters to “fix” me. Once I'd had a diagnosis it was important to learn as much as possible about the condition and to come to terms with it, but this was something that some members of my family found difficult to accept. There followed a whole host of well-intentioned treatments which I accepted partly to keep those members of my family happy, and partly because, well, you never know!

The routes I explored included conventional medication, homeopathy, medical homeopathy, reiki healing, a variety of diets (including a totally rank one involving grapefruit pip extract - NOT recommended), and slightly less common options such as pendulum divination with a ring, faith healing and a blessing by an especially holy Rabbi.

Under some emotional duress I also asked my doctor organise tests for less serious conditions which had similar symptoms, just in case the (world leading expert) consultant had got anything wrong. Unsurprisingly this request came from people who were using the Internet for their research.

Whilst these avenues were all suggested (and followed through) with my best interests at heart, they distracted me from the very real and urgent business of learning to accept a lifelong situation, focusing on improving what could genuinely be improved and getting to know the new me. It also made me very anxious and a bit paranoid.

It provided a lesson that was hard to take in but very necessary. Sometimes helping doesn't help. Your help is not what that person needs or wants. It stems from your discomfort with the situation and not theirs. We need to let people have time and space to deal with changes in their lives, be there for them, but listen to them too. Interventions need to be something they want or need - not to make yourself feel better.

Another behavioural impact came about as a result of becoming quite institutionalised during my stays in hospital. It made me very self-absorbed and I spent my whole time analysing how I felt and whether bits of me were working or not. I come from a very medical family who often embody the saying “a little knowledge is a dangerous thing”. I developed raging hypochondria and was quite phobic about being alone at home in case “something” happened.

It was years before I was able to admit that the something I was scared of, was dying. My disorder has nothing in it that will kill me and there was no real reason to be afraid, but I was. I really was.

This was connected to three real issues - the first being the traumatic time before the diagnosis when no one knew what was wrong. I then witnessed a man who had been admitted to the same ward as me on 3 occasions pass away. He was in the bed opposite me and his wife and daughter were with him, he was crying and frightened. Finally, two women who I was introduced to because we were undergoing similar investigations, then both died of completely different causes unconnected to mine. I believe that I suffered a form of PTSD after this and it took a lot of patient support to recover from that. It taught me that it's not weak to reach out when I'm afraid.

My sister-in-law is a neuro-physio and she took time out from work to come to rehab appointments with me. She then taught my son (aged about 6 by then) all of the exercises I needed to do between each session. It had been a terrifying few months for him. She had a double agenda here - being able to contribute and participate made him less scared for me and feel empowered in helping me, and having your child nag you to do your exercises morning and evening is a powerful motivator.

I always consider her thoughtful and intelligent help a massive contribution to the fact that I can live such a normal life now. It also really taught me how important it is to consider the impact of difficult situations on everyone who surrounds the incident, it happens to them all even if it physically only affects an individual.

The final lesson for today (those of you who've stuck with this post until this point will be relieved to hear!) is that our bodies are miraculous and amazing. When I was well on the way back to normal life and able to resume some kind of regular exercise, my sister suggested that we try dance classes together, specifically hip hop for adults.

I know!

Anyway, she talked me into it and I arrived for the first session early so that I could tell the instructor about my limitations (eg my body sometimes has a slight time delay in responding to signals, I can't coordinate myself with any regularity and also I can't feel parts of my feet). She advised me to go at my own pace and just have fun.

We started with a warm up which I found so fast and complicated that I wanted to walk out. Then an amazing thing happened. The stretch section of the class contained a range of ballet moves, and my limbs automatically placed themselves in the correct fashion.

The repetitive nature of the ballet classes I'd trained in as a child had forced certain movements into my muscle memory and despite still finding some everyday actions quite difficult I seemed to be able to lift and point my legs or make certain shapes with my arms with no problem at all.

We may think that we've forgotten all kinds of things, but they're still hidden somewhere in the filing cabinets in our brains. It's just a matter of something unexpectedly opening the door.

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