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Embracing the adventure of change

Dear friends,

As this new year begins, I would like to share with you some experiences and insights on a personal level that I have had recently. Some days ago, I had a dream that left me with conflicting feelings and questions that persisted long after I woke up. In my dream, I was in a restaurant in Syria, the Syria of before the war. It wasn’t a specific restaurant, but the atmosphere was true to life, as I remember it. I was in a large gathering of friends and relatives, some that I have not seen for many years now, some that I have no news from, and others who are no longer with us. At one point, I left the gathering shortly to go on an errand, and asked my mother to keep an eye on my wheelchair. Don’t ask me how I could leave without my wheelchair, it was a dream – but coincidentally, a friend I spoke with later told me she had seen me in her dream, walking in the streets of Aleppo that same night, in high heels…

When I came back to the restaurant, it seems that my mother had also been away for some moments to buy something, and when I asked her about my wheelchair, she said it was just where I had left it. But it wasn’t, my wheelchair had disappeared, and was nowhere to be found. I woke up abruptly with a feeling of disaster, and a strong frustration that my mother had not taken better care of my wheelchair, although she knows how much I depend on it. You will of course have no difficulty realising that this was just a dream, but it was so vivid and the feelings were so strong, that for a while I had real difficulties at an emotional level, sorting out what was real, and what belonged to the realm of fantasy. The two following nights, I had more dreams – in other contexts and with other stories, but these dreams also ended as nightmares, where I lost my wheelchair.

Every person I have spoken to about these dreams has offered a different interpretation, and I am sure you will also notice different details, based upon your own perspective and experiences. A friend who knows me well suggested that the vivid memories of Syria and the restaurant gathering of my dream was likely connected to my niece’s wedding earlier in December, when I had reconnected with so many friends and relatives that I had not seen for years and years. I think she was right - the wedding was an amazing, delightful and happy occasion, but also a bittersweet reminder of all the missing faces, and of the familiar places in Syria that have been lost for ever in the war. A lost time also, when reading old books opened new worlds to me, and I was able to spend hours in deep meaningful conversations with people from any conceivable background. In some sense, the past lives on in us, but whenever we return, things will have changed, as they inevitably do. As one of the ancient philosophers said, we cannot step into the same river a second time. We will have changed, and so have the waters, ever flowing onwards. At the wedding, little children danced and played among the seats left empty by those who have departed.

The second interpretation my friend suggested, was that the dream expressed my difficulties coming to terms with the fact that as persons with disabilities, we cannot fully depend on relatives to meet needs connected to disability - or even any other emotional, social or intellectual need. I know that my own relatives have good intentions, but I also know that I cannot trust any of them to be there for me if I really need it. My friend thinks that I should not expect them to. Relatives are people we are deeply connected to all our lives, with the good and the bad, but they are not there to solve problems. Friends are different: they are a family that we choose ourselves, and who choose us, sometimes for a period, sometimes for life. But even the best of friends will have their own limitations, while at other times people we barely know or complete strangers will be there to help when we least expect it. If we chase a feeling of absolute trust and security, we will always be disappointed. So, should we instead focus on each moment, and appreciate the sparks of connection that do occur, just like the young children playing at my niece’s wedding, without any thought of tomorrow?

The last thought that my friend offered, was that the dream could be related to feelings of uncertainty for the future, since I am waiting for news that would bring important changes to my life. For this at least, I think she was right. Any move beyond my doorstep requires careful planning and logistics, and the struggle of constantly having to think ahead for all sorts of contingencies has left me with a kind of hyper-vigilance that I cannot switch off. Moving beyond the circumstances that I know well is not easy. Sitting by the same window in my kitchen every day, I know what to expect, and I have some control over what could happen to me.

But this narrow comfort zone has restricted my life, while the energy I put into contingency planning is immensely draining. Unfortunately, this is a reality that people with disability have to cope with every day of their lives. We will continue to face these issues, until we achieve a deep transformation of society, so that going out on a simple errand will no longer feel like an expedition to Mt Everest, and so that any stranger in the street will have the openness and knowledge necessary to lend a helping hand if we should need it.

In my dream, I experienced the ultimate nightmare for any wheelchair user, of losing the independence that my wheelchair gives me. For this time, it was only a dream, but it is something that could happen in real life, and maybe it will. In the meantime, my resolution for this coming year is to leave that familiar corner I have occupied these past years, and step out into the world with open eyes to whatever 2024 will bring me. Like a lobster, I will leave the old shell that I have grown out of, accepting the vulnerability of that change, but looking forward to growth and swimming out into the open sea.

Chavia Ali

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