Valery Spiridonov, for RIA&DFL
In those days when I and Italian neurosurgeon Sergio Canavero stated about the planned scientific breakthrough in the form of a body transplantation, many people were surprised by the very idea that this could be seriously discussed.
There were attempts to find an excuse for what was happening, it reached the point that my participation in this work was justified by the hopelessness and apparent despair of my position. Like, what else can he do?
There was another reason for surprise: educated, demanded, active, with more than ten years of experience in project management software – and suddenly decided on such an ambiguous experiment!
About the love of technology, the desire to popularize science and its place in this particular development, I already told in an interview with RIA News. But I still often ask about how it turned out to become what I became, having significant limitations on health since childhood.
It seemed to me important to tell about this. Because it can be useful to other families where a disabled child is growing, or an adult is already in a similar condition. In Russia there are several million people with some form of disease affecting their physical health, but they do not affect the mind at all. Perhaps part of my experience is applicable to them.
Test by the diagnosis
When a person with a complicated diagnosis appears in the family, this is always a test. A test both for himself and for the people around him.
At this point, there are exactly two scenarios. And to make a choice is really very difficult.
The first is to drop your hands, to swim with the flow, in own ambitions only to get a disability pension and lead a life full of hardships and sad thoughts. This path leads to depression, lack of interests and smooth, and often premature fading of the individual. In a person with disabilities, no matter how hard or even cruel it may sound, there is practically no chance for a full-fledged happy life if he does not begin to take responsibility for what is happening to him.
I say this because I myself am an invalid of the first group, and went through everything I write about. You can endlessly rely on the state, relatives, volunteers and charitable organizations, but in the end it’s not something that will bring real joy and confidence in life.
So, for example – parents, unfortunately, are not eternal. They can be an invaluable support and support, but only in a situation when they take a constructive position and their child with disabilities will have the prospect of realizing themselves.
The support of the state will allow the disabled person to survive, but one can hardly expect more. Volunteers are wonderful, kind people, but to rely on them every day means to depend on having free time and willingness to help. Sometimes it may not coincide with the need or timeliness of assistance.
It is possible to discuss arbitrarily long the validity of these words in each individual case, but if you want something better than constant dependence, then you need another way.
Is it possible to withstand the test with a diagnosis with honor, to get out of it in demand and happy? Is it possible to do this in completely “medium” starting conditions? Yes, but you need a second scenario, which is based on several key skills in the life of a person with disabilities.
The most important is discipline
And the discipline is applicable not only to him. Close to this person is important from the very beginning to realize: he does not need pity, and do not need a “disservice” in the form of a hyperopic. It will be difficult: moms are doing their best to alleviate the hardships of their child, because “he is not healthy, he is already so difficult.”
At that moment understanding must come: it will be really difficult for him when he will remain alone, and nothing will be able to do, because at one time he was helped too much in everything. With my disease (SMA), and in many other cases, when the muscles are weak and do not have additional stimuli for development in the form of regular physical activity peculiar to other people (mobile games, walks), they can degrade even faster if they are not involved in Everyday elementary things. Household self-service, independent food intake, simple hardening in a cold shower, regular airing of the room even in severe frost, patience with the implementation of medical recommendations and responsibility for training are those habits for which children with a diagnosis like mine will repeatedly express gratitude. It depends not only on health, but also on the ability not to be too heavy in the lives of those who help. Pay attention to what a person is capable to make. Don’t interfere him in this even from good motives. Emotions must be disconnected here.
The same concept includes time planning and prioritization. At an early age, if the intellect is preserved and the disease affects only the organs that do not include the brain – education is a priority key to a normal future. In our limited health case, it is able to provide not just survival, but a decent life.
School, books, institute…
These are the things that do not accurately teach a disabled person to earn enough to provide for their needs. But they are able to broaden their horizons, to form an interest in knowledge branches, which almost certainly will grow into work, allowing not to engage in boring routine, but to receive income from what really causes emotional and economic satisfaction.
Educational institutions, even distance ones, are extremely necessary, because in the presence of discipline, the lack of the possibility of broad communication between a person with limited physical abilities and other people can be replenished by the need to prepare for classes.
Education today is not so much one-off courses, 5 years of university, or classes with an English tutor (although it is the tutors – a simple and affordable way to deepen their awareness in the area that seems promising, it should be used and I did it).
Education is the desire and ability to learn on your own. Today it is much more accessible than at the time when I began to study. At the time of the limited, slow and expensive Internet of the beginning of the 2000s, there were so many digital libraries, free lectures and video lessons in all fields of science, production, and humanities.
Today they are, and access to knowledge is really at the distance of computer keyboard.
“Colleagues for the disease” and just ordinary people, knowing that I work remotely, they often ask me – how can I make money quickly on the Internet? I honestly answer – I do not know the methods guaranteed, without the knowledge and skills, the investments of forces and time, to receive a steady income. The Internet is nothing more than a tool that should be used as means of exchanging data, ideas, files, developments, creating online services, obtaining and applying those skills that are valuable regardless of the delivery vehicle.
Without leaving home, you can confidently work on dozens of so-called freelance destinations, if desired – with registration under an employment contract. It can be website development, texts, design, programming, consulting, translations, game development, audio / video, 3D graphics, engineering, animation, architecture / interior, printing, management.
It significantly simplifies the life of a person with a diagnosis of another skill.
It is not easy to instill it, because such people are often closed, shy and not sure of themselves. So I was, until I realized one simple thing: being self-contained does not make life brighter, more intense and more interesting..
Moreover – isolation does not even make it psychologically comfortable, although it would seem: if you are shy and do not communicate with people – there are no traumatic factors that cause anxiety. But this is a dangerous illusion. Without the skill of communication it will be very difficult..
I am grateful to the people who surrounded me and involved in various social activities: knowledge Olympiads, youth educational forums, activist movements.
Although, of course, you can start with a small, like network chats, forums and social networks. But it is extremely important to learn to transfer communication skills into real life. With them, you will be able to radically improve it.
Here is an example. I needed someone who could help me move from bed to chair in the morning. I understood that this is a very short procedure and it makes no sense to carry out global searches around the city, social services and acquaintances. To go to me specifically for this is not optimal, it’s expensive in all senses. And I wrote a simple good letter about finding an assistant, then throwing it in the mailboxes at my entrance. For several years, a neighbor has been helping me, and it takes 5-10 minutes for me to help and get back to my business. I, in turn, do not leave this without symbolic gratitude. Everything is convenient, problems are solved.
Thus, taking care only of their own discipline, education and ability to communicate with people, you can lead a decent, interesting, colorful life, even in a wheelchair from the very childhood.