I want to be left alone but still longing other people to be around me because of my wretched bones
Nothing couldn't be much more difficult than having a rare bone condition which is followed by a horrific appearance in the end and to top it all up further is pain in my body all over. This bone condition caused by decades of high concentrations of Phosphorus in my blood as a root cause of secondary hyperparathyroidism and finally caused my physical appearance to change. But all along while I have no clue what was really happening to my body, little changes are happening from noticing that I am turning to get ugly as time passes-by until I end-up like this because of the slow to full blast onset of Leontiasis Ossea. The thing is that this condition is not solely about changing my appearance and stature but also that pain which is associated with it. Until now I am not very tolerant about sitting for long because soon enough my back will begin to feel unbearable pain. However I am still lucky and feeling blessed for that matter because with the help and mercy of God to my soul I finally was able to at least make the pain more tolerable and thus, boosting my quality of life. I remember a patient which actually experienced pain because of high parathyroid gland hormones in his body although he didn't suffer physical bone changes, his pain was great enough to finally affect his dialysis treatments because lying down alone is painful enough to warrant his demise after a few months. Sadly he succumbed to death in the most painful way possible because I already experienced what he went through until his final excruciating death of not getting dialyzed his blood because he gave-up already. It scares me much if I will end-up like him in the future where I cannot provide myself anymore with a not so simple and not a cheap vitamin too to improve my bone health. But I am trusting God that for as long as I can still move my limbs or speak to say what I want to convey, then with God's help and mercy I can still survive and end-up dying from the worst death ever which I still fear would come because of its possibility to happen.
Now that physical changes had happened to my body, it had made me more dependent on other people like my parents who are all I got to help me out particularly my mother who understands my disposition and really cares for me with all her love and support to which she still tries to help me financially by going to politicians and make a financial requests so that according to her "To help contribute for my expenditures" although I tell her not to and just use the money she receives from these government politicians for her and my father. Anyway, because of my handicap and nothing much physical that I can do even if I will push myself in doing it, it will really not amount to something because I am just lucky enough now to go into the milestone of not requiring my parents to wheel me back and forth to the bathroom anymore whenever I want to have a shower or use the toilet. Little achievements like that is very precious for me as it lessens the burden for my parents. However, I totally had lost my independence because although I gained a little strength, it is not enough for me to walk to and from or travel even normal distances outside my home because I still needed to use the wheelchair to make it possible for me to get from point A to point B plus a person or people to help me out and it does frustrate me a lot. This kind of frustration makes to think that it would lead to a far more worse situation the moment that the truly ones that cares for me is no longer around considering that only a few people in my life really cares and that all others doesn't even want the sight of me because of the heaviness of what they have to get themselves into and that scenario is real which again makes me want to fear he future.
Peculiar circumstances in my life had made me to be more reclusive than ever before. Now I really do not want to mingle with people any longer considering that it bothers me to mix with strangers that I always assume to be rather hostile because I know that people are very visual, prejudice, and mean based on what I experienced due to my physical attribute even before these ugly "dismorphia" (more like mal-morphed) happened. So the urge if possible to get away from people's evil eyes makes me to live in other planet or maybe even my own island is still here. My inherent shyness went so high now considering that I still am suffering from anxiety which I really tried to fight but I think that I will never overcome it because I really tried.
However, no one can really be an island, and no one can really be totally alone as one poem says in one of its lines and I am just paraphrasing, and so we still needed each other because we have to be working with each other for the reason of that basic need, to be safe, secure, to survive. It is because living in this world comes with constant danger even if you take out all modernity from our lives like we are primitive people of old times because we still live in a jungle, or any setting in nature so we still need protection and cooperation with one another in order for us to continue with our lives surviving and moving forward how difficult it will be for us individually. That is why my fear about losing my loved ones that cares for my existence is very important for me as if I would lose the whole world once my immediate family gets even more smaller. It will mean that my days will be numbered, not that I will die but because I hate to live in a world unloved and uncared for and then suffer more physically. I know that I have to be strong in mind and in spirit because the nature of life is already hard the moment that we recognize in our adulthood that we are not like the angles playing heaven anymore and that we have to cope especially in these times where hard life continues to get harder. But for me because God himself had proven that I am with him all along and that he had helped me not to capitulate for this life-long struggles that I will not get through, all I can say is that it is better to have a living God in your life than struggle and have nothing in your life to save your soul afterwards.
Very painful, however, it was very painful to read your history.
Upvoted! Thank you for supporting witness @jswit.