Ever so slowly I have retreated into myself and closed the shutters blocking the outside world. During the past year especially, I have lived like a hermit. Whilst it is true that it is not as easy for me to get around as I did prior to 2009, I have been able to go out occasionally, or use e-mail, or social networking sites or the phone but instead I have cut off almost all contact with my friends. I have felt that this need to withdraw is more like a compulsion than a choice. It is like a phobia that I have developed leaving me with very little conscious control over it.
At the heart of all of this is a most tremendous feeling of guilt and shame. I am so embarrassed that this has happened to me; that I am living with my mother and am unable to work. Given that a large part of my personal identity and self worth was tied up in living independently and working and paying my own way through life, the loss of this has shattered who I think I am and who I see myself to be.
I feel like I have been publicly humiliated in the sense that everybody that knows me knows what has happened to me. I have this overwhelming inner voice that tells me that I didn't try hard enough to get my independence back and that I gave in and surrendered myself to my disease. Yet I know, intellectually, that I did everything in my power to keep it all from slipping away.
I am awkward around people now because I feel like I don't have much to say, given that I am leading such a sedentary and low key life now. It is a normal feature of social etiquette that when people get together having not seen each other for a time they asked each other how they are and what they have been doing. Given that I don't want to drone on about my symptoms, I really don't know how to answer these questions and exchanges.
I am also cognisant of the fact that outwardly I did not appear to look sick(er as I have always used a wheelchair) and that if anything I look better now with the addition of some weight, thereby filling me out a little better.
Early on during this journey, I did venture out on a few occasions and I came in contact with some people that I know in passing (i.e. I am not referring close friends here) on several occasions. In these instances they invariably made comments to the effect of you don't look sick, you don't look any different than you used to. I recognise that these comments were probably offered innocently enough, but they made me feel uncomfortable. It made me wonder whether people thought I was exaggerating my ailments, or worse. I have been out for dinner once in the last 12 months and on that occasion I came across somebody I used to work with when I went to the toilets who said something like, well, I see you aren't sick enough to stop going out. I realise that this person doesn't have an IQ in double digits – and I knew this before I got ill – but this snide remark has stuck in my mind ever since.
There seems to be social pressure in situations like mine to wear your pain on the outside and look like you are at death's door. I am sure that if I was fitted with an oxygen mask, had a tracheotomy and had a colostomy bag hanging off the back of my wheelchair people may cut me a little more slack.
I suspect what is happening here is that because I was previously able to function at a reasonably high level given the severity of my condition, now that my level of functioning has reduced some people still want to hold me to that earlier standard. But people forget that likely it was living so far beyond what was normal for my disability–type that this has contributed to the state that I am presently in because I was redlining it for so long and eventually it all caught up with me.
I don't want to go out into the world anywhere near as often as I did before 2009 when things started to slow me down. My pain levels can get pretty high at times, and often I am content to stay inside and rest as much as I can. But I would like to go out sometimes, maybe do something socially a couple of times a month, but I don't want to have to justify myself to others for doing so. Surely, I have a right to some level of enjoyment and happiness and I shouldn't have to sequester myself behind closed doors indefinitely because I suffer from a degenerative neurological condition the exact extent and effects of which are not visible to others? Don't judge me by what I used to be able to do because I am paying the price for all of that now.
I simply don't know what expected of me now. If I had cancer, for example, and was experiencing a better than average day and went out and saw friends or did something socially (like see a movie or have dinner) random acquaintances that I encountered along the way would likely tell me how pleased they were that I was doing a little better and was able to enjoy whatever it was that I was doing. I am simply asking for a similar level of respect.
Another element of causality for this retreat from the world is that along with my feelings of anger, frustration and depression was also an inability to handle stress very well. For a while there, I literally could not focus on more than one issue at that time and would become overwhelmed very easily and have difficulty in coordinating even the most simplest of sequential tasks. This was caused, I think, equally by the emotional trauma of what has occurred to me as well as the medication I was taking during and after my hospitalisations. I have now begun working through the emotional aspects of what has happened to me as well as significantly reducing my medication.
Finally, in recent times some people who I knew a long time ago have reconnected with me on Facebook. They have done the usual thing and send a message to me asking how I am going. Despite the exile I kept myself in, I have replied to these people and although it is difficult for me to do it, I have given them a brief rundown of where my journey has taken me a thus far. I have tried to keep things light and have been conscious not to say too much, but just explain that I'm not working any more than I am staying with my mother; and the reasons why this has happened.
I guess it must have been difficult for them to work out what to say in reply because there have been some people who have simply not replied beyond my returned message. I wish they knew how difficult it has been for me to put together the message I sent them because it was not something I could do easily. If anything, this has contributed to me continuing to keep myself closed in and incommunicado for the most part because I interpret the silence to imply that I am not worth responding to. It's happened on a few occasions now and it just makes me feel like withdrawing even more. It only serves to increase my sense of isolation.
Part of the reason why I am doing this blog is to try to move beyond this self-imposed imprisonment that I have forced on myself. I need to say though that the last majority of people have been fantastic to me and understood why I have kept my distance. Now that I am once again starting to interact with people again, no one has seemed to have taken my earlier silence to heart. I am pleased that people seem to understand that I shut down as an involuntary defence mechanism.
I am inching towards reintegrating myself back into my network of friends. I hope that this blog can serve to help facilitate this in some way.