I think I was about nine when the realization struck that symptoms like pain, fatigue and twenty bone-deep oozing ulcers on my hands were not the issues to overcome in order to have any semblance of a happy, fulfilling life. I have severe Raynaud’s and in the bitter cold sub-zero temperatures of cold winters in a country with no central heating, my hands didn’t just turn white and red (they also did that and coming in from the cold made me cry in pain), they also had little blisters that erupted so close to each other that when they ruptured half a dozen would form one big ulcer that just didn’t heal.
Every winter morning my hands were re-bandaged, prescription lotion applied and then I put on a pair of black fingerless gloves that wouldn’t come off until night time and another pair of winter gloves over the top for the drive to school. In later years I was three hours late due to doctor’s orders. The only way they could figure out to make sure I didn’t lose my hands to the cold was to keep me indoors until temperatures rose significantly. I sat at home in the mornings whilst my whole family was at school – both parents were teachers – and worried about going.
My class mates and friends weren’t mean and I was lucky to always have friends waiting for me in the car park when I finally got there, but nobody was really comfortable around me. Least of all myself. By noon my gloves would start to soak through with yellow ooze and blood that crusted and stuck the dressings and gloves to my hands. I smelled like anti-septic, sweat and dry blood.
Some of my class mates’ parents felt that letting me come to school for three hours every day instead of six was a sign of favouritism. Some of my teachers felt that I created additional work by not conforming and fitting into the system. Mostly though, any negativity was usually caused by either a lack of information and people drawing conclusions on the tiny part of my life that was visible to them or just general ignorance and the inability to adapt to situations that broke the mould. I was caricatured, I still am.
My health issues are “complex”, my family is “complex”, our situation is “complex”. In reality, this means that most people tend to only take a small part of my life into consideration when making decisions about my life. It also means that nothing ever runs on schedule, that most things that surround me are chaotic and people resent me pretty quickly for forcing them out of their habitual patterns. None of these things are by design or choice.
I didn’t choose to inherit EDS, I didn’t choose to have a particularly severe case of EDS, I didn’t choose the dozens of complications that arose from my stretchy collagen and I most definitely didn’t decide that being disabled as a result was a desirable lifestyle. None of that matters though. Just like I cannot separate my life and my personality from my condition and its resulting impairments, other people usually cannot draw a distinction between the things I cause by intent and the things I have no control over. I make people’s lives difficult and that makes me a difficult person to deal with.
I try not to take it personally. I wait, patiently, through the inevitable delays that accumulate around me as people try to figure out what to do with me and which box to shove me into. I wait whilst everyone rants, complains, stalls, evades and avoid dealing with me or my issues. I do my best not to take anything personally. I am a great believer in Hanlon’s razor.
On a magnanimous day, I quote Goethe: “…misunderstandings and neglect create more confusion in this world than trickery and malice. At any rate, the last two are certainly much less frequent.” (The Sorrows of Young Werther, 1774 – Johann Wolfgang von Goethe)
On days where I need a little humour and feel a small sense of superiority, I go with “Never attribute to malice that which is adequately explained by stupidity.”
Quite often, people do not mean to be mean. Big, lumbering government departments are a tangle of bureaucratic knots with red tape stretching into infinity. People get frustrated. I know I do. Then they get angry. I know I do. And then, in my experience, they either act impulsively or stop to think things through. I try not to let rash emotions colour my decisions.
Nine year old me went to school with a smile on my face even though I was biting back tears. Twelve year old me, seventeen year old me, twenty two year old me and thirty five year old me did and do the same thing. I believe in kindness, compassion, autonomy, independence and I don’t want to be an angry, bitter, ball of resentment by the time I turn forty. So I let things go. I forgive. I forget. I choose to believe that people do the best they can and I do my best to always give people the benefit of the doubt. I believe in education not confrontation.
I am however, also a rather stubborn and determined kind of individual. I don’t easily give up. I do not compromise my principles. I may not harbour resentment towards specific individuals that make my life harder, but I have no trouble staying on course with dogged determination.
It’s not been a good few months around here, tension is running high and we have pretty much exhausted all options and resources and are again back to asking ever so nicely for someone to take pity and pay attention.
Life is like that sometimes. It’s extremely difficult to pull yourself up by your bootstraps. Today is another dreary day, but that’s okay because the secret to happiness and fulfilment doesn’t lie in the things you have, the things you are capable of doing or in health or how well you happen to be doing. It is hidden away in the little things. The flower just starting to peek through the soil by the window, the cup of warm decent coffee steaming next to my keyboard, the picture a three year old drew for me to decorate my “office”, i.e. my chair-corner in the lounge and the sounds of a laughter that I hear every day.
I don’t keep a mental image in my head of what life should be. I just try to notice every day, in any moment, the good things that are everywhere around me, just waiting to be appreciated.
I think vocabulary says a lot about a person. The words we use describe the things we do, the stuff we think about and it is our words that shape and reflect our reality. After being asked recently how big the little one’s vocabular now is, I started to pay more attention to the things we say and repeat ad infinitum. Read the rest of this entry »
*Spoiler: Discussing plot details in Ashes of Victory by David Weber.
I am currently listening to Ashes of Victory in David Weber’s Honor Harrington series. Someone has just been stabbed to death with a knife. Despite killing three of the attackers, he doesn’t make it. I was really hoping that he would because he is one of the good guys.
I start to think of the repercussions of his death. It was political assassination of sorts and he was a spy carrying a data chip with vital information he had gathered. Not only is that information in someone else’s hands, the group he has infiltrated will probably soon know that he was a spy and that would have a whole different impact on the current political stage.
I have been irritable all afternoon, exceptionally tired and hurting a lot and nothing really helps. I can’t sleep, I can’t stop worrying about meetings, administration, money and keep running through an infinitely long to-do list that I cannot get to at the moment. Getting distracted by details are a terrible way to spend an afternoon or evening and so as soon as the little one went to sleep, I turned on my audio book. Read the rest of this entry »
It is hard to talk about living with a long term condition that affects everything you do or cannot do on a daily basis. It is by nature a depressing topic and many external influences only serve to add more pressure and more negativity. Even where smart people have done their best to turn things around and focus on the positive, like is the case with Personal Health Budgets and Personal Budgets starting to come into effect, the process seems to inevitably spiral back towards the negative in many cases, including mine. Read the rest of this entry »
I noticed a large minor bruise across three ribs on my three year old’s chest a bit more than a week ago. She had been complaining whenever anyone picked her up and touched her right side, but I hadn’t put a lot of stock in that. Touch often hurts with EDS and as long as we modify what we do so that the pain stops, there usually isn’t anything more we can do.
She bruises more than other kids and usually have a bruise or two somewhere (excluding her lower legs, like all small children both are always covered in healthy bruises from playing), but she doesn’t usually complain about it for consecutive days rolling into weeks.
I had a quick look at her side the first time, didn’t see anything spectacularly wrong and then, a few nights ago, I had a decent look under bright light. Read the rest of this entry »
It started with a runny and blocked nose, then a sore throat and sneezing the next day, a mild fever, cough and generally feeling unwell the day after that and by the end of the week my whole throat, ears, nose, head and face ached, I was getting spikey headaches at regular intervals and the post-nasal drip had worn out the skin and I was swallowing a river of bloody mucus. I steadily got sicker and then the three complications that I always get arrived. Read the rest of this entry »
It is 10 am on a Sunday morning and I feel like I would imagine Sandra Bullock’s character from Speed felt the day after. Or maybe a bit more like John McClane the day after that day, but without any of the feel good fuzzy joy of a things turned out okay ending. I have had a horrible cold for three weeks that’s flaring up all my other issues in the most excruciating ways. Tired does not begin to describe it. Read the rest of this entry »