[Warning: Some readers may find the subject matter difficult or emotional.]
As I sit here reminiscing about some of the things that have been said to me over the past several years since becoming Ill, there are a few remarks and comments that I have encountered that I truly didn’t see coming or know exactly how to respond at the time.
When I replay them I have often wondered whether they would have said these things to someone else or to someone with other illnesses? I don’t know. But they were said and they are remembered. Here are a few of those choice moments that I will share with you now;
1. “If my body was that useless I would rather kill myself…” [A relative]
2. “If I were you I would drink heaps of alcohol and inject heroine all day, I mean, what difference would it make, really? You’re pretty f*&ked anyway!” [A carer]
3. “I can see you’re very disabled and in pain… but there really isn’t anything that I can do to help you…” [A specialist]
4. “You really are lucky that your husband chose to stay with you. The poor man must be a saint.” [A friend]
5. “At least you don’t have to worry about being good looking anymore.” [A friend]
Nothing can prepare you for when someone says these things to you and, sadly, these are not uncommon remarks that are made to Autoimmune sufferers and about the Autoimmune community at large. Many have heard these things, or something just as painful. Is it something that you would say to someone suffering cancer, an amputee or a burn victim? I certainly hope not.
It beggars belief that people can think such things, let alone say them, but that is perhaps how comfortable the world is with judging the Chronically Ill and those with [invisible] Autoimmune diseases in general. Perhaps they are merely examples of some of the people that I know, or maybe it is an example of how the world reacts and treats people like me. Either way, it was revealing.
I was born caring, intelligent, imaginative, creative, good sense of humour and surrounded with wonderful examples of what I didn’t want out of life. I wasn’t born knowing what would happen to my health and I am glad I wasn’t. I didn’t know all the characteristic traits that was born with until I discovered them, through time and experience; the same way as many people discover who they are and what is inside them.
The curse of being a reasonably intelligent person is that you are not a genius. You can not split atoms, cure cancer, answer cosmic riddles or understand human nature, but you are burdened with enough intelligence that you can not live in blissful ignorance of some realities of life or in selfish preoccupation and greed. You are forever a questioner and a seeker, but answers may always be just out of reach. Tortuously so.
While the above examples of what people say and how they act might be strange or even offensive for some people, to me they made me think. They made me think about why people say what they say and why we react as we do to them. Why do people spend a lifetime in pursuit of things that are mostly unimportant and yet the most important issues and questions remain mostly ignored and untouched? Why do people spend a lifetime trying to control their appearance and physical abilities whilst inside they can be living shallow and empty existences? Why are people in constant competition and comparison with others when they could live more happily in support and respect of our individuality?
To those who would want to die if they found themselves in my situation, I can honestly say that there are times that I would have agreed, but not for the reasons that they might think. Those people tend to also be the type that struggle when life doesn’t go the way that they require and when fortune doesn’t smile upon them. I don’t like what these diseases have done, and continue to do, to me but I try not to see myself as useless and without purpose because I cant do what I once did. In fact I have learned to value some things about myself that I never valued before because I was too busy operating at the physical [surface] level. Working, training, dieting, preening, pleasing and earning. I have discovered many untapped abilities and strengths, the most powerful of which are forgiveness and acceptance.
The undeniable truth is that all life ages and loses the abilities it once has, it is vain denial that people pretend they can withstand aging or the affects of age on the body. They fear aging and death. At some point, however, we all lose the physical abilities we once had, sadly it generally means a time of deep sadness, bitterness, hopelessness and denial for those who aren’t prepared to accept the fragility and nature of human existence. Society doesnt recognise this period as having value nor people with these limited physical abilities. Yet they are all very valid and very human realities.
So should I have used whatever time I have left drinking alcohol, injecting mind numbing substances and killing myself off faster? Again, I have given this much thought and I believe that I can better use my remaining talents advocating, educating and joining with others who are amongst some of the bravest and most courageous souls I have ever met. If I decided to inject heroine and smoke crack I would never have met them and realized I am not alone with some of these struggles. I would never have made the wonderful friendships that I have.
Am I lucky my husband stayed? Yes. But so is he. Even though I may not clean the house, Iron clothes, Cook sumptuous meals or enjoy mountains of housework, my value as a wife and friend still rests in my ability to love and commit my life to my partner and our relationship. I still offer him the moral support, the friendship and the intimate respect that he deserves… and so do I. Years ago when I thought about him as potential relationship, I considered his personality and inner qualities and whether I could make a life with him. The same questions remain when we tackle the life in front of us and whatever lays ahead. We are both lucky, but not for the superficial reasons that most think. We are lucky that we chose partners that balance each other and respect each other completely. We are lucky because we have seen how difficult life can be and how hard it can be but we have seen that we can survive the harsh realities of life.
Now I must admit that when a doctor stares at you, your pain and you tell them your long list of life symptoms, you secretly hope that they will reach into their desk and produce a medicine or something that will bring relief and comfort. You hope that THIS will be the visit or the specialist that will change it all. This time will be the miracle you were waiting on… It always, ALWAYS, hurts when you leave empty handed and without even the slightest bit of hope or inspiration. However, when you finally realise you are outside their realm of healing abilities they often will want to treat you with suspicion or pass you along to someone else as quickly as possible. Have more than ONE disease and you will be labelled as ‘complex’ and doctors will avoid you at all costs. This means that you are beyond modern medicine or its expertise. You will be left to try and manage your realities and your pain with the tools you fashion for yourself and with some coping strategies you pick up along the way. However, their actions have led to me writing, blogging and connecting with others all over the world who have startlingly similar experiences to me.
My ‘useless’ body has led me to places I never imagined I would go and to people I would never have imagined I would meet. My ‘useless’ existence has produced works of art that have been exhibited, building a beautiful garden that I treasure, starting countless interest groups, rescued animals and written articles that have touched lives the world over. I know plenty of people who are more able bodied than me who have would not chose to use their fully functioning bodies in the same ways.
The comments I listed earlier has also helped me see what the world and people truly think and fear most about life. It has shown me who has heart and spirit and who doesn’t. It has shown me examples of bravery and those who live with some of the most superficial values. It has shown me that some of the saddest afflictions are not always physical ones. Sometimes it takes new eyes to see the world, and people, in different ways. Sometimes it takes life changing events to realise life affirming truths. Sometimes living with diseases like Autoimmune Diseases are some of the best and worst moments of life. “At least I don’t have to worry about what I look like anymore…!”