What if we viewed lived experience as an asset? As an asset of professional, economic,…
I have been through a lot in my twenty years. I lived a somewhat normal life for fourteen of them – just fourteen years – until my life was inexplicably changed. I am lucky for those fourteen years though, as some don’t get any. It’s true; had one of my doctors connected the dots I could have been diagnosed sooner, approximately at the age of seven, but would we have wanted to know? I have very rare complications, as severe as it can get, so nobody could have predicted this. It’s only just recognised that my condition, Ehlers-Danlos Syndrome, can cause such problems. We never would have imagined the the highs we would enjoy nor the depths we would reach, of which I am glad. I could not have coped knowing I would be confined to a wheelchair, spending 99% of my time in bed, not being able to eat, being fed by a tube into my bloodstream, having a stoma bag, being covered in tubes, enduring regular stays in hospitals, having to stop my education; losing so much of my life as I knew it. I admire people with conditions like Motor Neurone Disease, Huntington’s Disease and some forms of Muscular Dystrophy (such as Duchenne Muscular Dystrophy) who have to live with the knowledge they would lose control of everything one day and that it will kill them. Having said that, I live with the knowledge that my life will be limited and my condition – or the life saving infusion of nutrients into my bloodstream and the line it’s delivered through – will kill me. So technically I’m a ticking time bomb too. We all live with the knowledge we will die, but some of us know how and when and have to live with our impending mortality.
When I first got ill, I was very angry and upset about what I’d lost. You go through the process of grieving for your life; the life you’ve lost, the life you have now and the life you could have had. Not only was I having to come to terms with the complete reversal in my life – going from being fairly independent to increasingly dependent – I was dealing with the disbelief of doctors, who were telling me it was all in my head or that I had a school phobia (for the record, I loved school). I was also dealing with the blame game played by my dad, who said I was lazy and blamed the divorce (and just about anything else he could) on me. It was a really tough time. I wasn’t depressed in the typical sense, when it’s caused by a chemical imbalance, I was reactively depressed; I was feeling that way in a reaction to the situation at the time. I was grieving. We all go through a grieving process at some point or another in our lives. Losing someone, being diagnosed with a chronic illness, a life limiting or life threatening illness and receiving a terminal diagnosis will all cause a person to grieve at one point or another, and rightly so.
There are five stages of grief: denial, anger, bargaining, depression and acceptance, abbreviated DABDA. Everyone’s journey through the process is different and you may not go through it in that order. There is no time limit on how long it takes you to get through each stage and you can get stuck for long periods. There is no right nor wrong way, the process is unique to every individual. The idea was developed for bereavement and terminal illnesses, however it also applies to chronic, life limiting and life threatening illnesses, as we all go through some kind of grieving process.
This is often the first stage. What has happened is so overwhelming that we deny the realisation that our lives are forever changed, or are coming to an end. We go numb with shock. We pretend it isn’t real, try to carry on as normal and forget what’s happened. Life seems so meaningless, pointless, hopeless and we try to protect ourselves from the truth so that we can cope. It can be conscious or subconscious, as the body tries to protect itself from the truth. It’s a temporary defence. The denial staggers the amount of truth we admit to ourselves, only letting in as much as we can cope with. Unfortunately, we can’t stay in this stage forever. Slowly you will start acknowledging the facts and ask questions, and your feelings about what’s happening will surface.
I think of it as the “why me?” or “it’s not fair” stage, as I don’t often feel angry, but I do frequently question why this is happening to me and have days when I feel like it just isn’t fair – because it isn’t. You know you cannot deny the truth anymore and the reality starts to sink in. You get angry, question it all and your emotions run riot. Anger has no limits. You may feel close to the edge all the time and you can find yourself lashing out at loved ones, not because it’s their fault but because you can’t contain the emotion anymore. People at this stage can be hard to care for and be around, because they may project their anger onto those close to them. They may even feel angry at friends and relatives for little things, or no reason at all. Those around them have to remember that they are not blaming them and must not take their misplaced anger and emotion personally. The individual may blame himself or beat himself up too. Just be there, be supportive and try to be nonjudgmental. Beneath their anger is pain and fear and they’re bound to be hurting. Feeling that way is normal, the same as if someone loses a friend or relative, their loss pains them. Don’t beat yourself up about it. It’s a necessary part of the process; though the anger may seem endless, the more you feel it, the quicker the anger will subside. The sooner you acknowledge your anger and give it time to run its course, the sooner it will dissipate and you will progress towards coping with your grief.
The third stage is where the person begins bargaining. “I’ll give anything for….” “Just one more…..” “I need more time”. You are begging and pleading for life itself and the life you had. You get lost in thoughts of “what if….” and “if only….”. We want life returned to how it was before; before illness or a terminal diagnosis, the same way in which a bereaved person will wish to go back to when their relative was alive. Believe me, your beliefs and spirituality have absolutely no effect on whether you will experience this. At some point or another you will try to bargain with life. You beg doctors to try one more thing, you change your lifestyle in some way or you pay for experimental treatments, anything. Guilt often accompanies bargaining, and “if only” can lead to the person blaming himself. We pick at and pour over things that have happened, finding fault in things we’ve done and thinking about what we could have done differently. “If only…..if only…..if only….”. Ultimately we’re searching for something, a piece of hope to hang onto, that can delay the inevitable or give us back what we’ve lost. This is completely normal. Unfortunately, bargaining rarely provides us with a long term solution, but it’s a necessary part of the process.
After pouring over the past when bargaining, depression brings us abruptly into the present. Depression is an appropriate response to grief and loss. You may withdraw, feel like life is pointless, feel hopeless and be in the depths of sadness, wondering how you will go on, or even if you should go on. You may cry a lot, want to be alone and might not be able to see the light. It’s normal, though most see it as unnatural and something you can ‘snap out’ of. You have every right to feel this way. In fact, not to feel this way would be very unusual. You won’t just ‘snap out’ of it, you will slowly adapt and learn how to cope. This stage can feel like it lasts forever, but you will come out the other side. It’s all part of the grieving – and healing – process.
Acceptance doesn’t come quickly or easily. It’s hard to accept what is happening and if you are terminal it’s difficult to come to terms with your own mortality. Nobody wants to die. I certainly don’t, I’m terrified of dying. I still feel angry, still bargain with life and have days where I’m very down in the dumps and am struggling to cope, but I am learning to accept what is happening to me. It’s taken a long time to reach where I am and I’m still working on it, but I am doing it. If I am having a good day, great, then we will make the most of it by doing something. If I am having a bad day, that’s ok, we all have them, so I will do something more manageable or rest and save myself for my next good day. I can’t change everything that is happening; I change the things I can and am learning to accept the things I cannot change. As my health slowly deteriorates, I have to accept each new problem and the limitations they impose. Accepting things does not mean I am ok and all right with what’s happening to me, I am just learning to live with it and adjusting to my new norm. Acceptance comes in bits and pieces, even if it’s just having more good days than bad, and takes a long time. The past is over, and we must readjust. You need to learn to live with what you have and what’s happening and to move forward from there. In order to get the most out of life you need a certain level of acceptance, and through that you can focus on your quality of life and getting the most out of your abilities, not focus on your disabilities. We listen to our needs and change, evolve and move on to get the most out of life. We can’t change what’s happened, but we can move forward from it. We make new connections, reach out and help others, we strengthen our relationships and we start to live again. We are different, but not less than what we were. You can say we’re better, because we have travelled a journey that gives us a better appreciation of life and has made us make the most of things, however hard it seems.
“Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain.” ~ Unknown
To read more about the five stages of grief, also known as the Kübler-Ross model, click here