It’s easy for me, relatively speaking. I’m living my illness. I’m at the centre of my world of disability, illness, doctors, tests and hospitals. I get on and do the best I can each and every day; I deal with the pain, nausea, dislocating joints, wonky autonomic nervous system, exhaustion and fragility. I live it as it’s a part of my everyday life. Although I’m more than my ill-health, it forms a big role right at the core of my being. A trip to the hospital, more bad news or time in A and E, all form a part of my ‘norm’. Admittedly it’s not particularly normal, whatever that means, but it’s my reality, so I do my best to deal with it, smile and carry on regardless.
I giggle at my dysfunctional body as humour is my only way of coping: I laugh at some of the eye-watering tests I’ve had and I smile when my pain is ripping out my heart and soul as I no longer have the energy to get angry about it. I take my disability less seriously these days, not because I don’t care but because it helps me to stay sane(ish) as well as helping me keep some perspective. So, in the middle of my world, it’s easy being me. It often is for the ‘sick person’ as they have a first person perspective on their experience. It’s not quite so much fun for everyone else but it’s easy to forget that sometimes.
I’m not on the outside, looking in through the window of my life, feeling helpless, disempowered, impotent and unable to change or fix things. I live it every day so I’m used to it, I deal with it. I’m not watching my decline, worrying about my next complication or procedure. I’m not seeing my falls, wobbles and injuries from another perspective, nor am I seeing the dark, hollow look in my eyes; I know it’s there of course, but I live with it rather than watching it, grieving it or feeling unable to do anything about it.
It’s easy for me to forget how hard it is for others to see me, to fear for me and to struggle with their emotions. I soldier on, find humour in it and stoically smile when things get bad as I hate to see those close to me worry. Yet, intuitively I know I’m not kidding anyone, but I do it anyway. I won’t buckle in their presence, partly because I can’t (see below), but also because I don’t want them to feel worse than they already do. Stoicism has turned into an art form for me over the years. Admittedly it’s a destructive art form as it’s kept me imprisoned behind a façade of ‘keeping it all together’ rather than allowing my true pain, fear, grief and anger to rise up freely to be expressed and acknowledged.
I feared being a disappointment to others and I feared them seeing me as ‘less than’. I wanted them to think I was whole and complete and everything was well in my world as I feared them seeing the truth would lead to a spectacular collapse as I had nowhere left to hide. In my mind cracks equalled failure and failure equalled more pain.
A dear friend recently broke down in tears over coffee, she took my hand and expressed her worry that she feared each time she saw me would be the last. She felt I was becoming translucent and my energy was losing its light and sparkle. I was shocked and upset at her insights, not at the truth of her observations, but because I hadn’t really thought about the deep-reaching implications of my ill-health on those I love. Seeing her bereft, grief-stricken face and feeling her love and compassion flooding out of every single cell of her being had a profound and lasting affect on me.
Admittedly I’m going through an exquisitely challenging time at the moment and I feel weak; my zest for life feels more like a damp squib and my spirit ebbs and flows in and out of my body. I have days when I feel closer to death, not because I particularly want to die but because I simply don’t have the energy to carry on. However, those moments pass and intuitively I can still sense my strength, fight and tenacity will return with more robustness but for now I’m delicate and fragile, and until that moment in the coffee shop, I really hadn’t considered just how hard it is for those around me as well. I’m not, by nature, a selfish or self-focused soul but being ill has shifted my focus and I’ve been less aware of the impact I’ve had on others. I’ve always tried to tread lightly through life but I’m not anymore.
In that moment I felt the depth, passion and genuineness of her outpouring of love and grief, both of which walloped me in the solar plexus like a wrecking ball crushing a prized dolls house; as the wooden frame of my soul splintered into dust and the beautifully crafted miniature furniture twisted and smashed, I realised just how much pain I was holding inside. At the same time, I began to truly appreciate just how hard it is for those close to me to see me as I am. The dolls house is my façade and it’s not real but I’ve tried to preserve it all the same as it’s been my way of trying to cling on to ‘what was’ and ‘what could be’. I can sugar-coat it in analogies and metaphors but it’s denial pure and simple.
Now, most people who know me know I’m not a particularly demonstrative soul when it comes to outpourings of love; emotional constipation has nothing on me. I’m ferociously stoic and I fight so hard to contain my inner emotional turmoil. However, over recent months this has started to change. Firstly, a profound exchange with a talented psychologist who stopped me dancing around my feelings and made me face them followed by some incredible acts of love and generosity from friends pushed me to the point of my own ‘broken threshold’ and I let go. I stopped fighting and cried.
I don’t just mean tears leaking from my eyes but I allowed my heart and soul to cry, to grieve and to breathe for the first time in years. I let go of the safety rails and prison walls I’d built for myself as acts of self-preservation and I faced the rawness of emotions rushing out from every pore. I did physically cry which was evolutionary for me: allowing someone else to see my fragility torn aware the last remaining remnants of the façade.
I’ve always thought open displays of tears would make me a bit of a ‘girl’ but the release when I cried was beyond even my wildest dreams and fears. It’s important I mention fear as fear has been the driving force keeping me from expressing my emotions. I’m not sure I could articulate or explain those fears but, in the context of these words, they don’t matter. Fear is a corrosive, erosive and divisive force that erodes the soul and destroys both creativity and a sense of interconnectedness. I feared being vulnerable as I feared being me. I feared being ‘less than’ if I showed my fragility as I feared my fragility (I wasn’t being judged by others); the buck stopped with me.
Acknowledging the role of family and friends in my life is important as it’s easy to take them for granted. I’d be lost without them and I’d feel the acuteness of my suffering more intensely without the love, compassion and patience of those around me. Allowing others into my world and allowing them to see the truth behind my façade has been unquestionably challenging but it has been a profound and powerful step in my own personal evolution as it has brought me closer to life and it’s brought life closer to me.
Recalling that moment in the coffee shop, tears spring to my eyes and I feel my friends grief and pain as my own. In many ways her courage to let go and say what she felt so deeply inspired me to do the same. It’s a steep learning curve for me but I’m keen to let me out and to show the depths of my appreciation and gratitude to those I love by being wholehearted, genuine and real. Stoicism helps to a point as it helps me cope but it leaves me cut off and isolated, it stops me from being self-compassionate as I give myself such a hard time all of the time.
My friends’ tears were a gift as they have woken me; my aim now is openness, self-honesty and love. I’ll still have times when stoicism and my smile are the only defence mechanisms that help me through a bad day but I’ve finally realised the value of letting others in as well as letting me out. It’s time to be me, me and nothing but me. It’s also time to acknowledge the love and support of others and the best way for me to do this is to stop being stoical and let them in…