The greatest gift my illness has given to me is serenity.
The chance to find it, and recognise when I need it; the value of it and to learn that it's all you need. And ever since then it's as if physiologically and mentally (spiritually for some) my body has a mechanism to remind me of when I've lost it, so I can get it back. That's why I consider myself the luckiest person on earth, no matter the symptoms or the struggle. Because I have peace. The peace of knowing that tomorrow could be my last day, and that I'm truly okay with that. It makes every day worth living more than they ever were before. For many of us with chronic illnesses which are severely debilitating, to the point we cannot manage the simplest day-to-day tasks, you come to a point where you realise that having no quality of life if the same as being dead. Except that when you're dead you're not in pain. To come to terms with this (the idea that you may never have a 'life' again) you face the death of the 'self' - death of goals and dreams - you see the demise of your relationships, friendships, and everything you once understood about yourself falls away. What's left is the most basic form of yourself - the relationship you have with you. There is nothing else when you lay in bed for the seventh month in a row staring at the same four walls. Nothing. Then comes the depression. For almost all of us with chronic conditions they will be characterised by depression as a symptom, let alone the depression that comes with the illnesses' challenges. Double depression. Enter the advanced symptom: 'suicidal ideation'. As they call it. It's the bottomless pit of hell that some people remark as 'sadness' because they've never been there. In my case I also had a healthy dose of diagnosed PTSD to go along with it. Nothing in the world was harder than keeping myself alive (not giving in to the pain/fatigue by not eating/drinking, as opposed to physically taking my own life). But I was lucky that I always knew it was the illness wrecking havoc. Many do not and we see suicides in our support groups often. I finally understand why we say 'Rest In Peace'. They had had enough, and I wish them an eternity without feeling pain ever again. Then there are then innumerable additional challenges of being chronically unwell, which although universal, vary for individuals. Mainly chronically ill people suffer with the classic misunderstanding from others all the way through to a complete a lack of empathy from even loved ones, to downright denial that our illness exists at all - again, even from loved ones. No one would laugh in the face of a cancer patient having chemotherapy or an amputee facing the loss of another limb, but if you have five chronic conditions, simultaneously, for some people your life is up for debate. Their opinion of your health is how ill you are. Their say goes. They can tell you you're not disabled enough for a parking permit. That you're well enough to go to work. Somehow, those who have never experienced a day of your pain are those who know exactly how much you can manage. The loneliness of the realisation that some people who should love you, or have said they love you, actually don't, is one of the hardest lessons, if not the hardest, to learn. We assume everyone will care about the loss of our life. But it really is true that you 'come in to this world alone and you leave it that way'. Love is not guaranteed. And so you'll learn to appreciate it when you really have it. And you will love like you've never loved before. But I didn't want to write about the challenges. Whilst I've always wanted to write/blog about my journey through illness I could never bring myself to. So, just as Prince wrote 'Nothing Compares To You' for smoking, and Elton John wrote to cocaine - this is a love letter. Not a goodbye, not acceptance, not acknowledgement - a love letter. Because all that I've listed above has bought me to this point. A point where I can absorb illness into me, to my new 'self', and fall into a place of complete and eternal gratitude. So, thank you. Without you I would continue to be blinkered, unaware, unsympathetic to what one in four people in the world are struggling with. You have made me unapologetic and resilient. But most of all you've taught me my own self worth, and no one will be able to take that away from me - something people search for their whole lives and look for in relationships, jobs, hobbies. I have it regardless of what I gain or lose in life. I do not walk around crippled with self-doubt, anxiety or wondering 'who I am' or 'what I'm doing with my life'. You gave me the time and space to consider that. In a way that's giving me another chance at life - the chance to do it properly this time. To not waste time. So, after climbing the mountain and seeing nothing but grey rockface in front of me, feeling the air getting thin with the altitude and finding it hard to breathe, and not being able to lift my limbs above my head from the pain knowing I have to, you finally said to me one simple thing: 'Sink or swim'. I've reached the top now and I've seen the view. It's a view that was worth every moment of pain and bead of sweat. Thank you for everything. Thank you.
4 Comments
Shamael
21/2/2016 09:53:37 am
Great writing such as to pour one deepest part of soul .. life met us differently with half of dreams and harsh realities.
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Paul Senior
24/4/2016 03:25:14 am
Although my journey is different I so endorse your insights. When I was diagnosed with an incurable cancer I spent a lot of time focusing on dying and death. This was a maudlin depressing encounter but one where I sought to understand my own personal wake up call on mortality. Over time I realised that understanding that end point meant I could simply leave it to take care of itself. I could focus on life and living. I have found a richness about every day and every encounter I never had previously. I am creating memories with my two children and with friends. I am focused and positive about all this. Yes there are days, weeks even when I am not fully fit and in pain. But that is a by product of the illness and not the point of it.
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Thank you so much for your message Paul! Your comment "But that is a by product of the illness and not the point of it" really, really made me smile. Because I know exactly what you mean. I am so glad you've reached a place where you can process what's happening in such a wholesome way. I imagine it can be quite a relief knowing that it's possible to not only endure the worst of times with such an attitude, but that actually you'll find a completely new one. One that doesn't arise unless you have such an experience, and one that'll change the way you see everything. It's a beautiful thing. I wish you all the best and please feel free to message me any time, even if to just share perspective. Best wishes!
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Paul Senior
26/4/2016 02:36:31 pm
I have found four years plus have gone by since I was given two years to live. I know that this is an extension not a cure but focusing on living does enable me to remain positive. I am retiring this week and came across this Shakespearean quote: Leave a Reply. |
Alainah RookBA Criminology & Sociology Archives:
March 2016
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