Will we ever catch up?

In life, it's quite difficult to be completely objective, because no matter how hard we try it is near impossible to detach ourselves from things that impact our lives. When we browse magazines we think about whether we like or dislike the dress or shoes, when we see pictures of travel we immediately link it to our adventures &/or whether it's on the bucket list or not, novels we imagine how the story might unfold if we were the novelist or a character. Be in a fleeting thought, an opinion or an action, most people automatically make a link and indirectly or not, relate ourselves & our situation. For me, TV series & movies are no different. 

I have been watching a great series called Oprhan Black which is a sci-fi thriller I guess. It is interesting, fast paced and has got me thinking, but also feeling a bit frustrated. Essentially, it is a story about humans clones and loosely explores the science about their creation and existence. I know this is fictional and I'm aware my imagination has strayed far from the storyline, but the fact cloning humans is not unimaginable has left me wondering where I stand in this world of modern science and medicine.

 

If you think how big of a feat cloning would be, and that it has already happened with Dolly the sheep, and god knows what else, I find it almost incomprehensible that there is not more that can be done for my illness or anyone else's for that matter. How is it that we are so far advanced in some aspects of science, yet so many people continue to live their lives struggling and suffering without a cure or even ease of access to treatments?  Does this seem as frustrating and ludicrous to you as it does me? 

I feel like the difficulty today with medical science is there are so many areas and conditions and illnesses that need attention, research and funding to improve the outcome that it is impossible to get to all of these. There is also all of this undiscovered and constantly evolving science, like cloning, that holds a place for future generation which we cannot ignore. Foremost, the life threatening conditions are where I believe science should be focused on, but in an ideal world it would be great to see the life altering illnesses get some research and interest too. 

As someone with a stubborn personality and having more than one life altering condition, I am always looking for the next piece of the unknown puzzle. I wait to read the next medical journal or research to be released because they could offer me something new, but truthfully the wait is long and slow and often not groundbreaking. There just isn't enough time, money, manpower and research to go around and it is nothing less than a real shame.

So whilst I binge on my new favourite fictitious TV show about clones and overthink everything in my nerdy way, I can't help wonder how and when will humans ever catch up with medical science to a point where there are solutions and answers to human medical mysteries. Probably just a distant dream or fantasy, but then it was probably just a dream to clone something too...

POP goes the...

At times I feel like I am in bubble wrap. Tucked in and nestled beneath the protective layer it provides to prevent me from breaking and keep me out of harms way. Some people are willing to give me a go and pop the bubbles layer by layer, while others are so scared at the thought of me breaking or the unknown response they dare not try. They cover me up and wrap me like a precious gift and make sure I am safe, which is nice... but the thing is, I don't always want to be safe. I want to have the option to choose whether to be safe or not. 

I have always aspired to be to a caring, compassionate & trustworthy person, with one of my biggest enjoyments being helping people, be it physically, emotionally or in another supportive manner. Before becoming unwell I tried to be there for my friends and family, I was approachable, and I had no bubble wrap. I was free to choose when and in what capacity I could be there and there were no assumptions or fears of my ability to cope or requirements of protection. I felt needed. 

Over the last few years there have been many long periods where I have been physically & emotionally incapable of helping anyone, in any capacity. But in amongst these difficult times and more recently, I feel like it's time to let everyone know, I am here. 

I am well aware that people surrounding me choose to bubble wrap me out of kindness and thoughtfulness in an attempt not to trouble me with whatever is going on and I am so grateful for the compassion everyone continues to show. Yet on the other hand, I sometimes feel a bit dissapointed that I am not privy to these decisions surrounding my coping abilities and I feel sad that I have not had the opportunity to help people I care about in their times of need.

Dealing with medical & health related stuff has sadly become the majority of my life and daily routines but I am still the same person, not just my illnesses. Yes I have struggles in my life, but so does everyone else! And just like them, I continue to want to keep updated on real life events and the important things in the lives of everyone I love. I don't want to be placed in bubble wrap because it is no better for me and I am no better for it. 

Chronic illness doesn't go away overnight or even over years so I've got to roll with the punches and keep living to the best of my ability. I would think I would speak for some other chronic illness sufferers when I say that we want to be there for you. I want to be there for you.
I want to celebrate and commiserate with you, I want to hear about your bad haircut or stupid boss, I want to know how your family or children or partner is. I get excited to hear you excel in your career or studies, I love hearing about your crazy nights out or mischief. Ofcourse at times I feel a little jealous of your wonderful news, but that does not mean for one second that I am any less happy for you or grateful that you shared your stories with me. It just means I've got to work harder to get what I want and that in the meantime I will enjoy living vicariously through you, hoping for better days.
I want people to trust in me that if I cannot handle what is going on, that I will inform them I need some bubble wrapping. Stat! 

I want the choice & autonomy to make decisions about whether I can handle the privilege of your thoughts and feelings. I want to live again and this is a big piece of my life I want back - to be helpful and to be there for anyone that needs like so many have been for me. 

So I ask anyone reading this, anytime you have some news (good or bad) that you think you would share with me but are unsure, don't think about my bubble wrapping...pop it, rip it off, talk to me.

Let me try to be the wonderful friend you have been to me. I am different in many ways, BUT I am also very much the same. 

xoxo