What is going to happen to me?

I have lost count of how many times I have asked that question, but it is probably well up in the thousands, maybe millions by now.

I have said it to my husband, I have said it to my doctor, I have said it to my specialists, I have said it to some of my closest friends and I have said it to myself  more times than I care to remember BUT most of all I know I will ask it many, many more times before I am done.

It is the ONE question that continues to haunt those of us who must live with chronic illnesses and especially illnesses which are degenerative and can progress over time. Everyday we wrestle with the unknown and the unknowable. I have also learnt that no one I have ever met up to this point can ever tell me the answer with anything approaching certainty. Is this as bad as it will get? Will it hurt more than this? Is this new symptom going to stay? Will I progress quickly or slowly? Will I be able to have some sort of quality of life? Its a mine field of emotions and we must fight constantly to try and stop ourselves from going down these dark alleys as they fill us with fears and questions and we can often get quite lost unspeakably scared.

I can remember asking myself similar questions when I was a younger person, and able bodied, but I remember it being said with  a lot more hope and excitement than when I ask these questions today. So what do I do? Do I stop asking the question? Sit in a state of denial? Enjoy whatever I have for as long as I have it? Well, perhaps that might be the very best choice I CAN make for myself!

Nobody ever really knows what lays ahead of us in so many areas of our lives. Although we dearly want assurances and hope that life will play out the best hand it can deal, the truth is that we will never know and we will have to learn to be comfortable with never knowing. We are told so many times we are told to ‘live in the moment’ but what if the only way we cope with the PAIN of this moment is the hope that it will hurt less tomorrow?

I heard the phrase that we can learn to live with “hope without expectation” and for me that has become a very comfortable place to rest this well worn and difficult question. So now I live with “hope” that I will have opportunities to be able to enjoy the life I have left, that I will have chances to give my friends and loved ones the best I can and with “hope” that there could be improvements, medications and a cure without having “expectations” of what the future needs to look like.

No matter how many times I have asked my husband “What is going to happen to happen? He always says the same thing over and over. He smiles and hugs me and he says, “whatever happens, we will cope”. I know its true. I know that is all I can ever hope for and I am so, so glad he says it no matter how many times I ask. It’s the only answer I really want to hear.

Gentle hugs,


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