There is a constant knot in the pit of my stomach. Hidden in the dark murky place where emotions mix and churn as they evade logic and reason. Holding onto one end of the knot is the person I am now, tugging at the other end is the person I want to be. Accepting I have to let go of the person I want to be, is in theory, the pathway towards the chronic illness jackpot of psychological flexibility.
But for so many with ME/CFS acceptance can feel counter intuitive to the ongoing struggle for recognition and advocacy for research leading to diagnosis and treatment options. It can also feel like giving up on hope that this won’t always be your life. Acceptance and pessimism can feel too closely related. The complexity of the tug of war between opposing sides means the same cognitions that loosen the knot also tighten the bind. For me, acceptance isn’t tangible or all-encompassing its temporary and conditional.
For today, the tug of war is over my 4 draw filing cabinet. Just a plain, utilitarian, silver workhorse that I’ve had for over a decade. Its taking up too much room in my corner of the house, so it’s time to give it away but it’s about more than just economy of space. It needs to go and yet I hate that it has to go. You see it is filled to the brim with work files from businesses I had before I got too sick and businesses I tried to start to accommodate my reduced energy levels and future plans for when I wasn’t so sick. It has taken me many years to figure out holding onto all that wasn’t making me feel positive about the future. The filing cabinet is draws full of loss and self-recriminations and unrealistic expectations. It’s miniscule in the scheme of tectonic events happening around the world and yet it’s enough of a personal earthquake to add to the tremors from everything else.
I took the first step and gave away the last 2 work shirts I was holding onto in case things turned around. You know the type, non-iron, used for uniforms from hospitals to real estate agents. The type you can pull on at a moment’s notice if you need to look professional or employable. In giving them away I was accepting recovery isn’t going to happen at a moment’s notice.
The mantra for now as I sort through the files for shredding, chucking or keeping is to accept that this process will entail waves of resentment, anger and disappointment loss and frustration, the usual kaleidoscope of messy emotions. But once done it will be better than being slapped in the face with those emotions every time I see the filing cabinet. I accept that right now I am better off not seeing all the things that didn’t work or all the evidence of the ways I incrementally kept scaling back my working life to accommodate for less and less packets of energy. I accept I am better off not seeing the evidence of endless hours of precious energy expanded on experimenting with ways I might be able to earn money or use my skills but my body and mind kept rebelling more and more.
I don’t need to see a representation of the years of fighting against the reality of my declining health or all the times I refused to manage or pace myself and therefore made things worse. I can let go of all the things I did before I accepted it was a severe biomedical disease and that I didn’t require a separate diagnosis to explain the multi system failures. I understand that ME/CFS is the reason I couldn’t do my work not that I just couldn’t find the work that would fit ME/CFS. So therefore getting rid of the filing cabinet is a pledge to bestow the same understanding and kindness I’m seeking from others upon myself.
I accept I don’t need to hold onto all those work files just in case things start to turn around tomorrow. I accept that if my health improves I will have to slowly update my skills and tools anyway. Holding onto to outdated resources and information isn’t helpful.
My new reality doesn’t have to be without hope. Hope is a choice – hope to dream- dream to hope. It just has to be without judgement. I can give myself permission to carve out a corner of the house that doesn’t represent old dreams and goals, its not a space for my old identity or the internalised expectations of what makes you a valued member of society. It has to represent what I value now and what lets me have moments of peace.
Acceptance as defined by those with other conditions or situations doesn’t have to be part of my “I should” list. I accept I don’t have to fully untie the knot. Ironically, my psychological flexibility comes from accepting the tug of war is part of this journey (sorry can’t think of better word than journey) and therefore I accept both – acceptance for me is both the key and the lock.
Obviously I stumble on and off the pathway to peace so happy to receive any suggestions. Let me know what works for you.