There are quite a few people whom I have long given up trying to explain some important concepts because of their inability to understand and, more importantly, their inability to put aside their own agendas in an effort to better understand me or my life.
To those people I simply just nod and say no more. It really is no longer worth my time, effort and any side effects that result.
To the rest of the world I can but try to explain as best I can in the spirit of understanding and in the hope of educating others to better respect and empathise.
If you ask those of us with these diseases what some of the hardest realities to accept are I feel quite certain that chief amongst them are the loss of control of our bodies and the loss of choice in what we can and can’t do. At no time is this more profound than when it pertains to events and socialising.
I have missed out on so many special and important events in the past decade or more simply because I have not had the health or strength to do so. Whilst I freely acknowledge how difficult that must be to the person that I have had to cancel, postpone or turn down it is by far more devastating on me. I say this without malice, selfishness or intended slight.
Being the one who does not get to share a happy moment, event or make a special memory is truly and utterly heartbreaking!
As I look back on the past decade there are so many occasions that I have missed out on that I try not to think about it too often to do so can cause the most intense pain imaginable.
Missing out on weddings, birthdays, graduations, births and celebrations is a far greater loss to me than it is to the person who will still have a happy and wonderful time regardless of whether I am there or not. Therefore it is simply cruel to use such a thing to try and make me feel worse about not attending. It is for this reason that I have always not understood people’s reactions and anger when I have not been able to attend.
I have been told that “… it must be your choice…” not to attend and that ultimately it is because I “… didn’t really want to go…” that I have canceled or declined. I simply won’t respond to these accusations anymore to as it shows the complete lack of understanding of the situation and a lack of perspective.
There is a huge part of me, the inner me, the once able me, who would dearly love to travel, dance, rejoice, celebrate and be present at so many things that now suffers as a direct result of losing the ability to choose or have command of my own body and it’s capabilities.
I can no longer rely on or predict what this shell of a body can do, or will do, and this has led to feelings of ultimate betrayal and inner suffering the likes that most people can not even Fathom!
As I look back on cancelled tickets, lost money, unrefundable events, missed friendships, hurt loved ones and deep disappointments I can no longer even calculate the emotional toll that they have.
I have often called upon my husband to be the one to call and cancel as it has become an all too familiar pain for me and I simply can no longer bring myself to do it. Is this a cop out? Yes, Probably But it is a very justified one.
As a result I must keep reminding myself that I can only live for today and in the moment and this is the only way my mind and heart can find some peace in this life. Trying to plan for the future can be a disaster waiting to happen and has the potential to throw me once again into despair.
Reminding myself that I can only do what I can and by assuring myself that “… I am enough…” has been my mantra for over a decade.
Do I wish things were different? Absolutely! Do I wish my body was more reliable? Every day! Have I really tried to do things or plan things? Indeed! But nothing (nothing!) removes the fact that what will happen is beyond my control or predictable, no matter how much I may want something to happen.
As I result I have not been on holiday for nearly a decade, I haven’t had a birthday party or gone out for dinner in years. The last few years have seen health challenges increase so even the shortest outing in the car can be taxing. This does not make for many joyous events or outings and it can feel incredibly heavy and daunting.
A quick look at social media and I am inundated with concerts, weddings, birthdays and holidays that I would dearly love to have for myself too. I have had to turn away or develop a completely altruistic outlook on the world and be happy for everyone else or perish in the pain and torment.
The able bodied world is so steeped in the ideals of free choice and personal control that it is almost pointless trying to suggest otherwise, particularly if they are deeply committed to their narrow view of the world, and attempts to explain anything that contradicts them is quickly rejected. Thus I have had to develop extremely thick skin and robust principles of my own. Today those principles are best described as ” ..I can not invest in the assumptions and appraisals that others make of my life, my abilities and who I am, but rather become deeply committed and confident to my own truth, strengths and self belief…”.
Ultimately when it comes down to the freedom of choice than I must always choose to believe in me.