I just spent another five days in hospital, I can’t tell you how often in that time and since I have heard ” but you look good”. People don’t often say well you look good on the outside but how are you really feeling on the inside. It is hard to explain to people when you live with a mostly invisible illness how tired our souls become, how weary we truly are.
We not only fight our physical illnesses, the cognitive issues, the physical pain, the other physical illness associated with our Dementia, we must also fight our emotional and mental weariness as well. Our Emotional and Mental weariness is not the same as Depression, although few understand that as well. I said to my doctor yesterday, I’m tired, my body, my soul is tired, I am getting wore out, I don’t know how much fight I have left in me. I have been fighting hard for 6.5 years to have and give myself the best life I could despite my diagnosis, despite all its challenges, and despite having to fight society to be understood for few know or understand any of the early onset issues we face. So I and many others fight with everything we have in us for every good day we can, we fight physically, emotionally and mentally, and truthfully there is no medication to help us with that fight. We have to find it deep within our souls, deep within ourselves. We are a strong group of people, I have never met so many people who are so driven to fight for themselves for their good days.
So what happens when we reach that place, that place where our souls are weary, where we know somewhere within ourselves that we are losing the battle and that we don’t know how many more times we kind find enough fight to keep going? I am asking myself that these days, how many and how much more of ” the fight” do I have in me. I have much I still want to do and finish, but how much does my body and soul have left? Again not depression, its the reality of living with this type of diagnosis. I am happy, I am content, I find joy every day, even days like in the last five, but in all of that is this part of you at the core of you deep in your soul, where you look at how much more you can do, how much more can you keep yourself standing. My body is dying from the outside in, its not visible to you, but I feel it, I feel it in ways that as much as I try I cannot explain to you. I understand that when my husband was dying that he didn’t want anymore, he just wanted peace, I totally understand that. I understood when my mom said I’m done, I don’t want to do this anymore, her soul was weary, her time had come and she accepted it gracefully. I understand it at an even deeper level now that I did before although I always had a certain understanding. I always believed that a person knew when they were ready and when peace became more important than the fight. I understand it from the perspective of my soul. I know I am not done fighting quite yet, but I know the time is getting closer, to when I just will not fight anymore.
With every setback, with every complication it takes away little more, it makes it harder to fight to come back. My doctor said yesterday that this last year has seen huge challenges with my health and has been extremely difficult and this is another huge set back, more things to overcome. He knows I am getting worn out, he knows I will let him know when I have no more fight in me.
But I hope somehow before I am done, that I can make people think and understand that saying someone looks good, instead of being able to have the deeper conversations about how they really are, actually does them more harm than good. We place too much emphasis on how people look, then we make assumptions by what we see on the inside, rarely to people look beyond that anymore, deep seated conversations are things of the past. Everyone runs around trying to pretend they are ok, instead of being able to really speak about the pieces that are real, the things you keep deep within yourself, and yet those are the very things that truly make us who we are. I often wonder if that is because people are so busy being busy, that they no longer have the ability to even know how to look within themselves let alone be able to share in someone else’s reality, so its easier to just pretend we are all fine.
I hope that people will learn to be able to say to someone, its ok if you’re weary, we will sit with you in your weariness, and until you no longer want to fight we will sit with you and help you find the joy and laughter when that is what you need and then when you longer want to fight with you we will sit with you then too.
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|Added: <p>But I hope somehow before I am done, that I can make people think and understand that saying someone looks good, instead of being able to have the deeper conversations about how they really are, actually does them more harm than good. We place too much emphasis on how people look, then we make assumptions by what we see on the inside, rarely to people look beyond that anymore, deep seated conversations are things of the past. Everyone runs around trying to pretent they are ok, instead of being able to really speak about the pieces that are real.|