Here is a write up that I wrote in my personal journal dated March 12th, 2019 – Titled “So Many Lessons” I thought that I would share it as it can help you, my readers, to understand why it is that I had to take a few days off from my writing and spend those days in self-care mode…. some of my thinkings are full of honesty.. some play around with mixed messages and meanings & then there is the diary entry that flows onto my March 12th journal page the truthfulness that I harbour deep within me… but truthfulness that is rarely show.
It is only early March of 2019 & yet I feel that there has already been an influx of ahhh haaa moments being thrown and thrust into my life, my world and the environment that I am treading water in.
There was an occasion this past month when a written pictured quote found its way to my desk and writing mind… there have been a few of these moments actually that have occurred throughout not only in this past month but also over the past few months…
Maybe the universe is trying to get my attention, maybe there is a lesson in the writings that find me and my thoughts on a day to day basis.
I write today about the following symbolic worded verse:- “The hardest pill I had to swallow this year is learning how to pick myself back up and cope without the people who I thought would be in my life for a long time. I had to realise that you have to do shit for yourself because the only person that will put you back on your two feet is you.”
Hmm for me the I was initially scared and afraid of what my future without my thought to have… supporting and loving support system was a path and a future that I ignored and refused to see.
The very thought of going through life and the varying degrees of my Primary Progressive Multiple Sclerosis ailments and inabilities scared the absolute bejesus out of me… I was so scared and I cried a great deal; not to or with others but so very heavily when I found myself in my alone time…
The more I cried the harder my understanding of what was happening to me and I began to wonder where I sat on the care factor meter of those around me… I initially struggled so hard and the more I struggled the more I looked for the arms of comfort of those around me… I can’t sit and put an understanding of why I feel that others seemed as though they were distant and or distancing themselves from me… but there is my speculation of why this was happening even if it was and still is in my mind… whatever their reasons I do strongly believe it has a lot to do with medical diagnosis of Primary Progressive Multiple Sclerosis… secondly I feel that the people around me are struggling to see their lives without me… or at the very least… they have not come to terms with what is going on and are preferring to live in their not informed and educated bubble.
I often get told how strong people think that I am… often I am asked why I feel that I have to be who it is that I am… when asked what is meant by this question I get told “why do you have to be so strong? Why do you have to live as though there is no one other than myself in my world? Why can’t and won’t I let people into the ins and out of what I am going through? Well, I have asked myself these same questions…
I for so long have hated on myself for so long and I have begged myself to find an answer or 3, to build a resolution for what I in my mind find that I am struggling with… but there was a point in my life when I gathered my thoughts and the thoughts of the many voices around me and simply threw them off the tactical side of my life’s sparring mat and said to myself out loud in a voice that was full of moments of self actualisation and self realisation that “I have to be my own worlds inhabitant.. the person that I could not only rely on but would guarantee that I would be present in my own life’s here and now… standing open hearted, open minded to an unknown reality that was with the utmost certainty starting to engulf my life as I knew and am now knowing living today.
I knew in these moments and in the days to follow that I had realised that I was the only person that I could fully rely on… so many people have told me over the 5 years since my “actual date of my Primary Progressive Multiple Sclerosis diagnosis “ that my stubbornness & my struggles and well defined inner strengths are going to be the weakness that see’s me and my heavy load crumbled to the ground….
There is a big part of me that knows that these voices are speaking the truth… I know oh to well of the existence of the walls that I have built up around me… These walls I myself know are built out of sheer determination to ignore the ignorance’s and uneducated thoughts of those around me… the cement that holds my walled in structure together is a mix of the many years of seeing the true intentions of others in the accountable moments that they chose to ignore… maybe ignore is the wrong world… but I did get tired of watching and hearing the distance and disassociation of those around me… I learned the hard way to see that the only hand that was going to raise me the grips of my Multiple Sclerosis mooed diagnosis was me…
What I wanted and what I have always wanted from those around me was and still is the guarantee of the fight to keep me healthy wouldn’t be my life’s walk .. alone and left wondering where my life would be taking me.
I gathered information and tried with all my might to help educate not only those around me… but I too wanted to read all that I could to educate myself… I needed to know what plan my body was signing itself up for.
I tried and I tried and I tried to give myself the community of support that I knew I would eventually need… I wanted to scream and I wanted to yell… and I tried with all that was in me to open the floodgates to my vulnerability’s… there I was in the early days of my diagnosis alone in a room full of people… not even my tears would give me the right to have a moment.
“If a single person is surrounded by other people, especially in a social situation such as a party, you can realize that you don’t have a real connection with any of these people. When you are alone, you are not confronted with the superficiality of your relationships. But when you are in a room full of your friends, you can suddenly realize, “I don’t actually like these people. I have nothing in common with them. They don’t really KNOW me, who I am. Why do they seem happy while I’m miserable?” You can discover, unhappily, that you’ve outgrown your social circle which can make you feel isolated and disconnected.”
I didn’t just say that I dislike my community or the people around me… what I did say is that I dislike seeing the connection that I have with, and for them.
“I think it’s better to feel content alone… If you’re content, you are closer to happiness than feeling alone in a crowd. Being alone and empowered is far better than being in a crowd and feeling lonely and sad…
I am most definitely not sad lost or depressed… the very descriptive words that I have heard since my ppms diagnosis… over and over again. I have just learned other ways to cope and other ways to fulfil my day daily journey and the daily symptoms that plague my walk and direction.
“I often find myself alone in a room… alone with myself, my computer and my thoughts. My mind is always bustling with thoughts, possibilities, questions and curiosity whether or not I’m with people. I always wonder what other people think or like other people’s perspective on things; I think it’s awesome to get a glimpse into someone’s mind and see alternate points of view. Many of these moments there are actually living and breathing people in this same room… why do I then see myself as being alone??? Well, when I look up I see nothing other than their eyes in my diagnosis; them taking on a role within my existence where they spend their moments wishing that it wasn’t my life’s reality to have my body living with “My Story” at the helm.
I give a lot of credit to those around me for the thoughts and disbelief of my life now being in the hands of my ppms diagnosis but I want more than anything for them to see me minus the world that they font truly see or know.
Imagine sitting in a crowded lunchroom by yourself. Hundreds of conversations are taking place, yet not a single one included you… I know that my community members are concerned and scared for what my tomorrow’s will actually bring to my now wavering but still strong well-footed foundations… but I long for them to see me.. just me… nothing and no diagnosis that describes my life’s here and now.
The deafening silence can bring a person on the brink of insanity. I spend hours hoping that I won’t have to endure this anymore, or even for much longer but a part of me knows that’s this deafening silence can be cruel, and being different in the eyes of others can be a death sentence when those very people sometimes unknowingly fail to see me for who I am, the me without the Primary Progressive Multiple Sclerosis diagnosis.
For these reasons when I am alone; I can ignore the images, the sounds and the disconnections of others and I have probably learned way to well the skill of distracting myself with my daily workload, my writing, my blogging, music and even reading. Being alone is where I am most comfortable, and probably the most self-aware… I learned the art of convincing myself that loneliness doesn’t matter … but deep within my way down into the burrows of deeply hidden soul, I know that the way I feel does truly and deeply matter to me.
It’s a lonely world living out the day to day comings and goings of my unpaved road… something to be said for a life being lived in weakened moments of loneliness… but never in the path of a life having room for boredom.
So in the wrapping up this daily write; I will say this “Solitude is a highly judged area. Society lays down a lot of rules here — there are definite rights and wrongs on how much time you should spend on your own. And people don’t hesitate to lecture you on what those rules are if you are caught enjoying a bit of peace and quiet. If you’re not careful, you can find yourself being dragged into a social situation against your will and for your own good.
It wouldn’t matter so much if it didn’t come with the risk of being characterised. A loner is ‘sad’. A recluse is a ‘billy-no-mates.”… I not a loner I just like my alone time… I can think, I can write, I can be productive… and I can find my solace in my many daily writings… I don’t feel “all be”.. I just see my aloneness in my Primary Progressive Multiple Sclerosis diagnosis… alone but no afraid… living moments of my day in solitude… and many more in the company of “My Story “… I only wish that I didn’t feel the disconnection of those around me purely because it would be easier for me to tell them that I am not the person who is struggling with what is my now ppms life.
Thank you for reading my March 12th very personal journal page… it may be honest and very raw but it is for a big step in learning to shed some light on the vulnerability that I work so hard at hiding…
Author. Tanya Kelly