Is it really ok not to be ok?
Wow, I haven’t posted in what seems like forever. Why? you may ask. Because I’m not sure if it really is ok not to be ok.
Normally I try to post motivational, often inspirational (eugh I hate that, why does being disabled make me an inspiration) posts which (if I’ve done my job properly) create the facade that I am coping and owning my disability. But for the past three months I have been struggling to cope with Ataxia, for the past three months where I have relied more and more on my walking aid, my stick has been missing or cropped out of photos. Deffo not owning it.
For the past three months I have been riddled with anger, frustration and resentment towards myself, often feeling like an inconvenience and overwhelmed with guilt when I just do not have the energy to participate (so I do it anyway and then spend the next week in bed). The constant fear of holding people back and frustrating them because of my disability has often stopped me from doing things, yet I make excuses that have nothing to do with my Ataxia because I don’t want Ataxia to be the reason I’m not living my life to the full. Again, deffo not owning it.
To be honest, for the past three months I have had so many breakdowns because, WHY ME? I AM ONLY 21, I HAVENT HAD A CHANCE TO LIVE. Since the age of 12 there hasn’t been a year where I haven’t visited the hospital and there never will be. For the past three months I have felt lost, confused about where and what I’m meant be doing (both literally and metaphorically). Scared, so so scared of missing out, losing people who I care about dearly because I am not enough and scared because what I thought my life would be like seems so unrealistic and out of reach right now.
The thought of not fitting in terrifies me. Because even though many people at the festival told me what a ‘trooper’ I was, I will only remember the highly intoxicated girl who slurred “what’s the point of being at a festival” whilst glaring at my stick. For the past the past three months I have shied away from any situation where I would stick out like a sore thumb.
Now, these feelings have always been there but I have been able to ignore them by keeping busy and surrounding myself with my amazing friends and family who have taught me that no matter what, I deserve to be loved unconditionally (now I just need to follow their lead). But ignoring and hiding these feelings is just a temporary quick fix.
This is why I’m sat here writing this. Because I need people to know having a disability is like caring for a teething toddler. If I don’t eat right, sleep enough and prioritise myself then my body will have an uncontrollable tantrum. So here it is in writing, I am allowed to be selfish sometimes, I am allowed to just think about me and I am allowed to spend all day in bed if I want to. I am allowed not to be ok.
But is this okay with everyone else? I’m not sure. In the grand scheme of things, is it really ok to not be ok?
Normally I try to post motivational, often inspirational (eugh I hate that, why does being disabled make me an inspiration) posts which (if I’ve done my job properly) create the facade that I am coping and owning my disability. But for the past three months I have been struggling to cope with Ataxia, for the past three months where I have relied more and more on my walking aid, my stick has been missing or cropped out of photos. Deffo not owning it.
For the past three months I have been riddled with anger, frustration and resentment towards myself, often feeling like an inconvenience and overwhelmed with guilt when I just do not have the energy to participate (so I do it anyway and then spend the next week in bed). The constant fear of holding people back and frustrating them because of my disability has often stopped me from doing things, yet I make excuses that have nothing to do with my Ataxia because I don’t want Ataxia to be the reason I’m not living my life to the full. Again, deffo not owning it.
To be honest, for the past three months I have had so many breakdowns because, WHY ME? I AM ONLY 21, I HAVENT HAD A CHANCE TO LIVE. Since the age of 12 there hasn’t been a year where I haven’t visited the hospital and there never will be. For the past three months I have felt lost, confused about where and what I’m meant be doing (both literally and metaphorically). Scared, so so scared of missing out, losing people who I care about dearly because I am not enough and scared because what I thought my life would be like seems so unrealistic and out of reach right now.
The thought of not fitting in terrifies me. Because even though many people at the festival told me what a ‘trooper’ I was, I will only remember the highly intoxicated girl who slurred “what’s the point of being at a festival” whilst glaring at my stick. For the past the past three months I have shied away from any situation where I would stick out like a sore thumb.
Now, these feelings have always been there but I have been able to ignore them by keeping busy and surrounding myself with my amazing friends and family who have taught me that no matter what, I deserve to be loved unconditionally (now I just need to follow their lead). But ignoring and hiding these feelings is just a temporary quick fix.
This is why I’m sat here writing this. Because I need people to know having a disability is like caring for a teething toddler. If I don’t eat right, sleep enough and prioritise myself then my body will have an uncontrollable tantrum. So here it is in writing, I am allowed to be selfish sometimes, I am allowed to just think about me and I am allowed to spend all day in bed if I want to. I am allowed not to be ok.
But is this okay with everyone else? I’m not sure. In the grand scheme of things, is it really ok to not be ok?
Senorita,
ReplyDeleteThere is no Right or Wrong to how you step forward with Ataxia. As one of your readers... I think it's more than important to share that You are 100% encouraged to write what you're feeling. It's completely okay to describe and list everything that's inside of you even if it's not your typical post.
It isn't negative one bit... it's "REAL" and what so many of us value in a writer is their Truth. The ability to read your Raw Truth of Ataxia and this Journey is beyond commendable and reading this post that's filled with depth, emotion, and frustrations ...shows us that that you are in the process of owning this. You may not feel like it, but you're A+ Golden.
There is a deep reality that all of us with disabilities have this experience. For some it takes months, for others it's years. And your Inspiration to others comes from how you're here ...telling your Story. There are younger girls who also have AOA2 and yet seeing your strength (even when you think you're not) gives them Hope, Drive and Courage. Courage to at the very least know they're now alone on this journey.
We, your readers Value your posts and your words. It's 100% Okay to Not Be Okay and to write it, live it, feel it and share it! We support you 100% of the way!
*Correction: Courage to at the very least know they're "Not" alone on this Journey.
DeleteWow, this feedback almost made me cry, what kind words thankyou!x
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