I believe that what we experience in life has the ability to change our existence entirely. Sometimes, these momentous occasions are triumphant and positive. Other times, they are some of the toughest experiences a person has to get through and face head on. These moments can be short lived or linger in our lives for longer than expected. Sometimes, little aspects can really distress us and other times it’s the bigger aspects that truly rattle us. We all have a subconscious sliding scale of what we find challenging at any given moment as individuals in comparison to each other. We also all have varying coping mechanisms, some better than others. One thing we all have in common in these moments, is that we are not told how to prepare mentally for these kinds of arising challenges, whether they be financial, divorce, death, chronic illness, terminal illness etc.
These occasions can have the ability to change you for the better, however they also have the ability to shake things up in your life, leave you in complete distress, implement great and constant future worries and cause you to face a whole new reality. Life as you once knew it is over, the landscape has changed. This damages your confidence, changes your personality and can hinder your growth. This may not be obvious to everyone around you initially, or even at all. My own personal experience has been, that deep down, after a long time of living a certain way, a drastic change in life has made me focus on the negatives and it has been beyond challenging to accept my new reality. It has robbed me of my character and identity and left me feeling numb inside. I look in the mirror and don’t recognize the person I see.
Living with chronic illness, paralysis and disability is something I have only faced for a couple years now which is a relatively short time in what I know is going to be a long, arduous journey. I very often feel like the last time I was ‘alive’ was in December 2013 in NY, a city I love and miss dearly. The fact that I am only 37 is the bittersweet issue within that prospect as I know I have so many more years ahead of me. Disability and illness can take away the joy of life for some of us. I don’t want to generalise and say for all, as many certainly learn to live fulfilling lives, however that isn’t the case for everyone and most certainly not immediately, it takes time. We find it hard to get back on our feet so to speak and in a direction we are happy with. The adversity of disability was something I never expected. I am a firm believer in accepting that what we go through in life shapes us into what we become. I accept that process, but it doesn’t mean I am always happy and welcoming of it.
How do we separate ourselves from our disabilities when they seem to have so much physical power and control? My previous lifestyle has slowly been replaced with a pace in cooperation to my disability. The part I have fought with the most is that my personality has shifted (against my will) with the adversity I have faced from my new found reality and any hobbies, interests or personality traits that existed previously, seem to have fallen on the back burner. I feel like with each passing day I slowly lose myself to my disability. It has the ability to make me feel like it is all that makes me in life and sadly, all that my world has become revolved around. I don’t believe this feeling is exclusive to disability. After meeting other people within the chronic illness community, whether suffering from traumatic brain injuries, cancer, spinal chord injury, the list is endless, I believe they can feel the same way too. I think it is heart breaking that an illness can narrow your world so greatly and make someone feel this way.
Since I have become ill/disabled, I have been made to feel (by myself) like all I have to offer is the pain and sadness it has brought to me on a daily basis and this has been transferred primarily onto my mother (the closest person to me). The chaos of loss, confusion, isolation, sadness and grief replaced by the girl who despite battling depression, anxiety and chronic pain prior to this new lifestyle, once felt like she had a personality and maybe a glimpse of a sparkle in her eye at times. Disability now consumes every fibre of my being and seems to be the only reason I am who I am. A questionable existence in my opinion. More often than not, I ask who I have become (deathly afraid of the answer), why my life is this way, why do I have a disability or rather, why am I one of the few that hasn’t recovered from a disease that typically has a very high recovery rate? I’ve certainly put in the work, why haven’t I reaped the benefits? Why can’t I live a life I’m content with as a disabled person?
Nobody wants to be on this earth to suffer, nobody wants to feel like they watch the world from behind a window pane. We all want the best quality of life for ourselves and our loved ones.
Early on in my journey with chronic illness and disability, I felt an overwhelming, smothering feeling from the realisation that I was more than likely in this for the long haul. A life of possible longevity, but with chronic pain, long term disability and a whole host of other issues that paralysis brings with it. It was from that point forward that I just felt completely lost within myself and everything I once knew or thought I knew became redundant. I had a whole new world to learn about. Everything I knew before seemed so far behind me and foreign to me, that’s when the reality check dawned on me because life was very suddenly, drastically changing.
Illness was very quickly changing me as a person and not in a way that I liked. It began to dawn on me that disability was my new found reality and that very quickly began to implement fear. No matter how hard I try to be positive (that in itself is a test for me) or to try and make the best out of a bad situation, I am always reminded that I live in a permanent state of fear. I fear for my safety all the time and very rarely feel safe or at peace with my ability to get myself out of a precarious situation, I can’t. I am unable to fend for myself, ever. I fear for the future, will I relapse? I fear for the future in terms of my disability and if I don’t recover further. There is very little I don’t fear. The fear itself is debilitating, causes extreme anxiety, insomnia, depression, anger towards the illness and a whole host of other issues.
When I first became ill and my life was turned upside down as I tried to adjust to being paralysed and no longer being independent, no longer free to use the bathroom as and when I wished (something most people take for granted), however what strikes me the most now, is that absolutely nothing can prepare you for primarily the loss you feel within yourself, your life, your normality and as I mentioned your independence. The loss of friendships as some people find it too challenging to befriend the new you and with that brings a tremendous amount of grief. You are made to feel even more inadequate than you already did and it’s an extremely painful loss. Other friends will step up to the plate in ways you wouldn’t have imagined which is a great payoff. It’s an extremely complex lifestyle to adjust to, made up of hundreds of layers and everyone around you has an opinion. The biggest personal issue for me has been losing myself, my independence, my path. Giving up my old life for a new normal, for all intents and purposes, one that I hate, I despise, I wouldn’t wish it on my worst enemy. When people say it gets easier with time, I want to scream. On the contrary, it gets harder. The longer I live with this illness and disability, it’s the concept of ‘time’ that causes more pain and hurt in my heart. I find it harder to recall memories from my past that used to make me smile. I find it hard to think of aspects that I like about myself or that people could possibly like about me. I feel like I died the day I became paralysed and this evil disability replaced me in the night.
Harry Styles from One Direction once stated that he hated the word celebrity. He felt it was superficial and made him less of a person, a stigma almost. I felt comparison in this comment to how I feel about being disabled and chronically ill. Disability has taken over me to the point where it has become my identity. The first thing that comes to mind when I think of myself is my disability. The first thing that others become accustomed to making conversation about is my disability. Simply because work or social related activities are not present so the sad reality is that there isn’t much left to talk about. Unfortunately, it feels like disability is my defining moment to date and I’m not always sure how to feel about it. We all have the ability to be defined or looked upon as something, however I always wanted something more positive. Disability is a word that I relate to with mostly negative connotations because of what it has brought into my world. Perhaps in the future, I can aim to find something more positive to correspond with defining myself and my life.
Sometimes living life with a chronic illness or disability doesn’t feel like it’s enough. There has got to be something more to life than my reality, is something I am guilty of thinking fairly often. Lack of excitement, lack of joy, lack of enthusiasm mixed with goals we are desperate to see within chronic illness amplify this feeling. My days so often feel empty and less sufficient than average. I miss the days of going to work, of being independent and of having a purpose. Now, so many of my days are filled with me highly doubting my existence. I often feel like I’m just wasting my days procrastinating in bed, chronic fatigue syndrome and severe insomnia dictate that I must stay in bed. In the midst of all this, my purpose becomes impossible to search for. Being somewhat housebound makes me incredibly boring, what on earth could I possibly have to offer anyone. Of Course I can go out for a couple of hours a day, however I am so dictated by the times that I need to come home to use the bathroom that I can’t truly go out for a full day and enjoy myself without constantly looking at my watch. If someone was to ask me what I like to do for fun, my mind usually goes blank. Fun? Does that word even exist in my dictionary. Not since I have become disabled, that’s for sure. I couldn’t tell you what fun is.
I often find myself searching for the answers of what once filled me with happiness or even an escape from my everyday troubles. For the most part, these old things are difficult to attain at present they are no longer disabled friendly. Like it or not, your physical limits have the final say on a lot of your challenges. That’s when you reach a dead end in hope. I know there are multiple enjoyments in this world for people to continuously try and take part in, however a lot of it depends on the level of your paralysis and mine is quite severe. Many people who are paralysed for example could take a painting class. I don’t have hand function so that would be out of the question. In fact I am eliminated from quite a few activities so in reality it is not that simple for me and certainly not as simple as some people make it out to be.
Throughout all of this though I do have to go back to trying to remember aspects of life that are personal to me and not dictated by my pain, disability, Health or chronic illness. Sometimes I find this aspect really difficult. What makes me, me? Trying to forget the more obvious aspects that my illness controls. What do I or did I used to enjoy? What makes me laugh? What is my style? What is my guilty pleasure? What is my movie genre of choice? Who is my favourite artist? What is my biggest dream? Who is my role model? What would i like to do for fun? There is always something you feel passionate about. There is always a quirk within your personality that others and yourself will eventually be able to see, I just need to be able to find it again.
It is definitely not a simple task trying to recall who you once were before you became disabled. Illness has the ability to flip your world upside down when you least expect it. It doesn’t discriminate, it just happens. Disability and chronic illness will impact your life for better and for worse. Things such as your personality, patience and your outlook change with each passing day. At first, it’s disruptive and confusing. Navigating these changes is extremely hard and frustrating not only for yourself but for those around you too. However as time goes on, I believe it can eventually take you to a place of greater understanding of what’s important in life.
Life always carries on, sometimes we are so caught up in our disability that many aspects of our life and personality dwindle away. In the attributes I feel I’ve lost within myself, I unfortunately feel as though I’ve gained a few negative attributes. The darker aspects of disability are often far more apparent and intense when you’re living with chronic illness. I can’t stand and at times, can’t cope with the isolation, the social anxiety, the fear of coping, the fear for my safety, the depression, the complete lack of confidence in anything I do, the knowledge that most of these things won’t change unless my physical circumstances improve.
On reflection, sometimes I wake up and instantly feel defeated by my disability. It’s how I then personally define the whole day, which usually turns out rubbish because I let the disability win. In reality, I should accept the day for what it is and try and cope with the present. One of my strong points is that mentally, I don’t feel disabled. I feel like this is both a positive and negative attribute of my thoughts. The negative being that I am not fully accepting of my situation, lifestyle and physical disability. The positive being that, as long as I continue to think this way, I don’t really allow myself to wallow in self pity. I am still motivated, Will still be able to push myself and feel like my goals are still half attainable.
For the past two years I have had tunnel vision and rightly or wrongly my only focus has been my recovery. I was not mentally equipped to deal with the challenges that disability brought on to me and my reaction more often than not was one of frustration, anger, confusion, hurt, disbelief etc. I am only just starting to realise and accept I am so much more than the symptoms and attributes of my disability. I need to remind myself of this often, even on days where pain and fatigue convinces me that I am less than because of the adversity I may face. I hope that my fears within my own illness can make others more accepting and understand that they are very real fears and anxieties and that sometimes they may even hold me back. I’m not the strong girl I used to be, I lost a lot of confidence a long the way and I’m not sure I will ever gain it back.
Fast forward, I wrote this a year ago and while so much of it still rings true, I have come along so much further in my journey of accepting my “new normal”. I am “surviving” disability so to speak and I’m trying to do it with style, grace and a bit of humour. I will survive this.
Sari Alikhani @harveythefunnyfrenchie
Dear, sweet Sari, thank you for your submission. I am reading this and my heart hurts for you. I’m actually glad that you wrote this a year ago and that you have come a long way since you wrote this. So much of what you said rings true to the experience we have had dealing with stage 4 cancer at our house. If I could express a few sentiments to you, it would be the following (granted, I know, nothing I say can make it better or take away the pain): 1- YOU ARE NOT YOUR DISABILITY- logically I know you know that. It is so hard when an illness or disability takes over, it really does consume everything….your world, your identity and your life become the illness or disability. But you are not your illness. It has it’s purpose and at some point you will know what that purpose is. 2- You are not lost. Right now you are in the throws of your illness and at a peak climatic point in the journey…sometimes it’s hard to see through the fog, but eventually it will dissipate some and you’ll have a better understanding of why/how/when/what/and who. You only have a few tiny pieces of the puzzle right now and it doesn’t all make sense. Hang in there, it will. I promise. 3. Fear and faith can not coincide at the same time. This was a big one for me to learn. Obviously when you are going through Hell and back- there are all sorts of very real fears (like the ones you so adequately described) that overtake you when you are very literally terrified of what’s going on and what is to come. The “what-if’s” are sometimes more debilitating than the illness itself. One thing I learned, (and it really took me some time to learn and grasp) was this, when we really turn our will over to God and get to a point where we can say “Okay God- I have faith. I have all the faith in the world to be healed, but I also have all the faith not to be healed”. When you can get there- and really mean that…things have a way of changing. I was angry for awhile and I couldn’t honestly say that because I was terrified. I was afraid. But God’s got this. He has a plan, he knows what he is doing and one way or another…things are going to be okay. Once I could get there and honestly say that and know that- my fear disappeared. I was overcome with peace. My anxieties that kept me up at night left me and I had a certain calm. I knew that all of my difficulties already had a path prepared for them and that I would find the path (without fear) through faith. Faith is a beautiful thing. I know fear is not gone forever. There are always going to be twists or turns or unforeseen things that are scary, but fear can’t control my situation anymore. I am stronger than fear. HE is stronger than fear. Faith is stronger than fear. I choose faith. I am praying for you dear Sari. I will pray for comfort, healing, answers and patience for you to be able to bear the burdens you have been given. I will pray for understanding, and even gratitude for those blessings that will come to you and others who know you because of your courage in taking something you didn’t ask for and enduring it with grace and bravery. We’re rooting for you. Sending love your way. – Kate