“You let time pass – that’s the cure. Change can be difficult to accept. You survive the days. You put one foot in front of the other and get on with it. You float through the weeks and months wondering if your life will ever go back to what it used to be. And then, one day you find yourself alone on a bench in the sun and you close your eyes and lean back and you realise that you’re okay. You realise how far you have come. You realise you’ve just fallen onto a different path leading you to your true destination. You realise, ‘I can do this’. Behind every smile there is an untold story. Sometimes it’s a mask to hide pain and suffering. Sometimes it’s a true reflection of happiness.” • Laura Lee •
While my current situation is not life-threatening anymore, on multiple occasions this past year it was, and the reality is that it could become life-threatening again in the near future. I admit that this past year’s medical events have been life-changing and life-altering for me and my life won’t ever be the same again. But I think accepting this has been more difficult than I thought it would be – especially being in the midst of my prime twenties, almost 24.
They say that your twenties are supposed to be the ‘best time in your life’ and the ‘most eventful years of your life’ because it is when you are trying to figure yourself out. You feel ‘invincible’ and ‘adventurous’ as you have all the energy to go out and explore all you want and don’t necessarily have to commit to anything or anyone. It’s the time when you’re trying anything and everything. You are filled with hopes and dreams of having a wonderful life, and nothing is going to stop you from making them come true. However, in this past year my ‘twenties dream days’ were over with before I realised they had already begun. I had to put my serious life ‘thinking cap’ on and mature way beyond my years to prepare for life-changing decisions and surgeries that would impact my life, ambitions and dreams dramatically. The fear of losing my life was becoming more real and it was then I realised that I wasn’t this ‘invincible’ being anymore. I realised that I took my life for granted. At this point, my perspective on life changed forever.
Imagine having lived a pretty colourful life full of playing sports, attending a top-world university studying a Masters in Science, socialising and partying, travelling the world, being independent, and your dream career and aspirations are actually becoming reality. Imagine that all suddenly being taken away from you in an instance. You were no longer able to complete your dream degree and had to post-pone finishing it. You were having to depend on being in neck brace to keep you alive. You could not live on your own or look after yourself. You were dependent on your family and friends to just live. You were told to fly across to the other side of the world to have multiple neurosurgeries and brain surgery to keep you alive. You were told that you may not survive. You lost the majority of your mobility in your neck and spine. You no longer were able to feel both your arms and legs. You were constantly living with the worst pressure headaches and ringing in your ears. You were always exhausted due to the intolerable pain causing you to stay awake at night. You were unable to think ‘clear’ thoughts. Your speech became slurred and inconsistent. You were no longer able to walk, read, write or see using your peripheral vision.You were wheelchair bound. You were in a neck and back brace all day and all night. You were disabled. You were told that the extent of permanent brain and vision damage will alter your life dramatically. You were dependent on your mother to look after you, dress you, feed you and bathe you. You were no longer independent. You were no longer the ‘you’ that you remembered to be.
This represents some of the drastic changes that overtook my mind and body at the peak of my medical ordeal this year. At the time, I felt like there was no ending to this nightmare.
However, since having all three neurosurgeries and pioneering brain surgery in June, I have experienced many positive reliefs to many of the debilitating symptoms I was suffering from. Now, I am getting used to my new ‘normal’. I have needed to deal and begin learning to accept many changes physically and mentally that is a result of a combination of all surgeries, brain and vision damage, and my Ehlers-Danlos Syndrome/PoTS/Autonomic Dysfunction progressing and worsening. Examples include:
- Reduced neck and spinal movement due to fusions – having to adapt to restrictive body movements in everyday life and social situations; not able to dance or go out clubbing; adjust reading and studying posture with special equipment; unable to stand and walk for long periods of time; not allowed to lift or carry anything over 4kg; unable to run and play a variety of sports that I used to i.e. netball, skiing, hockey, water sports; must wear neck and back brace in all transportation; unable to drive; deal with chronic pain on a daily basis etc.
- Brain damage and vision damage due to compression on my brain stem, Chiari, neuorosurgeries, brain stent surgery, brain clot and collapse of Left Transverse Sinus Vein – slower to do simple everyday chores; slower to comprehend reading and conversations; problems with short term memory loss, visualisation and forgetfulness; difficulties dealing with crowds, following group discussions and being in areas of loud noises due to ‘brain overload’ filtering of sounds; conversation and thinking difficulty due to slower processing of information; repeating my conversations or actions due to difficulty registering in my brain; lost complete depth perception (e.g. unable to determine depth of steps or distance of objects); convergence insufficiency; both eyes working separately instead of together causing frequent double vision etc.
In all honesty, I believe change can be quite traumatic. I have felt like I’ve been on a ‘roller-coaster’ of emotions adjusting to my new life, my new body, and learning my limitations whilst getting to know the ‘new’ me. It’s not easy, I have good days and bad days. Some days I feel like I am grieving, frustrated and vulnerable with what I can’t do anymore. Some days I feel happy and excited to just be alive, learning new ways to do things and finding new hobbies that I thought I would never consider doing. Opportunities are coming my way that I thought I wouldn’t do in my lifetime, such as motivational speaking and being a patient advocate. But one thing is for certain, this change has made me embrace every day as it is and I look forward to new opportunities that wouldn’t have occurred if it wasn’t for my medical journey this year.
One thing I have learnt is, if you aren’t able to accept any change, you aren’t able to move on and progress with your life. Living in the past and living like you used to will not help because you are only reminding yourself of the life you once had. You have to accept that you aren’t that ‘person’ anymore. Instead, you have evolved and grown into something different. Sometimes I see it as a better version of myself and it becomes easier to accept. I am not saying that I won’t be able to live my hopes and dreams and continue where I left off before all of this happened, I am saying that it will be different to what I envisaged.
Letting go and accepting my reality has come at a price. One that I am still getting used to. But in order for me to heal, I’ve had to change my priorities and lifestyle tremendously. This remains both a challenging and difficult experience in trying to find the right balance between recovery, wanting normality and independence in my life again. Recovery is most important to get right because if you over-do anything you will end up regressing, causing permanent damage or even needing further surgery.
Since coming back to England, I have really been focused on getting physically stronger, building up my endurance and stability around my spine and joints, and adapting my new posture by attending specialist physiotherapy and hydrotherapy sessions, as well as working out at the gym 3 hours a day and maintaining a healthy diet. I have also been committed to continuing vision therapy exercises to improve my brain and vision damage. I have continued seeing my U.K. specialists on a regular basis to monitor my recovery and symptoms, and keep track of my autonomic system by having regular 24hr heart and blood pressure monitoring and tests. Another main element to my recovery is attending pain management sessions which has enabled me to learn how to control and manage my chronic pain, learn my limitations and being aware of how to prevent flare-ups, dealing with post-traumatic stress from my surgeries (e.g. night terrors, anxiety and panic attacks), providing emotional support and accepting my ‘new’ life.
As you can see, my recovery has a lot of elements. I have learnt that you as a patient, your family and friends, and the medical team surrounding you have to be hugely dedicated and motivated in order to result in a successful recovery. I am so grateful to all who have supported me and who are currently – if it wasn’t for all of you I wouldn’t be at the stage of recovery where I am now.
I have found there is a fine balance between wanting to be independent and finding a way to accept your own limitations without giving up. I am still learning this balance. And when I am able to show small steps of progress and improvement, I am reassured that it is possible and I just smile and say, ‘I can do this’.
I think I am beginning to accept the change. To be honest with you, I have found in my journey that there is no ‘special’ way in doing it. You can’t rush it. This healing and recovery process just takes time – that’s the cure.