We will all struggle at some point in our lives, go through hardship, bad times and difficult experiences. We will all have to come to terms with something we’d rather not, and we’ve all had to muddle through things as best we can. What we mustn’t forget is that struggle isn’t a sign of weakness; it’s a sign of strength. It means you’re still fighting, you haven’t given up, which is the most important thing of all. You might not get to where you want to go, but if you try, you have everything.
However we need accept these hardships and difficult events. Acceptance isn’t easy to achieve. In order to move on, we must accept what has happened. I’m not saying you need to like, agree with or embrace it, but you have to accept what’s happened and move on with your life. Without acceptance, you can never move forward and you will get stuck in a rut. Acceptance isn’t easy and it takes time. When I became ill seven-and-a-half years ago I didn’t fully accept everything from day one. I sunk low, I couldn’t understand why. Why me? Why now? What have I done to deserve this? But in reality, why not? Life is a lottery. Some win and some, like me, lose and end up with an illness/disability, obstacle, hardship, great loss or in a difficult situation. In reality however, we will all “lose” at some point in our lives. We will all experience hardships, difficult events, loss, bad experiences etc. at some point in our lives; it’s a part of life.
My illness is genetic, but I am known as a “spontaneous mutation”. I am just very unlucky. In the lottery of life, I drew the short straw. However what we don’t bargain for is that these things can go two ways: they can make you bitter, or better. The choice is yours. It isn’t as clear cut as bitter or better though; you may become bitter before you become better. It’s a form of grieving process. Grieving has five stages: Denial, Anger, Bargaining, Depression and then Acceptance. It’s a process. How long it takes just depends on what it is and how you cope with that particular hardship or loss. You will go through these stages, some shorter or longer than others, sometimes get stuck in one stage or even skip a stage completely, there is no right way to grieve. Grief is a very personal, individual journey. Grieving is exactly what we do though. Grief doesn’t just mean losing someone. You can grieve for your health, for a normal life, for an easy life, you can grieve for anything in which you feel loss, struggle with or things have changed but not in the way you had hoped.
Hardships can however make you a better person. Think about this quote from Christopher Reeve:
“Hardships often prepare ordinary people for an extraordinary destiny.”
My illness is devastating, it’s life-limiting, restricting, painful, causes numerous debilitating symptoms, has me relying on the nutritional equivalent of life support and with an array of bags and tubes, has left me wheelchair bound but currently in bed most of the time till I get my new wheelchair and just makes life so complicated, but I am a far better person because of it. That’s the thing. I’m not better in spite of my illness, I’m better because of my illness. I have grown in ways that I never would have had I been well, become a better person, done things that would never have even entered my head had I been healthy and I have learned so much about myself and about life. Knowing the painfully shy person I was prior to becoming ill at fourteen (I was born with my condition but didn’t know I was ill until I was fourteen when I became a wheelchair user and my gut failed, despite numerous health problems and symptoms I’d grown up with), it is even more amazing that I went and spoke in Parliament in November 2013 to a room full of MPs and eminent professionals from within the hospice and palliative care sector. It is amazing that I had the confidence to do this; it happened to be the first speech I’ve ever given in my life. From this I went from strength to strength, giving more speeches (including at the Department of Health twice), working with numerous charities, becoming Ambassador/Young Avenger for Together for Short Lives, Ambassador for Dreams Come True, Trustee of the Pseudo Obstruction Research Trust, the first Global Youth Ambassador for the International Children’s Palliative Care Network and more recently becoming a Community Champion and possibly Role Model for Scope and I may be working with the Royal College of Physicians and others in the pipeline. I write, speak, attend events, appear in videos and recordings and in the media (including on TV and radio) and more. The icing on the cake was in July (2015) when I was announced as one of the Health Service Journal’s 50 Patient Leaders, an award for those changing and shaping healthcare.
None of this would have even been possible had I not become ill, faced all the struggles I’ve faced, come back from the edge of life and survived, overcome the difficulties I’ve overcome, and grown the way I’ve grown because of it and all the doors that have opened up for me as a result.
The meaning of life is to grow and learn. My work mainly takes my own knowledge and experiences and uses them constructively to benefit others. I share my struggles, show my journey, prove that it’s not all plain sailing in the hopes it will inspire others to keep going, give them hope, but also to raise awareness of the difficulties we face, of the battles we have to fight, of how the system both works and fails us at the same time, and hope that health professionals, social care professionals, MPs, commissioners and other allied professionals will take on board what I say and use it to improve services, support, funding and resources, improve accessibility, improve equality and just to open their eyes. I’ve learnt a lot, but I want to give back in any way I can. I use my strengths and focus on the positives, because when I do this, I can go on and make the world a better place for others. When I harness my experiences and use them to improve the lives of others, because this gives me a buzz like no other, it means my life has a meaning and a purpose. For so long I felt useless, but now I give back to society and improve the lives of others. I am respected for the work I do, but I do not do it for the glory. Yes it’s nice to be appreciated, but knowing I’ve improved someone’s life is more than enough for me.
My life has not been plain sailing, I’ve struggled, sunk to deep, dark lows, fought back from the brink, questioned my existence, asked “Why me?”, felt that I can’t go on and I’ve been on a constant grieving process for each thing I lose as my illness progresses, but I’ve learnt a lot and grown in ways that I never would have had I been ill.
My illness is a blessing in disguise. It’s put me through hell, but I’ve dragged myself back. It causes unimaginable pain, but somehow I get through with a smile on my face. It’s robbed me of the ability to eat and walk and do all sorts of other things and imposes huge restrictions on my life, but it’s also given me so much. How are you supposed to feel about something that has both ruined and enriched your life all at the same time? Sure I’d give up my illness to be healthy in a heartbeat, but I wouldn’t half miss the life I’ve carved out for myself and miss the person I’ve become thanks to my illness.
Written by Lucy Watts, September 2015.
Currently fundraising for a new electric wheelchair, www.gofundme.com/lucyschairappealTags: acceptance, Ambassador for Dreams Come True, Ambassador/Young Avenger for Together for Short Lives, Anger, Bargaining, Community Champion, debilitating symptoms, Denial, depression, Global Youth Ambassador for the International Children’s Palliative Care Network, Grief, hardships, Health Service Journal’s 50 Patient Leaders, Role Model for Scope, spontaneous mutation, Trustee of the Pseudo Obstruction Research Trust