Like most people on a journey with chronic illness, I find myself wondering what this is all for. Why do I have to go through all this? What did I do so wrong to deserve this? And perhaps the biggest one: What would my life have been like if I hadn’t been bitten by that dreaded tick? Who would I be?
Well, unfortunately I’ll never know what my life would have been, all the things I could have achieved by now, and the person I would have become. It’s easy to think of all the possibilities, but I have to stop myself from going too far down that route because it just gets depressing thinking of all the things I was doing before I got sick, all the things that were coming my way and falling into place for me. I was finding myself in music, sport and performing, going to school and excelling in my extra-curricular activities… I was popular, healthy and happy; and I didn’t know life any differently, so I took it all for granted.
It’s during those recurring “what could have been” thoughts that I try to remind myself of the good that has come out/is coming out of this crazy, painful, ongoing ride, as hard as that is. And sometimes I just can’t do it. But if I didn’t, I would go completely mad.
It’s now coming up to 11 years of illness, so at the beginning of this year, I compiled a list of things I have learnt during my tumultuous Lyme journey, to help answer the question of why I’ve had to go through all this, and to show myself that, in fact, it’s probably, (hopefully) a blessing in disguise.
What have I learnt on my Lyme journey during the past 10 years?
1. I have learnt that life can turn upside down and change dramatically in the space of a very short time.
2. I have learnt that one minute you can have everything, the next you have almost nothing. Of course I am more than grateful for a loving family, a home, quality food, necessities and material items; but without health, without being able to do anything, life, and things, feel like basically nothing.
3. I have learnt that friendship is more than often transitory. And I have learnt how to let this go.
4. I have learnt what pain really is. And that most people don’t understand it, but also that more people do than you think.
5. I have learnt the importance of being still and just thinking, or not thinking. Of dreaming and aspiring.
6. And the importance of action and seizing the moment to the best of your ability whenever possible, i.e. To always make the most of every moment when your health allows you to. To never hold back.
7. I have learnt that mostly, people know nothing, although they think they do. People are arrogant but ignorant, often well-meaning but half-hearted. They follow the crowd and can’t think outside the box. But then, occasionally there are those who stray from the crowd, make their own route and try to make the box bigger. I have learnt how to do this.
8. I have learnt how vastly different life is to every individual. I have learnt never to judge a book by its cover, and that what is going on on stage might look good, but backstage is often mayhem. And I have learnt how frustrating it is to be in this position/facade.
9. I have learnt that nobody understands… anything. Especially that no one can understand other peoples’ lives and situations. But they try, and pretend that they do, and think that they do, but it is impossible for anyone to properly understand another person. I have learnt what it’s like to be completely isolated and misunderstood, even by family.
10. I have learnt to place my trust cautiously, if ever, and that it is highly rare for people to keep promises; but that doesn’t stop them from handing them out freely.
11. I have learnt that not many people trust you, either. People are always sceptical, and always question you. If they can’t understand something, then it must not be true.
12. I have learnt that as soon as things get tough or uncomfortable, many people will abandon you.
13. I have learnt how to be alone. How to spend time with myself and no one else. And that I like it that way.
14. I have learnt what love is, and how to love with every part of my heart, but also that the more you love, the more it hurts.
15. I have learnt what grief is.
16. I have learnt what hope is, and what false hope is. And to not get my hopes up as easily as I once did.
17. I have learnt what it’s like to be taken advantage of in a vulnerable state, to be manipulated and abused, and how to make sure that never happens again.
18. I have learnt what it is like to have to face some of my deepest fears.
19. I have learnt what it is like to be crippled, not just with physical pain, but with mental pain. And to stop being able to function or sleep because of this. I have learnt what anxiety, OCD and PTSD is.
20. I have learnt what it is like to be faced with death.
21. I have learnt what it is like to wonder every night whether or not I’ll wake up the next morning, and to be 100% sure that I won’t, or hope that I won’t.
22. I have learnt what it is like to live with no friends except for a dark, cloudy monster who never leaves my side and who makes sure I never forget him and the pain he brings.
23. I have learnt what it is like to hate yourself, your body, so much, that you want more than anything for it to be gone.
24. I have learnt what it is like to live in the dark, to live in a cage, to live in mud. And I have learnt what it is like to wish that I didn’t live and to try not to.
25. But I have also learnt what it is like to have to fight with every part of me to live, and to make sure that my life is a great one. Because having your life taken away from you makes you appreciate it even more.
26. I have learnt how to be strong, and to not be afraid of what might be around the bend, because I am used to being unpleasantly surprised, and let down. I have learnt how to keep going despite what seem to be the toughest, most impossible and painful of times.
27. I have learnt how to be patient, and that good things take time (well, I’m still waiting).
28. I have learnt that it is a good thing being “weird”, or at least different and unique, because anything else is boring and you won’t make a difference if you’re not different yourself.
29. Most of all, I have learnt all about health, nutrition, and the importance of it. I have learnt about the body, my body, and how to nourish and protect it. I have learnt my purpose, and that I need to go down this route in life, to help people, animals and the world in the long run.
30. I have learnt that every flower must grow through dirt. That I have to go through this long and painful journey to learn all these things, to become who I am today with the values and ambitions that I have. And so that I can utilise them in life and reach my dreams, goals and utmost potential. I am not going through all of this for nothing, it’s a blessing in disguise.
31. I have learnt never again to take health, or life, for granted. I have learned how to live, and how I want to live.
And that is only the beginning of all the things I’ve learnt, and that I can put into words. A lot of it is purely on another level. So thank you to the tick from that birthday party in Mosman back in 2008 who has taught me all these things. You were the most unexpected, traumatic thing to happen to me, you very almost killed me and I often think you still might; but I have learnt more through illness than I ever would have otherwise, and crazily enough, I don’t think I’d change it.
So now I continue to take each day as it comes, one step at a time, with comfort in the knowledge and experience that I have attained to get me through.