A Few Words, by Annie Perkins: A Poetical Synopsis Through Losing One's Self to Chronic Illness & Why It Took Letting Go Believe in the Possibility of Healing
A few words,
Those seem to sum it. This journey has taken time. It has taken strength. It has taken following my intuition when things seems too daunting, too foggy, too confusing.
It had me take many long walks through the dark. I knew no matter how hard some times were, anything was better than going backwards. So I pushed, some days when I shouldn’t have, for five years now. The old phrase “If I knew then what I know now” echos through my mind. My life is so different now. Not only am I seeing progress, I am also beginning to become one version of myself, not many. I am becoming the me that lay hidden in the background for so many years, that I thought I left her.
Many years ago in the summer of 1994, when I was ten years old, I got very sick and never got better. It was as if someone suddenly hoped into my body without my permission, stealing my strength, my mind and my sense of self. For many years, it was comforting for me to hide all that ailed me, to put on an act. Every day, each and every day, I took the stage and became someone else in order to get through. Now that I no longer have to act that part, I feel a little lost, but I am getting comfortable in this skin. Comfortable with my new self. Little by little as that second part of me dwindles away I am left with this refined pure in form version.
When I received my diagnosis in 2013, I thought I knew the way of the world. I knew how things worked, and I had the attitude that my diagnosis was different. I thought I was not one of the patients I saw at my clinic that were sick and treating for many years, even though I was barely breathing. When someone would try to tell me I had quite a long road ahead of me, I would grow angry. How dare someone ruin my journey with harsh words of realism. I would stop listening when all people were trying to do is help. I get that now. At that point, looking back, I had so much learning to do. The way for me to learn is alway on my own, even if that means it is the hard way. Living through a lesson is different than reading about it in a book, hearing it from another person or watching it in a film. All of our experiences, even if exactly the same, are experienced through our own set of eyes. It's a terrifying but beautiful thing. Your story is different than mine, and mine different from yours.
The past year I have worked on my honesty. With myself and with others. When other patients ask me how I got to where I am now, I try to use encouraging but realistic words. I worked very hard for where I am and I am still nowhere near where I need to be, but I am no specialty. I am just like everyone else. I worked through the circumstances I was given and did the best that I could at the time. There is a period of two years that I do not even remember. The treatment was so intense for me, I shut it out. I shoved it away to deal with later and now that later is here, until I face it, I truly know I cannot heal. That is why I am honest with myself that I need to speak to more professionals, to have myself surrounded with a sense of community and support and to be honest that I am not Ok with all of this and that is perfectly fine. This disease, this situation, is so different for each and every patient that there is no one person to mirror your treatment after. We all have the umbrella term of a diagnosis, but each journey is so complex, each life story attached to the disease is another chapter of how it effects each and every one of us, and the more we share, the more strength we have in numbers. With that being said, it is also important how we share, making sure it is done in the right way.
A large part of being honest with others and myself is regaining trust. Letting people close again, speaking up when I have to leave early, being confident saying no when I cannot show up, or excusing myself so I can emotionally crumble. These are also things I am working on doing with confidence, unapologetically, without worrying about what others will think or say about me when I do. I have been learning that by being the raw, real, hot mess version of myself, it has done the opposite of the bottled up, hidden and confined version I used to. It has drawn others close to me who can relate to my vulnerability. That see that it is perfectly fine to not be Ok. It is becoming more easy for me to reach out, to be honest and to trust others when I know that I need help. It is one thing to be a strong individual, but the more that I heal, the more I find myself letting others stories into my own reality too. The more that I listen to others and their own experiences and trust in them, the more I learn about this crazy world we live in. Trusting others, having others trust me, has been the most beautiful thing I have gained from this experience. Even if we have nothing to share in the material sense, we can still share empathy, trusting and listening to one another.
Trusting has also helped me let go of a great deal of my fear. As of now, I am nearing my five year treatment anniversary. I knew from day one that this would be a long journey. I also assumed the two and a half years spent in bed, unable to go to the bathroom on my own or even answer a phone call would catch up with me. I have a lot of fear, trauma and emotions that still need working through and it is not easy. It is by far the hardest thing that I have ever gone through. I am working on confronting the people I hurt due to my disease, the opportunities that I lost, the beautiful experiences I lost. My life for a very long time was seen through sick eyes, where I was living and standing in the most beautiful nook of the world, but could not enjoy it because I was constantly sick. I do not know what life is like without the pain, discomfort or the fake smile and snarky attitude. I do not know how to be me. What I do know is that each fear that I face, the more real I become.
Where I am at right now, everything is manifesting. I am getting better, things are moving and although I know I have about another year of IV treatments and a lifetime of maintaining my health, I feel at peace with it all. It is easier for me to be known now for other things and not just my suffering. For so long I felt forgotten, like the fight I was fighting was invisible. The more that I reach some normalcy, the more I can let that go. There are still times when I feel unvalidated and frustrated. I physically look more healthy now and I still have to explain to people quite often that I need to go home to take meds, that I haven’t eaten out at a restaurant in five years, that my weekly IV treatments make me feel sick for about two days after, and that if I am not home by 8pm, things go downhill fast, but those are huge wins for me. The hard times are phasing out and the better times phasing in. It is still hard for me to release it fully. It is like my disease was an old friend and I cannot say goodbye. Like it defined me for so long and I am left floating without it holding me down. Release is difficult. It is like everything I wanted for a very long time is beginning to manifest, but I am scared. Scared that if I get better it will get taken away again. Scared that my body isn’t 100% yet and my life is beginning to move forward anyways. Release for me is learning how to move on, even when it doesn’t go anything like I thought it would. Release is letting go, floating away and opening my tightly closed eyes to look at life head on. To let go.
Healing IS possible. When I first had my diagnosis and all of the complications that came along with it, I never thought where I am at today could be possible. Honestly, it still makes no sense to me. I was sick, so sick that I moved across the country in two days leaving everything I owned behind because I thought I was coming home to die. But I did not die, I knew it wouldn’t be easy, but I knew fully healing was possible. Even if it makes no sense, and you have no idea how long it will take, how you’re going to afford it, who will stick with you, what friends you will have left in the end - just. keep. going. Don’t look back, keep walking strong, listening to that still inner voice and do what you have to do to get better. In the end, when you look back at it all you will admire the person you used to be and feel honored at the person you are now. Our experiences define who we are, they are what mold us. Use this life experience to show others how strong they can be, how anything is possible and remind them that if things can get deep and dark very quickly, they can just as easily get better - it may just take some time.
The one thing I clung onto tightly throughout my treatment was the meaning of the Wheel of Fortune Tarot card. It is one of the most memorable cards in the deck for me. Put simply it stands for the good times and the bad times in life and reminds us that during the harder times, the good will come again and in the good times, we must remember the bad. Life is a cycles of highs and lows. It is how we learn to confront them that makes us stronger. Although someone else may not have Lyme Disease, or a chronic illness, we all have out struggles and all have our strengths.
Life is one crazy voyage at times, but the more we keep going, the wiser we grow. I share this experience to show proof of that.
We can do hard things, healing is possible.
Stay in touch with Annie,
We're honored to have back the delightful Annie, sharing with us her words during such a transitional time in her life--which is most likely why this article, in all of it's carefully pieced together poetical goodness, holds so much power and so much voice.
If you'd like to connect with this amazing human, which I absolutely suggest you do, here are a few ways you can reach her, be inspired by her work, and see what creative pursuits she's taking on next, whether it be through the written word, meticulous drawings, or more recently, guided meditations.
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