“Personal discovery and growth come from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy. Suffering comes from wishing things were different. Misery is self inflicted, when we are expecting the “ideal” to overcome the “actual,” or needing things (or people, or places) to be different for us so we can then be happy.
Let the hard things in life break you. Let them effect you. Let them change you. Let these hard moments inform you. Let this pain be your teacher. The experiences of your life are trying to tell you something about yourself. Don’t cop out on that. Don’t run away and hide under your covers. Lean into it.”- Pema Chodron
When you’re a child, your parents take care of you emotionally and physically until you grow up and learn how to take care of yourself. When I moved out, I remember how extremely independent I felt. I learned how to budget my money, do handy work around my apartment, and several other tasks that I would have never fully understood unless I was on my own. There was an amazing sense of freedom that came with such a transition. I became self-sufficient and no longer had many of those needs.
When you have a chronic illness, you suddenly have a lot of needs again. You need someone to come to the doctor with you. You need someone to call in the middle of the night when you don’t know if you should go to the emergency room or not. You need someone to check the ingredient label for you to make sure the food is safe. You need someone to cook for you when you can’t get out of bed. You need someone to hold your hand. You need someone to pick up your medicine. You need someone to tell you to take your medicine. There are needs, after needs, after needs. Needs that you were used to being able to easily manage and deal with on your own.
Asking for help has never been my strong suit. I like to feel like I can do things on my own. I value my independence and ability to be so self-reliant. This illness has managed to strip that right from under me. It has forced me to be in situations where others were necessary pieces of the puzzle to maintain safety and stability. There are people who have answered the phone at 4 am to just sit and listen to me scream and groan in pain for hours until I fell asleep. There are people who have immediately gotten in the car to come take me to the emergency room. There are people who have come to the doctor even when it was just a “check up”. There are people who have left their work day to come to my millionth blood test to keep me distracted. There are people who have forced me to take a walk with them in order to clear my head. For the people who have bent their lives in order for mine to be a little more at peace, words will never be enough.
The thing is though, when you have a chronic illness, you can fight as hard as you want against the notion that these needs exist. At the beginning of my journey, I did everything I could to push people away and manage my illness on my own. I didn’t want people to have to do those things for me. One can only hope that when you have a chronic illness, there will also come a time when you become accepting of those needs and of those who want to fulfill them. This may even progress into a time when you no longer rely on yourself to manage your symptoms, but you become reliant on others to be there during those times of desperation. Unfortunately, there will also come a time when you have those needs, but when no one is available to fulfill them.
I was recently faced with a two day test that tested for neuroendocrine tumors throughout my body. When booking the appointment at Penn Abramson Cancer Center, I was told that I didn’t need anyone to drive me for this test. I immediately struggled with the idea of still wanting this need to be met. How could I justify someone needing to be there when it was for purely emotional reasons?
My boyfriend would have moved mountains to be there for me if I requested, but he had other priorities that were more important. My mother was suffering from a broken foot and my father was busy helping her recover. The list went on and on. Luckily my friend that is a nurse offered to take me on her day off. The morning of the first day of the test, we got in the car at 6 am to start our journey to Philadelphia. I received a phone call on the way there that told me my injection was delayed on a flight from Canada. After waiting several of hours, the test had been canceled. The doctor had asked me if I wanted to re-schedule for the next two days, which were two days that my friend, and all of my support network, was not available.
This was when I expected the “ideal” situation to overcome my reality. This was when I had hoped that things or people were different. I was defeated. I felt beaten down. I felt like there was no good reason that God had chosen to put yet another obstacle in front of me when just pulling myself out of bed to go to the test felt like a momentous task. I wanted to give up. I wanted to throw my hands in the air and say, “Screw it.” I remember being so angry that this was my life, that I was going to have to go to a scary hospital in a place far away, by myself, to find out if I had cancer. I had this very evident need of wanting someone to be there to do this test with me. I didn’t believe there was any way I could mange to do such a thing alone. I was angry at the world for not having someone available to hold my hand. For not having someone to remind me to breathe. For not having someone to keep me calm and rational when all I could think about were the “what ifs”.
Reschedule the test for tomorrow when I would have to go alone? Who the hell thought that could be a good idea? Certainly not me. I wasn’t ready to face this battle alone. I wasn’t ready to go back to being the self-reliant and independent woman I had just become a few months prior. After several hours of what felt like emotional turmoil, Pema’s quote hit home. I was beginning to understand that hard things do break us, but that was something that was okay. What was not okay was to cop out, to run away, to hide under the covers. In that moment of time, it was so much easier for me to stay sick than it was for me to do something I needed to do to get better.
The next day, I chose a step towards health. I got up again at 6 am, put on the same clothes, made the same drive, and parked myself in the hospital lot. I forced myself to face my biggest fear. It wasn’t about having to make a long drive all by myself. It wasn’t about being afraid of the test itself. It wasn’t about waiting for 8 hours all alone and not having someone to talk to. All of those things were needs that I had that would have been nice to be fulfilled, but none of them were part of the thing that scared me deep down in my bones. Arriving at the hospital alone forced me to confront the one thing that I was consistently choosing to avoid: When all was said and done, did I have the courage to not only face, but to conquer, my chronic illness by myself.
The day that I walked down the long hospital room by myself, the day that I got my first IV injection by myself, the day that I laid on a hard table with my hands above my head for hours at a time by myself, was the first day that I realized I could do this on my own if there ever came a time when there wasn’t someone to do it there with me. This was the moment I became free.
I am now learning that I am so much braver than I ever thought I was. Some days I’m able to manage my illness just fine. Other days, I need someone to help me. I used to be terrified of having that need. The difference now is that I understand that being brave doesn’t mean asking for help or not asking for help. Being brave means knowing that life is trying to teach me something, and having faith in the idea that this pain is there for a reason.
Slowly, but surely, I’m learning the lesson of what it means to lean in.