not to escape life,
but for life not to
I’m on the train ride back to Syracuse, after a week of visiting old friends back in a place Justin & I used to call home for a short while, Cambridge UK. This trip in particular all came about when I was invited to one of my oldest friend’s wedding there. I feel so lucky to have been able to go, not only to the impeccable ceremony which took place in a legitimate castle in the English country side, but also to be so lucky to visit Cambridge and all of my old friends, as this was, of all the places we’ve lived, the one I grew most fond of, and I think it grew just as fond of me.
I wanted to write a post about traveling with a chronic illness, both to show that it is indeed possible, though it may look slightly different than what may be considered the norm, as well as to share with those who may not fully understand chronic or invisible illnesses such as M.E. The one thing that’s been harder for me than the physical pain and symptoms that I deal with in different measures on a day to day, is the fear of being judged by others. This fear is something I’ve recognized as a chronic voice in my head, worrying what others think, but in relation to my illness the loudest of all is that they’ll think I’m a real F word…”faker”.
I worried that in doing anything fun they would assume that I was just lying about being ill at all. In some ways I could understand this, one moment I could be walking around window shopping, and the next I feel a crash in my energy so hard I have to find a place to sit down until I can collect myself enough to get myself to a taxi to take me home. Or I may be at work, having seemingly normal conversation, but the second I finish for the day I feel so shattered I may just burst into tears in the bathroom. These have happened, and do happen all the time. If I could answer the question “how are you?” honestly I would say 90% of the time that I am hanging on, but in chronic pain, I feel a chronic exhaustion that has become so mundane to me, but that would drive most people to think they had walking pneumonia. But instead I say I’m ok, and this is also the truth.
If I spent all of my time talking about how bad I was feeling, I would surely find the task of getting out of bed in the morning an even harder feat. I have learned that each morning I have a choice, and that it will never be an easy choice, and there is really no right or wrong answer except in the case when I don’t follow what my gut tells me. Sometimes it is to get up anyway, even though my body isn’t quite feeling it. Sometimes it’s to stay in bed anyway, even though my mind isn’t feeling it. This is an ongoing practice, to be able to know which one is the right choice for me, and I don’t always get it right, but the more I practice, the better I get. And that brings me back to traveling with any sort of illness or condition, the only rule is to do what feels right to you, and this will take some practice to master.
I want to share a few things I did this trip to save my most precious resource, my energy. The first of which was to challenge this voice in my head telling me that people were judging me. Sometimes it may be true, and I have been in situations where I have unfortunately been bullied, been called lazy, given funny looks etc by strangers and by acquaintances, but I will say that what I’ve realized is that more often than not I am actually giving myself a harder time in my own head than anything actually coming to be in real life. Take for example me laying down on the airport floor, I was so nervous to do this but my nerves and my aching spinal chord just couldn’t take the pressure anymore and I had to get horizontal.
The voices began, and I did my best to push them away with my breath, but I was in so much pain that I felt mentally weak, and was really struggling to not care what people were thinking, so I closed my eyes, listened to my music and pretended I was at home on my own floor laying down, and I began to calm down my nervous system. And when I felt a little better I opened my eyes and looked around, just out of curiosity, not judgment, and I saw everyone else in their own worlds of their own heads, nobody even giving the grown woman laying down on the floor a second look. Some of whom maybe even feeling the way I was just moments before trying to calm themselves down in such a busy setting full of nervous and anxious and exciting and transient energies as an airport.
So below is a small list of things that helped me calm this voice in my head, and let me be fully present in the adventures of my travels;
- Music. This one seems obvious, but I chose specific playlists that were calming & inspiring to me to listen in transit and they made a world of difference to block out the chatter on the train, the noise on the plane, and made space for me to go within, to really figure out how I was feeling, and find peace.
- Packing lightly. I really challenged myself to fit all I needed in a carry on suitcase, with a backpack as my personal item, and I found myself so organized and focused it made traveling to multiple destinations via multiple modes of transport so simple and enjoyable.
- Planning first, with wiggle room. What I mean by this is having a general idea of what the day would look like but being flexible for changes and serendipities to occur. I found that writing in my journal in the morning helped me stay present in my day and enjoy each moment and each experience, with no expectations.
- Enjoy the ride. I took trains, planes, buses, taxis, ubers, tubes, & walked. I really set an intention this trip to enjoy the journeys within my destinations. That’s what traveling is all about, so make it as comfy and enjoyable as possible. For me this was bringing my laptop for writing or watching tv, buying a new book along the way, using my different playlists for different journeys or simply looking out the train window and taking it all in.
- Be alone. Especially when traveling with others, carve out some precious moments where you can be in solitude each day while traveling.
- Smile. As much as you can, remind yourself how lucky you are to be where you are, smile at strangers. For me with this illness, I often think about those who are bedridden, or otherwise very limited in their mobility, and I think that I owe it to them and to myself to be as happy and as thankful for the two feet that hold me up and take me out into the big beautiful world.
With this post, I challenge you to see others and see yourself without judgment. This is a task far harder than you first realize, but it is also just a practice. The more you accept yourself, the more you will accept others. Remember that everyone, every single person you come in to contact with, is fighting their own invisible fight. I suggest starting by being curious about why a person is doing what they’re doing, instead of trying to assume or characterize, for that will lead to judging their choices. Whereas curiosity asks questions without needing an answer back, and that will lead to empathy and more room for accepting that which we do not understand.
As for me, with this post I challenge myself to keep standing up to that voice in my head, masked as the judgments of others, but is really just my own. It starts with that, and then if there does arise a situation when another person is actually questioning me, questioning my illness or why I’m doing what I am doing, I hope that I can relate rather than react. I am striving to help others understand so that they may change their mind, or expand their experience based on what I’ve shared with them. Maybe, for now, it can start here in my writing. If there is anyone out there who thinks that if I can’t have enough energy to work full time then I shouldn’t have the energy to travel to another country, I would say that the very reason I scaled back my hours at work was so I could give myself more balance, more energy for the people I love and who love me, more experiences that touch my soul so deep, I forget I’m in any pain at all.
From this illness, I have lost many things from my “old life”, but some of those things needed losing. Some needed to be shed, to be stripped down bear, and broken. What felt like it was ripping me apart, was really me being set free. I would urge you to ask yourself, do you feel free? If the answer is no, then that’s where you and I can find common ground. Keep asking yourself this question until you like your answer.