Crossing Lines

There’s some kind of invisible line. It’s located differently for everyone, and there really is no warning as to when it’s being crossed. But it exists, and it’s powerful. Since I last posted, I crossed that line. More than that. I shattered it.

It was kind of a big deal.

A couple of weeks ago I headed to London, England with my family. I knew that I wasn’t strong enough to go, and I knew that things might get ugly. But it was my one chance this year to see my best friend - my brother, so I went.

And I prepared. I packed bags of snacks - both salty and high in sugar, depending on what my issues were. I packed electrolytes and braces, bought a neck brace for my flopping head, and my family rented a wheelchair with a head rest for the extra support.

I wore my strongest compression garments on the plane and even bought special compression gloves - just in case.

I brought my walker, in case I needed support to walk, but didn’t need to be in the wheelchair.

Even with all of that, I felt scared. It was strange, because usually I find myself exhilarated at a challenge. I tend to lead the charge on adventure.

But I couldn’t shake the feeling that I was close to something bad. Something dangerous.

I told myself that it was because I had been isolated for too long, and that I couldn’t let my illness and fear stop me from living. I pushed aside my trepidation, and went onto the plane beaming and excited.

I had no idea what I was in for.

Before going on the flight, I had been close to the line. So close, that I had started to brush against it here and there.

The line between okay and not okay. The line between sick, and too sick.

I’ve been in a lot of pain before. I’ve felt extraordinarily ill.

But most of the time, I’ve still managed to be me. The things that make me smile have still made me smile - albeit a weaker twitch of my mouth. I might have a shorter temper or a longer processing time, I might cry or grimace or lie silent, but I have generally been on the okay side of the line. At least for most of the day.

But this trip pushed me overboard. I was simply too sick. I wasn’t able to process anything, I was in a world of my own - a world of a rapidly beating heart and pain and exhaustion.

I lay in the floor, unable to move my limbs, unable to speak, being fed water by a straw.

I was terrified, not just of my body’s dysfunction, but of everything. My heart stuttered at noises. I didn’t want to be alone.

I was still there, and I could still see and still think rationally, but it was as though I was locked into a small corner of my mind. I screamed logic at the rest of my brain, I got excited at my few opportunities to explore the city, I was vainly horrified by my dismal reflection in the elevator mirror on my way back up to the apartment after an outing, and I was thrilled to be together with my family - but my body was louder and it didn’t seem to care. It was miserable and scared and couldn’t enjoy anything. It just wanted to go home.

I had crossed over from very sick, to too sick. My body was controlling me. It was simply too much.

There were a couple of times on the trip that I did manage to take back control. One moment was at lunch with some friends who are really family. As we were eating, I suddenly felt present. And it was so wonderful, we had an amazing time and I felt so happy. Another moment happened when my mother and I had just left the Royal Albert Hall, and I suddenly felt so present and was enjoying being out in the city so much that I talked my poor mother into pushing the wheelchair all the way back to the apartment in the rain, so that I could see more.

But for the majority of the trip I simply was not myself. I was too sick to be myself.

And so I turtled. I didn’t reply to emails. I didn’t write any blog posts. I didn’t reach out to my friends. I felt like I had nothing to offer. I was miserable and felt tainted. I felt embarrassed. How could I not be finding a way to enjoy myself?

And then, finally, it was time to come home. And as we drove to the airport I felt an immense pang of regret. I had been dreaming about this city, about this trip, for years. And I had spent the majority of it miserable.

But I also felt immensely relieved to be going home. Going back to a space that I knew.

On the flight home I drifted in and out of sleep, made faces at the broken screen in front of me, and felt myself gradually taking back control of myself. I tried to decide whether I was happy that I had gone on the trip. I tried to think of what I’d tell people when they asked, excited, ‘how was it? what did you do?’.

And my thoughts seemed to loop around themselves. I simply didn’t know. I was still so wrapped up in my body. I needed time.

My first responses to friends were that the trip was ‘complicated’. I wanted to say awful, but I couldn’t bring myself to. Not simply because I knew I was so lucky to have even had the opportunity to travel, but because I knew that, while it had felt awful, some wonderful things had happened. I just hadn’t been in the right space to enjoy them.

A couple of days later, my word changed to ‘rollercoaster’. The friends who I talked to a couple of days after I had arrived back home got the benefit of a much cheerier picture. One with bad health, but great adventures too.

And just today, when someone asked me how the trip went, I said that I was really happy I had gone.

And I am. Now, at least.

It’s not that I’ve forgotten how awful I felt. It’s not that I’m looking at it with rose coloured glasses.

It’s that I’m not still feeling awful. I’m back in control. I’m not too sick.

And now I can look back, and think of those cool things that I was wheeled out for, those moments with my family, and I can remember them. I can savour the memories, and enjoy them.

I’m still physically recovering from the trip. Or perhaps that’s putting it too kindly. I don’t know if I’m recovering, but I’m still feeling the affects. I’m still very sick.

But apart from a few hours a day, I’m not too sick. I’m back on the okay side of the line.

And I don’t simply feel back to normal - whatever that is. I feel fresh and invigorated, both mentally and emotionally.

I have been reaching out to friends who I haven’t spoken to in years. I have finally started a project that I had been procrastinating for months. I have been singing, in small bursts, and coming up with all sort of ideas.

I’ve always hated the phrase ‘what doesn’t kill you makes you stronger’. I find it offensive, and completely untrue. Not every experience makes you stronger. It shapes you, certainly. But not necessarily in the area of strength. In fact, it could deplete your resources and exhaust you. Or it could make you hard, which is certainly not the same thing as strong.

But, while I still disagree with the phrase, I’m beginning to understand it a bit. I’m beginning to see how it can be true.

Because I crossed the line in London. I tipped over the edge. It was a huge ordeal.

But I got through it. I’m back on the other side, for most of the time at least.

And everything seems a lot better from here.

I seem a lot better.

I seem a lot stronger.