Music festivals and MS
Festival season is upon us, and our friends at this point might be pressuring us to join them there at least for one day. An evil temptation for music lovers like myself indeed, so this year I finally succumbed.
I had never been to a music festival before, mainly because I didn't think I would enjoy the hopping from concert to concert without actually having time to let the impressions sink in between concerts, and because, I'll admit it, the thought of the less than comfortable conditions drove me away. After many years' reticence, I finally agreed to hop on the festival train this year (for a single day, though!), which is ironic considering my recent diagnosis with RRMS. I guess the whole “yolo” craze got to me somehow, and I felt like this was the time to embrace the moment. But of course, this wasn't without fear and apprehension. What if my foot starts acting up, what if my legs give up on me while standing among the frenzied crowd? Will it be appropriate and safe to wear my AFO? What other preventative measures can I take?
As the date got nearer, weather predictions for that day became more and more accurate: completely cloud-free sky and one of the highest temperatures we've had this year. Oh dear. To tie a nice bow around my nervous feelings, an exacerbation of paresthesia in my left hand began a week before the x marked in the calendar. The day before the departure, I went to see my neurologist. We agreed that two attacks in one year were too many, so we started running the tests for the JC virus in order to know if Tysabri would be a viable treatment for me instead of Avonex. Results still pending. With these things in mind, I made my way to the festival with a backpack full of palliative cannabinoids...
Upon arrival, I noticed the seemingly endless ocean of tents and dust. The concert area was still far, but with the inevitable breaks caused by the blazing sun, I made it there safely and without too many problems. The first concert, however, was in the middle of everything, which meant unprotected sunlight and no shade anywhere near. The concert was one of those that wanted you to jump, so everyone around me would push and bump into each other creating the dreaded waves of percussions that could make one's spaghetti legs collapse instantly.
In this overheated state, even the closest tree seemed miles away. But I made it there and managed to enjoy the music from a safe distance. Luckily there was no rush to make it to the next concert, which was also quite far from the previous stage, so I could take all the necessary breaks with good conscience towards my friends. As I noticed that breaks were enough to keep my drop foot from acting up, I opted for this solution instead of putting on my AFO. To my greatest surprise, I noticed many people being driven or pushed around in wheelchairs and that special platforms had been made for them to enjoy the concerts. Worse comes to worst, I thought I could rely on this possibility.
The second concert was under a tent, which meant much more favourable conditions for my body and an impressively sudden strengthening of my previously frail legs. There was some dancing, although still with a hint of precaution and self-awareness. The burning sensation caused by the accidental rubbing of my left fingers against something would quickly snatch me back to reality.
As the afternoon went on, the temperatures went down and I felt like I could now handle a beer. This was a risk, but in these chaotic conditions, a risk I would only take if I knew I could handle it. And indeed, I could. The next concert was on the other side of the festival area and night had now fallen. Like a vampire, I finally managed to break out of my fearful shell, had another beer and danced along with the crowd. I could finally enjoy the festival! This had seemed like a very unlikely possibility throughout the first half of the day. I could now gladly skip from place to place without the fear of being knocked over by the hectic crowd jumping around the area.
As the short Scandinavian summer night came to an end, I made my way back to the bus stop along the same path. It now seemed like a much shorter and friendlier journey.
At the end of the day, this turned out to be a very positive experience and a challenge I'm glad I accepted. The positive outcome of the day had an empowering effect on the confidence in my own body and a renewed awareness that with the necessary adaptations, everything is still possible. After all, what's the rush?
To sum the whole experience up in a simplified verdict, three questions were answered:
Am I glad I finally had this experience? Most certainly.
Do I regret not having done this before? Maybe.
Would I do this again? Probably not.
But that is the own humble opinion of someone who regardless of his condition never much enjoyed crowds.
Would it have been helpful to hear from others and their experiences when you were beginning your MS journey?
Join the conversation