Pushing Through Limitations With Accommodations

Have you ever been invited to a concert or event and said yes, only to realize it might be a problem with your narcolepsy and/or cataplexy?

I was invited to go to a concert with some friends next month. When they asked if this was something I would be interested in, I did not hesitate to accept their invitation! It has been so long since my husband and I have done anything like this, so I said yes without fully appreciating how I would be affected.

Feeling bad about myself for canceling

You would think my narcolepsy would be the first thing that enters my head; however, sometimes my thoughts do not catch up with me until much later. Once I realized what obstacles I may face, I convinced myself that I should not go.

Calling my friends to cancel is not something I enjoy doing. It makes me feel bad about myself. I also feel bad for my husband and all the events we have missed through the years. He could have gone without me, but he said he would rather stay at home.

I knew he would love to go to the show, but he is very supportive and rarely goes anywhere fun without me. I love this about him, but I also feel it is my fault he misses out on so much.

Fearing that I would have a cataplexy attack

The venue is standing only, with no seating. This is what concerns me. If I get excited or dance, I may have a cataplexy attack or get extremely sleepy. Finding a place to lay down in an environment like this may be impossible, and I do not want to embarrass myself by collapsing.

When it happens at home, my family knows what to do. If I collapse in public, I have no control over what others may do to me while I am down. One of my biggest fears is for someone to start CPR on me while I am unable to move. I have had lucid dreams of this, and it terrifies me!

Emailing the venue about accommodations

I decided to email the venue and see if there was an area where I may sit in a reserved seat due to my medical condition. I was so surprised when I received a return email saying they had a solution!

They have a small section for people in wheelchairs and also have a couple of tables in that area. The email stated I could sit in that area with my party, and this way I would always have a "home base." How amazing is that?

I was so thankful to be given a way to enjoy the show. Why didn’t I think of this before? When I think of a disabled section, I have never considered any other condition besides a mobility condition.

Changing how I approach event attendance

This has opened my eyes to a whole new concept! I am not going to automatically say no when invited out! I will say I am interested and then I will make a call to the venue and ask what their seating arrangements are. This can be useful for all kinds of public gatherings.

Even after being diagnosed for 15 years, I am still learning what works for me to live a productive life. I have missed out on so much through the years, and I want to change it! I will never grow or enjoy life if I do not take chances!

Stepping out of my comfort zone

I will be stepping out of my comfort zone for the concert, and I am proud of myself for trying!

Do not limit yourself by worrying about what might happen. Do everything you can to ensure your safety while enjoying life like you should!

Have you ever had to coordinate accommodations for an event or gathering? How did you approach the process of securing accommodations? Share with us in the comments below!