By: Christina Coates

There I was, standing in the rain on the side of the famed “Road to Hana” in Maui, grateful to the rain for camouflaging my tears.  The stinging shame was almost too much to bear.  Before HOD (a brain disease), I enjoyed new adventures.  I was the person who would get you excited to try Zip Lining through the jungle, or to hike a new trail.  Things are different now, as I struggle to walk on level ground with an unstable surface.

Before I had made it to the steep entrance to the Bamboo Forest, I thought I could make it through a grassed over path to see the beautifully rare painted bark of a eucalyptus tree.  From what the other tourists told us, these trees are only found on the Road to Hana, so how could I pass up the opportunity to see such a thing?  I stumbled through the path with the help of my dearest husband (and care giver) Wave, my sister Becky and my brother-in-law Scott, each keeping a mindful watch over my every wayward step, keeping me upright and in my forever uncomfortable contract with gravity.  Somehow, I was able to make it through, with just a small stumble over a downed barbed wire fence.  Luckily, I didn’t take my entire crew of care givers down with me.  I made it to the tree, feeling a subtle sense of accomplishment washed over me.  “See!”, I tell myself.  “I can still do some things!!”

My other brother-in-law David is a great adventurer.  He has been all over the world and was brimming with excitement to walk up the road a little and enter the Bamboo Forest on a steep downward path.  On our way to the path, it started to rain.   It wasn’t a total down pour, but it was enough to make everything slick and soak our clothes through.  We made it to the entrance, and I saw the steep, muddy, slippery steps to enter the path.  I looked Wave dead in the eye and told him, “That is not safe for me, I can’t do that”.  For the audience reading this piece that has a disability, you know how hard it can be to admit that to yourself, let alone a group of people that are excited to explore a new world.  You don’t want to be the reason that anyone misses out on an experience.  You know that you are happy to wait in a safe spot, by yourself, until the adventure is done.  You have learned to live with the pictures and descriptions of the new things discovered.  Your mind has learned to make the mental visual a delight.  It has become an acceptable replacement for the real thing.

My crew of caregivers began to encourage me.  “That is really the worst part, you can do this!”  or “It’s really not bad at all, you got this!”  It is difficult enough to feel the shame and disappointment that you feel in your own inabilities, but the weight of the pity and expectations of others is almost too heavy to bear.  Though I do appreciate the encouragement and knowing that it comes from a place of love, it is difficult to not give in and risk hurting yourself and proving yourself right.  Having to explain myself almost always brings me to tears.  It reminds me that I am no longer the person that I was before all of this happened to me. 

I encouraged everyone to please go on and enjoy themselves, but each caregiver took a turn standing with me to keep me company.  The guilt and shame that poured over me didn’t leave for the rest of that day.  The curvy roads that threw my brain around my in my skull were almost too much for me to handle.  I had already tested my limits the day before on a trip up to Haleakala, Maui’s volcano.  We went up to the top, which is above 10,000 feet, and is not recommended for people with my conditions.  I was extremely dizzy, much worse than usual.  Midway through the trip, I felt a panic attack commence.  I had not thought to bring the medication that helps me to put the attack to bed.  I had only considered bringing my migraine medication, which was not needed.  I wrote a note on my phone to let Wave know that I was mid-attack, so as not to announce my condition to my brother and sister-in-law.  I already felt like I was already being a little ‘extra’ and didn’t want any more special treatment.

We finally made it to Hana, and my panic had subsided.  On the road back, David looked at me in the rearview mirror and asked how I was doing.  I reluctantly answered, “Well, I am still alive.”  He laughed and prodded me for a more specific answer.  I admitted that the switchbacks in the road didn’t agree with my brain, and I was doing my best to get through it.  He vowed to make the ride back easier, as he was trying hard to get Wave to puke.  The ride back was much better, and I was grateful to have spoken up and make my needs known.

What I learned from this experience is that I shouldn’t have to ask to be believed.  We live in the “You Got This” culture, where people of normal ability believe that all we need is encouragement and positive reinforcement to accomplish anything.  The simple truth for many of us is that life is a bit more complicated than that.  Later in the trip, the group was exploring a lava field, which lie on a trail of lava rock and old coral.  The path was flat, but full of unstable material.  I made it a short distance in, and then had to stop and let Wave know that the path was not safe for me, and that I could just sit on a large lava boulder until the group was done exploring.  This time he believed me without explanation and continued on the path without me.  Then David came back and sat with me for a moment.  I let him know that I was fine to be by myself, and just as he began to argue with me, Becky came back and took me with her back to the parking lot because she had to use the restroom.

 Little issues like this continued to happen throughout the remainder of the trip.  There are spaces of time that I can’t remember anything at all from.  I was educated by a friend that extreme anxiety has been known to erase memories, and that it should be safe to assume that this is probably what happened to me.  I started to get a bit salty with anyone who asked me if I wanted to do something, and I knew that it wasn’t something I could do.  I certainly didn’t mean to be rude to anyone, and deep down I am grateful that they still believe that I can do anything. Nevertheless, my forever companion, HOD, made very clear to me who oversees my activities for the rest of my life.