Let me start out by saying that my trip to the Outer Banks in North Carolina or the OBX as its often referred to, was a once in a lifetime experience. Mark’s family from all over the east was there and my boys will never be 6 and 4 again and who knows when or if we will make it back. Furthermore I had an amazing 7 days, watching my kids play in the pool and on the beach. But…..this was a vacation I was very apprehensive about and so were Dr. Ken and my Neurologist. Why you might ask? Its a vacation, aren’t they all about relaxation and what not? Let me give you a first hand look at what its like to have Chiari and go on vacation….
According to Google Maps its a 38 hour drive to Corolla NC, the town where we were staying. Not wanting to have to rent a car big enough to carry all of our luggage, nor take off all the extra vacation days we opted to fly. This was our biggest mistake. I had heard rumors that Chiari patients had a hard time flying due to the change of altitude and pressure, especially in higher altitude flights. People kept telling me that couldn’t happen, the cabins are pressurized. I even got into a somewhat heated argument with a friend of mine, I told him “well how come your ears still pop then and babies have such a hard time with it cause their ears don’t pop by themselves?” I was hoping they all were right and I was wrong, but just in case I was right we were flying in the night before our beach house was ready and sleeping off whatever headache I had from the traveling so we would be fresh for Mark’s Dad and step mom whom we were meeting at the house the next day. Our first flight I didn’t feel it so much, it was such a quick trip and who knows how high we even flew. It was a 40 or so minute flight from Salt Lake to Las Vegas. The next flight was torture. It was a non stop from Vegas to Norfolk, VA. 5 hours. That is when I started feeling the pressure. It wasn’t like a migraine I get from activity it was just like my head was going to explode. I started feeling nauseous. I felt like I was going to puke my guts out. My left side went completely numb, and my surgery site, the place they took the piece of my skull was achy as achy gets.
If the actual flight wasn’t bad enough my disability was right in my face at the airport. I was in my wheelchair the entire time until I was on the plane. With me being in the chair, we needed assistance getting to our gate and such since we had all our bags, the kids booster seats and the rugrats themselves. Southwest did a great job helping out but as a independent person and someone that is just recently disabled I had a real hard time with it. I couldn’t even go to the bathroom in the SLC airport with out my chaffer pushing me all the way into the bathroom and asking me if I was okay every 2 seconds. Yes I appreciate your help but I seriously just need some space! Then there was the dude in Chicago on the way home that had to ask twice if the wheelchair really was for me. Yes, I know I don’t look like there is anything wrong with me, but I guarantee if you make me walk from one gate to the next I will collapse on you. It was hard getting pushed around in wheelchair all day even though when I saw how far we had to go from gate to gate I knew my butt was exactly where it needed to be. But the stares you feel on you and the insecurities that come with being disabled, you would never know unless you spent a mile in my chair.
We got to the house and it was everything I pictured and then not so much. The house looked just like what we saw on the internet, 3 floors, our bedrooms on the middle floor, the kitchen and so forth on the top floor. How come when you see things on line or in pictures they are so much more do-able or no big deal then when they are right in front of you? I felt trapped on the whatever floor I was on because of those stairs let me tell you. But when your husband, your kids and the rest of the family keeps changing floors for whatever activity you do what you have to. Then there was the beach. It was right there just like on the internet with a walk way and everything. Problem was the walk way was full of stairs that I couldn’t take my wheelchair on. So not only did I have to walk the very long walk-way (okay so to a normal person it was not that long, but to me it was longer than I am used to walking at any given time) I also had to walk the beach. Beach walking is tough for anyone. Its hard to walk on the sand, it just is. So in just the first few hours I was already disappointed, upset at myself for thinking it was going to be easy, and just depressed. But who could complain about such a thing? The house was amazingly gorgeous, it had a hot tub and a swimming pool right there in the back yard and the beach was right there, I mean right there across the street.
I’m guessing those feelings just pilled on top of what came next. I started to feel alone in a house of 8 people. Did you know that I’m the only one that cant go to Jockey Ridge National Park? Or that my medication makes it so I cant stay out in the sun for hours and hours? Or that I cant go to Uncle Dave’s and theirs cause they have way too many stairs? Or that I cant do whatever……. I heard Misty cant do……… so many times I wanted to scream. I felt like such an outcast. I felt like everyone including my boys and Mark would have had a better time without me. I never wanted to say anything about the way I felt left out cause I know no one did intentionally I just bring it up now to let others know what its like to have limitations others don’t. Its even harder when you are an in-law and you feel alone. Every single one of Mark’s relatives were all very nice to me but, I didn’t know a lot of them. Luckily I did know the people staying in my house, Mark’s dad-Dan ,his step mom- Beth, Floyd, Mike and us.
Every-once in a awhile I got stubborn and sick of being handicapped, which my doctors probably knew I would and is why they gave me as much medication as they did, and we did do a few things some of my favorite things we did was: Looking for crabs at night with Mark’s cousins DJ and Brandon. You may want to keep an eye out for Brandon, he is one heck of a football player and will be playin for one of the big colleges in a few years…..just wish I could convince the kid Utah is the way to go. Our surf and Turf night that Beth cooked us was OMG AMAZING!!! The whole family from the other house (all of Mark’s other family) came over and ate and hung out, one of the best nights by far. Mutiny Bay golf course. We took the kids to this really cool golf course one day, we were dripping sweat by the 11th hole but so worth it. Our last day at the beach there was a sand bar we all went and stood on and while we were out there dolphins were swimming real close and Scott finally got to see them.
I would do this vacation again in a heart beat with one exception I would drive. Like I said It was a once in a lifetime thing, I may have felt like an outcast and alone but that is just part of having Chiari. I will always feel like that, everything is harder for me than it is for a lot of you. Just simple things. I cried from being in pain at least once every day on this trip but it doesn’t mean I would rather be at home.