Vacation and Coming Home

Blog post

[Image shows three spoons laying on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper is the clipart of a cruise ship and words in black text that read  “Vacation and Coming Home”. On the bottom of the banner is the URL for theecrohniegrace blog.]

Last Sunday, my dad, his fiancé, and my brother and I drove from West Virginia to Charleston, South Carolina to stay overnight before boarding a cruise that would last a week and go to Nassau and Free Port in the Bahamas.

We got to Charleston late that night after 8 hours in the car, taking stops as necessary for food and bathroom breaks. We went to a little Italian restaurant, I gave dad his father’s day presents which consisted of a Star Wars shirt that said “I Am Your Father”  and some homemade black raspberry jam from the festival I had attended the day before we left. We went to bed early, since we had to be up early.

The next morning we put our luggage into a car drove by one of the workers with the Carnival cruise and headed to the Port. It wasn’t a very long car drive, but it felt like it. I was pretty anxious about customs and dealing with security with my medical equipment. And rightfully so.

My first meltdown of the trip would take place during the security walkthrough. I was attached to my feeding pump at the time, so I cleared out my pump backpack of the few makeup items I carried in it and showed the lady. She nodded and threw my backpack down a conveyer belt… while it was attached to me. Naturally, I panicked worried about my tube. I started crying, my dad explained to the woman that I was attached to it, and that it would leak if unhooked.

While already extremely overwhelmed by the people, the noise, and the security lady almost ripping my tube out, they sent me to get patted down by security. I do not like being touched. Not at all. Especially not when I’m already in meltdown mode, so this only set me off more. I was completely embarrassed and felt like a fool but I couldn’t stop crying the entire time, and for a good while afterwards. What my family didn’t understand is that after a meltdown I shut down, I do not talk, I can’t tell them what is bothering me, I can’t process my feelings, I can’t answer questions, and the smallest things will send me right back into the fit of tears. I stuck to counting to four in my head, repeatedly. It was the only thing keeping me from not being a threat to myself in that moment, since my meltdowns often lead to self harm tendencies of hitting myself, a need to get rid of something that builds up inside of me. Like when you fill a cup of water too full and it starts overflowing, the overflowing is the self harm or the need to flap my arms or just do something to get rid of the excess feelings that I can’t identify.

Once we got on the boat, I was able to settle down in my room with my brother. There was still soooo much to take in. There were so many times I felt like crying on the boat, and not because I was unhappy, I was very happy, just because it was SO much! I can’t find better words to sum up it. The boat had close to 2,600 people on it, 12 floors, and a ton of noises and lights and if you asked me how I felt, I honestly couldn’t tell you in words. It was overwhelming, but not necessarily in a bad way.

The first day at sea I went to a seminar on knee and back pain in what they called the China Town Lounge. I was the only one who showed up. I met an acupuncturist doctor from China named Xin Zhong. He and I sat and chatted for a good hour, first him asking about my health and he did a few needles in my knee to show me how acupuncture worked. Then we talked about China, about his time in LA, his job on the boat, about Chinese medicine and how they use things like people’s pulse and how their tongue looks to determine what was wrong with people, and that in China every hospital had acupuncture. He asked me about college and what I wanted to be, and told me I should set up a consult with him on the ship to try acupuncture to see if it would help me with my pain and digestion.

That day I also won Game of Thrones Trivia. I was the only person who knew that the TV show came from the book series A Song of Ice and Fire by George RR Martin. I won a little ship trophy for my knowledge and became friends with another one of the cruise workers, a man from Canada named Francis.

The rest of the day was a bit of a blur, I started getting motion sickness and took some medicine to help with it but it made me a little drowsy. The morning sickness was gone by morning though, which was good because it was the day we would be on the island of Nassau. We checked off of the large boat and then got on a small boat. This boat took us to a beach area where you could swim in crystal clear waters and snorkel off the reefs.

[Image on the left shows me sitting on my knees leaned back in crystal clear waters. Wearing black swim shorts and a dark blue and light blue striped top. I have my glasses on. The Image on the right shows the dock with beautiful blue waters and a group of seagulls on the dock.]

At first I just swam in the waters, excited at the feeling of being weightless and being able to see straight to the bottom at all times. We did that for a good while before my brother and dad decided they wanted to go snorkeling. They rented equipment, but I couldn’t use their goggles because of my feeding tube which meant the goggles wouldn’t seal to my face properly. So I instead found a gift store that sold just the eye piece goggles. I got those and followed the boys excitedly out to the reef.

The reef was very rocky and slippery and I slipped a couple of times and fell before reaching the drop off. But immediately upon going under it was beautiful, I was overwhelmed with just how cool it was. There were tons of fish, brightly colored and dull, large and small, coral, urchins and more. My dad had his go pro and was following fish with it. My brother had an underwater camera and was taking photos. I was just enjoying the view and praying I would remember every single detail of it and of the moment.

We swam around for almost an hour. I found a rock I could rest on and catch my breath. My dad was heading back to the beach and my brother was chasing fish trying to catch them. I just sat there and took it all in. Again, there was so much going on all the time, I found myself often just sitting mesmerized at everything around me, trying to process it and the feelings I was feeling. For some reason I wanted to cry, I wasn’t sad. Just excited, happy, amazed, awed. There were a lot of feelings, I couldn’t make them all out at the time.

cruise3

[Image of my brother, my father, and I at Nassau by one of the inflatable water playgrounds they had set up at the beach. My brother is making a peace sign and leaning against the dock’s rails, my dad and I are pointing at my brother and smiling.]

We finally got back on the smaller boat after I took photos of stingrays and dolphins and got back on the cruise ship so that we could go to the second island stop the next day.

There were tons to do on the cruise ship, I already can’t remember everything, which was my biggest fear on the cruise was that so much was going on that I wouldn’t remember the things going on. I remember details of things but when I try to think of it all, it’s like a blur of images in my head that I can’t really find the words for. I wish I could explain it better to people, but it’s something that just is hard to explain or understand.

The second day we went kayaking in the mangroves of Free Port.My dad did most of the paddling while I manned the cameras. The water again were so clear you could see straight to the bottom. We saw parrot fish, silver jacks, tons of little yellow and black striped fish, needle fish, and so much more. We also saw some birds. After kayaking we went down to the beach where we saw a family of Raccoons. We got to go out in the ocean again there where we saw more fish that just swam in between us right out there.

cruise5

[My brother and I standing in front of a sign that is mint green, pale yellow, and white. In dark blue letters the sign reads “Welcome to Freeport Harbour Grand Bahama Island”.]

Once we got back into town we stopped at this little gift store which was the cause of my second meltdown of the trip. The gift shop was extremely loud, not only from the people but also the music, I was exhausted from canoeing and there was so much going on. My brother took off to find something to take home to my grandma, I had only brought a little money with me and was anxious because the prices were not cheap, I too wanted to bring something home for my mom and my boyfriend, and also was looking for a shirt or something for myself to remember all of this by, because like I said, my memory is not the best, even now I can’t remember it all.

It all got to me, and even in Therapy today I couldn’t figure out what caused it. I just felt the need to get out of there so I left the shop in a fit of tears and sat on the concrete by a puddle. I wasn’t upset or sad, but I also couldn’t find the words to tell my dad or Sara that. So I just became an embarrassing puddle of tears. All I could think was, I will never be back at this place, and one day I will forget it, and I hadn’t taken my camera with me that day so I didn’t take any photos, I had videos of the things we saw but I hadn’t gotten photos of dad, or Sara or my brother. I felt extremely overwhelmed by it all. And my dad kept asking me what I wanted to do. I couldn’t make up my mind. I didn’t want to leave but I didn’t want to stay. I felt the need to disappear, to just be as small as possible so nobody would have to see me in the fit of tears I was in. Nobody understood what was going on, and it’s not like I could explain to them that I was going through a sensory overload, not that I’m sure they would understand even then.

Eventually we left. It took hours for me to stop crying, I still have NO IDEA what I was feeling or why. I’ve replayed it a hundred times over in my head, it doesn’t make sense. Even in therapy today, trying to talk about it, I was reduced to the same embarrassing puddle and I don’t think my therapist even had a good answer. It’s just how my brain is wired, she tells me. Which doesn’t make me feel any better.

I learned that saltwater is not very good on adhesives after having to change my ostomy after each time in the ocean, and my face tape coming loose and causing my feeding tube to get pulled.

The last day I went and had acupuncture done. It was a really cool experience. First he (Xin Zhong) massaged my upper back and tried to find the areas where “energy flow was blocked” he said which is what caused illnesses and pain. After that he started with my upper back, first with 16 needles from my neck to my shoulders and shoulder blade. I couldn’t feel the needles, just a warm sensation that they caused, which he said was because my muscles were extremely tight and tense, he assumed from being in pain all the time it had caused my muscles to tense up.

He left those in for about 20 minutes while we  talked more about his childhood, how he loved dogs but when he had a dog as a child his mom made him get rid of it. He wanted to get another when he got home. He also wanted to travel China and see the Great Wall, Hong Kong, and the Terra-cotta Warriors. How he thought it was ironic that the name of his town when translated into english roughly meant always springtime, even though the only seasons they really had were summer and a long winter.

After that he did my lower back and hips, about 20 to 24 needles then. One of them caused an odd feeling like a lot of pressure which he said was because of all the blocked energy and muscle tightness. Again, he left those in for 20 minutes or so while we talked more. About the music he liked, the food he liked, how he hated American food and the way it tasted and how even Chinese food in America tasted off.

After those needles came out he then did a few on my face and ears to help with my sensory input as I explained to him earlier in one of our conversation about my struggle with sensory overloads and too much stimuli. He did two on my cheeks, one between my eyebrows, and two on my ears. None of them hurt, but it definitely was weird to be able to see them out of the corners of my eyes.

And lastly he did my legs, this one he used the most needles on since it was my primary complaint aside from my back. About 50 or so needles were placed from my upper thighs and hips to my ankles, all according to a path of energy flow he talked about that was blocked off and was causing my pain.

After nearly an hour and a half of letting him stick needles all over me, it was all over and I was free to go. And I honestly did feel a lot better, less tense, more energy. Maybe it was the adrenaline, or being able to relax around him in a way that I can’t with other doctors or even most people really, but I walked away feeling much better.

The rest of the day I did activities with dad, Sara, and my brother for the last day of the cruise. We even got a family photo taken.

cruise1

[Image shows me with my cane in a navy shirt and khaki pants, Sara in a black, white and teal dress, my dad in a matching teal shirt and khakis, and my brother in a red shirt and grey jeans in front of the cruise ship.]

That day my formula bag leaked and ruined my phone. I tried to pretend it didn’t bother me, but I am upset over the photos I am going to lose because of it.

The next day we got off the boat, a lot easier than the struggle I had getting on the boat. We drove home, unpacked and rested. Vacation was over and I felt a little numb from it all. It’s like the saying what goes up must come down. All the overloads and stimuli were gone, I was back to my house, and while it felt peaceful, it felt empty. It was just adjusting to the lack of stimuli.

Being home brought on new problems, upon lifting my luggage I pulled a muscle by my stoma that still hasn’t stopped aching, I had to pull my tube because where it got tugged while snorkeling it was misplaced, I had therapy coming up and have been growing annoyed at hearing the same thing each time I go: “It’s just how you are wired.” Like okay, I get that, but I want something done about it. I want solutions better than just repeatedly counting to four. And then incompetent doctors who cannot communicate to one another. The local radiologist who does my placements wasn’t working at the lab, so the only way I could get my tube replaced is to go to the ER and have the basic tests run, and also the radiologist was refusing to replace it until I get some test done to prove I didn’t get any infection from snorkeling which makes zero sense when they are still planning on doing my entyvio infusion Friday.

And after a rough day at therapy, and a lack of people understanding, and doctors who can’t do anything, I really feel like throwing in the towel today and just saying “Screw it. I won’t get my tube back. And I’m not going to my infusion. I’m not taking any of the ridiculous medicine and I’m not doing any other of your ideas. I’m done. Screw you.” Cause honestly I’m just really tired of it. I know that that isn’t an option, to just give up. But seriously, I’m so tired of it all. I wish I could go back to that rock I was sitting on in Nassau and watch the fish swim by as my brother tried to catch them and everything was so much more peaceful and surreal. It feels like a distant dream now, if it weren’t for the photos, I would almost believe it was.

 

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