NKOTB cruise 2013, OR coming home again

Posted by Jessica Jewett 23 Comments »

NKOTB cruise 2013Being on the NKOTB cruise this year was not supposed to be in the cards for me. I certainly didn’t have the money, but the bigger reason was that my health has really deteriorated since last fall.

Let me give you some back story first. A lot of people will read this blog who don’t know me and it’s important to understand why this cruise was a major turning point in my year. I have a congenital disability known as Arthrogryposis, which means I’m completely dependent on a wheelchair. This past December, January, and February, I was repeatedly knocked down by bronchitis, strep throat, and the severe strain of flu that was killing people. My immune system has been compromised for many years, so relatively simple illnesses like bronchitis or strep throat can turn fatal for me if I’m not careful. In January, my family had to call 911 and I was hospitalized because the pile of illnesses was suppressing my respiratory system. It took about six weeks to recover.

Being so ill for so long aggravated my anxiety disorder as well. The lack of control over my life and being completely dependent on other people for survival, as well as trauma from sexual, physical, and mental abuse at different times in my life have made me extremely prone to panic attacks for about fifteen or twenty years. Generally, I have a handle on it. The last six months have been extremely hard on me, though, and I relapsed into the worst of my depression and anxiety before I sought treatment. It was getting to the point around my birthday (February) where I was honestly questioning why I was alive at all, not that I told anyone.

One day this winter, my friend, Wendy, texted my other friend, Sissy, and me to tell us that we were all going on the cruise together. I was stunned and thought it was too much, but I also knew Wendy was not going to take no for an answer. To be truthful, I had a hard time finding motivation to even get excited about it because I was just so worn down by my health. There were times when I had to give myself pep talks like, “You haven’t seen Jon since 2011. If you don’t go, he will forget you. You don’t know when you’ll get another chance to see him. He always makes you feel better. Come on, get it together for him.” Get it together for Jon became my mantra in the six weeks before the cruise. Aside from my friends, he was my motivation.

NKOTB cruise 2013I got into Miami with Wendy the day before we were to board the ship, and Sissy arrived later that night. Getting in with time to spare gave me a chance to spend the day with my brother and his girlfriend, who also live in south Florida, since I hadn’t seen them in a few years. Being out and doing things in the hot Florida sun was a bit tough for me after spending months at home convalescing, but I pushed myself to do it because I knew it was for my own good. I needed to be around people who loved me. My brother took us out to lunch and dinner. He took me to Walmart to buy the things I needed. That’s how he is – he almost takes on a fatherly role with me sometimes because he doesn’t trust other people to properly take care of me.

The next day when we boarded the ship, we found that we were technically put into a wheelchair accessible cabin but the cabin was so badly designed that I couldn’t get anywhere. You open the door and you were faced with the bed and television only inches apart, so you couldn’t pull a wheelchair into the room enough to even close the door. Then the bathroom door wouldn’t open more than a few feet because it banged the end of the bed. So I couldn’t even get into my own bathroom. Wendy took charge and rearranged the cabin herself so I could at least get inside, but there wasn’t enough room for a third bed because of how badly the cabin was designed, and Sissy had to fold and unfold her bed on the floor whenever she wanted to sleep. Rose Tours was wonderful this year with disabled passengers and I have absolutely no complaints about them, but Carnival is progressively becoming worse and worse each time I cruise with them. Even the quality of Carnival’s food is on the decline. The ship smelled moldy, my mattress was slumped way down in the middle, and there were little bitty ants in my shower.

Luckily, NKOTB cruisers don’t spend a lot of time in their cabins! I was not willing to let a shoddy cabin ruin my cruise!

The first afternoon of the cruise was tough for me because crowds are one of my panic triggers. When you are as small as I am and you’ve had a leg broken before because of fangirls trampling you to get to Jordan Knight (true story), crowds will make you uneasy. Everybody usually mobs the buffet before the sail away party and we had to feed the pregnant lady (Sissy), so I ended up in a confined, crowded dining room. Something in my brain went, “You have no way out. There is no escape away from these strangers and this ship.” Boom. Instant panic attack at the lunch table. There’s very little logic with anxiety disorders and I knew I was going to struggle more this time than my last cruise in 2011, but I was still very disappointed in myself for not controlling it better.

NKOTB cruise 2013I figured out fairly quickly that being outside on the lido deck was easier for me to tolerate. I didn’t feel so confined and trapped as I did inside the ship, so my best times on this cruise were when I could be outside enjoying the guys, the weather, and the music. They put the disabled section next to the stage in a place where we would be guarded by security but we could still participate in everything the guys did with the cruisers. This setup was the best of all cruises. On the first cruise, disabled passengers had absolutely no safe place to go, so I’m giving Rose Tours a lot of love for listening to us about what we need to be safe and included.

My first encounters with the guys happened at the sail away party as we were leaving port. They came out on the upper deck like usual and then they came out on a stage built over the elevated pool. Donnie spotted me first and made a dash off the stage to hand out kisses, hugs, and pictures to everyone in the disabled section. For a man who has to make himself available to as many people as possible, he really does try to remember everyone and love them even when he’s exhausted. He deserves a lot of credit for that. Somebody got video when Donnie greeted me at this party. I think I come in about halfway through the clip. I’m a brunette with glasses and I’m wearing a turquoise and white striped halter top. You’ll see him stop in the row in front of me. What he did was pull down his sunglasses and wink at me before hugging another lady. Then when he got to me, he kissed me, asked how I was doing, cupped my face in his hands, etc. The lady filming it pulled her camera away before we were done but he told me he loves me, he misses me, etc. I do love this man very much.

NKOTB cruise 2013Sissy got this picture of us that floated around the internet before I even got home. I saw some people speaking of me in disbelief or even disdain because the angle makes it look like Donnie’s trying to kiss me on the mouth but I turned away, as if everyone is obligated to kiss him on the mouth if he wants it.

I would like to be clear that Donnie has never kissed me in an inappropriate manner. Donnie has excellent intuition and he knows which women want to flirt and which women do not. I’m personally very old-fashioned and I never kiss men with whom I’m not in a relationship – even the mighty Donnie Wahlberg. It took me two or three years of knowing Jon to even want to kiss him, not that he would, but it just takes me a while to get there with anyone. (Hint, hint, Jon.) My friends are well aware of my “Victorian sensibilities” as they call it, so it never occurs to them that outsiders might react weirdly about it.

Donnie has always treated me tenderly with respect like a true lady, and when we kiss, it’s on the cheek or the forehead. I’ve never had to ask him to respect my personal boundaries. He just knows on an intuitive level. So no, I didn’t reject the mighty Berg like the rumors say. I’ve never had to reject him because he makes me feel absolutely loved, secure, respected, and necessary. We kissed cheeks in this picture as you can see in the video too. No rejection. Just love.

NKOTB cruise 2013

NKOTB cruise 2013Joe came through my section a little while after Donnie did. I have an interesting relationship with him even though we haven’t interacted quite as much as Jon or Donnie. He’s been trying to get my attention for years, although I don’t quite know why he’s so interested in me, and I feel bad because he’s called me out on paying more attention to Jon than him. A few years ago, Jon and I were talking and I didn’t realize Joe was standing right there waiting for an opening until he piped out, “Hey, I know you love Jon but can’t I at least say hi?!” He has said before that he tries to sing to me on stage too but I never seem to see him doing it. I always feel bad because missing Joe seems to be a repetitive thing I do without realizing it.

So this time, Joe was simply not going to be ignored. He worked hard to hold my attention, beginning here with the sail away party. We talked a little bit, kissed cheeks, had a cuddle, and as he was moving on to the next person, I said something like, “I don’t think Jon knows I’m cruising, so could you let him know?” He nodded and said he would but I couldn’t see all of his face. Sissy said it looked like I crushed his little heart by asking for Jon. In my defense, it was an impulse after I gave him lots of attention and he was on his way out. I didn’t mean to make his little face fall. I do love Joe!

Sigh. One day I will understand Joe’s needs and get better at meeting them. He wasn’t done with me yet though, as I found out at my concert a few nights later.

NKOTB cruise 2013

It wasn’t long after that when Jon hopped down from the stage to give hugs and pictures with the disabled section too. I thought he had seen me earlier because he looked right over me. I thought he was at least vaguely aware of my presence. Not so. He had no idea. The man has such serious tunnel vision that he was in the row in front of me – we’re talking like five feet away – when he looked up at me and realized I was there. I wish I had a picture of his reaction because it was hilarious. His jaw hit the deck and his eyes got huge, and then he hopped up and down like an excited toddler. The closest thing I have his his reaction to Sissy next to me, which was after he plowed over a bunch of fans to maul me with cuddles (I’m sorry to the people he plowed over but he tends to have a very one track mind when he wants something).

NKOTB cruise 2013

I really didn’t even have time to say hello because he came at me so fast. He mauled me with this full-on starfish hug like we hadn’t seen each other in years, and then I remembered it has been a long time. He mentally added up how long it had been since we last saw each other. He kept caressing my face, my arms, and cupping my cheeks in his hands while we were talking. Honestly, his eyes looked rather emotional and he didn’t say much at first. He was just touching me a lot like I can’t believe you’re here. Then he’d wander off to socialize with other fans and he’d bounce back to me to tell me about this or that fan. Honestly, I didn’t expect him to have such a big reaction. I thought he’d be like oh cool you’re here too, because, you know, who am I really? Nobody of importance. There was no denying how happy he was to see me though, and he was rather excited to see Sissy and interrogate her about her pregnancy.

NKOTB cruise 2013

NKOTB cruise 2013

NKOTB cruise 2013

NKOTB cruise 2013

NKOTB cruise 2013

NKOTB cruise 2013

This is probably one of the best moments of my life. The unexpected moments usually are. I will never forget his face when he saw me. I felt like I really did matter to him for the last five years that we’ve known each other. It’s very easy to get lost in the shuffle where NKOTB is concerned because everyone wants their attention. It has been such a long time since I saw them last that I didn’t really think they would care or remember me. They all seemed thrilled that I was there though, and given my problems this year, I really needed that healing experience of being loved without demands or expectations. I felt wanted in their lives that day. It gave me courage to keep pushing forward with my life because people really would miss me if I wasn’t here anymore.

That night was the game show. I have to say how respectful, again, Rose Tours employees are with making sure the disabled passengers are seated in good places. I had second row on the right side in the theater with Sissy and Wendy, which was amazing. We kind of made friends with the sign language interpreters and I’m pretty sure Donnie had a crush on the blonde one! Game show night is always one of my favorite nights because I laugh until my face wants to fall apart. Jon was a little inebriated, so his mouth just had no filter. Very few people can make me laugh as much as these guys do.

I think the next day was Half Moon Cay if I remember right. Sissy being pregnant and me being in not-so-great health, we decided to go to bed early rather than go to the retro red carpet party. My body just can’t tolerate partying all night long and then going to the beach all day the next day. I was in the blue group, so we were the first people with the silver group that had to catch the tender out to the beach that morning, so sleep was important.

This is what beach day looked like.

NKOTB cruise 2013

NKOTB cruise 2013

There were games on the beach hosted by NKOTB. I think they had fans run an obstacle course a few times and Donnie was out in the ocean with a microphone, which scared Joe a lot. He was convinced Donnie was going to either ruin the microphone or electrocute himself out there while he was schmoozing with fans. Then they played tug-of-war with fans. The only level part of the beach was right in front of me, so Victor (the bodyguard) sort of threw himself between Donnie and me because if his side lost, he was going to be flung directly into my lap. So this was my view for that game.

NKOTB cruise 2013

I love looking at the ocean even though getting me into it is a bit like trying to get a cat into a bathtub (I’m not above clawing people either). Beach day was tough for me because I had another panic attack. The choice for wheelchairs was to either sit on the pirate ship or under a tent on the beach, so I opted for the tent because the breeze was better there. I had a front row seat for the games led by the guys, and that was awesome, but I overheated. Sitting in a wheelchair is a bit like wearing a coat when it’s 90 degrees. It’s no cake walk. Sometimes panic attacks are not triggered by fear but biological reactions. When I overheated, I got dizzy, and I sort of freaked out because I thought something was really wrong. Blah, blah, blah, I had a panic attack that went on for a half hour and I guess the guys could tell something was going on because Sissy said Joe and Jon in particular were looking in the tent trying to figure out what was happening without being obvious.

I felt guilty. I didn’t want to be in the way or irritate other people around me on their beach day. I still feel guilty about how much care I need just to survive a day and I struggle with feeling my worth as a person with value to those in my life.

When I was feeling better, I saw that Donnie came trudging across the beach right at me and his face was rather grave. It kind of scared me because he looked worried and I’m not used to people being worried like that except my closest friends. He discreetly asked me how I was or if I was okay (I don’t remember the wording – panic attacks affect my memory) and I knew I had to tell the truth. I tried to make light of it and said I overheated and had a panic attack. His reaction was to immediately hold his cold drink to my face. He rubbed the drink up my cheek and across my forehead, and then I felt him smoothing back my hair. I thanked him but I still felt guilty for showing that I’m not as strong and healthy as everybody else. He told his security to go get Jon for me, which they obeyed right away, and I was grateful for that because I needed to get back to the ship and rest in silence.

Jon came along a few minutes later and he simply sat down next to me for a while without really talking. He was simply a calm presence there with me, which helped a lot, although I again tried to play off my panic attack as nothing. I know he was exhausted and I was grateful that I didn’t really need to try and be witty in conversation, although we did talk about the games and stuff that day.

There were pictures of Donnie and me, and Jon and me from beach day but I don’t have them yet. I’ll update the blog when I get them.

That night was pajama and movie night on the lido deck. After a long nap, Sissy, Wendy, and I went out there to watch everything. We were late for the cruise DVD but luckily we all got copies, so I can watch it later when I have time. The deck parties are pretty well documented by now. I don’t need to go into a lot of detail about them but I’ll post a few pictures from pajama night.

NKOTB cruise 2013

NKOTB cruise 2013

NKOTB cruise 2013

NKOTB cruise 2013

The day we docked at Nassau was easy. We decided not to go ashore because, really, if you’ve seen Nassau once, you’ve seen it all for every visit after the fact. Not having scheduled events for most of the day meant that we had freedom to roam the ship, go to the pool, etc. We went up to a certain deck to see Codie and Abbie at their cabins. They weren’t there but we ran into Jon’s and Jordan’s sisters instead, so we talked for a while. Jon was still sleeping and we had a giggle about him wanting to be up by a certain time but he probably wouldn’t make it (he was really exhausted).

At lunch in the buffet dining room later on, Jon happened to show up in the food line. I was eating at a table with Sissy and Wendy. He saw me across the room and his face lit up as he waved at me. I smiled back and returned to my food thinking he was just passing through. Not so! He dragged his security across the dining room and came over to talk to us for a few minutes.

I got to spend some wonderful relaxed time with my friends and they talked me into getting in the pool again. I’m afraid of water because I can’t swim but on the 2011 cruise, I did get in the pool. Donnie happened to walk by at that point and he was completely shocked to see me in the water, so he hung out for a little while. He told Jon all about it later, and that night he told me how proud he was that I did it. So this year, Jon pointed at the pool at the sail away party and asked if I was going swimming again. Getting in the pool on NKOTB cruises has become a bit of a tradition for me, I suppose.

This time, it was Abbie, Wendy, Codie, Sissy, and a new friend, Amy, who were all there and promised nothing bad would happen. Amy just happened to be at the pool and I don’t think I knew her before, but she volunteered to help out. Presto – a new friend. Why? NKOTB fans do actually help each other despite the craziness sometimes. As it turns out, Amy lives in Savannah and I live in Atlanta, so we will see each other again at the Atlanta show.

Check it out, y’all. As Codie said, we were mermaids for the afternoon.

NKOTB cruise 2013

NKOTB cruise 2013

NKOTB cruise 2013

That night was my group’s concert (group B). I think I was probably more excited about the concert than anything else because there was a good shot I’d get to hear Jon sing one or both of his solos. Singing solo is incredibly difficult for him though, as we all know, and I hoped that he would see a calm familiar face like mine in the crowd and feel safer about doing it. Everybody’s anxiety is different, but I tend to do better if the people around me are calm and supportive. Sometimes I wonder if people going nuts the minute he opens his mouth makes it harder for him, so I made an effort not to yell until after he did his parts.

Jon’s solos were early in the show. I could tell when he was going to have to sing because he has very physical reactions to his anxiety. He pushed his way through it like a champ though and he sounded wonderful. I suspect he sounded better than he thinks of himself. We made eye contact during his solos from what I could tell (he was on the other side of the stage so I’m not 100% sure) but I sang with him and tried to nod at him as if to say, “You’re doing great. Keep going.” I want to be of help to him because I have some idea of what he goes through. As much as he pushes me by example to work through my anxieties, I try to return the favor for him, although I’m not sure that I’m any inspiration to him. I’m just some woman in Atlanta. I care about him a lot though. In my heart, I like to believe I can help him push through it and sing, because he really does have a beautiful voice. He carried off We Own Tonight beautifully and although Survive You clearly scared him more, he got most of it out, if not all of it, and we gave him a standing ovation. He also belted out step five. I never heard him sing so much and I was never so proud of him.

NKOTB cruise 2013

Remember when I said earlier that Joe wasn’t going to be ignored anymore?

Yeah.

So we’re having a good time at the show and everybody is singing along, dancing, etc. They get to Single and toward the bridge, I think, I see Joe moving toward me on the stage. Inside, I was thinking, “Oh Lord, here we go…” and before I know it, he’s standing in front of me on stage singing his part to me. I thought it was nice. I mean, what lady doesn’t want to be serenaded? Suddenly, Joe leaped off the stage and bounced off the couch right in front of me. Wendy yelled, “Oh shit!” because she was sure the ship was going to lurch and Joe was going to fall on me or pregnant Sissy. He leaned over the couch, got right in my face, and sang to me while caressing my cheek. I remember smiling but I think I was in shock because I was aware of a spotlight on us and I knew the whole theater was looking at me. I made a conscious effort to keep Joe’s eyes because if I became too aware of being stared at, I would have frozen.

In another instant, he gazelle leaped over Wendy and went a few rows back to serenade another lady. I gave Jon a guilty smile as soon as Joe was gone because I realized Jon watched the whole thing like a hawk. His reaction? He looked at me with a little smirk and wagged his finger at me like, “No you didn’t just mess with another man!” I wish that was caught on video because we busted out laughing, but most of Joe singing to me is in this video.

Yeah. I think Joe is pretty awesome. Something has changed in him since the last time we saw each other. He used to be full of bravado and comedy, but he seems much more attentive, compassionate, and gentle now. Don’t get me wrong – the bravado and comedy is still there – but I feel something shifted in his energy since we last saw each other. I don’t know Joe very well, so I don’t want to speculate about why he has changed, but he’s behaving toward me with much of the tenderness Donnie gives me and I like it. Joe almost never walked by me on the ship without stopping for a cuddle or touching me somehow with a sweet smile.

I don’t know who did it, but after the show was over, we were waiting for the theater to clear out and somebody appeared with the set list that was taped to the stage floor behind the guys. I think that’s where it was anyway. The person gave it to me! So now I have the set list that was used for the shows on the cruise. I think I ought to frame it or something! I thought it was bad luck or just not done to give away set lists, so I was pretty shocked that I ended up with it.

NKOTB cruise 2013

The last day was the photo op, which I don’t have yet. As soon as I came in the room, Joe looked at Jon and said something like, “And that’s the one I serenaded last night.” Does Joe not know my name?! So I wore my hair down for the first time the entire cruise and Donnie had a fixation with it (my hair is very long). After the photos, security was trying to kick us out but Jon wanted a kiss and Donnie’s hands were in my hair. I thought it was Jordan at first until I heard Donnie cooing about how soft and beautiful it was. It was either obey security and leave with Donnie’s hands in my hair or wait until he was done. I’m sure the pictures look funny because we were all exhausted and laughing too.

All in all, my cruise experience was amazing. I think it was my best yet, even though I didn’t have the correct pain pills (I forgot them) and even though my anxiety was a struggle this time. I did my best to be friendly and cheerful for everyone. It’s hard for me sometimes though and I have been accused of being cold and aloof more than once. I never intend to come across that way.

Miami is a clusterfuck of evil though. Wendy and I waited five hours for a wheelchair taxi to the airport and we missed both of our flights. Even the hotel people were yelling at the city about the horrible service. Luckily, Southwest is a fantastic airline that bumped us to the next flight and we eventually got home. Miami’s transportation system is the worst in the country though. I’ve been to a lot of places and I’ve never had so many headaches as I do in that city. If you don’t rent a car, you might as well throw yourself at their mercy. And don’t get me started on how people drive there!

I’m so grateful to Wendy and Sissy in particular for looking after me and giving me the opportunity to see everybody again. I’m grateful for beautiful friends like Abbie, Codie, Amy, etc., for accepting me as I am and including me in their lives.

Being grateful to NKOTB is an understatement. Every time I’m with them, they give me more love than I could ever realistically expect. Jon, Donnie, and Joe in particular go out of their way to make me feel wanted and a necessary part of their own experiences as human beings and performers. I will never forget the things they’ve done for me. This cruise was very much a healing experience for me and it helped me remember that I do have value as a person and there are people who want me to stay here. My life is difficult on a good day but people like them give me things to look forward to and encouragement to keep going no matter how many times my body tries to fail me. These experiences of coming together and celebrating life are important to people like me who tend to get lost and struggle.

I’m beyond grateful to be able to say that I know NKOTB enough that they’ve gotten to know me over the years and look forward to seeing me too. I honestly do love them as human beings. Jon in particular is a bright spot in my life. I just hope they know how much they’ve helped people like me over the years.

See y’all at the Atlanta show.

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About my disability – Arthrogryposis

Posted by Jessica Jewett 34 Comments »

Since Arthrogryposis Awareness Day is coming up on June 30, I wanted to update this old blog about what it means to be a 30-year-old woman living with Arthrogryposis in this world.

What can you do for Arthrogryposis Awareness Day?

I’m going to make a video this year like I did last year. Each June 30, people are encouraged to wear blue to show support for people who were born with the condition and the need to educate people about it. We don’t have a celebrity spokesperson throwing charity events to raise money and pressure medical science to do more research for more effective treatments. I’m asking you to wear blue on June 30, take a picture or video of yourself and send it to me at jessicajones9828@gmail.com so that from there, I will put your contribution into a video. People have gotten creative before with blue nail polish, blue ribbons, blue hair streaks, or anything else if simple blue clothes don’t interest you. If you choose to send a video, please tell people why you support Arthrogryposis Awareness Day. My final video goes to www.amcsupport.org and YouTube to continue efforts to raise awareness. AMC Support also takes donations to help families with children who have this condition, if you can spare a few dollars. And please pass this blog around to your friends and encourage them to participate as well. Last year I had 150 participants. I’d like to see more this year.

What is my life like with Arthrogryposis? An honest look.

I realize that not everybody is comfortable with asking questions about disabilities even though most of us with disabilities prefer it that way. For me personally, I’m a blunt person for the most part, so I would rather people just ask what’s on their minds rather than stare or wonder about this or that like having a big elephant in the room. I prefer people get their curiosity out of the way quickly so we can get on with knowing me the person inside without my disability being this thing overshadowing me. People commonly say they’re afraid of offending me. I totally understand that. I would be afraid of offending me too if I was in other people’s shoes. There’s no need for fear with me though. I’ve been asked everything from, “How do you write?” to, “How do you have sex?” so nothing offends me anymore.

This is the truth on my disability. My diagnosis is called Arthrogryposis Multiplex Congenita but I just call it Arthrogryposis or AMC. Here is the basic explanation of it from WebMD.

Arthrogryposis Multiplex Congenita, a rare disorder that is present at birth (congenital), is characterized by reduced mobility of many joints of the body. Impairment of mobility is due to the overgrowth (proliferation) of fibrous tissue in the joints (fibrous ankylosis). There are many different types of Arthrogryposis Multiplex Congenita and the symptoms vary widely among affected individuals. In the most common form of Arthrogryposis Multiplex Congenita, the range of motion of the joints in the arms and legs (limbs) is limited or fixed. Other findings may include inward rotation of the shoulders, abnormal extension of the elbows, and bending of the wrists and fingers. In addition, the hips may be dislocated and the heels of the feet may be inwardly bent from the midline of the leg while the feet are inwardly bent at the ankle (clubfoot). The cause of Arthrogryposis Multiplex Congenita (AMC) is unknown. Most types of Arthrogryposis Multiplex Congenita are not inherited; however, a rare autosomal recessive form of the disease has been reported in one large inbred Arabic kindred in Israel.

This is my reality:

Arthrogryposis is really a term that covers about 150 different variations of those symptoms. Most people with Arthrogryposis can walk a little bit with a walker or totally unaided because most types of the condition only affect the arms OR the legs but not both. My case is particularly rare in its severity because both my arms and legs are fully affected. I cannot walk at all, nor can I use my hands enough to function in everyday life. I also did not have proper medical care as a child because I was born about five years before doctors figured out the best general course of treatment for this condition. Since this condition affects bones and connective tissue, it’s best to get the brunt of your corrective surgery as a child before everything is fully formed. I missed that window of opportunity in a lot of ways so corrective surgery is not quite as affective on me and it takes longer for me to recover as I get older. All of that is why my case appears more severe than most.

I have lost count of how many surgeries I’ve had. It’s somewhere between 15 and 20 but I truthfully don’t know the exact number. Some surgeries were a matter of life and death while others were experimental attempts at giving me more mobility. I’ve had a complete spinal fusion from neck to pelvis, meaning there are two titanium rods wired to my spine that split off across my pelvis and that makes it difficult to bend at the waist. I’ve had hardware put in and taken out of my hips. My thigh bones have been surgically broken and repositioned for more mobility. My feet have basically been rebuilt to correct the clubfeet, which is regressing and I need another surgery there. Those are some of the more serious surgeries I’ve had in the past. Sometimes I can be very self-conscious about what I wear because I don’t want people to see my scars, nor do I like to show off my body because it only reminds people that I’m “different”. As I get older, it’s getting easier to be comfortable in my own skin because I know I have value as a human being and I have a quick wit and a clever mind. There are differences with my body but I’m still a woman with all of the hopes, dreams and desires that any other woman possesses.

I live with pain every day. My feet and hips are especially troublesome because of the bone deformities and early onset of arthritis. It can be challenging because my mind and heart are adventurous and I want to experience everything in the world but sometimes my body doesn’t cooperate. That’s par for the course with this life though and I roll with things on a day to day basis. I do not accept no as an answer when I’m told I can’t do something. I’m the kind of person who will do a thing three times over when I’m told no just to prove I could do it. Adopting that stubborn attitude early on is the reason why I have learned to fly on my own without companions, I’ve gone horseback riding, I’ve gone whitewater rafting, I’ve swum in the ocean many times, I go on cruises, I’m a Civil War reenactor, I’ve camped everywhere from the Rocky Mountains to the Blue Ridge Mountains, I’ve seen 32 states, Canada, Mexico and the Bahamas, and so on and so forth. I’m not designed physically or mentally for a 9-5 job, so I’ve carved a life for myself as an author, an artist and a spiritual intuitive.

Despite the daily thoughts about having to adapt everything, I’m a perfectly normal woman. I need help doing some things like getting dressed and bathing but I do a lot more on my own than people think. Since I can’t use my hands enough to call it function, I do things with my mouth. I have the ability to write, draw, type, sew, needlepoint, use scissors, tie knots, etc., etc., etc., all with the various tools in my mouth, which has become the butt of jokes over the years but you’ll notice most of the jokes come from me first to put people at ease. If you do it with your hands, I find a way to do it with my mouth. People often ask how I learned all these skills. I taught myself through trial and error starting from infancy. My family never treated me like an invalid so I had to learn to do for myself very quickly. The body’s ability to adapt is amazing when you think about it.

There are a lot of misconceptions about me and this condition.

The main misconception is that people think I’m like Christopher Reeve, who had no sensation in his body. I am not a spinal cord injury, so I have full sensation throughout my body except for some numbness in my right hand due to an overzealous surgeon who caused nerve damage. The truth is I have a heightened sense of touch. That applies to both pleasurable sensations and painful sensations. I have a very high tolerance for pain because of it. Whether my heightened sense of touch is related to my disability or my work as a spiritual intuitive is unclear. It may be both.

The second big misconception is that I can’t move at all. Not true either. It looks that way because most people see me in the wheelchair, which is actually a lot more limiting than not being in it. Think about it – you’d be more limited strapped to a chair too. I spend the majority of my life out of the wheelchair and only use it when I’m going somewhere. I sit on couches or living room chairs just fine, but most of the time I’m lying on my stomach so I can move around and be independent. The amount of help I need is really minimal when I’m not in my chair. This is far from a round the clock nursing care situation. In fact, I feel suffocated if I’m around people trying to do everything for me too much.

The third big misconception is that I’m not capable of being in a relationship and all people with disabilities are asexual. Absolutely not true. I’ve had longer relationships than most married people I know. I was engaged for a while but the relationship was abusive, and after a miscarriage, I left him. There is a plus side to being disabled when it comes to relationships – vain people only interested in you if you’re “hot” will avoid you and you can avoid that drama. This is not to say people with disabilities aren’t hot – far from it! – but the vain types aren’t capable of looking beyond the chair. I prefer men to be strong, stubborn men with depth and intellect who have passions and interests beyond clubbing and impersonal sexual encounters. Those are the only men I will consider and they are the only ones capable of seeing the woman beyond the chair. Don’t ever settle for less than what you deserve!

I live with Arthrogryposis but it does not live my life. My wheelchair is part of me but it is not ME. I have had boyfriends, I have been engaged, I have been pregnant, I have survived abuse, I travel, I publish books, I help people in spiritual matters, etc. I have the same thoughts, desires and feelings as any other woman. Sometimes I have to adapt the way I do things, but I do, and I get on with life. The majority of people with disabilities are stronger and more driven than anyone else you’ll ever know, so there is no reason to be afraid of beginning a friendship or more with us.

Above all, don’t be afraid to ask questions. It’s better to speak up instead of standing around feeling awkward, especially in my case, because your awkwardness will make me feel awkward. Nothing offends me anymore because I’ve heard it all. I don’t believe in beating around the bush, so say what you mean and mean what you say, and we’ll get along fine.

So there you go. A closeup glimpse of life with Arthrogryposis.

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Advice on the NKOTB cruise

Posted by Jessica Jewett 5 Comments »
Well, folks, it’s that time again. The 2012 cruise has been announced with a change up in the plans, now headed to Key West in place of Nassau. I have decided not to go this year. I typically skip every other year because the intense traveling involved for this particular event is very hard on my body. Last year, I caught some sort of plague on the ship and I was sick for almost two weeks after I came home. I also did some damage to my body with pressure sores from being up in my wheelchair so much. Partying NKOTB style is definitely not for the faint of heart!

To read the cruise blog I posted after the last cruise, go here: http://www.jessicajewettonline.com/nkotb-cruise-2011

Here is the promo video for the 2012 cruise with footage from the 2011 cruise.

NKOTB CRUISE 2012 from New Kids on the Block on Vimeo.
I thought I would try and post some advice on things that I’ve learned on the two cruises I have attended. Here we go….

Don’t get obsessive about booking on the day it goes on sale. The website will crash. It is inevitable and can’t be stopped. Complaining, freaking out, going into hysterics, etc., is not going to resolve the problem, so it’s just best to keep rational about the whole thing. There is a possibility that you won’t get your cabin on the first day everything goes on sale. Get on the wait list as soon as you can with Rose Tours. Of all of the people who book the day everything goes on sale, I would say about a third to half of them are going to pull out before everything is said and done. There is a great chance you’re going to get on the boat whether it’s through the wait list or a direct arrangement with someone selling their spot. Where there is a will, there’s a way, and if you’re meant to be on the boat, you’ll be there.

If you are disabled, contact Rose Tours immediately after booking. There are a limited number of wheelchair accessible cabins in most price ranges. More disabled fans cruise with NKOTB than an average cruise, so there won’t be enough cabins to go around. You have to request disability forms from Rose Tours, fill them out, and fax them back right away. Accessible cabins are handed out on a first come first serve basis. They won’t assign your cabin right away but they will keep the paperwork for when they do assignments.

Don’t book your flight or hotel until after the holidays. This one may not work for you but I find that it’s best to wait until after the November payment to make travel arrangements. Usually people who have to cancel will do so by January from what I’ve seen. You never know what can happen between now and then, so just concentrate on making your payments for now. Also, flights tend to be rather expensive depending on the season and the day of the week. Prices typically drop after the holidays and are lower on Tuesdays and Wednesdays. Start monitoring airfare and watch how it goes up and down. Last year I watched carefully and my flight dropped from $350 to $150. That’s a big savings right there.

Pack light, comfortable clothes and flat shoes. I see it happen every day on the cruises when people think they’re going to dress in perfect, cute little outfits, but when they get there, they end up in shorts, tank tops and flip flops. That part of the world can be very hot, humid and windy. Frilly little dresses look cute in the mall but they’re not very practical. It’s especially true for shoes. Most people pack a bunch of high heels not anticipating how much standing and walking they’re actually going to do. I wasn’t even walking and my feet were swollen for three days after I got home. Limit your dressing up to nighttime when there are themes. Just be aware that your feet are going to be screaming at you the higher your heels go. Let’s be real here – your clothes are not going to get you into bed with a New Kid. Be practical.

Don’t fly in the day of the cruise. I made this mistake the first time and got to the port with only 20 minutes to spare. It’s better to fly in the day before to leave room for delays. You really need a good night’s sleep beforehand too. Don’t rush yourself. There will be plenty of rushing on the boat.

Remember this is YOUR VACATION, not stalk NKOTB 24/7! People who typically don’t enjoy themselves are the ones who are solely focused on tracking down the guys for personal time all day, all night, without rest. They expect to pal around with the guys all the time and get pushy and mean when other people get time with them instead. People who don’t enjoy themselves are the ones who forget they’re in the middle of paradise with drinks, food, swimming, music, beautiful scenery, and so on and so forth. How much fun you have on the cruise is relative and proportional to your expectations going into it. Expect a great time with your friends and maybe seeing the guys a little bit and that’s exactly what you will get. Expect a tough time of fighting people, being pushy, gossipy, catty, rude, etc., to get a few seconds of facetime surrounded by 2,000 other people and that’s exactly what you will get.

Do not scream and chase the guys. Yes, it happens. A girl screamed when she saw Jon and he took off running. The people clogging the guys’ cabin level for a glimpse is pushing it too far too. If the guys are clearly off duty, just smile, wave or say hi, and keep moving. Why? Because if they feel like they’re being chased, they won’t hang around. If you are cool, they are cool. Remember that if you are feeling exhausted from being up so late drinking and dancing every night, then the guys are just as tired – probably more because they have to be “on” and performing almost the entire four days. Cut them a little slack. I have found that if they don’t feel pursued, they will mingle around more. They do their best to get around to everyone, so there is no need to push or shove or act crazy. Be patient and your time will come. Most of my best moments happened totally by accident, not because I was hunting down a New Kid.

Don’t ditch your friends for a New Kid or VIP. I’ve seen this happen so much. People get an opportunity to go up to VIP and boom, it’s like their friends don’t exist anymore. Be aware of your friends’ feelings. Last year, VIP was not great. In fact, Donnie told me I was better off down on the deck with the pool because it was more fun there. They overcrowd VIP and you’re not even mingling with the guys. They have their own inner VIP within the general VIP. So many people pushed and shoved at the bottom of both staircases that it was ridiculous but when I saw where they were going, it looked pretty pointless to me. They were packed like sardines up there and the guys didn’t really visit them any more than non-VIP people down below. If my choice was to drink and dance with my friends or get picked to go up to VIP and get crammed up there by myself for a minute or two of facetime, I would choose my friends.

Listen to your body regarding the heat, dehydration and sleep. I had a good vantage on the pirate ship of what everybody was doing on Half Moon Cay. Several people were down with the heat because they were drinking too much alcohol and not enough water. The beach is hot as hell. If you don’t keep hydrated, you are going to succumb to the heat. Several girls passed out and refused to go back to the ship for medical care because they wanted to see the guys. Ladies, New Kids are not worth your health! Seriously! Also, please pace yourselves. Four days is a bit long to stay up all night every night. You are going to run yourselves into the ground if you don’t make time to go to sleep. Catch a nap by the pool during the day and try to get to bed by 3 am at least one or two nights. Trust me. Your body will thank you for the sleep.

Use the stairs if you are not disabled. The elevators are notoriously slow on these cruise ships, especially when hordes of people are trying to use them at the same time. If you see people with disabilities waiting for the elevator on the ship, please consider the stairs. I am always a bit frustrated when people who can use stairs shove ahead of those with mobility limitations to get on the elevator. Another option if you don’t want to use the stairs is to be kind and allow those who actually need the elevator to go first and wait for the next one. Remember that disabled passengers don’t have an alternate route. We have to take elevators and many times, half the elevators are locked for security or because staff are moving equipment.

Be kind to the staff, security, and NKOTB too. They are all working very hard for us and they need a kind word every now and then. Think of a job you’ve had where it’s nothing but people yelling and complaining at you. It wasn’t very fun, was it? Being nice always wins out over being rude. Security in particular are more likely to help you and look after you if you are nicer to them. It’s very simple – treat others as you want to be treated.

Stop, look around, and soak in the moment. These cruises are so fast-paced and full of activity. You really need to remind yourself sometimes to stop and soak in the moment, especially when things are getting crazy and you find yourself being drawn into drama. Remember that thousands of people would give anything to be on that boat who are not, so relax and soak in the moment. Getting sucked into drama is just going to take away from your experience. You’re paying a lot of money to be on that boat, so just walk away and go dance with your friends. It’s not that serious!

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