Cari: Hey Michele, can you introduce yourself and tell our readers a bit about your story?
Michele: So, my name’s Michele, I'm 26, and I was born with a connective tissue disorder called Marfan Syndrome. It affects my whole body so I have skinny arms, my bones don’t hold together very well, and my eyes don’t get held into place because I have weak connective tissue. Connective tissue affects your whole body and nobody really knows that it’s there but it’s so important.
I was still able to go out and play with the kids growing up, I’d ride bikes and was physically capable of doing small things. When I turned 17, a Junior in High School (that’s your third year of four years) I got really sick. I was throwing up, couldn’t breathe well and what was happening is the CO2 in my body was building up throughout my entire life. My lungs weren’t strong enough to push the CO2 out and I wasn’t getting full breaths or the proper amount of air. Because my chest cavity is so small, my lungs are really compacted in there. My doctor said they’re basically see-through. If I was born with a slightly bigger chest cavity, my lungs would have been fine. Anyway, with the CO2 building up in my body, it made me sick. I was in the hospital from Thanksgiving of 2008 to January 9th 2009 and the doctors realised that I had pulmonary hypertension. They gave me the choice to either be on a bi-pap machine where I’d have to wear a mask on my face that helps me breathe with a machine, go home with it and die in three months OR get this thing called a tracheostomy.
I had absolutely no clue what a trach was and without hesitation, I said, “Trach.” Obviously. Like, I wanted to live but I didn’t know what I was signing up for. It’s hard. Also, I was 63 pounds when I went to the hospital at 17 years old. My doctors decided to put a feeding tube into my stomach and in three months when I left the hospital I got up to 110 pounds. Now I stick to around 90 pounds with the feeding tube, healthy as ever, with a trach, doing great!
I am home and have adjusted to a whole new lifestyle. I have to be on a breathing machine when I sleep and throughout the day but I can go off of it, leave the house and physically do things. It does take a lot more energy for me now though. I need more breaks to catch my breath and sit down quite a bit. I also need a wheelchair if I want to go walking around downtown, so I’m more restricted.
I didn’t bowl for about 2 years after the surgery. I was terrified to go back because I’d been bowling since the 7th grade, five years at that point. I didn’t know if I could do it. It was scary to go back to the teams as it was the same league with the same people. They were asking about me and I had to confront my life again, reintroduce myself to my life. I wasn’t sure if I was physically capable of doing it anymore. So once I did it, I was like, “Oh.. yeah! This is normal to me.” Right away. I want to keep doing this until I physically cannot do it anymore. I just love it too much. I get too much enjoyment from playing, seeing the people in the league every week, hearing about everything going on with them and I don’t like people as much as I love my cats so that means something!
C: How did you get into bowling?
M: Well, I've basically been hindered from doing any type of sports and I can’t, like, run or anything because my heart will get overworked. So that’s how I got into bowling because it was easy. My grandpa has been doing it his whole life so he introduced it to me and it was this thing that I can actually do because I don’t over-exert myself.
C: Do you consider bowling a sport then?
M: Yes, definitely! It pushes me. I have to make sure my arms are strong, you know, I still gotta make sure I can be strong enough to bowl, to get up and go out into the lane and stuff. So yeah, it pushes me and it’s competitive; I’m competing against my other teammates and teams. We do tournaments, too. I consider it a sport.
C: Do you have a technique or style specific to you? Like a signature move or something that makes you stand out?
M: Actually, the fact that I don’t bowl all fancy and, you know, throw my foot out and stuff. I have to actually walk up to the lane, position myself, get myself ready and throw the ball. I don’t have a lead up, I can’t run up to the lane so I have to actually stand at the line. That makes me different. And I have a curve that I do. I can make the ball curve and ride the gutters. So I think I stand out.
C: Do you find that bowling is quite empowering for you?
M: Yeah, you look at me and then you see that yes, I can actually pick up that ball. Or whenever someone else picks up my ball they’re shocked at how light it is and they’re amazed I hit pins down. It’s empowering because you look at me and see this tiny girl, you wouldn’t think she can throw that ball and do so well. It makes me feel good to show people I can get out of the house and do those things.
C: Do you have a customised bowling ball?
M: Yeah! I picked the ball that I have because it reminds me of space and the universe and how vast it is. I just love space. It’s something bigger than myself. Plus, I have to get the ball drilled a certain way because of my long fingers. My hand doesn’t sit the same way as other people.
C: What other sports have you tried? Have you stopped them? Why?
M: When I was little, I did T-ball because that’s just standing at the bat. But I never actually could try sports because they were so worried about my heart. I have an enlarged heart and an artificial valve in there so if my heart were to over-exert itself, I could basically fall over and have a heart attack or something. So, I didn’t really try anything. I mean, I played softball with my sisters in the backyard. I really do enjoy softball, I did enjoy that. I would watch it with them- it was more about me watching my sisters. I grew up watching my sisters play sports and kinda living through them. Seeing what sports were like through their eyes.
C: Do you feel that your sisters benefited from sports in other ways than for just physical fitness?
M: Oh yeah, definitely. They were involved in team sports and grew up learning how to be a team. They did softball tournaments all the time and we went out to one in Hawaii. The whole team would go out to dinners together and we actually hung out like friends. You become family with the people you play with. So it was really cool meeting people through their sports.
C: Do you like competing with other people or do you prefer competing with yourself?
M: I think it’s a little bit of both, like me and my sister- I know she’s way better than me but I still like to compete with her and when I’m doing better than her it feels good! Just because she’s so good and when I’m doing better than her it’s like “Yes! This tiny girl did that!” It’s more about having fun with my sister and I don’t think I’m too big on competing against different teams and getting first. I don’t normally try to get first place against other teams but when we do it’s cool and I like it. But I don’t try for it. It’s more of a personal thing too. I try to always get better and try to beat my average score which is a big deal in bowling. I work for my personal goal because I bowled a 200 one time and that was years ago before I got my trach. So I have this goal to get another 200 game now that I’m not at the physical level I was before. Bowling with a trach is different, it’s more difficult than bowling without it. I didn’t get as tired after 3 games as I do now. So it would be really cool to reach that goal of a 200 game again. So yeah, it’s more that I compete for myself and my personal goals. But it is also fun to compete with my sister and teams but I don’t strive to be first place. It’s just cool when it happens.
C: What would you say to someone who is interested in joining a bowling league?
M: I would say it’s so much fun and if you like bowling then it’s a whole different community of people to introduce yourself to. I love the bowling community, it’s just so welcoming. They’re awesome people. You know, tv shows joke about bowling a lot... about how people take it so seriously and even have their own ball, shoes, whatever. But what that does is it gives people this stereotypical perception of bowling. That it’s for the older people who do it to get out of the house, keep active. But there’s a younger league! They’ll drink, have a good time and go to tournaments but it’s not my speed. I roll with the older crowd. I used to bowl in the younger league, we would travel around and bowl in tournaments with kids my age. We’d sit down together and hear out the rules of that match, get to know each other. It was fun! Just don’t listen to the stereotype of bowling being ONLY for the older crowd. I would definitely recommend you check out bowling, see if you like it, if you don’t then it’s not for you. I had a friend that did not like bowling and I respected that. Alright, you’re my friend and we won’t go bowling together… you’re making me sad but I’ll respect it!
C: Would you like to say anything to our readers with Marfan Syndrome?
M: Get in touch! I would love to talk to someone else who has Marfan Syndrome. I’d love to answer their questions and ask them questions.
C: Have you ever thought about what it would be like to meet someone else with Marfan Syndrome?
M: ...No, I mean I’ve come across a couple of kids in waiting rooms while at Stanford Children’s Hospital. There was this one kid who, because he didn’t get the proper surgeries, he couldn’t walk and his spine was curved over. I was lucky enough to get those surgeries so my spine was corrected. So, he was crawling around and it was very interesting to see the different forms of Marfan Syndrome because I have ALL of the features. There are different features of Marfan Syndrome because connective tissue is throughout your body – so the features mostly involve the eyes, bones and joints, and heart and blood vessels. It can also affect other parts of your body, like the lungs, the heart, connective tissue, the eye problem, etc. There’s different forms of it. I got lucky because the surgeries that I got allow me to still walk around, do things and be active. So then I see people like that who didn’t get those surgeries and all they had was this one little problem but didn’t get the right help. So no, I’ve never really thought of what it’d be like to meet another person with it. I’d really love to go to one of their barbeques, I get emails about them but have never gone. It’s scary to put myself into the community. It’s almost like it’s just been me because no one around here has it or has heard of it.
There is a website, kind of a facebook thing for kids with Marfan Syndrome. I used to use it but I don’t know… my mom wonders why I haven’t ever been in the community. But now that I’m older, I would like to get to know some people like me. I would like to see how they live their lives and how physically capable they are and where they’re at in life.
There you have it! To get in touch with Michele you can send her a message on facebook or through her two cats' instagram pages @cosimathecat and @karatheragdoll. You can also comment on this post below and leave a message for her. Thanks for sharing your story, Michele!
Lastly, the Marfan Foundation has shared some information with us that can help you to detect the signs of Marfan Syndrome because awareness saves lives!