Glass of Win

I am beginning a new series of interviews with adults and teens living with cardiac issues – mostly congenital heart defects. You are invited to learn more about the individual behind the obnoxiously long Latin medical term and perhaps you will decide to reach out – to an organization that benefits those of us living with CHD, to an individual you were previously too shy to talk with, to a community now that you realize you are not alone, or perhaps to me if you are someone living with CHD and would like to be interviewed. Don’t be shy, we’re all in this together.

Question: Can you tell us your name, age, occupation and the type of congenital heart defect you were born with.

ANSWER: Carissa Aim’ee Carmichael, 28, Educational Assistant at Oak Grove Center and a child care worker for New Vision Autism Center and I’m also a student. I was born with TGA Transposition of the Great Arteries but at 19 (2001), I had a heart transplant

Question: How many surgeries have you had, if any, and what did they accomplish? How old were you when you had these surgeries?

ANSWER: At 3 months old, I had my first heart surgery-Open heart senning procedure to correct my congenital defect. It was successful for the first 15 years of my life. At 15, I was put on beta blockers and at 17, I had a pacemaker/defibrillator put in. 5 months later it went off (shocked me back into rhythm from tachycardia) and I was put on the transplant list.

Question: What were you parents like when you were a kid living with CHD versus their current attitude? Were/are they overprotective; did they restrict you in any way?

ANSWER: As a kid, I knew I was different (scar) but I was always told to do what I could. I had P.E. and stuff but I just went at my own pace. I guess I was spoiled because my parents were told when I was born that they knew my heart surgery was not going to be the end all surgery and that I may die someday. I didn’t know that. I thought it was cool that I got a year book every year and my class ring early. I got whatever I wanted…yes I was spoiled

Question: How did your health issues affect your school life and your social life, as a kid and teen?

ANSWER: Well, I had no social life. I don’t know if it’s just me or having a heart problem but I was a loner and was singled out in p.e. and later waved from p.e. in junior high to high school. So people didn’t like me because they didn’t understand why I didn’t have to run or whatever…I was out a lot of school in high school. By 15 my heart was giving out so I was more tired and didn’t do too many active things…malls, movies…

Question: How did your heart health affect the relationship with your siblings (if you have any)?

ANSWER: It made my sister (2 years younger) become independent early on. My parents had to take me to Children’s hospital here in Cali when we lived in Hawaii…My sister stayed there and went to school. She was 12. But she is also someone I admire. She took care of me and even though she looked out for me I still wanted to be the big sister but she took over that role for awhile. She’s my hero, when I got my transplant she was about 16ish and all her friends were getting drivers licenses and she went around telling them how important it was to be an organ donor. I was also jealous of her a lot because she was able to go out, party, go to concerts…and after high school she went to a four year college far away… I went to community college down the street.

Question: Has your health limited you in ways you cannot control/alter? (ex: not being able to go for a particular occupation in life, travel extensively, climb a mountain, etc.)

ANSWER: No, I have a new lease on life and now I have no limitations (although contact sports are out which works for me!). I do take meds every day though.

Question: What was one of the most obnoxious questions you’ve been asked or assumptions you’ve faced in regards to your heart health?

ANSWER: After my transplant I got that “do you have their cravings? Do you still have your feelings? Is anything different in regards to the person’s heart I got?” it’s crazy. Plus before that I would use a wheelchair at Disneyland or other places, the mall and people always stared at my legs…that was annoying.

Question: How is life with your health easier and more difficult as an adult than it was when you were a kid?

ANSWER: Easier because I know enough about my own issues and medical issues so that I can explain it to people better and it doesn’t bother me to talk about it or I have no problem talking about it or showing my scar (wearing v-necks, bikinis). As a kid I don’t think it bothered me too much either….I didn’t know anything else.

Question: When facing serious health issues, how do you keep from stressing out or dwelling? Do you have a strong support system?

ANSWER: I never stressed. I felt everyone around me did. My family is the best. My mom was the best and always will be she was there for me in every way possible. She lived with me after UCLA (hospital) in a hotel, she and my dad and sis swapped visiting me every time I was in the hospital. My other relatives that were close would visit or I got lots of phone calls. I was in the local paper and got many cards from my community from people I don’t know but were much appreciated.

Question: To date, what has been the most frightening moment in regards to your health?

ANSWER: Maybe when It really hit me that I was going to need a heart transplant. I got scared and cried with my parents int their bed. But then I accepted it and after that I knew it was in God’s hands and I knew I would be OK.

Question: What was your attitude about your heart health like when you were a kid, and then as a teen?

ANSWER: As a kid- not a big deal. Teen- a little more insecure because I had no body strength and couldn’t keep up. I got tired easily. But I was never depressed or anything; always outgoing, hyper (still) and happy.

Question: What are your hobbies and passions?

ANSWER: I love reading and watching romantic comedies. My biggest passion is working with children with autism. I am drawn to children with special needs and feel I can make a difference. I feel like I have a gift. I work with kids now with severe autism and it has its challenges but I love it. I am also in school getting my masters/credential in special education.

Question: Having heart issues is what is known as an “invisible disability” Have you had any instances when people just didn’t get it and gave you attitude because they couldn’t “see” your heart issues?

ANSWER: I have a permanent handicap pass for my car and people have given me strange looks when I use it and I even got a post it on my window once from someone saying I was misusing it!

Question: What has been the toughest part about living with heart health issues?

ANSWER: Well, as of recently- I have decided to get my tubes tied. It has been the hardest decision…I always wanted kids but I look at it like God gave me a second chance at life and if that means having no children of my own he gave me the gift of finishing my education to become an amazing teacher for special needs kids. I decided not to have kids because it would be a complicated/stressful pregnancy. The child may absorb my meds, I could reject and/or the child could be born with issues due to my medications.

Question: Many people do not realize there is humor even in the oddest of moments. I know I tell stories that are funny to me but kind of horrifying to anyone who has never known a single person with health issues. Do you have any funny CHD/health moments you can share?

ANSWER: I blame my scar on that fact that I have no cleavage. When I wear the heart monitor I called it ‘being wired for sound’.

Question: What do you know about the man whose heart is now yours? Have you ever made contact with his family?

ANSWER: I know his name was/is Albert, he was in his mid 40s and very healthy (car accident is my gut feeling) his
sister sent a mass letter to me and others who received his organs.I think like 3-4 others. Just said he took care of his father, loved to cook and was athletic. I think I got one more letter but it’s been a long time. I gave her my email but have not received word in over 8 years.

Question: How has knowing other people with heart health issues impacted your life?

ANSWER: Makes me feel not so alone. I recently ran into some lady with a scar and had to stop her and ask her what she had. I’m so blatant about it. It’s not everyday you see someone else with a scar or zipper. It makes me feel exhilarated and excited to meet others and share stories. That is what I loved most about camp (where Carissa & I met); sharing stories and learning of other heart problems and how other deal with it. We all seem to have a special bond that no one else can understand.

Thank you, Carissa, for sharing your story with us!

If you would like to share your story or nominate someone to be interviewed for a Heart to Heart, please do not hesitate to contact me.

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We’re back at this game, are we now? Waking me up around 6:00am with those obnoxious knocks on my chest, knock knock knock, like a timid religious solicitor? You don’t know if you want to slow down or go for the gold and kick into high gear. I don’t which is more annoying and troublesome – having a full-blown tachycardia episode that sends me to the ER, or this slapdash flutters that make me put my life on hold while you decide what you’re going to do. I don’t know what I did to deserve this half-assed attempt at rebellion. I took all of my medication, I’ve been getting enough sleep, I’ve have not had much caffeine or alcohol in the last week, and my activity level has been it’s usual moderate-low state.

You have no reason to complain. Do you just want the attention? I think so. I think you just want to be the center of attention because a lot of good things have been happening and are coming up and you have been feeling neglected. Mom even took the day off of work because you’re so wishy-washy and she doesn’t know if you’re going to pitch a tantrum or what. God, you are such a drama queen. By the way, I don’t appreciate the headaches, either. I don’t know if they’re necessarily related, but as you came shortly after I started to receive bad headaches, I can’t help but be a little suspicious.

We have a birthday party tomorrow, heart. A play-date with fellow heart patients, so you’ll be amongst friends…You know this! We’re not going to go if you keep acting like this, though. You keep behaving like this and we’re staying right here at home, young lady, and going absolutely nowhere. Is that what you want? You want to be a wounded, self-pitying recluse for the rest of your life? I don’t think so.

I’ll do whatever I can within my power to make you happy and go back to normal. Let’s just try to do our best to stay out of the emergency room, okay? Promise? All right, now pull yourself together and let’s get better!

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I know I blame you a lot, and not every source of misery originates

with you alone. You know how I love to throw parties, however, and a

pity theme is very en vogue. I don’t have to spend a lot of

time in the kitchen worrying about food because there isn’t but one

attendee and lucky me I win all of the games!

Seriously though, I know you can’t help but be yourself, as you were

brought and formed in this world. Like any of us. But where does blame

go? My genetic contributors? I think they punish themselves enough;

they never needed my help. The Universe and its wonderful wizard

behind the curtain? Maybe, though it’d be awfully egocentric to truly

believe such attention to detail was bestowed on li’l ol’ me.

The sad truth of the matter is there is no one to blame. No malevolent

entity or lack of prenatal care. The truth of it is: shit happens.

It’s a frightening truth, honestly. It’s easier and more comforting to

believe everything in life, no matter how minuscule to the workings of

the universe it may be, is purposeful. It’s just easier for everything to

have a name tag on it to better mentally organize and cope. Oh, sure,

you can call it transposition of the greater arteries with ventricle septal

defect but really, in actuality, it’s just One of Those Things.

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We have to be strong, and we have to survive because we have plans. Got it?

I’m not one to bully you around, but this is kind of serious. We have to

remember all of the ones we left behind in Philadelphia – baby Alice who

loved us to much she could not have the curtain between our beds

closed, Lauren with the long, scraggly brown hair, Raven with the

braids, the 100-watt smile and the cool sunglasses, Jeremy, the

teenager with the ponytail and guitar, baby Jordan who we watched in

the playroom while his exhausted father went to get himself some

more coffee, Nathan who we had wheelchair races with on the fifth

floor west wing. These and other kids we met along the way give us

purpose, a duty to go on in case they were unable to. We can’t let

these precious memories and lives go to waste. Of course, it was easy

back then, to be friends with kids like us. Life was still the biggest

adventure of all, and take it for granted I did. I was completely

unaware of the real danger we faced.

Unaware, ignored, I can’t tell you which now.

With adulthood came the bitter cognizance about mortality and

what having a congenital heart defect truly means. It had been a good

fifteen years since I knew anyone else with a CHD and frankly, I was

comfortable with that. When I did become involved with CHD-related

volunteer work, (camp del corazon) my rolodex was suddenly filled with

wonderful individuals living with a profound understanding with what I

have gone through because they had, too. I also knew children,

children!, with complexities more convoluted and harrowing

than mine. Admittedly, I struggled with accepting these people in my life

and for the first few years, I would come home from camp and break

down emotionally. I love them all so much and I do not want anything

negative to happen to them. Opening my life and my heart to them has

been an on-going battle because I fear getting close, allowing myself

to care for them and ultimately loose them. One could argue that an

individual runs this risk getting close to any human being, of course,

logically I know this. I am not dealing with the logical part of my brain,

however, I am dealing with the dominant emotional part that has to

weigh the option of keeping a cool distance versus embracing these

friendships with my all.

I can accept my own congenital anomaly, my own medical pain. I

can endure the blood tests, the stress tests, the lack of energy, the

medication, the surgeries, but seeing others go through this breaks my

heart and paralyzes me with fear. I’d venture into the depths of the

River Styx and deal with Hades directly on their behalf if I could. There

are no deals with conditions such as these, however, and certainly no

guarantees. Giving into that vulnerability, permitting that risk – the risk

that someone simply may not be there any longer and I will feel loss

and sorrow – has been a terrible inner battle. I have come to realize,

however, that it is a battle I have learned to accept and even

welcome. The friends I have made, these wonderful, brilliant individuals,

have only made my life brighter. Let’s keep the lights burning as long as

we can.

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1. Finding a pattern that seems to be working for me, which is stick with one major task per week. This week is painting and even though I had to start Tuesday, I created five new pieces and another three today. Very productive and I can’t wait to get them up on Etsy!

2. Contributing to Blog4CHD “Blog4CHD is a community of dedicated Bloggers that give their time to furthering Congenital Heart Defect Awareness & Advocacy through social media.” I have two pieces up and I’ll write another tomorrow and Friday because it is a special week dedicated to blogging for and about congenital heart defects.

art by Crosti

3. The falafel gyro from Whole Foods Market. Seriously, I want another one.

4. Watching two new movies this week – Adam and The Lovely Bones. I enjoyed both, and now it is time to borrow the book of the latter from the library.

5. Hosting my show with my friend Victoria. She brought a new level of intelligence and class to the Glass of Win variety show. If you’re interested in co-hosting, drop me a line! We can have a general chatter/open discussion or a theme show.

6. I need some magic in my life. I don’t care if it’s in the form of some magic pixie dust or a tree house situated in a magic forest, I just need it. I best get on that, then.

May I have some magic, please?

The perfect house.

7. A hearty toast for actress Zelda Rubinstein, who passed away today. I loved her as Madame Serena in Teen Witch and Tangina in the Poltergeist movies. You will not be forgotten, Zelda. Thanks for sharing your talent with the rest of us.

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