The young and disabled (title for a new reality show?)

The young and disabled (title for a new reality show?)I’m out at the coffee shop and I run into someone I haven’t seen in awhile (this happens often now that I am back in my hometown). Then it happens, the inevitable question is asked…”So what are you up to these days? Where are you working now?” My palms get sweaty, my heart starts to race and I think to myself “How do I say the phrase ‘I’m on disability now.’ without worrying about the impending face people make once you say THAT word?” I decide to go with a different route and say “I’m not working at the moment, just letting my body heal.” That sounds good, right? Then the face happens…the downturn of the lips, the uptick of the eyebrows and the classic comforting arm pat. They say the standard comment of “Oh geez” or “wow” or even “Yikes.” Next comes me launching into an explanation of what is going on in my life. You can almost hear my urgency to convince them that I am worthy of receiving disability and not working. Then in the next moment I am trying to figure out how to make my life seem relevant still without my career to back it up.It took a few times to realize that the outcome of these exchanges not only happened because of people’s perception of a young person (yes I still consider myself young) on disability but my own prejudices about the topic. Why am I scared to say the word disabled? Why am I minimizing the experience I’m going through by saying “I’m just letting my body heal” or “I’m not working at the moment”? I think its because I have had my own idea of what having a disability means through how the media and the community portray it. So I decided that I wanted to write about some of the stigmas that I think make being on disability hard or even a shameful thing for young adults like myself with a heart condition.

Just living on a government handout

You are on to me now…the first day I started working at the ripe age of 14, I’ve been plotting the best way to stop working. I now sit on top of my money pile, laugh and think “I finally got away with it!” I think for me one of the scariest things to do was to stop working and leave the security of my paycheck and health insurance. I worked close to 20 years and payed into a system that I believe should be there for the people who need it. I think its also important for people to understand that the government or insurance companies don’t just “handout” benefits to anyone. The amount of paperwork, questioning, documents, medical tests that you have to provide are intense! I also think its important for the community to see young adults with chronic illnesses as more than just the disability their body has. We are intelligent, we have careers, we can think for ourselves. Just because our bodies don’t work the way we want them to, does not mean we want to give up our right to provide for ourselves. For those of us that have to make this decision, we aren’t looking for a handout…we are looking for a way to prolong life and get healthy. The stigma that people on disability just don’t want to work is ridiculous and young people with CHD like me should not have to worry about this kind of thinking. A reminder to those in this judgmental state of mind, we didn’t choose this…we were born with this defect, we are surviving this defect and we deserve to be supported when our bodies choose to go against us.

You must have all this extra time on your hands or you must enjoy relaxing all the time

The young and disabled (title for a new reality show?)I am guilty of thinking this exact thing. Without working, I should have all this time on my hands. What I didn’t factor in was that I would be exchanging my career in social work for a career in getting healthy. Folks..I’m here to tell you..its a full time job! Getting healthy, living with CHD and recovering from years of surgeries is rough and demands all of my energy. I won’t lie, I have been able to cut my stress down quite a bit by moving home and not working. It is a true blessing and because of that I am getting better every day. But lets get real, I know some people think my life has now become this endless vacation full of relaxing moments in the sun. A person like myself who is struggling with CHD looses energy, oxygen and stamina quickly. To give you an idea, at a steady pace on flat ground I can walk .37 to .7 comfortably (this is after about 4 months of training). However, I wheeze, my heart flutters, I then get anxiety over the flutters and usually after I walk I have to nap/rest for awhile. Here is a great experiment for you all to try, next time you go for a walk and you get to the place where your heart rate is elevated and your body is demanding more oxygen, place your hand over your mouth creating a loose suction. As you breathe in through your mouth, you will notice the difference of how much harder it is to suck the air in. This is what it is like for someone that is using a smaller percentage of their lungs, like myself. Another way to look at the whole situation is to think back on the last time you stayed home because you were sick…did you really feel relaxed? Or did you feel exhausted? There are days that CHD can feel like that. Breathing is a workout, even resting can be a workout.

You don’t look disabled or sick enough

The young and disabled (title for a new reality show?)I’ve seen all these facebook posts or heard comments by people about what they think disability looks like for a young person. Is there some disability chic look I don’t know about? I’ve seen this real judgement towards people who are disabled…like they MUST look a certain way in order for people to justify them receiving benefits. I’m here to tell you folks…CHD, like a lot of other diseases or disabilities, isn’t always visible on the outside. I have been battling this heart defect since birth…I have some wicked scars (we in the CHD community are quite proud of our battle zippers), I have put on a bit of weight, I walk slower than normal, I look tired (who doesn’t though on most days)..but that may be the only external signs I exhibit. I feel like the CHD community gets overlooked because of this fact. In reality our battle is internal but still relevant.

I think its time that our community starts to see Congenital Heart Defects as a new way of redefining what disability can look like for a young person. 1 in every 100 children are born with some form of CHD. Congenital heart defects are the #1 cause of birth defect related deaths and the leading cause of all infant deaths in the United States. There are an estimated 2,000,000 CHD survivors living in the United States and those living with a critical form of CHD might have to make the same decision that I did. We are starting to see more adult survivors like myself then ever before due to the technological advances science has made. Which makes me think its imperative we started supporting CHD survivors and fighters who must take this epic step in their lives.

In the past I saw going on disability as an ending, like it was going to take something away from me. Disability would be the end of my career, my purpose, my happy ending I so often pray for. If anything it has become a beginning for me. It has become a chance to live a purposeful and healthy life.

So from now on I will try to be proud of the fact that I am young and disabled…because that means I chose to fight for life and in the end, isn’t that what makes the view from the recovery trail even sweeter?

The young and disabled (title for a new reality show?)

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26 Comments on “The young and disabled (title for a new reality show?)

  1. Kim, you are eloquent. You are an inspiring young woman, who made a difficult but necessary change in your life. You chose better health and life. Thank you for your honesty.

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    • You are too sweet Martha! Thank you for your kind words and support. It means the world to me. Its always nerve racking to put something out there that is so personal, so I appreciate the supportive words! Hugs!

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  2. kimmie, you rockstar 🙂 thank you for your openess and raw emotion. You are inspiring so many and showing us what strong truly means. I am all the more thankful for the health I have today!! You are amazing and loved!

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    • Amanda, thank you! You have always inspired me and im usually in awe of the mighty within you. You have inspired me so many times to strive for more in my health and push forward, because i have seen you do it when it was rough for you. Your words of encouragement and your support are so touching! Thank you!!!

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  3. Love you so much. Thank you for sharing your difficult, but ultimately rewarding journey towards health and happiness. I know its not the same as disability, but I feel the same struggle when people ask what I do. I stay at home and take care of my two little girls, the dog, the cat, my house and my husband. In addition to managing 3 small businesses. Its exhausting, but because its not a legitimate “job” to some people, I must be lazy. Small rocks, but its annoying to me. *Rant over*

    I hope that your words are able to bring a larger awareness of disability and what it can or does look like for different people.

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    • Oh my sweet bestie, i love you too!! You are one of the hardest working women i know, you always have been. Which i think shows that there are so many stigmas attached to what people view as a “job” or how people attach value to time spent. I hate that kind of thing. I think your comment shows that there are stigmas attached to a lot of struggles. All i know is that you somehow manage this crazy busy life of yours and still manage to support me, make me feel loved and always have my back. If anything, you are rocking it! I love you!!!

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  4. Love you Kimmie! As always, your posts bring me to tears. I will never fully understand what it is like to be in your shoes, no matter how much I empathize, but I do know that you are the strongest, kindest, funniest, and most selfless person I have ever met, and I am beyond blessed to have you as my bestie.

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    • I promise I wasn’t trying to make you cry! Lol. I will always say that my strength doesnt come just from the Lord but the people he has put in my life. If anything I had a certain bestie that helps bring out all these qualities and hopefully i do the same for you. Im so happy i have you along for this journey. Thanks for always supporting me and this little project of mine! I love you!

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  5. “Oh Geez”, “Wow”, “Yikes” You explained thing wonderfully kiddo. Stay Strong, Stay Proud and keep Healing. You’re doing the most important job of your life. You’re doing it for yourself and for all of us that love you. KEEP IT UP!!!

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    • Thanks so much Auntie! I am so blessed to have such an amazing support system around me that has really allowed me to do what I need to do. I know a lot of people aren’t as blessed as I am in that respect. So thank you for all your encouragement and love…it means everything to me! Love you!

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  6. That is a strong a bold post! I loved it.
    It is so important to show who we are even when we are week. My saying is “I do my best and God takes care of the rest”. And if people think I am not doing enough, it’s ok, because not everyone knows what is really going on.

    What are some things you do, to keep your mood up when things get hard in life?

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    • That is a great saying iuki! He really does take care of the rest, that is for sure! And thank you for the kind words, I am glad you enjoyed the post!

      Things that keep me going when life is hard…the list is long! Recently I have been discovering photography…its a perfect combo to get me out of the house, moving and enjoying the views around me. I sing, I bake, I pray/meditate. I also have a great support system that I spend time with who really uplift me and keep me positive.

      Thank you so much for stopping by and commenting! I love hearing from new people! Many blessings!

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      • Thank you for replying Kimmie!
        All these things seem very nice. I love to cook too, but I don’t get a lot of time to do it.

        I love that you said prayer. In my life that is such a important thing for my happiness. When I get to really open myself to our Father in Heaven I feel so much love from Him.

        In you opinion, is prayer like a two way conversation, or a monologue?

        I would love to talk more with you. I will leave my email here and you can contact me ( sistercarvalho@gmail.com )

        Hope to talk to you.

        May God continue to bless you

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  7. Kim, I am so happy and proud of you for doing what you are doing. I have been studying health care for the last two years and have two more to go before I get my bachelor’s degree. You have brought up a good point about your heart condition. People are not aware how common it is and how it can affect your whole life style. You go girl ; -)

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    • Thanks so much Sandie!! Congrats on two years into health care…that is awesome!! There are so many forms of CHD that are out there…from murmurs to more critical ones like mine, which I think not only should rate it as an important genre of need but one that needs more resources put towards it for study and development of treatment. Thank you so much for seeing the value in what I am doing!!! It means the world to me!!

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  8. My daughter has a CHD. So far 3 open heart surgeries down (endless caths and other things) and she’s 3. She has HRHS (opposite side of HLHS that is more common). I hope she has an outlook like you when she is older. She is precious to me and I hope to support her in whatever she finds herself doing, prayerfully under God’s guidance. Thank you for your openness. I actually came across this post by mistake. My hubby’s facebook was open and this was what was up. I’m glad a got side tracked. 😉

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    • I am so happy the post spoke to you Lani-lee!!! And thank you for the very sweet compliment. I have prayed for your amazing little heart warrior often and love what you as a family have done to support her and others. She is so lucky to have a support system like you guys and that will serve her well later on. I think the best thing for me was my support system always reminded me that God had purpose for my life, that CHD was a gift and that because of it i get to see the world in a way that is unique…which i do feel is a true gift from the Lord. Im so happy you got side tracked too! Please tell Michael i say hi!!

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    • Thanks so much Ahmed!! Its great to know that someone else gets it…and to meet another fellow survivor!!! I dont think many people get what its like to try and heal the body with CHD, so hopefully this speaks to the community out there. Thanks again for the encouraging words! Happy heart journey!!

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  9. Kimmie,
    You never cease to amaze me. Your thoughtful posts always leave me with a lot to think about. I can relate to a minor degree on the ‘you don’t look disabled’. When I blew my back in 2008, I couldn’t walk a block, and I could not hurry. I looked fine but I always felt bad when someone ahead of me held the door for me and I didn’t ‘pick it up’. My hair dresser has sign in her work space that says “You never know another person’s story. Be kind. Always.”

    Ain’t it the truth.

    Keep on the recovery trail. You are doing the right thing.

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  10. My Kimmie. ❤️ I hope you remember me, I was one of your connect students in 2011.
    I went in to see Jj & Naomi yesterday, I was so excited to see you but you weren’t there :/ (Naomi filled me in on what happened) I hope all is well & I hope to see you again one day!

    PS I tried matcha green tea & fell in love!!

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    • Diana!!! Of course I remember you!! I’m so happy you visited the blog and commented. How is everything?! I wish I could have been there to see you and catch up. You can find me on Instagram @viewfromtherecoverytrail and also on Facebook with just my normal name. I would love to chat more and see how you are doing. Ps…so happy you liked it! It is still one of my favorite things in the world to drink! Lol

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