Photo from Glamour magazine online.
I watched an Oprah: Where are They Now? special tonight that featured Kendall Ceisemier, an incredible young woman who, after watching an Oprah Christmas special about the AIDS epidemic in Africa and how it was affecting children, came downstairs to her parents with about $360 stuffed in an envelope (all she had) so she could adopt a little African girl who had lost both of her parents from AIDS. From then on, Kendall vowed to do whatever she could for the children of Africa affected by the horrific disease. She even started her own organization, Kids Caring 4 Kids, to help raise money. When she was featured on the Oprah show for the first time with President Bill Clinton, she vowed to raise $1,000,000 for the cause. Today she’s raised about $950,000 and is making a difference as a college student at Georgetown University.
What’s even more amazing about this giving young woman is she herself had struggled at a very young age. She was born with a rare liver disease and had to have two liver transplants before she even graduated high school. She says she still struggles with her health from time to time and probably always will, but she refuses to let it hold her back or interfere with her mission and that in fact, her health obstacles are what inspired her so deeply to help other children.
As someone also born with some physical obstacles, I can completely relate to wanting to help others. I’ve always identified with people who have struggled, people who felt different and people who were born into unfair circumstances like children in African who became orphaned because their parents died of AIDS in a place where the resources just aren’t there for people who get infected. I have a lot of catching up to do to even come anywhere near this awesome young lady though!
Kendall, you’re not just my inspiration of the day…you’re my inspiration of a lifetime! Here’s a piece that Glamour did on Kendall. She was chosen as one of the Top 10 College Women of 2014. You can follow her on Twitter also at @kciesemier.
I have to say I think this is one of the best blogs on living with a disability I have ever read. I’ve written a lot of stuff on my blog but it never occurred to me to look at all of the things I consider “bad” about my disability and simply shift my focus to turn them into positives. Number 4 and number 6 really struck me too. When I struggle to get up out of a chair or I have a limp, yes that makes people notice me. I’ve actually met friends and started up great conversations with people because they’ve asked about my limp. And in reality, I would much rather stand out than be invisible like I tried to be for so many years.
I thought I would come up with a few of my own to add to the list too because I definitely identify with each and every one of the things he shared and then some:
I’m extremely resourceful: When you have a disability and stairs without railings (or sometimes just stairs in general), curbs or things like that come your way, you get really good at figuring out alternatives. This carries over into your daily life then. You can figure out how to fix something and you get pretty good at coming up with creative alternative to things.
The little things to some people can be huge to you: For most people, traveling alone isn’t probably that big of a deal. But for me, traveling alone is something I consider to be one of my greatest accomplishments. Things like taking a cab to the airport by myself in NY or getting my suitcase off the baggage carousel are my versions of climbing Mt. Everest. There are always going to be things I need to ask for help with, so I relish those things I can do totally on my own.
It’s forced me to focus and improve other parts of myself: I could never do sports or anything physical growing up obviously so while other kids were on the football team or running track, I was reading or listening to music. I also love making people laugh and I consider my sense of humor to be one of my strongest qualities. So I may not be able to pass a basketball or run a mile but I’ll get you with my witty sarcasm :)
I have great empathy: I think I’ve shared this one before but because I’m different, I strongly identify with other people who are considered “different.” I may not be perfect at it but I really try to understand the other person’s plight and what they might be going through and I always root for the underdog because I know what it’s like to be one. While some might judge the guy with the pink mowhawk or the girl with the sleeve tattoos and nose ring, I actually feel at home and feel comforted by them because I have something physical that people see and might think is “weird” or different too. I have such respect for people who are just unabashedly themselves too and make no apologies for it because that’s something I’m not quite so good at.
As Michael says in the conclusion of his blog…I don’t know who or how I would be if I wasn’t born with MD. I’ll never know, but I like to think I wouldn’t be as cool of a person as I am because I have MD :) Thank you Michael…life changing.
So Positive Jackie has returned! Honestly, writing that blog yesterday was so therapeutic. Just to get out how I was feeling no matter how cynical or dramatic it may have sounded. I definitely got a few worried texts and phone calls which were much appreciated. I also watched this last night which actually brought me to tears. I knew about Jillian being the first model in a wheelchair and shared her being featured in Nordstrom’s Fall Anniversary Catalog on Facebook. I was so happy just to see someone with a disability being featured in something that revolved around beauty but I actually didn’t even know she had muscular dystrophy until I watched this. Her attitude is positively amazing and something that’s inspired me to lock it in more and not sit in a corner and be upset about something I have no control over. Thank you for the reminder Jillian. I hope this inspires you guys too…
Please consider this as my official resignation. I am no longer interested in being involved with your organization. I am tired of being the girl that has something that a complete stranger has to decide if he’s equipped to “deal with” when I didn’t ask to be born with it. I no longer want to be involved in something where I have to waste my time thinking and wondering if some guy is going to be interested or not. I have much better ways I can spend my time. I’m exhausted from being the girl that most guys just don’t seem to want. Yes, you’ve thrown some my way that were ok with my disability but they’ve turned out to be players or afraid of commitment, or just flat out disappeared without a trace. I’m through with believing that you are going to lead to any kind of fruitful result because the majority of my life has proven otherwise. I no longer have the faith to keep believing in the cliches you offer. There aren’t plenty of fish in the sea. The right one won’t come when I least expect it. There’s not someone out there for everyone…specifically me. It’s just not in the cards for me so I have to accept that.
I am smart, funny, attractive and caring. These qualities don’t seem to matter with anyone you try to set me up with though and when it’s not my disability that scares them away, it’s something else. So I’m tired of going through interview after interview trying to prove myself to someone. I’m tired of trying to sell myself or convince someone else that I’m worth being with. I’m expelling my energy in other much more productive ways. I’m going to travel. I’m going to spend time with my friends and family who love me and accept me for who I am. I’m going to do things on my own. I’m going to remain single and stop seeking something that I have to go through so much effort to try and find. It’s just not worth it.
I appreciate your understanding in this matter.
I’ve heard a lot of crazy things in relation to my disability and my limp over the years. But the one that really bothers me is “Wow that looks like it hurts.” I’ve only ever heard this in one place before too: Idaho. I’m in fact, sitting in the Boise airport right now having had the exact sentence said to me by a TSA agent. People at home usually at least ask if I hurt myself in a nice way. Now I understand people that ask this aren’t coming from a place of malice and I’ve certainly put my foot in my mouth before, but I also don’t understand what would posses someone to point out someone’s limp even if it was from a ski accident. You really don’t need to point anything like that out…to anyone. And I’m sorry, there’s like 10 million better sarcastic jokes you can make.
I’ve said before, I know it doesn’t even occur to people I have a disability when I’m up and walking. But that right there is why I blog. Just like any disease, MD has many forms and faces. Disability does not equal wheelchair. So the next time you see someone limping, know it’s ok to say absolutely nothing at all.
I had a revelation after getting out of the shower this morning (yeah, probably didn’t need to share that much). I realized that at least part of the reason why I’ve been so angry and generally unhappy lately is because of my accident. Yes, I know you’re probably going “duh Jackie, you’ve been saying that for months”. I just never quite got exactly why. Lately, if I have a really good day, I’m wary because I’m just waiting for the bad day to come…and inevitably it does. Pre-accident, I would have my angry days. I would get upset if I had a bad day but it didn’t make me implode like it has been post-accident. So this morning I realized what that day did to my brain. I got up, got in my car and was expecting just to go to work like any other day. I never expected I was going to smashed into and sent to the ER. So unfortunately, I’ve let that mess with my mind going forward. Everyday I leave for work, or everyday I get into that car, I wonder what’s waiting around the corner for me (literally and figuratively).
Then I started to think about what I even define as a “good” day or a “bad” day. It will probably come as no surprise that a “good” day to me is one where everything goes perfectly. Work is great, I hit all the green lights on the way home, no one hurts my feelings, I don’t mess anything up, etc. etc. When a day is “bad”, sometimes almost all of those things still would have happened but I might have said something stupid or somebody did something that upset me. The day automatically gets filed in the “bad” category (even if it overall was fine). So I really need to work on redefining what good days and bad days are. Days can be good even when something bad happens and bad days can be good because even if everything else was crap, that one awesome moment made it great. Even the day of my accident. Though it was scary and something I would never wish anyone else to go through, I came out of it with a positive attitude. I felt renewed and I felt extremely fortunate in about 1,000 different ways. I think if any day should qualify as “bad”, that one should. Not the day when I’m awkward with a coworker. I don’t even consider my accident day bad though because of what it gave me in the end. Every day has something to give us; in the good or the bad, it teaches us something or leads us to something.
I’ll be honest that it’s been harder to get myself through the days lately. I’ve started to slip back into get overwhelmed and that is never a good thing for me. It leads to a lot of negative self talk and negative thoughts. But I realized as I was driving home from the grocery store today, one of the main reasons why life is worth living for: the good moments. We may have a lifetime of bad ones or we may just have a few bad days here and there, but the moments that make us laugh, make us smile, and light up our souls…those are the ones that make it worth getting up in the morning for. Those are the ones that will ultimately stay with us. All the bad moments make us stronger, they help us grow, and they teach us important lessons and they also help illuminate the great ones and see just how great they really are.