Beyond the Flesh

Let me tell ya… I really love all of the “true beauty” campaigns that some major companies are spearheading right now! You know the ones I mean – teaching young girls that confidence and compassion are what make them radiant, not the size of their jeans or the texture of their hair. It’s about time, right? By the number of “shares” I’ve seen for these posts on my personal Facebook timeline, people definitely approve and are encouraging this movement. I, too, agree that it’s amazing! However, I believe that the real change, the real difference is going to begin with us.

A few months ago, I had to have double arm surgery. My right arm needed a full thickness skin graft and now looks like a shark took a major bite out of it. Recovery wasn’t fun and I still have issues with it. It took me awhile not to absolutely loathe the scar and I finally began wearing short sleeve shirts again. Then someone had to open their big mouth… “At least you can cover it up so people don’t see it.” (Referencing my Frankenstein arm) As usual, somehow I kept my composure, but here’s what I’d like all of you to know…

Commenting on the appearance of a person’s scar is no different than remarking about their weight, hairstyle, acne, braces or big ears. It’s rude, hurtful and unneccessary. And, as long as we see these things as ugly and point them out as such, we are no better than the companies who photoshop models to make them twig-sized or the businesses that use child-sized mannequins in the women’s department display. We can make a difference here. We must view our “imperfections” as something that makes us unique and special. We must see scars as battle wounds and find beauty in the strength and courage that their owners hold. The actual scar may just be flesh, but the story behind it is more than skin deep.

Now for a movie reference (I can’t help that I’m a cinema buff!) In the movie “Jaws”, one of my favorite scenes is where Quint, Hooper, and Chief Brody are chilling around the dinner table in the boat the night before all of the action happens. They’re a bit tipsy after having a few cold ones, and one by one, they go around, showing off their scars and sharing their stories. There is pride in the tales they tell and a mutual respect for the tragedy that gave them those scars. How amazing would it be if everyone could feel that comfort and companionship? They’d not only share their scars but flaunt them. Others wouldn’t say “Ewww” or “A little cover-up could fix that!” They’d say “you’re incredible – superwoman!” or “I wish I had your fight.”

So here’s my challenge to all of you scarred warriors… #showthatscar because you are beautiful, #scarredandstrong.

What do you Want?

PicMonkey Collage

So, so often I’m asked “What do you want to do?” or “what do you want to be?” I mean, at least once a week I get asked a question about my future plans. I’ll smile and give a vague answer, but maybe I need to start rolling my eyes and telling the truth… “It’s not that simple.”

With illness comes… Great responsibility! I technically could do anything I felt like doing, but that wouldn’t be the wise decision. I dream of doing all kinds of stuff. Wouldn’t it be cool to own my own business or be a missionary? Heck yeah! Sounds fun!  But then, reality kicks in and the check list runs through my head:

1. Can I physically handle the work I want to do?

2. Are there chemicals involved with the job that could cause a reaction?

3. How intense is the schooling required for this line of work?

(Now my biggest worry and top crasher of dreams…)

4. Can I get health insurance/benefits through my work or will I make enough income to pay for medical bills? Could I survive financially if I truly “do what I want”?

Most kids my age don’t give insurance a thought when choosing their future careers. The deciding factor is whether or not they’re passionate about what they’re getting into. It’s not that easy for me. Let me break something down for you.

Without health insurance, the average type 1 diabetic is going to spend $1000 a month on supplies. These supplies aren’t a “hmm, maybe I’ll buy them, maybe not” type of thing. These supplies mean life or death. Where I live, without a professional degree, many people are happy to make $10 an hour. If these people are working 40 hours per week, they’ll be making $1600 a month before taxes. Let’s say after taxes they’re left with $1200 to cover rent, utilities, car expenses, food, clothing, miscellaneous costs, and the biggie — medical expenses. So if I take my $1000 out of my $1200 pay, I’m left with an astounding $200. Given that most apartments rent for over $500 a month and a car payment/insurance would easily run over $300 a month, I’m already in the hole and I haven’t bought food or clothing or paid the electric bill!

While many people recognize that senior citizens on limited, fixed incomes have trouble making ends meet, what they don’t realize is there are many young people in the same boat.

See my dilemma? When I think about it, I get depressed. I’m angry. Life really can be unfair. BUT, I’m not writing all of this to complain about my lousy circumstances. I’m writing this to hopefully educate others on how deciding upon a future isn’t as simple as what it seems. I’m also hoping that the folks who look appalled when I say “I don’t know what I want” will understand that in reality, “It isn’t that simple.” Maybe my new answer should be “I’m now taking applications for a sugar daddy…”

My 50 First Dates

Have you ever seen the movie “50 First Dates”? The romantic comedy with Adam Sandler and Drew Barrymore? You laugh because it seems so out there…highly unlikely to ever happen! The thought that someone could wake up every day and not remember anything from 24 hours before seems so ludicrous…Until it happens to you.

My freshman through senior high school years are a blur. Some things I remember so clearly, like they just happened. Other times, someone will be telling a story involving me and it seems like they’re making it up because no matter how hard I try, I can’t recall it. The past few months, as my brain and body have healed, memories have swarmed back. Like sitting on a cold surface and remembering being passed out on the elevator floor at the high school, people talking to you. You can hear their voices but don’t have a clue what they’re saying…Thinking, “God, don’t let me be wearing a dress!” When you look out of a second floor window and recall trying to climb out of it at a time when you were so confused and lost. Your mom holding you back so you don’t break your neck. It all seems surreal, like a dream, like I couldn’t possibly be the same person.

I mourn for the time and memories I’ve lost. I laugh at the funny stories people tell me and I share my experiences so that others struggling realize that there is light at the end of that long tunnel.

So here’s a funny (kind of), 50 First Dates Story…

As I got older, my mom always let me pick out some of my Christmas gifts so one day in early December I got some things that I really liked, along with a few surprises. Mom, my gram and I spent a whole day shopping and I left with some great clothes, a cheesy wooden pink cat, a new bedspread and some accessories. I was psyched and insisted on keeping all of the stuff we’d just bought in the backseat so I could check it out again. (I hope I’m not the only one who does that!) As we pulled out of the Target parking lot, I had a seizure. I woke up and got super-excited. “Whose stuff is this? This sweater is adorable! I wanted this coat!” My mom and grandma laughed and said that it was my stuff I had picked out for Christmas. I thanked them and began looking through all the bags. A few minutes late, another seizure… “When did we get all of this? I wanted this coat! This cat is great… I think I’ll call him ‘Pete’.” Gram and Mom laughed and told me about the day. A couple more miles down the road, another seizure. “Mom, Grandma, is all of this for me? (insert weird grateful crying) Why would you buy me all of this? It isn’t even my birthday! I love you and all of this stuff… I’m going to call this cat ‘Stan’!” All of this continued for the whole 45 minute drive home. My mom unloaded all of my Christmas gifts and started hiding them, as she would every other year. We later decided she wouldn’t have had to bother. Christmas morning, I was surprised as I opened each and every present. All of them were new to me and exciting… even though I’d picked them all out.

Anyway, to the guy who said “hey” to me a couple weeks ago at the Apple Butter Festival that I later found out was in my graduating class, please don’t take it personally that I didn’t who you were! For all I know, you might have been one of my “50 First Dates”…

Judge Not…

As usual, I parked my wheelchair outside in the hall. The room was small and the furniture was big… not easy to maneuver around in with a bulky wheelchair. Besides, I only would have to walk 15-20 steps.

The door to the teacher’s lounge was cracked open. It never felt right entering, like I was trespassing, but my diabetic supplies were kept in there and I needed to go in to test my blood sugar.

I could hear two voices talking about the 7th grader who was “faking” diabetic complications to gain attention. They were gossiping about me! I lifted myself from my wheelchair and the pain exploded through my back and legs. I wished I was acting; making it all up for attention. That would mean no pain; no more constantly feeling terrified of what was happening to my body.

“They need to stop enabling her. Letting her use that wheelchair constantly is distracting and draws in even more attention.”

One painful step at a time, I walked into the room. Our eyes met and I lowered my head so they wouldn’t see the tears starting to form. They were the ones who should have lowered their heads… in shame.

I grabbed my blood glucose kit and left without saying anything. I thought about turning back, telling them what I really thought, but I didn’t. Too many extra steps. Too much additional pain.

I wanted to go back and tell those grown women who I trusted this:

“So if you think that I’m making all of this up, faking for attention, why sit here and gossip? If I’m playing sick, isn’t that a cry for help? So help me. Talk to me. Care about me.”

“I wish that this pain was fake and I pray you never have to experience a day as I just have.”

 

Now, we know that I didn’t have diabetic neuropathy as all the doctors I had seen suggested at the time. It was Lyme Disease and I still deal with that pain on a day to day basis. Thank God it isn’t nearly what it was at that time in my life. 

I do need to make it clear that many of the teachers I encountered during this period of my life were extremely supportive and caring. We are all human and can fall into the habit of judging others, me included, but it’s something that I’m working on because I know what it’s like to be on the other end of that judging and how hurtful it is. So the next time you see someone using that “handicapped parking spot” but they don’t “look” like they need it, think twice before you judge them or speak. The next time you think some kid is getting special privileges they don’t deserve, remember you don’t know everything. Please, next time before you think a hateful thought about someone, try to remember your compassionate side and a time when you felt bad for being under the microscope.

Pushing Forward

Those of you who are familiar with my baby, my pride and joy, Jenna’s Joy Foundation, know that we’ve been fundraising for years to be able to afford to hold a summer camp for kids with invisible disabilities. I’ve dreamed of that camp for such a long time. It would be a refuge, a support system. I wanted things to be different for the local kids with invisible illnesses than it was for me. For a long time, I was the only kid at my school with serious health issues. No one else could understand the daily struggle, at least in my mind, so I just dealt with whatever issues I was having until I couldn’t hold it in anymore and bawled to my mom.

When “Susie” isn’t invited to “Johnny’s” birthday party because it’s an ice skating party and “Johnny’s” parents are too scared she might have a seizure on the ice, it’s going to really hurt “Susie”. She and he are friends and it absolutely stinks that she’s excluded because of something she can’t control, can’t help. Maybe if she had another friend who has been in the same situations, they could talk about it and the sting wouldn’t hurt quite so badly.

When “Billy” overhears adults talking about him, accusing him of faking, he’s going to get upset. Who does he talk to about it? Now he’s insecure that everyone thinks he’s making up his pain/illness. Perhaps if he had a friend who went through a similar situation, they could talk it out and find a solution together.

These examples are just a tip of the iceberg on my “why”. There are lots of sticky situations that kids with invisible illnesses deal with just like these every day, and most of the time, they don’t confide in anyone about it because they don’t want to draw any attention to themselves or maybe they don’t think anyone else will understand. Our summer camp would bring all of these kids together to network, to form friendships and to lean on each other when they have crappy days.

This week, I started to wonder if my “why” was even worth it anymore. Oh, the obstacles thrown in my direction!

Kids and their parents who “couldn’t wait” until camp, had accidentally made other plans and wanted me to change the date of our event. Too late for that, unfortunately.

People who had once offered to help with anything I might need, flaked on me with sorry excuses if I even got a reply.

When I asked for help, I was ignored and people tried to talk me out of holding my camp!

I was so mad! How dare they? This is my plan! This is what I’ve been working for! I’ve been dreaming about this camp for YEARS!

I’m stubborn so I tried to find a way around all of the obstacles. I pushed and pushed until I realized that camp just wasn’t going to be a “go” this year. I felt like such a huge failure!

Holding our first ever summer camp on June 7, 2014 was my plan but apparently it wasn’t in God’s plans for me or Jenna’s Joy Foundation. Yeah, that’s disappointing. Maybe we aren’t meant to have a camp. Maybe he was trying to send me a sign or something? Quit? Cry because I feel like I failed myself and kids out there who are struggling?

Nah, I’m going bigger and better. I’m taking camp 2014 on the road! We’re going to work on getting our support group off the ground so that these kids won’t have to wait another year to find the friends they might need. Same goes for the parents! A network of parents of kids with i.i’s (invisible illnesses) who can support each other when their children are suffering. We’re going to educate the community as a whole and I think that actually may be the best part about this whole thing. We’re going to educate families who haven’t experienced i.i’s so that “Johnny’s” parents might call “Susie’s” to work details out instead of completely not inviting her. We’re going to educate adults on what i.i’s are and how judgement maybe isn’t the right way to go in all cases. We’re going to make things better, on a bigger scale, or that’s what we’re hoping!

If you know of an organization who would allow us to come do a presentation for them about invisible disabilities, please contact us!

We’ll still be fundraising so that hopefully, Camp 2015 will be a major success and so that we can educate others. We’re also looking forward to one day, having enough funds to help families (with kids with i.i’s) who are struggling with bills.

Jenna’s Joy Foundation is pushing forward. Please help us to succeed?

Daring to Dream

Reaching my 21st birthday a few months ago back was a huge deal. My family and I didn’t know if I’d live to graduate, to see 17 or 18 years old. Thankfully, my ticking time bomb of an illness was diagnosed and we stopped it. I’m blessed and everyday, every birthday, we thank God that I was helped and am alive. This 21 milestone was special. I celebrated, ate yummy food and for the first time in a long time, I allowed myself to dream.

When you’re sick/dying, that’s just something you don’t do. Now, I can’t help but think of all future possibilities! What kind of car will I drive when I do get my license? College or a tech school? Do I want to put myself out there to start meeting new people? Whoa, the happy possibilities!

I have good days and great days. I have crappy and crappier ones. On the “feel good” days, I can’t help but imagine what could be in store for me! Days like today!

It’d been great! No seizures, I got a ton accomplished, had dinner out, could more than keep up in a conversation with friends and felt amazing. 

It hits me in the car on the way home — the headache, muscle twitches and I’m dizzy. We’re home for ten minutes and seizures start. My (what felt like earlier) normal body convulses and every inch feels like it’s being stabbed over and over again. Mom holds me still and wipes away the tears. The inevitable reaction to the physical pain and sorrow that my big dreams are still a long way off. In that very moment, absolutely nothing seems possible. Why dream and keep getting my heart broken?

Mama reminds me that while it absolutely sucks, I’m alive and am blessed. Maybe she cries a little too.

My brain works but my arms are currently paralyzed. My speech is slurred. What better time to write a blog?! (Ha! Good thing my mother gets my mumbling and will type for me!)

Today reminds me that “better” is a relative term as far as health is related. Lyme disease can be hell and the life of someone with an invisible illness is truly to be taken one day at a time. I’ll keep on dreaming and getting my big hopes smashed. I’ll cry and drink a Slushie like a little kid and snuggle with my golden retriever. Then, I’ll move on because one day, I will be 100% and then, there will be no holding me back.

With FAMILY is Where the Heart Is…

When I interviewed for the Miss Morgan County program a few years back, I was asked who I admired most. Like many young ladies, I immediately answered that my mom was the person whom I looked up to the most on the whole entire planet. It wasn’t the simple, generic answer that just popped into my brain first. Mom is the true definition of a “Super-Mom” and is the woman who I strive to be just like.

When a child becomes ill, parents have several options. They can ignore their kid’s issues and keep living in their happy, unrealistic world. They can accept what is being diagnosed and look for pity and attention. Parents can hire a nurse to take care of their babies. There are any number of “outs”. My Mom was working for Penn State, enjoying her professional life and being paid well. She easily could have paid a nurse to take care of me when I was deathly ill, and kept flying across the country with her career, learning and growing, but she didn’t. She chose me. Our family gave up a good income, a “I kind of want this. Let’s go buy it.” lifestyle and more. Mom said “No” to her outings and busy schedule and said “Yes” to the lovely job of carrying me around the entire house, helping me bathe, feeding me, changing PICC line dressings, researching treatments, fighting insurance companies, and well, everything else a full-time nurse would do. Not the most glamorous job, eh? It was an act of love. Pure and simple.

Ok, enough about Mama. All who know her already love ‘er. What I’m trying to get across here is that I have been blessed. I’ve been blessed with a mommy who didn’t flake out like other parents I’ve personally known. I’ve been blessed with the lesson that family comes first. Schedules get cleared. Time is made. Your family may irritate the heck out of you, but in the end, it’s all we have! Home isn’t where the heart is… Not if your family isn’t with you. Wherever your loved ones are, is where the heart is. I’ll protect and care for mine before anything else, like mine did for me. Can you say that you would do the same for your family?

— “But if any provide not for his own, and specially for those of his own house, he hath denied the faith, and is worse than an infidel.”–    1 Timothy 5:8