Friday, July 4, 2014

A Dependents Thoughts on Independence Day

Independence Day is the day in America where we celebrate the 'birth of our country'. Where we celebrate our rights as Americans to have life, liberty, and the pursuit of happiness. The day where everyone gets on the bandwagon on Facebook and thanks God and the troops for protecting our freedoms and rights that we gain from living in this great country. Freedoms and rights that are really only afforded to Americans. There are patriotic songs sung, and fireworks going off everywhere (for the week before and after) both making it impossible for me to sleep and for my dog to not have panic attacks every day.

So we are all on the same page here, let me tell you what the Merriam-Webster definition of 'Independence' is "free from outside control, not depending on another's authority, and not depending on another for livelihood  or subsistence." Besides the political debate I could get in about the first portion of the definition (because I think the government is both controlling us and making us use their authority a lot more now), I also realize that I don't really fit into the last part of the definition either. I definitely am dependent on my mother for livelihood and subsistence. With the amount of bills I have coming in and the amount I'm spending on meds and driving to my docs 2 hours each way away and things like that I definitely do not have enough to live on substantially if I were to have to pay rent and utilities.

So realizing I don't really fit the 'independent' category. I looked up the definition to 'dependence'. That definition is being "contingent on or determined by, or requiring someone or something for financial, emotional, or other support." Now this definition definitely fits me in numerous ways. So I'm going to go over how I'm dependent on certain things and at the end how all that effects me.

First of all, moving back home to live with my mom at the age of 26 when I swore up and down I would never leave NC and definitely wouldn't leave NC to move to IN. But I have to live with my mom because the doctors won't let me live alone. I was passing out too often, falling down because of muscle weakness, being hospitalized repeatedly, not able to keep up with my meds at some point. So I had to adjust to this very real and extreme life change for me, very fast. If you remember back from my first blogs, you will see I was in the hospital for 13 days and when I was finally released I was told I couldn't live alone anymore. I didn't have a job anymore because I had just quit (which we are pretty sure is why I got so sick because of the stress), so I couldn't pay my bills anyway. But we threw away, sold, or gave away almost everything in my apartment. I moved an entire 850 sq. ft apartment in a minivan and my Honda so we could drive back to IN. That's all that I could bring because there was no more room and we didn't know how to hall it all. That was a very humbling, and Job like experience. I had to learn that stuff is just stuff and it can be replaced, but I can't be.

I have had to fight extremely hard to work towards my degree completion of Master's in Dietetics which I decided to do basically for fun when I got to IN because I was bored. But it's been a great experience. Minus the fact that the professors don't follow my accommodations all the time. I have definitely physically fought through thick and thin to complete this degree, and I *WILL* finish it this May, no matter what. I'm also working on my thesis which has been fun, but overwhelming for sure. So I'm having to learn pacing techniques, especially since I'm going back to campus based classes in August (as opposed to online). I have tried my hardest, but you can definitely tell that I'm dependent in these situations and not independent. I have friends that take notes for me and a digital recorder that record lectures for me in case I'm foggy and don't hear everything in class. But I won't give up!!

I also have become dependent on health care aids to make my life a lot easier. Specifically, I have a shower chair because I can't take a shower standing up or I will pass out. I also have grab bars all over my bathroom that help me get up and around in my bathroom. I also have a feeding tube now. A jejunostomy tube (J tube for short) because my stomach only has 13% nerve functioning yet so I'm not supposed to eat very much, only like once or twice a week because it takes a LONG time for the food to get to my small intestine and a LONG time to get it from my small intestine to my colon then out. I'm on my feeding tube 24/7, it's like we are best friends. (haha, joke). I also have a port in my chest because I get so many infusions and lah work done and my veins are just completely shot. I also have braces for just about every joint you can think of because all my joints dislocate or subluxate frequently. And I have a cane that I use for mostly in the house, and a manual custom built wheelchair that I use for when I'm out in public. I'm dependent on all of these devices/equipment/tools to help me stay as functional as possible, for as long as possible. They just kind of delay the inevitable. But I'm definitely dependent on them. I don't know what I would do without my feeding tube or my wheelchair. 

I'm also extremely dependent on my mom because she takes care of me when I get super sick and drives me to my far away appointments if I feel I can't drive that day. Several of my friends are awesome too and let me depend on them for emotional comfort, decreasing my social isolation, letting me tell them my gross war stories, 'walking' with me sometimes (I use my wheelchair, my friend walks), and many more people I'm sure I am dependent on. For me, admitting that I depend on others is a major breakthrough because I have always been an extreme Type A personality and athlete, so I'm used to being able to go above and beyond and pushing myself to the max. I never accepted any criticism or complements very well and would get embarrassed and just run away. Now, if someone complements me or gives me a good review on Facebook, I read it and let it soak in and embrace that I helped someone be a better cook, even if it was 1 person out of 300 surveys. I enjoy being complimented now because I'm still chipping away at it, but as my mito progresses day by day, it's going to get harder and harder to keep up. I appreciate the words of encouragement and praise. It's lovely. But, because of my Type A personality and hard head I still don't enjoy having people "care for me", I like people that try to help but don't fall all over me and circle over top of me making sure I am doing the right thing. If I have to be dependent on some people (which I know I have to at this point), I would like the co-dependent relationship. As in the other person in our dependent relationship acts like this and follows my wishes. I know how to take care of myself, I just need help and support sometimes. And I would really prefer that my relationship with my mother (my caretaker) involved her giving me a bath, etc. That's fine for some people, but I'm not there yet. But I can save myself...even though I can save myself. 

The hardest part for me is the fact that I feel like I'm supposed to be in the prime of my life. All my other friends that are my age are getting married, buying houses, finding dream jobs, having kids. And I'm not really going to ever get the chance to do any of these things. Realistically. I am dependent on far to many things. Where I live right now, how I got here, what degree I'm doing, what thesis I'm writing (and who stays in and drops out), mobility aids, feeding tubes, and other health care adaptive equipment, my mother having to take care of me. I didn't even touch on the meds that I am dependent on, or the Physical Therapy, or chiropractic adjustments, or massages, acupuncture. etc. I've always previously been a free spirited, crazy outgoing personality type and this disease that zaps all your energy has completely made me an almost completely different person. 

So, anyway, on this Independence Day, I've discovered that even if you are dependent on so many things, I am still that free spirited, crazy (not as outgoing) personality type. And also definitely still a Type A personality as well. And even though I must depend on so many variables at all times, that doesn't mean that part of the Independence Day truths cannot be implemented. Because I am definitely in the land of the free and home of the brave. And it's that freedom that often gets me through such bad days sometimes. I just go and sit out there and get close to nature and think and it calms me down. And even though I'm not feeling very independent right now, no one can take away my sense of freedom and bravery which are the main fundamentals this country was founded on. 

So despite all my struggles and all my dependencies and no matter how bad it stinks, this dependent will continue to love Independence Day. Because it gives you something that no friend can do for you by holding your hand or sitting next to you in the hospital. It reminds me that we fought for our rights and I always love to add a little freedom and bravery to my character traits. And Independence Day can provide both of those for me. :)

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