Anyone who knows me knows that I wear my independence like a badge of honor. I had never been completely independent in the truest sense of the word until I was 34 years old. Before that, I had lived with my parents and then I got married and had a husband who was an amazing provider of everything I wanted and needed.
Things happen and at the age of 34, I found myself the sole supporter of a family of four. I had no education, no work experience, and more fear than I knew I could possess. I grabbed the proverbial bull by the horns and did what any Mother would do. I got a job and supported my “babies.” I swore then that I would never be dependent on another human being as long as I lived. I would never find myself in that place again. Yeah. Okay.
About a year after working, I realized that I was surviving, but that I was really getting no where without an education. So, I went to school. Five years and two degrees later, I still wasn’t where I wanted to be…so I applied for Grad School. That brings us to where we are today…just without all of the details in between. Details like…having an accident at work and finding out that I have a Chiari I Malformation…something I was born with but had basically stayed asleep until I fell and woke it. Details like…quitting my job in North Carolina and packing up and moving to Georgia to be closer to my family as my condition has progressed steadily…even rapidly at times. Through all these details…I’ve maintained my independence. That has been the only constant in my ever changing world.
Today, nearly three years after I woke up that sleeping beast Chiari and fighting brain surgery with everything I’ve had…I’m at the end of my fight. My hard drive has failed. What does that mean? In my attempts to educate myself and understand what Chiari is…that’s been the way I’ve had to think about it…just to help me comprehend it. It is a VERY complex and confusing disorder which is probably why finding a doctor who understands it and knows how to treat you is like finding that ever elusive needle in a haystack.
A computer has a hard drive. As long as it is working properly, all of the hardware and software applications work properly. If your hard drive fails…your monitor won’t display…your Operating System won’t boot up…your keyboard and mouse are useless…your speakers won’t work. Not only that…but you can’t click and open your iTunes…you can’t open up a Word document and start typing text…you can’t plug in your camera and upload pictures and edit them. You can’t surf the Internet and watch videos on YouTube. Your entire computer is worthless without a hard drive that functions properly.
Chiari is the same thing. Imagine your brain stem being the hard drive. It controls everything your body does…both consciously and subconsciously. Imagine everything else…your heart, your limbs, your eyes, your ears, fingers and toes, bladder, bowels, and all of your other various organs and body parts as hardware (like your monitor, keyboard, mouse, etc.). Imagine then that every bodily function…breathing, swallowing, your circulatory system, digestion of food…things you have no control over…those are your software applications (like iTunes, Word, Excel, FireFox). Now take it one step further…imagine what would happen if your hard drive failed. If you can imagine all of that…then you have successfully just imagined what it is like to have Chiari. Now, you know what I mean when I say that my hard drive has failed.
I’ve been trying to operate at full capacity for weeks, months, even years now with a failing hard drive. I’m having increasing difficulty getting my Operating System to even boot up anymore. Luckily, I’ve got one of those jobs where there are absolutely no expectations placed on me. I just sit there for 8 hours a day. But I’m having difficulty even managing to do that. I can’t help but think that this is God’s funny way of breaking the news to me gently since hitting me over the head with forty tons of bricks has proven time and again that I still don’t pay attention. After all, when I got slammed to the concrete floor, broke my tailbone, fractured my pelvis, and suffered brain damage…it never even slowed me down.
I’m paying attention today. That’s all I can really do at this point and time. I’ve spent the past few days looking at where I was even six months ago compared to now. I’m not going to get better at this rate. It doesn’t take a rocket scientist to realize how much worse I am today than I was then. Or even how much worse I am than I was a month ago. I’ve been fooling myself. I must be the most stubborn human being on the planet. Sometimes, I make myself crazy with my hard headed ways.
I called my Mom yesterday on my lunch break. I was having a really difficult day at work. Sitting there. I couldn’t stand sitting there. It hurt. I was hysterical. I couldn’t figure out what sort of loser I was if I couldn’t even sit there for 8 hours and get paid for it. She told me the exact same thing that the doctors I saw a couple of weeks ago told me. It’s time. It’s time for me to take care of me. It’s time for me to swallow my pride and realize that sometimes, it’s okay to need help.
So…here goes the next chapter of my life. I’m scared to death. I’m angry. And I’m sad. I’ve been at my current job for four weeks. I have now called out twice which means that I will more than likely not have a job by the end of today. I’m in mourning. For the life I want. The life I had. Please pray for me. Not only for my physical well-being, but for my emotional well-being, too. Mostly for my emotional well-being. I’m 42 years old and I am about to move back in with my parents. I’m about to surrender all of my independence. I’ve fought it for almost three years now. If I put this much energy into getting better, I should be better in no time at all! I have drive, passion, and determination. It just needs to be refocused into something that will benefit me instead of hurt me. Fighting against the inevitable is getting me no where fast. If anyone could ever really take two steps forward and end up three steps back…I think this is probably what they are talking about.
And for the record and just so my friends, family and people who love me know, I’m going to need lots of support and constant reminders during this transition of being completely independent to becoming a totally dependent, non-productive member of society. Remind me that this is only temporary. Remind me that this is what is best for me. Remind me that I have to take care of me now so that I can be here later. Remind me that I am going to be SO much better in the long run. I hate being so needy, but the way I see it…no one can know what I’m going to need if I don’t let them know. My plan…should things go the way I hope and pray…is that in a year from now, I will be fiercely independent once again and better than I ever was before. I’ve decided that I am telling myself through all of this that I’m not losing my independence…it’s just getting an over-haul. That’s MY story and I’m sticking to it!!
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June 14, 2011 at 8:07 pm
billielang
Danica I understand so well how you feel. I was 26 and smack dab in the middle of nursing school when I passed out in the shower and started having sx. It was not til about 6 months later when I was having trouble seeing that I went to the eye doc and got dx with optic neuritis. It is very closely linked to MS so theu sent me to a neuro for MRI’s etc. The dx was chiari and syringo with basilar invagination. During that 6 months before my dx I battled with severe headaches numbness and tingling and a variety of other sx. Even went to my primary doc and my sx were explained away by anemia, low glucose, low blood pressure etc. I actually waited til my Christmas break in school to get my first operation at Duke, and to this day I don’t how, but I was able to return to nursing school (with a shaved head no less) and graduate. Since that time (1994 for me) I have cont to work as a nurse, however, I have had to change from floor nursing to now working in the ER with behavioral health patients. I almost died 2 years ago when i passed out and fell down the stairs to our boat dock, but an MRI showed my basialr invagination had gotten much worse, and C2 was seriously pressing on the brain stem, another trip to Duke, C2 removed, and now I am fused to C4. I am still working full time, and it is a dail y struggle. would not be able to do it without the aid of provigil for the severe fatigue. I am cognizant of the fact that any day may be my last day of being able to work, and the thought is heart breaking as I absolutely love being a nurse. I wish you well, with lots of thoughts and prayers. Take care of yourself because there is only one Danica and u are a great one. I’ll always be here when u need an ear.
June 14, 2011 at 8:35 pm
The Divine Ms. M
Billie Jo…YOU have been such an inspiration to me for nearly two years now. Thank you first of all for that. And I learned the close relationship to MS the hard way…I thought that was what was wrong with me. I had fallen in August of that year and by December, I knew something wasn’t right. I just never linked the fall to my brain…after all, they were on opposite ends of my body. I’m the ONLY person I know who breaks their butt and has to have brain surgery to fix it. Heh. With my symptoms, I had scared myself into believing that I had MS. My GP at the time wasn’t as convinced though. Lucky for me, she was concerned with my hearing loss and sent me to an ENT. Once they determined that I was legally deaf with no explanation of how I got there…MRIs were ordered at once. I was told that I probably had a brain tumor or the main blood vessel in my brain was kinked. Turns out it was neither. Of course, once I met with the neurosurgeon at Duke…I felt MUCH better…I didn’t need surgery…I didn’t even know what Chiari was…there was NO way I needed brain surgery! I didn’t walk out of that appointment…I ran!! And I began educating myself and had determined that I was one of the ones who could manage without surgery…I would make it so. And manage I have…for almost three years. When I saw Dr. R in February, he told me that I had waited long enough and that I was doing permanent damage. I knew then that I had to get this done but I also knew I wanted to be closer to home. Against my neurosurgeon’s advice…I did it MY way and that’s where I am today. He told me then that I didn’t need to wait the three months that I told him I was going to do…and he was right. If I’ve said it once…I’ve said it a billion times…I AM a slow learner. But I learn. I guess at the end of the day, that’s all that matters. Things are going as planned…but they are going to go…even if I have to force it. I’m going to get this surgery and I’m going to bounce back and I’m going to be better than before. I have to believe that. Thank you for always being here for me. I love you, my sweet Chiari sister!!