I had a conversation on Twitter with someone late the other night while I was in a different account. Most of you know I have several. It spurred this post, which I think is an important topic. WARNING: this is an extremely personal post about my past and the diseases with which I’ve been stricken.
There was a time many years ago when I wanted my life to end. Twelve years almost. It was nearly a year after I’d been diagnosed with autoimmune hepatitis. What’s that, you ask? A royally screwed up disease that disguises itself in your liver and has your antibodies attacking your own body. It fatigues you, drains you, yet you can never seem to get enough sleep. It knocks out your defenses, your immune system, leaving you vulnerable to everything contagious. It compromises your immunity completely. There’s something to do with your white blood cell count too, but it’s been so long now that I honestly can’t remember what it is and I haven’t been tested in a long time. It has nothing to do with hepatitis at all. They only give it that name due to similar symptoms, which honestly only consists of jaundice. Ever had that? Dehydration to the extreme. Your eyes turn yellowish, your skin, under your tongue. It sucks. That’s actually how I discovered it on a trip to Flagstaff to visit my cousin over Memorial Day weekend, 1997. She pointed out the yellowish to me. She recognized it because her daughter had jaundice right after she was born. Happens a lot up in Flagstaff, I guess.
I’d rarely been sick in my first 28 years on this planet. I was exposed to chicken pox twice as a kid and never got it. Now I pray I never get it because it would kill me. A nasty flu bug went around when I was eight,and it took everyone down for two weeks, yet I only caught it for 24 hours. That’s how strong my immune system was. Worst thing that’d happened to me up to that point was I had my tonsils out when I was four. I lived my 28 years healthy, regardless of what I ate or did. I’ve never even broken anything. Sprains? Twice. Once, the wrist when I was 16. Twice, the ankle recently.
It took the doctors two months to even come up with the diagnosis. At first, they thought I had lupus–an equally nasty disease, depending on which kind you have. One is fatal. Unfortunately, it would take me several more years to discover the doctor’s first “guess” about the lupus was correct, even though that first rheumatologist said no. My lupus is systemic and sub-acute cutaneous. That latter part means it’s a skin disorder. Not the fatal one. The former means my ANA blood test comes back positive, which in all honesty covers several diseases that are all linked together. Too bad they completely missed the fibromyalgia. Imagine the treatment I could have had all those years.
Around October 1998, I hit a major depression. It lasted six months and nearly killed me, but no one knew about it. I’m good at hiding things . . . most of the time. I hid it very well back then, and even threw a 30th birthday surprise party for the husband (who is now an ex-husband). Only one person knew, and she hadn’t seen my face in years. I call her my Sanity. She lived across the country. Still does. I hadn’t talked to her in months, and yet, she called out of the blue one day. I answered. Her first words were, “What’s wrong?” It still chokes me up because I’m still amazed at the connection she and I share. This call came after a particularly bad morning.
During this six months of hell, I’d go to bed every night praying for God to take me, to end my misery. I was in so much pain. I had absolutely no energy. I didn’t really know what exactly was wrong with me because I didn’t believe the doctors did either. Back then, I wished it had been cancer because at least then I’d know what I was dealing with. So many in my family have had it. I’ll likely still get it at some point, regardless of how I live my life. Cancer loves my family and it doesn’t discriminate at all.
I woke up every morning angry that I was still here. I learned to hate God. I stopped believing in God. What omnipotent being would allow not only this crap happening to me, but all the horrors covering the globe? Feed me your excuses and I’ll play Devil’s Advocate. Don’t talk to me about Balance. I know it well. The irony here is that I’d stopped believing in God in high school . . . until my brother almost died after being hit by a car on his way to school. He landed on his head in the middle of the street, in front of a church. I started noticing things in the world that we take for granted. Little things you don’t see unless you look. I believed in God again . . . until the height of my depression. If it hadn’t been for my dogs that one particular day, I wouldn’t be typing this. K’Lar, my German shepherd-Chow, knew how to open doors. My over-active imagination decided to show me an image of her snacking on me.
Why yes, Stephen King has been an influence in my writing. Thanks.
I have scars now . . . all over my chest and face and upper arms. They’re from the lupus and I’ve learned to live with them. Some days I don’t care; other days I’ll stare at them for far too long after taking a shower. Two years ago, I let those scars and the extra weight get to me. The depression came again. The fiancé didn’t know how to deal with it. Then, a pinched sciatic nerve took me down for five months. I lost my job. In the third month, the fiancé lost his job. In the fourth month, he ended our relationship. By the fifth month, he was out of the house I could no longer afford. Surprisingly, it would take a year for the bank to take the house from me. I moved in with someone I hardly knew in a place too far from central Phoenix when you don’t have a job. That lasted three months before I moved to Tucson. Two months later, I had a job. It lasted two and a half months before the pinched sciatic nerve came back and I was terminated, almost on the same day as two years prior. I can’t stand or sit for an entire shift. That’s why it’s best for me to work from home. I’d done some freelance throughout the past two years, but it wasn’t enough to cover what I needed it to. I decided to apply for disability. I’m still waiting.
The first depression back in 1998/1999 lasted six months. Trent Reznor somehow got me through that one with the Fragile album. Thank you, Trent. Seriously. And I know that album was written during his last major depression. Maybe that’s why it helped. Music has always spoken to me. I hear every note, every word, every sound the artist(s) puts into it, and it moves me, stirs my soul, makes me want to sing and dance, even when it’s not the happiest of songs. The average person doesn’t hear what I hear when listening to music. They hear notes and lyrics. I hear emotions.
This last depression lasted longer than I’d ever want to experience again. Two years. It’s kind of difficult to get help when you don’t have insurance and no job. It took me a good long while to climb out of the well this time around. My Sanity didn’t call until recently. Most likely because I have more than one Sanity. I’m living with one of them now. She has been instrumental in pushing me forward, getting me to a happier place while working on her own at the same time.
Did I want to die at any point during the past two years? Absolutely. When the ex-fiancé moved out, he asked if I wanted the Glock. I said no. I have a respectable fear of guns. What I mean is that while I respect the hell out of them and know how to handle them and shoot, I know how dangerous they are. I opted for the 30/30 and the .22 rifles instead.
2010 was a bad year for a lot of people. For me? 2009 was bad too, and it started in 2008.
Yes, I wanted to die at many points in my life. But do I think death is the answer? No. Absolutely not. Obviously I’m still here. Something has kept me going. I think that something is my writing, my characters, the desire to tell you stories that I hope you’ll enjoy. My editing too. I enjoy helping others shape their stories. When I was a teen, just the thought of escaping my life was enough motivation to live, which sounds rather contradictory, but it’s really not. I didn’t want to escape through death. I mean, I did, but I didn’t. I was emo before they gave it a damn name.
It could also be that I needed to be here for others. We often overlook that when we’re wallowing in self-pity and hatred. One of my Writer’s Club kids–a 19-year-old I’ll call Pasha on here–was diagnosed with throat cancer this year. My reaction? Anger. Children aren’t supposed to get cancer! If I was dead, I wouldn’t have been here for him late at night on Facebook when he needed to talk to someone. Nor would I have seen his words when he told me I’m one of his top three favorite teachers, or that my words–always saying exactly what he needed to hear–are what helped him get through the pain during chemo treatments. I also wouldn’t have been here for my roommate when her Gallbladder of Doom decided to revolt and needed to come out. I wouldn’t have been able to answer the phone when Deni called in tears and I had to rush over to her house and hold her for several hours while she wept in my arms. She doesn’t even remember it, but she knows it happened. She calls me her angel now. Some days, I laugh at that and think, “Right, some angel I am.” Some days I remind myself that I’m not really a bad person when you look at the grand scheme of things and how other people are in the world. But perception is everything, right? I say perception can be deceiving because people can manipulate what you perceive. It’s why I look at your soul when I talk to you, not your shell.
Pasha has finished his chemo treatments now and the cancer is gone. I can’t tell you how relieved I am that he’ll have a chance to live his life. So then, why should I take my life for granted, even at the ripe age of 41? The answer is I shouldn’t, regardless of what I’m going through, and neither should you.
Sorry folks, you’re stuck with me until God’s ready to bring me home. That could mean tomorrow, or it could mean 50 years from now. While I am psychic, I’m not a fortune teller, and that’s one thing the Fates never let you see.
15 thoughts on “A Time Long Since Passed”
W.O.W. Now you render me speechless. You have been touched by the divine finger of Beyond. It may bring maddening lows, but also exhuberant highs. And all the while, it makes you a better, stronger person. I am grateful that you chose to share this with us. And although it may seem to be a lonely place you inhabit sometimes, know that you get to walk througth the same rooms that Van Gogh, Cezanne, Beethoven, Reznor, Hemingway and countless others have called home.
Many blessings and happiness for you and all you love.
Thank you so much, Patricia. Your comment is beautiful and moves me. *hugs* You are so right about the lows and highs.
I’m proud of you for writing this post. It’s so important to take a step back and look at the big picture instead of the acute pain, and you know I understand the pain. Keep walking forward and you’ll gain more than what you’ve lost. Although, I really would have preferred if you got yourself into a program to learn all of this instead of just coming up with it on your own.
ROFLMFAO! I fucking love you!
This just makes me want to hug you until you’re ready to take out a restraining order against me …. wait. You already did that, didn’t you?
Seriously love you chica, amazed by your strength and humor and the love you manage to continue giving out. You ARE an angel …. and I am very fortunate indded to have you ni my life!
*hugs* I truly think a major reason I’m here is to help others, whether it be just a hug or a smile, or to give them a home for awhile. I’ve done so much, and have received so much. I’m truly thankful for the friends and family I have. I’m very blessed, and I know this deep in my soul. I have always had the ability to be strong for others. I think it’s what helps to keep me going and be strong for myself, but there are times I don’t feel so strong. That’s when my friends lift me back up and push me forward again.
I truly love each and every one of you who has been there for me over the last couple of years. Who have helped me in ways that brought tears to my eyes. You know who you are, and that even includes those who are no longer in my circle. I wish you all happiness.
(Peace be with you)
Reading this was like looking at my own life, with a few exceptions. I have many auto immune disorders, id list them but it would take up a lot of space. I was diagnosed with a rare genetic kidney disease, basically i produce to much oxillates, my body cant keep up so it all goes to my kidneys, they turn it into stones. Ive been told at some point my organs will be overtaken and basically turn to stone, yay me. Meanwhile nothing i can do about it. Ive too lost my faith, and am very depressed i have good days and bad days, but cause i have a 14yr old i always try to put on the happy face, unless im in alot of pain. And i feel ya on the music its about emotional aspect and has helped get me thru. Thank you Jinxie for reminding me that im not the only one and that together with helping hands we can do our best to overcome. Best wishes, hopefully this new year will be better, for us all.
Jennifer, you are truly blessed to have a child. It’s the one thing I’ve wished for and can’t have. I understand the happy face, even without children. If I had them, the happy face would be out more often and I’d likely join in holiday fun. As it is, I just don’t care for holidays anymore. The magic is gone. That’s not depression or sorrow or the like. It’s just a sad fact for me.
I think I have more bad days than good anymore.
*hugs* When we can no longer walk, we have friends who will help us along the way. I’m glad you stopped by, hon. Here’s to a new year!
You’re a good lady, chica. Tough, smart, funny. A good friend. Keep it up. I’d love to say something awesome but I got nothing. Just keep on being you. You rock.
Thanks, chica! *hugs* Love you!
Correction: The Fragile didn’t come out until September 1999, so it was NIN’s prior works that got me through. However, the first time I listened to The Fragile-the entire album in one sitting while working on my second novel-I was reduced to tears. I feel your pain, Trent. I so feel your pain.
okay we have the build-up, in 2011 let’s begin the very long, happy ending okay? 😉
Somehow, we follow each other on Twitter, LOL, and while feeling bored, i came to check out blogs of people I either follow or that follow me.
Wow. And I thought my life sucked! Fibromyalgia? I wrote the book on it–literally. It sucks big time. Took them over 20 years for a diagnosis. Most doctors, still, do not believe it exists.
Auto-immune diseases are the pits. There is a theory that fibro is actually auto-immune. I believe it. I’m the opposite of you–someone sneezes and I’ll get sick. I pick up every damn bug that walks the earth.
You sound a little like me–you’re a fixer. I will go out of my way to help ANYONE–and let myself get depressed to the point that death seems like a valid solution to the problem. There’ve been times that I’ve known that I was here for a purpose–and realized that purpose at one point or another.
Back problems I can relate to as well. I have 5 ruptured discs. Don’t ever teach high school special ed and try to break up a fight between two six foot teens intent on killing each other. I lost. I ended up having to stop teaching.
I’ve written my entire life. I honestly don’t remember a time when I didn’t write. It was, and shall continue to be, my escape. It literally kept me sane.
Ever feel like if you couldn’t write, there couldn’t write, there wouldn’t be anything left?
Hopefully this year looks up for you.
Thank you for stopping by and commenting, Hope. You’ve nailed it. I’m a fixer. I carry the weight of the world on my shoulders, all while knowing I don’t have to do it alone. I am the perfect basis of a character sometimes–tragically alone with a multitude of friends and family. Okay, that’s a bit dramatic, but you get my point. lol
I do believe fibromyalgia is autoimmune as well. It’s one of many that causes the ANA blood test to come back positive. All 3 of my diseases are linked to one another. I also know many doctors don’t believe fibro is real. I’d like to slap them.
The year is looking up so far. Everything is falling into place for me. Whether or not I’m going to like where these things fall remains to be seen. Regardless, I’ll keep moving forward. I’ve kicked the depression beast to the side once again. He’ll be locked up for another 8 years or so. =)
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