Friday, April 1, 2011

On Disappointment

I don't know where to begin, but I need to begin so I can bring it to an end.

(If you're not willing to read all the way to the end, don't bother at all, because you'll miss the point entirely.)

I have had some difficult years, but I'm going to talk about the past year and a half. I am having a hard time putting it into words. So much has happened that I feel like my brain doesn't have the capacity to hold it all. I feel like I'm just walking around on slow-motion auto-pilot, merely existing while the rest of the world moves at a normal functioning pace wondering what the hell is wrong with that girl.

I'm that girl. The girl that tries to fit in and relate and get along and be the ultimate friend, teacher, student, relative, mentor, encourager, and whatever other opportunities come my way where people are concerned. The girl that suddenly became the sick girl, the awkward girl, the confused girl, the weird girl, the annoying girl, the girl that's fed up with a lot of people and a lot of things and finding the voice to make it known.

Am I sick? More than most people know.
Am I awkward? Sometimes.
Am I confused? Not as much as [some] people think.
Am I weird? Probably.
Am I annoying? Possibly.
Am I fed up? Definitely.

Am I the ultimate friend, teacher, student, relative, mentor, and encourager? Not hardly, but I try.

What am I right now?
I am exhausted.
I am overwhelmed.
I am in constant, unspeakable pain.
And I am disappointed.

A while back I talked about a friend who was seriously ill...who had survived domestic violence, lived at the shelter, was half blind, had Multiple Sclerosis, and was dying of cancer...whose life was so incredibly unfair. I wept bitterly for her and my friends and I "adopted" her in pretty much every sense of the word. She moved in with my friends and they took care of her, financially and otherwise, nearly full time. Hospice came in, end of life arrangements were made, bills were paid, gifts were given, tears were shed...everything. Come to find out, she was lying. She did not have cancer. She was not battered and left to die by her boyfriend. She's probably not half blind, and she does have M.S. but was faking some of her symptoms. She used everyone. My precious friends, who took her in and took care of her hand and foot because she was sick and dying. They sacrificed so much and cried so many tears...I cried with them on many occasions. All for this woman who claims that her lies haven't hurt anyone and has no intention of stopping. Turns out we're only a few of many that she has done this to over the years...she's a compulsive liar and a sociopath. Lots of mixed emotions, as you can imagine. Relief that she's not really dying. Anger that she lied about it...what an incredible slap in the face to those who really are suffering...the victims of domestic violence, the cancer patients, the seriously ill. Sad that there are people in the world so manipulative that they will lie, cheat, steal, do or say anything to get what they want...using, abusing, and exploiting the innocent. I was in shock, mad, and hurt. I am still disappointed to know that people can be this way, and have absolutely no remorse.

In a fourth attempt, I finally made it back into college and was doing well. But as it always has, my health quickly declined and I could tell that I was headed for a serious crash. I am so disappointed that I was right.

I relapsed and started having kidney stones again. My Periodic Paralysis continued to get worse as a result. I also had to have pre-cancer and ablation surgery in January 2010 to shut down the psycho-uterus, hopefully for good. It went exceptionally well considering how high risk I am. Unfortunately, the anesthesia triggered a further decline and my condition plummeted. A few days after surgery, I tried to return to college full time but I was so weak and sick that I nearly collapsed on many, many occasions. I was also having prolonged charlie horses not only in my legs, but my arms and even my neck which sent me to the ER throwing up and nearly unconscious. I was on crutches more than once and almost had to ask my uncle to get MawMaw's walker out of storage. I had windows of time where I was functional, and the rest of the time I was flat on my back in bed. I prayed. I cried my guts out. I tried. But I had to drop my drawing class, absolutely devastated. My instructors practically dragged me to the finish line to pass the other four classes. I am so grateful to them for not giving up on me and working with me to finish the semester. I went back to the doctor to discuss my decline, and due to the fact that she was a brand new doc and clueless about my condition, she switched my heart meds, refused the potassium dosage that I requested, and I got worse. This has been an endless cycle with doctors since I was a preteen, and I am in the condition I am today because of their ignorance and unwillingness to listen and take my word seriously. I am disappointed that I pay people money that I don't have to undertreat, mistreat, or refuse to treat me.

So I borrowed more money and went to my previous physician who I cannot afford on my own. She agreed with everything that I said and prescribed the right meds. I was so happy that I burst into tears at the thought of remission and having quality of life again. I thought about being able to continue college, teach on the weekends, resume participation in my non-profit org, and possibly work a "real" job for the first time in 2 years. I improved enough to be able to sit up most of the day and accomplish basic tasks again, but the meds could not keep up and I continued to suffer with Acidosis, daily attacks of Periodic Paralysis, and kidney stones on a fairly regular basis. My weakness, pain, muscle pulls and spasms continued. Then I sneezed one day, and cartilage tore in my chest. This had happened to me years before, on the opposite side of my sternum, and it began a year of extra misery that words just cannot express. I am disappointed that although I was correct in the treatment that I needed, my condition has progressed to the point that the meds were not enough this time to bring me out of this hell.

But I pressed on. In my stubbornness and the encouragement of my students, parents, and brother, I traveled to Florida for another painting certification. The trip was an utter nightmare, but I kid you not when I say that angels were among me. So many people, some complete strangers, came to my rescue when I desperately needed it. Flat tire, stranded, sick, unexpected expenses, half a dozen near-wrecks, dehydration, weakness to the point that I couldn't lift a thing...I would have never made it through those three weeks without the aid of several people. It was rough that I canceled my trip to Georgia to visit a friend and said I'd never make that kind of road trip again. I do of course plan to return to Florida for training (and visit my friend in Georgia), but I will have to make different arrangements in the future to make that happen unless my condition improves considerably. When I returned from Florida, I immediately started summer college classes. It was difficult but I made every effort not to show it. I felt at that point that I had become a burden to my instructor, so I stayed quiet, did my best, and completed my drawing class. When everyone left at the end of the last day, I bawled my head off in the studio and thanked God for finally getting me through those classes after over a decade of wishing. Have I finished my drawing final yet? Nope. I am disappointed in myself for not doing so, but I will. I had to give my struggling hands a break...I got to the point where I couldn't feel them and I was trembling, so I have laid low on the art side of things for a while, with the exception of teaching a few painting classes. I am disappointed that I struggle so extensively with basic tasks and motor skills, and it is a constant reminder that I live with a terminal condition that forever prevents me from leading a normal life.

During the summer, a young relative was nearly murdered by his father. It was a very scary situation and I never dreamed that I would witness a SWAT team in my little town gassing family members out of their home and taking them away. Thank God my young relative survived, but not without a great deal of trauma. I am proud of him for pressing charges against his father, who is now in jail awaiting trial. His decision has brought us safety. What a sad thing to happen, though. Our family has endured so much already over the years. I am disappointed that such cruelty exists among us, after all we've been through.

I am disappointed that I am still dealing with this and don't have a solution since it is not possible to be everyone's friend...especially when they are (or have been) an authority matter how hard I try with no wrong intentions, I have no choice but to accept that it just isn't going to happen.

To put it nicely, and this is all I'm willing to say about it lest I start cussing, I am EXTREMELY disappointed that close members (and not so close members) of my family do not care enough to take care of themselves by making the right decisions to save their own lives.

I am in my 30's and I knew it was inevitable. I am a mother at heart, an experienced nanny, and I have taken care of a LOT OF KIDS in my day. Since I was a kid myself, I have babysat from newborn to age twelve and every age in between. And now, some of those kids are at the college with me. NO. Not my babies. Not here. What am I supposed to do? Be their "pal"? Pretend I don't know them? Ignore the fact that I used to give them hugs and change their diapers and read them stories and dry their tears? Am I supposed to ignore the fact that some of them are depressed? On drugs? Slackers? Scared about college? Clueless? These are my babies. On the other I also supposed to disregard the fact that some of them have grown up to be super talented and great kids that I'm really proud of? Well hello, they're not "kids" anymore. I can't exactly run up to them and give them a hug and do a cheer. So now I'm torn. I have been a mentor to a couple of them and even now I'm "Miss Kelli", while their friends are my classmates. What am I supposed to do with that? I still love my kids who aren't kids anymore, and I love my classmates and have made attempts to befriend them as well. I became angry when I discovered that a young lady I befriended was on drugs. Then I found out that she was getting the drugs from her father, and that's when I crumbled. I realized that I was never angry at her or being judgmental...I just couldn't cope with her problem. I became a depressed mess. It doesn't matter that I wasn't her caregiver once upon a time. I don't want these kids to fail. I don't want them to be afraid. I don't want them to make bad decisions. I don't want them ruining their lives with drugs and ignorance and apathetic attitudes. ANY of them. I want to cheer them on. I want to see them succeed. When they don't, it affects me. When they hurt, it hurts my heart. They are the ages of my youngest siblings and many of the children that I grew up caring for. I can't help but make the association. And I want them to be ok. But they aren't my kids, they are my peers, and I feel like an idiot. Like I need to run away because I don't belong there. That place is not for's for them now. I once felt like I had a purpose in that department, but now I only stick out like a sore thumb. A very awkward and unwelcome thumb. I am sad and disappointed that I feel this way.

But one thing I will always do for them is defend. I had joined an association a few years ago and was involved in volunteer work through them. I paid my membership fee, knowing that I wouldn't be liked by some of the members because of my preferred genre of art. I encountered those people and I smiled and went about my business anyway. Then they asked the non-profit that I'm involved in to host a kids' show, and we did. And they were horrible to us. Called us names behind our backs AND to our was down right ugly. I stayed out of it as much as an officer could, but it was truly appalling that they insulted us so blatantly and it was all based on race, disabilities, economic status, political beliefs, and even our artwork hanging in their gallery. I heard things like "Where did they GET these people from?", "cripples with their disability money", "oh brother, look at her, she THINKS she's cute *snort*" "You know we have special parking for people like you" "Oh, all of her artwork is AWFUL...oh my God! Isn't it the UGLIEST thing you've EVER SEEN?" and of all things "Oh you're in the medical field? Well it's nice that people like you can get decent jobs like that." I was honestly too speechless to acknowledge much of it. I returned to the association shortly after and removed my artwork, but remained "in the know" via email and participated in charity events in the community even though I did not renew my membership. And then the racist, political garbage email forwards started. "I don't like no Muslims! Obama is a Muslim terrorist! This Muslim stamp is proof!" "Black people are stupid...this email survey proves it!" I sent a response proving that their emails were hoaxes, called them a few choice words, and I haven't received a "forward" since. I was, however, still receiving the general emails and participating strictly in charity events and visiting art shows for specific (oblivious to the above crap) nice artists. UNTIL they started insulting my classmates behind their backs. That was the straw. They're going to give scholarships to these kids and then drag their names through the mud? Not in my presence. I calmly defended the classmates referenced by saying how much I respect them, how AWESOME and AMAZING their work is, got up out of my chair, and walked to the door. And then a piece of artwork caught my eye. It was a floral painting that has always been there by the entrance but I had never paid close attention to it before. Turns out, it was a very well done Bob Ross an art gallery where so many are against Bob Ross! And they are completely unaware of it!!! Oh irony, how you slay me! I had to hold back the laughter! That is when I felt completely at peace about saying goodbye to these toxic people for good. So with a smile, I ended the conversation concerning my classmates with "Their genre of art may not be my genre of art, but I still know how to appreciate it." The lady walked away with her nose in the air, and I shut the door.

I am always saddened and disappointed to burn a bridge, but by standing up for my classmates, I guess in a way I finally stood up for myself as well. I do not regret it and I would do it again in a heartbeat. I realized that those people did absolutely nothing to benefit me. In fact, they brought me down from the start. I didn't need them before I joined and I sure don't need them now. I requested that I receive no more emails from the association, parting ways very amicably. No problem and have a nice day. So I can say with rare confidence that it is not my loss. Lesson gained. Moving on.

I am disappointed beyond words that I cannot be a wife and mother, or even qualify to foster and adopt children who are already on this Earth in need of love and care.

I am disappointed that I haven't lost weight since being taken off of hormone therapy after 16 years.

I am disappointed in this country's government, justice system, and heartless medical care industry.

I am disappointed that my adviser has become noticeably impatient and/or uncomfortable with me when he is one of my heroes. In the beginning, he cheered me on. The second semester and beyond, I feel that he merely tolerated me because it is his job. It was a major change that I don't understand and there isn't a thing I can do about it. All I know is that I remained true to myself and I tried to be a good student.

I am disappointed knowing that if I unexpectedly die, most if not all of my family will not know what really happened, because they have little to no interest in understanding my systemic disease(s).

I am disappointed that some of my friends have ditched me and others, preferring their own world online via World of Warcraft and other games, not caring that we're here thinking about them, sending messages of concern, and wondering how they're actually doing in real life.

I am utterly devastated that one of my spiritual mentors...who I grew up with and is practically family...that I love and respect dearly has fallen off the wagon and made terrible relationship decisions, including leaving his seriously ill wife who he swore he would never leave. I've cried more over this than I've cried at most funerals. I don't know what else to say. I just know that it's another reminder that we shouldn't hold any person in high esteem, because they will almost always let you down. I am say the least.

But most of all, I am disappointed in myself. For what I wish I was, how wise I think I should be, how strong I need to be...but on many occasions, I'm not. I know I have disappointed people, and I'm sorry, and I want to be a better person. I hang on to hope that someday I will find the wisdom and ability to be exactly who I was created to be. Only by the grace of God I live and breathe, and I give Him my heart in pieces...and trust that He will continue to hold me up, help me stand, and put those pieces back together again.

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

Life is full of disappointment...sometimes it seems like an endless supply. But I count my blessings in spite of all of the above, what is, and what is to come. When I am upset, angry, disappointed...God understands. He never said life would be easy...He just said it would be worth it.

If you are going through an especially difficult time as I am, I pray that God touches your heart and lets you know that He is still there. Even when we can't see Him, feel Him, or hear Him...that is when we just have to trust and believe that the valley we are walking through is just another bend in the road.

When we feel we have nothing left to give
And we are sure that the song has ended
When our day seems over and the shadows fall
And the darkness of night has descended.

Where can we go to find the strength
To valiantly keep on trying,
Where can we find the hand that will dry
The tears that the heart is crying.

There’s but one place to go and that is to God
And dropping all pretense and pride,
We can pour out our problems without restraint
And gain strength from Him at our side.

And together we stand at life’s crossroads
And view what we think is the end
But God has a much bigger vision
And He tells us it’s only a bend.

For the road goes on and is smoother
And the pause in the song is a rest
And the part that’s unsung and unfinished
Is the sweetest and richest and best.

So rest and relax and grow stronger
Let go and let God share your load
Your work is not finished or ended,
You’ve just come to a bend in the road.