Imitation Life

I had a feeling we’d be right back here

In this twisted world where nothing’s true

And even now with our goals in reach

We just keep doing what we shouldn’t do

It makes no sense what we’re giving up

A life of love and God and trust

Filled with blessings beyond our dreams

Yet we can’t stay away from what we must

Will this cycle ever end?

Or are we destined to fall apart?

We both know where this always leads

Placing distance between our hearts

What we’re doing just isn’t right

It’s nothing more than an imitation life

I want what’s real that we can share

With God as our focus and love on our minds

It’s time to make a drastic change

And agree to leave it all behind

Create the world we deserve to have

And reject all the limits some try to demand

Shaving Tears

In the midst of moving, I just so happened to stumble across the wig I got after having to shave my head due to chemotherapy back in 2006. Why I saved this momento in a small ziploc bag, I’ll never know. I’ve done crazier things, so I just don’t let it bother me anymore. However, this piece of my past holds so many meaningful and powerful emotions along with it. Holding it in my hands for the first time in 10 years brought all those emotions flooding back to me. I started crying and I couldn’t say if I was shedding tears of sadness, pain, peace, or joy. It was probably a little bit of all of them.

My father, who is my hero beyond a shadow of a doubt, was completely there for me from my original diagnosis of aplastic anemia in 2002, it’s mutation into myleodysplastic syndrome in 2004, my bone marrow transplant in 2006, and my battle with acute graft vs. host disease. (I’ll go into more detail in later posts.) My father watched me as I continued pulling out chunks of hair every time I ran my fingers through it. Eventually I just looked at him and said, “Well, do you think it’s time I shaved this off?” He got out the hair trimmers and we buzzed down my hair as much as could be done without a razor. As he helped me as much as he could, I caught him try to hide a tear that ran down his cheek. Now, my dad’s not the type of person to show his emotions or show anything other than cool, calm, and collected. This was one of two moments in my lifetime that I’ve ever seen my dad shed a tear. So you can imagine my surprise and immediately I started making jokes even though I wanted to break down into a puddle of myself. But someone always has to be the strong one. Don’t think I’m talking about myself because I faked every smile while I fell apart on the inside. In a way, your hair becomes an extension of who you are and I felt like I lost part of my identity that day.

Interestingly enough, after getting the wig from a little store in Barnes-Jewish Hospital, I rarely ever wore it. I was happy in hoodies and pajama pants. And I was pretty much quarantined to my apartment due to being immunosuppressed, so I wasn’t in the public eye very often. Plus, wigs make your head really freaking hot! I don’t know how many of you out there have tried one on for Halloween or some other reason, but expect to be sweating in no time at all!

Anyway, I had to get a post out there because I’d like to pass the wig on to someone who needs it. If anyone knows of a place I could donate it to or can benefit from it themselves, please contact me. I’d love nothing more than to know my experience was used to help someone else through their’s.

Expiration date

Expiration Date

I don’t remember the day or week or month it actually was when my whole existence was brought to a sudden screeching halt. Up until that day, I’d always spoke praise of my oncologist’s bedside manner but everything about his demeanor that day was different. No gentle smile, no warm handshake. He just came into the office and plainly started with, “This is where we’re at…” His words were so chillingly disconnected that I found myself start to go numb. I remember hearing “six months left” and “finding a bone marrow donor” but no one appeared in anyway optimistic.

Thankfully, my father sat beside me soaking up all the news and jotting down notes because I had officially shut down at some point and already began blocking out my own reality. I mean, how would you handle being told you have six months to live?

You’d think that would be a seriously hard thing for someone to process. Which it was, of course, but the part that made it the most difficult was the fact that I heard those words over 11 years ago and I’m still here. For most of those years, I still believed the doctors and held onto the thought that I was dying. So I simply existed as if I were already dead and sat around waiting for it to become a reality. I gave up on myself and my goals and my dreams because I didn’t think I’d have the time to create what I had always envisioned my life to look like. I wasn’t strong. I never fought for my life. I still don’t understand why people called me inspiring when I didn’t do anything but survive a terminal illness. Isn’t it ironic that God would keep me here when I was ready to leave this world so long ago? Apparently, He kept me here for a reason and a purpose that is becoming clearer and clearer now.

Being completely honest and real here, I’d have to admit that it’s taken me over a decade to finally stand up and fight for a life worth living and crave the feeling of just being alive. Like everything else with me, it takes an extra amount of time to finally “get it”. It took me years to reclaim my identity after an abusive relationship and believe I deserve to have a beautiful and fulfilling life. I had to experience the process of finding myself and what I want. I was lost, but thank God, I’ve been found! And thank God I’m still here with the ability to touch lives to this day.

Crazy? So what’s normal these days?

Just the other day, I had a friend ask me for help and this wasn’t the first time in my life that I’d been faced with the same situation. I don’t know exactly why God uses me for the purpose of helping those in mental anguish. It might be because I have no plex in letting everyone and their mom know that yup, I’m certifiable! I joke about it and try to make light of something that is a serious issue and has caused me many problems throughout my life, but its also given me insight to be able to help other people like my friend, for instance.

No one wants to admit that they might not be “right” in their head or they’re having thoughts of hurting themselves or others. Most times, people don’t even realize they’re sick in the midst of an episode. I was diagnosed with bi-polar 1 disorder after my first, what I like to call, “episode”. I’m one of those who unfortunately blocks out the time from when the psychosis begins to when I find myself in a completely white walled room with a camera on me and a door locking me in.

Other people, know something’s wrong and probably have known for quite some time, but it’s the asking for help part that’s so hard. Thank God for giving me the ability to be that helping hand for someone during such a difficult time. I mean, who wants to admit that they think they’re going crazy? The stigma asssociated with mental illnesses is part of why people don’t feel comfortable talking about it or getting help when it’s needed. Who wants to admit they hear voices? Who wants to admit they’re paranoid that someone or something is out to sabotage them? Who wants to admit they inflict physical pain on themselves by cutting their own flesh rather than dealing with the real pain only they know exists?

There’s so many different types of “crazy” out there nowadays, that it makes me question who or what is considered normal? Anti-depressants are the second leading medication prescribed in the United States behind penicillins and anti-biotics. With that many individuals hopped up on psychiatric pills, shouldn’t we be questioning what’s wrong with the world that so many people are dealing with these mental disorders. I’m not saying that all of us who are prescribed psychiatric drugs should stop taking what obviously makes us able to function better in regular society. I’m just wondering what the real problem is and where it begins.

For myself, I was blessed with the genetics which made me prone to the mental issues I experience and continue to deal with. My mom and most the women on her side of my family suffered with the same problems. Unfortunately, it wasn’t talked about in past generations like it is today so I witnessed our “crazy” unmedicated and I’ll be the first to say that I need to TAKE MY PILLS! However, the prescribtions aren’t a “cure-all” by any stretch of the imagination. That’s what led me to self-medicate with other drugs throughout my life as well. As you can probably imagine, most cases like mine, involve addiction problems. Now we’re getting into co-occurring disorders which is a whole other topic I’ll talk about later.

The main idea I want people to walk away with right now is that it’s okay to be “crazy” and the more you own it, the more people will feel comfortable owning their “crazy”. We weren’t meant to be perfect and God loves us for all our flaws and imperfections. Don’t be afraid to be yourself and ask for help when you need it. If you’re supposed to take medication, take it! It might be a process to find the right medication for you, but it’s worth the struggle. And find a good psychiatrist who’ll lead the process and tweak it as needed. It’s a life-long process and everyone’s different so just figure out what works for you.

Beneath the surface

Much like my ability to hide the addiction issues from my friends and family, I essentially learned how to do the same thing with my health problems. From just looking at me, no one would have any clue about what I’ve been through physically and continue to deal with. This gets a bit technical but I’ll try to keep it as basic as possible with the correct info.

I fell ill shortly after graduating from college in late 2002 and it took about six months of being monitored at the Midwest Cancer Center in Columbia, Mo., before I was finally diagnosed with a rare blood cancer affecting the bone marrow called aplastic anemia. Basically, this meant that my body stopped creating the blood cells called platelets which we need in order for our blood to clot. Starting out, I had to get platelet transfusions and other blood transfusions on a monthly basis to keep my levels normal, but it didn’t take long before I required the transfusions more frequently. For example, my platelet count averaged in the 40s when normal counts range between 130-400. Plus, platelets only last 24-72 hours after transfusion.

It was decided by my doctors and family to undergo Antithymocyte globulin or ATG treatments in September/October 2003. The treatment was a serum administered intravenously for several hours during the process of four days in order to suppress my immune system from attacking the new cells that my body created. Starting off, the first treatment gave me a severe allergic reaction that required my first experience of being slammed with steroids to combat my body’s rejection of something that’s supposed to help me. Other than a problem with my veins giving out, blowing, or collapsing on the IVs that were replaced repeatedly, I made it through the treatments and was placed on cyclosporine pills. This medication was designed to keep my immune system suppressed while I had to wait for 6-9 months to see if the ATG treatments had been effective.

To the relief of my doctors, friends and family, my blood counts stabilized and I was able to live two years on the immunosuppressive therapy before I started getting sick again. Apparently, my disease had mutated into a more advanced bone marrow disease called myelodysplastic syndrome (MDS), otherwise known as pre-leukemia. I was admitted to the hospital a number of times in late 2005 and early 2006. My health continued to deteriorate including my blood counts. This was when I was informed that I would only have 6 months to live if I didn’t receive a bone marrow transplant…

Paranoia in full effect

Call me crazy. I’m used to that, but I would swear I’m finding hidden messages in everything… maybe it’s just where my mind takes me.

Nope, I think I’m right on target. You, whoever “you” are, have been trying to send me signs and warnings for a decent chunk of time now. I’m just too damn stubborn or set in my ways to have changed anything even though I’m pretty certain the consequences to ignoring them are far more serious than I even want to admit to myself. There must be a lot of resources going into monitoring me and trying to aide in my recovery. I’ll never understand what has made me deserving of this kind of help. But I do believe that it is meant to help me, not hurt me. Hell, I’m hurting myself bad enough with my addiction. I definitely don’t need any more help than what I’ve already got coming at me from people who I considered my friends. What hurts me the most out of all the horrible experiences I’ve been through while in my addiction, is that I can’t trust a single soul I’ve crossed paths with in the past 8 years. The people who were supposed to be my closest “friends” are the one’s who want to use my name to save their own asses. I don’t have proof of this. Yet, I don’t have proof of anything I’ve written in these lines. I seriously doubt I ever will. I just go with my intuition and see things on a different level than most.

On that note, somehow I know the guy that called himself “Brandon” was trying to tell me something the other day. For one, nothing added up. How would a guy that ran the streets have on a nice LiveStrong T-shirt with an expensive Bluetooth headset wrapped around his neck? Not to mention, it seemed odd for a guy that just got out of prison after doing 6 years flat and got beat down just the other night to be driving a nice U-Haul truck. Granted, he could’ve stolen the truck, but I didn’t get that impression. Neither did I get the impression that he was a hardened criminal. I’ve been around hardened criminals. Not of my own choice but just due to circumstances beyond my control. And “Brandon” was no hardened criminal. So what exactly was the purpose for him to freak out the other girls I was standing with? They were a bit scared off by him so at least he fooled the majority, and I give him props for that. But I’m a whole different breed and I saw through his story right from the flip. I could be wrong, but I didn’t get the sense that he was a threat. If anything, I felt like he was checking on me, maybe warning me, and somehow testing me. So did I pass or fail?

I know I’ve been failing at my attempts to get clean but I’m not giving up so don’t you go counting me out just yet. I’ve tried to do it on my own, moved outta my house and into the hollow home I hate now, joined a program that has helped save so many other addicts, and none of it has worked for me. However, our failures are just lessons that lead us closer to success. My next course of action is to do an inpatient treatment program to get me past those first two weeks that I keep relapsing in. If I can overcome the depression that ensues when I get clean initially, I think I might just have a fighting chance at staying clean for the long haul. Plus, I get the feeling that time is of the essence and “the forces that be” are running out of patience with me. Like I already said, I will figure it out and overcome this battle. I haven’t run outta ideas or options yet so I know I still got this. I’m just one step closer today than I was yesterday and I’ll keep getting closer until I reach the goal.