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.

Blind Faith

What have I done?
I’m way off track.
Another reckless choice I made,
With words I can’t take back.

I let my fear and doubt take hold,
With paranoia controlling me.
I can’t avert the blame this time,
Or hide from what I know they see.

It seems I’m not the victim here,
Like I always played so well.
I’m running out of roles to play.
What’s left of me is hard to tell.

I don’t know what I want in life,
Or where I want to go.
Right or left, I can’t decide.
Depends on if I’m high or low.

I change my mind with every breath,
And can’t explain the things I do.
I know I don’t make sense sometimes,
And get confused on what is true.

I’m stumbling lost as if I’m blind,
Reaching out for what is real.
I follow my heart in every way,
So I have to believe in what I feel.

Who would correct the blind man
If he told you of his view?
So I trust my heart to God’s pure will,
And pray for faith to see me through.