So it's time to get focused. First of all, here is the update on my own personal health & journey. As I said before, I went into a pregnancy-induced remission and unfortunately symptoms started up again when I was 6 weeks post-partum. I have had one round of Botox treatment since; that was in February and it was a very small amount injected. I still have good days and bad days but I am training my brain to find different ways of coping. I had an appointment for injections last week but I cancelled the appointment because I feel ok. Not perfect. But why inject myself with something if I'm not truly truly suffering? The suffering is there but I am managing. It is a day by day process for me and focusing on the here and now has worked wonders. It sounds cliche and I'm annoyed of myself for saying it but never underestimate the power of right here and right now. Right now I am in bed with my pup and I can feel the Dystonia but I'm alright. I'm breathing. I'm moving. I'm feeling.
I have received so many emails and I'm still delighted every time it turns out to be someone from a different country, or state, or continent. I post the link to my blog on my facebook and people have found me on google and I couldn't be more grateful for how far this blog has come and how many people it has reached.
I've noticed that unless someone or something has truly, truly, inspired me, I don't have the best advice and I think that is a part of why I don't feel inclined to answer some emails until I'm ready to answer with an open heart and with honest advice and wisdom.
A floodgate of openness and love and hope has opened up in my life and I'm not sure where it will take me, but I am grateful regardless because I feel that burning passion and purpose and determination to make my words be heard and seen and I just want to HELP those suffering souls out there. Based off all the emails and messages I've received, there seems to be a theme and one singular question I am getting asked;
How do you HANDLE it? How do you ACCEPT it?
Such a simple question and such a complex answer. There is no simple answer, no trick or magic cure to living a "normal life." To put it simply, I just DO. Quitting is not an option. Laying down and letting it run over me like a truck is not an option. Throwing a pity party is not an option (okay maybe the occasional pity party is necessary but DO NOT MAKE IT A HABIT.) I'm picking up on a theme...and it scares the living daylights out of me but inspires me to the core-in all the emails I receive, every single person sounds so incredibly lost. So lost. So confused. Wandering around aimlessly with no direction; just angry and confused and hurting and afraid.
The good news is this: being lost gives you room to adapt, to change, to grab hold of an opportunity and live a life no one else has lived. It gives you a chance to think differently about your life and the people in it and for me personally, appreciate those who love me and stand by me. And I think that is the point...
This blog has unintentionally become a log of my (sometimes disastrous) love life. I can't help it. I started this with the intentions of being an open book-totally candid, completely transparent, and brutally honest even if it's embarrassing or unpleasant...what is the point of speaking my truth if I'm not going to share all? That is what connects me to this community I have grown to love and know. Speaking the truth is what has kept me going and honest about my truth and my relationship with myself.
So how do I deal? How do I accept this fate?
I believe in these simple truths:
1.) Going through something like this changes you. I don't see how it can't. It can be a bad thing. But it can also be a good thing. If it makes you a better person, a more compassionate, loving, and honest individual, find a way to have a relationship with your disorder. Embrace it. Nurture it. Adapt with it. But don't let it defeat your mind. Sometimes I feel myself slipping and spiraling down the rabbit hole into a pit of despair and feelings of inadequacy...STOP DOING THIS TO YOURSELF. There is absolutely NO point and it will stop your life right where you're standing. Keep moving. And if you can't move physically because of your disorder, never forget that you still have your mind. You can still be you and speak your mind and have opinions about things and desire things and you absolutely 100% deserve nothing but love and acceptance. Which leads me to truth #2...
It is no secret that I have a very deep and personal relationship with God. I have pushed and resisted that relationship this past year through all the bullshit I have had to go through but once again, God is bigger than my stubbornness and broke through that icy cold bitch wall I had built around my heart. For me personally, hearing over and over how I am not good enough has really invaded my mind in the worst way possible. I completely shut down and I am just now waking up from this temporary tantrum of "fuck everybody" but let's be honest here...
It is a cowardly way to live. It is fear based. And it is dishonest to what my heart wants. Don't build a wall around yourself because you are afraid of rejection and getting hurt. So many young women tell me over and over that they feel like no one will ever love them and accept them. My advice to them is simple...Always be an open book. Be gut wrenchingly honest about yourself, your situation, and what you are all about. Don't hold anything back. Holding back will get you nowhere...maybe a one way ticket to lonelyville and that is NOT somewhere you want to be. So my final truth...and I'm just starting to grasp this one...
Love doesn't discriminate. What is meant for you will find you and love you and pursue you and not let you get away. I think it really is THAT simple. Or at least it should be.
I hope we all find someone who sees our scars and wounds and imperfections and disabilities and embraces them. This life is short and crazy and messy and scary but damn, there is so much to be grateful for. So much to look forward to. So much love to be had.
SO...this is how I cope. With pure and childish hope and by moving forward with the belief that everything will into place like a puzzle and someone will find me and see me and love the imperfections and never let me go. I am an incurable optimist. This is SO much bigger than me and I know it gets easy to focus on how awful things are now...how lonely you are now...how bad things are now...but that's just now.
Please, friends, keep your heart open. I know so many of your are suffering but don't let it destroy your kindness. Don't let it close you off to love. Don't let it destroy YOU.
So there it is. I have no medical secrets, no magic pill or tricks that enable me to cope. I cope by loving. And by hoping. I know things don't always work out the way we hope but my God, what if it does? If something as devastating as Dystonia can touch my life then why can't something absolutely amazing and unexpected touch it as well? That's all for now.
As always, I'm here. Please don't be shy or afraid to reach out.