I posted a letter I wrote to my sister this morning after a couple days of drama and pain. When you have an illness, raw naked honesty is hard to come by, especially when you are in an episode.  But it sure as hell works to help your family through the pain. Hurting my son Fonz and my family is the most horrifyingly painful part of my illness.  Maybe you can relate…


Dear Sis,

I can’t believe I actually shared all that pain and bullshit with you last night. The sky worked and you made me laugh at the ridiculous in my plan.

My plan sounds crazy but it felt so good to believe that I could release us all from the insanity I live with. But that feeling was fleeting because that plan is doomed to fail as well.  it sucks  but there is no fix, no answer, no cure ~ there is only maintenance,  painful patience and a big dose of acceptance (and medicine)  which is all so difficult and exhausting. I’m super tired of it all but it won’t stop until I leave the planet.  All I can hope for is to find ways to minimize the effects on you and Fonz and my family.  It makes sense that you believe help is available and I just need to go get it. But the available help will only teach us to cope with it ~ there is no stopping it from happening Sis.

I wish I could find a way that works to stop (heal) the swinging back and forth, the behaviors that hurt not only my family but me too.  But this cycle is my life and I regret that you and others have to ride through these painful episodes with me.  Like it or not, I’m sure the tide will rise from this bottom like it has for 35 years and Karen Lynn will return to shine brighter than ever,  for awhile anyway,  but don’t be fooled Sis, at some point she will fade again (and again) into those ugly behaviors we all hate so much.I’m so sorry.  and I am just as sick of it all as you are, probably more so.

I admit being my loved one is a painful challenge.   It makes perfect sense to me that you would fight against the ugliness and drama of my illness, especially when you see me not fighting against it at all. This fight wears me out girl, for real! 

Consider this as true… it is frustrating and painful to confront my illness which often leaves me (the non-ill part of me) powerlessly locked away from any hope that I can do anything about any of it.  It also makes sense that you forget (or not believe) that I am powerless too.

It looks like I have control (normal people have control over their own behavior and decisions) and I should be able to just stop it (the guilt and sadness of no control kills me)   An illness like mine is deceptive like that      so I don’t blame you for expecting me to have control over it.  I push back hard with denial and defensiveness when you push for me to just stop it as if I can,  as if I know what is going on. I often don’t even realize how bad it is because I can’t see it from the outside like you do.  I’m not trying to be difficult Patty ~ I being honest when I say "I don’t believe I can stop it"  I honestly feel powerless over changing the nature of my illness and that is what you slam into when you confront me (instead of my illness) with an expectation that I can simply change it, stop it and never do it again.  ~ you slam into the wall that I get hopeless lost behind when I am in an episode ~ the one I’ve lived with since I was 18 years old.   Trust me it sucks really bad for me too but that does not invalidate how much it sucks for you and for Fonz and for everyone in my life.

When I’m not in an episode, confrontation and relationship conflict does not bring the same pain or drama. When I am in an episode, I’m pushing back against the idea that it is me, Karen Lynn, behaving badly and that I can simply stop it like a normal person. I don’t mean to push back against you and your feelings or your reality.  My reality is so fucked up behind the wall and rarely can people recognize how lost I am …  so of course I feel invisible and unheard.  I can’t see or hear me either when it happens.
My commitment was and is to minimize the effect of it on you and Fonz.  This bout was particularly strong and it got away from me big time.  I’m so sorry about that. The recent drama and your pain help to wake me up to the reality of this episode but  I feel as powerless as you do and there is nothing else we can do but wait until it passes. That is the part that is so painfully hard to accept.

You know how hard I fight against crying about it (or anything else) but the tears fall when I say  "Thank you Tat for fighting for me, especially when I stop fighting for myself"  The tears fall because I feel truly and deeply grateful for your presence in my life and for your commitment to our living without the ugliness of my illness. I hate to think about what life would be like for Fonz and I without you and your fighting spirit.

I feel so sorry that I can not offer you a promise of change. I wish I could with all my heart.  I do not expect you to suck it up and live with it Tat.  But please try to understand that I have to suck it up and live with it.  I do not want Fonz to live with it.  I truly believe Fonz is better off living away from me. My illness is hurting him pretty bad.  Maybe living apart is possible and maybe it is the absolute right thing – the most loving thing I can do for you both.  Not saying that to hurt anyone ~ I truly want to free you both from the terrible pain of my illness. Can you help me do that?

I know it is a lot to ask, I know it isn’t easy but I agree we have to do something more permanent and effective than just living through this shit every time it comes and goes.  I’m serious about this Sis.  I hope you know my heart is full of love for you and my kids.  It is not abandonment ~ it is a loving release, a plan to save Fonz and an option for his future.  It is getting worst as I age and there are no signs of it getting easier ~ I think it will get harder and worst  so we have to get Fonz away from me before it is too late.   I’m not playing a game now.  I believe this is a rock solid plan but it does not have to be an abandonment like I talked about last night.   I will suck it up and endure the pain of being in your life but separated from you two if it means that you and Fonz are safe from the hurtful consequences of my episodes.  Doesn’t that make since to you too?

So it’s like you and now Loni (just  of the phone with her) say — We can think of it like going away for treatment. I can not live with my family until I get better. I can not stomach hurting Fonz or any of you  for even one more time. He deserves to be safe from my illness and so do you.  This is my focus for now. Protecting you and Fonz from me (not me from you) is my absolute main priority!!!!!!!!!!!!   I may or may not get better – It’s a 50/50 chance. But You and Fonz can be free from the insanity of frequent, intense ugly episodes while I try again and again and again but only if we chose not to live together.  I hope you believe this is the right thing to do and I pray you will help me by helping Fonz be happy, safe  and in time, accept that his Mom is too sick to raise him and live with him.  I know it is sad but we both know it is true.

I love you and I am really sorry about all this.


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