venting, depressed, confused....

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Back in November I was diagnosed with an AVM for which I had a failed embolization procedure. I was planning on having radiosurgery to take care of it, but it ban leaking and I had the more conventional and invasive brain surgery in mid December. What's most remarkable is that during this time I met someone on line and developed a very meaningful friendship with her. She has remained a close friend through all of this. Back to the point, I never have begun a decent recovery from surgery. I now have balance issues, headaches, seizures, incontinence, aphasia, cognitive issues, it just never ends. I have been to several specialists, several experts…..and this has me currently living out of state, as my parents work they cannot stay with me and have put me in an assisted living facility where I have meals and transportation and someone to help with me medication…. it's depressing, and what's worse is the fact that I have made zero progress since the surgery.

Right now, I feel completely isolated and hopeless. I want to walk away from all of this and make it end. I want my old life back, where I have my own home and my work and be in a place where I am not ashamed of who I am.

My friend, she still wants to be with me, but she doesn't understand how bad things are, because I haven't had the courage to tell her. She says she can handle the situation, but why go into something so dysfunctional from the beginning? I have to wonder how long it will take for the health issues to make it impossible anyway. Can you imagine…this is my boyfriend, he cannot speak, and that smell, well, he becomes incontinent when he has a seizure…… no one could do that for too long, especially just starting out……. and I am on disability it's not like I'm making a living at all right now. I just don't see it working out. I am so confused. I love her so much but she needs someone that is at least man enough to take care of his own needs. I don't know why she doesn't understand that.

It doesn't matter.

Many of us are dealt things in life that change things forever. No matter how much we may wish, sometimes it's just not possible to go back. We have to move forward and make the best of what we do have. Yeah, I know, that's easier said than done.

I have a Bipolar sibling with frequent seizures from brain damage due to a near fatal accident during a manic phase. That sibling is high maintenance. They are on disability. And they still deserve to be loved and the opportunity to give love. That sibling is now married. It works because my sibling was 100% upfront about the issues. Their partner chose to deal with it. That's for the partner to decide. Some people can handle it. If someone loves you unconditionally like that, you are very lucky to have them in your life.

i do what I can to support her.

I'm hesitant to dole out any sort of advice or commentary to anyone when I have never been in his/her position myself, but ...

I've worked with clients with more severe disabilties and medical conditions than yours who have relationships that appear so healthy and fufilling that I've envied them. I've also seen clients' relationships fall apart due to circumstances a lot less challenging than yours. So, it really does depend upon the individuals and how much they can handle.

It sounds like you're internalizing an awful lot and taking responsibility for many things beyond your control. One responsibility you do have, though, is to be as open as you can with her, as hard and scary as I'm sure that is. I'm not clear on how much you've shared with her or how well you know each other (how much time have you spent together in person?) and I notice you referred to her as a friend. Even if she is a nuturing/giving/motherly NT female-type, don't assume that she has picked up on how much you care about her or the types of things you're struggling with. (Long distance relationships make miscommunication so easy!) If you let things fester, it won't be good for either one of you in the long-term. And, that you are feeling so isolated could be a red flag you aren't sharing enough.

I really hope in time you get to a place where you don't blame yourself or "feel ashamed of who you are." Largely, you get to decide who you are, as the flotsam and jetsam settles and you start to make sense out of these experiences over the next few years, then decide how to use them. Recently, I read a thread where you talked about being a therapist and was floored.

Where I work, we are developing plans to create a disabilties service campus, where people would have access to (among other things) medical care and mental health services from people competent enough to provide them, meaning that they understand the unique needs of persons with disabilities. The thing, though, is that it turns out these professionals are very hard to find, if they exist at all. Just look at how many people with Asperger's on WP have been traumatized by bad experiences with therapists who do not understand AS. Imagine how many nonverbal folks or folks who use augmentive communication have horror stories, too, if people were listening. I saw you and thought, "a nonverbal therapist who knows what it's like to have to use alternative communication, my God, I wish we could hire this man!" Was kind of disappointing to learn you live so far away and need to focus on your rehab at this time.

Honestly, though, even just working with people on this site, remotely through email, in a format friendly to those with neurological wiring not conducive to face-to-face meetings, you could make a mint. So, as far as being a man who cannot support or take care of himself, don't give up quite just yet. Even if your seizures cannot eventually be better managed or your cognitive issues are of such a nature that they keep you from practicing, you've got to write a book and share your experiences, at the very least. It'll be edifying for us all.

With all you're dealing with right now and as dark as things might seen, I wouldn't be suprised if you were a little dismissive of what I'm saying, but I'm not crazy ... okay? There may not be another person on the face of the earth with the same experience and insight you own. You have so much to give to the world, even if over time you don't wind up seeing as much substantial progress in your rehab as we all want for you.

I don't pretend to have thing more going on than any of you here. I actually feel like a tool for posting anything. I'm not suicidal, I have my family, and they love me and care for me, I have food and shelter and medical care and psychiatric care. I have so much that a lot of people do not have.

Floored that a therapist encounters situations beyond his level of expertise. I am v. good at dealing with other people's issues never at seeing my own situation clearly.

Her..... She loves me. has told me so. She wakes me in the morning and is "with" me until we fall asleep together separately. I have been v. honest with her re: seizures and all that goes along with, and about the indeterminate amount of time my recovery (or not) will take. I don't go into gory details or numbers. I don't txt her every time I have a seizure, I've often wondered if I should, but then I don't quite remember things clearly afterward. We have worked at honesty and asking clear questions to avoid miscommunications.

I hate being this honest, but frankly I do not understand her motivations for her behavior. She can do so much better. I have had women want to be with me based on my looks. Based on the fact that I am addressed as Dr. or my income (I no longer have that).... maybe she is hoping it comes back. It's a real f******* long shot. The facts are the distance is too far and she can have a whole person. There is no reason to want this.

Thank you for the positive words. The truth is, it's the girl that's got me in a kerfluffle and nothing but time will tell whether I will recover and how long she'l stick around. I guess I wish she'd go already and get it over with and then I could just be alone again. It's comforting to not wait to be left.

F**K

I hate this crappy post. I am a huge spoiled baby

I am not a professional but I will comment in my usual direct way.

I don't like to be honest about my situation, with myself and that means avoiding discussing it with her. She will jusr say nice things and make it seem like I can have something nice and normal. But I know she couldn't deal with it, I don't want to make it harder.I want to make her life wonderful, not messy. I want it to be perfect.

You are a good person with a great personality. I've seen your posts. You're thoughtful, you will endlessly talk to someone when everyone else has given up, and you are witty and funny in the random/games threads. I can almost guarantee the women who liked you were not only interested in your looks or the fact that Dr was attached to your name.
I'm sure this girl honestly loves you. Don't take that away from her. You may not logically understand, but you love her for a reason. She has the heart to look past what you see as dysfunctional. She only sees you. Don't let your insecurities hurt her. She wants you, let her have you.

I meant to comment on this in the last post and I forgot...

You have been through A LOT, you have every right to feel all of these emotions that you are feeling. You are very strong to have even made it through a surgery like that. You are definitely not a tool. You should come here to seek and accept support anytime you need it with out feeling bad about it. You are in a very difficult situation, it can't be easy living in that environment with your sensory issues. It's good that you aren't suicidal. You don't have to wait until you are at rock bottom to seek support.