I joined a new online support group. I haven’t officially “left” the other one yet, though. What if I still have AVM questions or new symptoms? I have a fear of letting go yet I have a fear of committing to anything because I have a fear of failure equal to my fear of success. I’m a weird person, I totally get that. I like to pretend I’m normal, disabilities aside.
So this new group is actually really great. It’s on Facebook. I connect with a lot more of these members than in the other groups. Apparently, the problem I’ve been having is that I have been more affected by the stroke than the AVM itself. I had the thing my whole life but I only really knew about it for less than 6 months after it was discovered and then removed. I got my answers, or most of them, about what exactly an AVM is and the treatments, blah-blah all that really boring stuff full of jargon so thick with a practitioner’s accent; then, I eventually became less interested in the cause and more interested in:
Why am I the only AVM survivor left with so many deficits????
Yeah, no one really cared, but I did. No one likes to be in a situation as difficult as surviving something they have been told should have killed them only to find themselves with no one that could fully understand. It’s so depressing. Gosh, all these people I could communicate with about the one thing that didn’t bother me. They were all going on about their problems that I felt weren’t real enough to validate a complaint from them. Who am I to judge these people? I kept having to distance myself from these strangers with their not-real-enough problems because they made my problems feel exaggerated! That blows! But I had questions so I kept coming back and each time, no one could relate, no one could offer answers. I got a lot of referrals to the search bar or people telling me:
I wouldn’t know. My physical deficits recovered before the week was out
My paralysis only lasted a few months
These people had no clue. So, now I’m in this new group and I feel an actual connection! I can talk about things that make sense to others and they can agree and they share the same experiences. I’m no longer alone. I am young and I survived a stroke that left me with some pretty in-the-way deficits that I thought were uncommon if not rare and I discovered the truth is quite the contrary. Even my depression is on a level shared with others _ it’s not extreme at all. I’ve responded to a few discussions and the responses I’ve received about my honesty are positive. I’ve opened a few dialogues that people have said they were thankful I started because they were too afraid and unsure about how their questions would be received. But I have things I have been dying to know about so I asked…with my real Facebook profile. That can be damn risky!
I’m so relieved I cannot even describe it. Some of these people are just as miserable as me or just as willing to accept their losses if they can’t overcome them as I am. It’s very comforting. I was nearing a point where I thought support groups were for weak, whiny people who were surrounded by people tired of listening to them drone on about their problems but, no; they can be very helpful. Maybe these people can’t relate to me about broken mental barriers (I haven’t asked [lol]) but at least they get shaky limbs during orgasms too! I was starting to think I’d never find anyone that I could ask:
Does this ever happen to you?
It’s also nice to be reminded that it could be worse. It sounds mean to say that but let’s be honest, we all need a little reminder every now and again that our lives are not as bad as we perceive them and unfortunately, that means someone else has to have it worse. At least Kasper stayed, I still have my kids and I was able to get into housing before we lost what little possessions we had. I’m not in a wheelchair, I can still partake in an active sex life and yeah….I still have my looks. I’m not gorgeous BUT there was a day less than a decade ago that I was told on more than one occasion that my looks are ‘intimidating’ and caused a delay in more than one man’s approaching of me. I’m definitely no super model and my looks have won me nothing but trouble but I still look the same. At least I can still look in the mirror and as long as I don’t smile, flare my nostrils, raise my brows or try to wink the left eye…I can still feel like myself visually. That’s a lot of ‘don’t-do’s’ but I don’t mind.
It’s important to find people who can not only help you through difficult times in your life but can also understand and comprehend what is going through your mind without needing every detail explained. I love my husband, I’m very thankful that he tries as hard as he does to understand but the fact will always be that he’ll never understand completely and honestly, I don’t want him to. He can relate some of his own experiences to mine but in order to fully understand he’d have to go through something equally as terrible as these last 3 years. I don’t want that.