My nightmare. You might be surprised! It had nothing to do with Adam, his accident, the bumps in his recovery, the fear of losing him. Nope. I woke up in a terribly dark place this morning. My night was filled with images of a long-time friend. We worked together for years, talked often in that heart-to-heart way, socialized. Then the accident. Everything changed and our relationship changed. She watched as I attempted to stabilize my life with Adam. We met infrequently and she once told me that she could only spend time with me when she was feeling okay (body, mind, spirit kind of okay). I bought that story at the time. And, now to the nightmare. I was back there, in our old workplace, and I saw her. I really enjoyed our friendship – we could talk about everything. This time I could feel a huge smile spreading over my face as I approached her. She couldn’t see me. She looked to the left, to the right, and she didn’t see me OR she was ignoring me, acting like she no longer recognized me or couldn’t remember me. I stood there and watched her greet and hug other people who were in the same space. It was so painful. Her partner, another good friend of mine, found me and just sat next to me. We didn’t need words. He was always like that – hanging out, sharing the same space. I miss him too.
My losses – always triggered by the holidays. I can’t get away from it, no matter how I challenge myself, my thinking, my choices. My life is so different now and much of the change is related to what happened to my relationships when I willingly and passionately took on the role of extreme caregiver to our son Adam. I lost most of my family and friends. I have heard people say, “well, the phone goes both ways.” Well, I couldn’t – pure and simple. I accept that now. I was not capable of maintaining my old life – work, friends, family. All of my energy, my life force, was directed at caring for Adam and keeping myself together. I do wonder how folks could not see this, not understand this. I needed them to reach out, to come to me, to accept that the playing fields were no longer equal. Obviously they would only do this if the relationship had been important to them. Since it didn’t happen I am left wondering if folks just don’t care enough. It was too easy to let go. Yes, I know all of the excuses: Didn’t know what to do. Didn’t know what to say. Couldn’t handle the intensity and sadness. Had their own issues. I’m not saying that it would have been easy. I am a different person now with new priorities and needs. It would have been necessary to get to know my new reality and figure out a way to be present in that space and time. Very few tried. . .
Now, this sounds like it’s all about me. Well, I re-visit the nightmare and realize that this is my son’s reality. Few people see him, know him, love him. He is invisible. It’s heart-breaking. But, wait a minute. I am heart-broken; Adam is not. I live with the awareness of separation, of loss. He lives in the moment, laughs in the moment, doesn’t worry about the past or the future. I have so much to learn from him.
This makes me weep today. For you, for your family, for us. I know this feeling. I think of the Buddhist metta and send it to you. May you be well. May you be free of pain. May you be free of suffering.
ReplyDeleteAn absolutely wonderfully insightful post, Sharon! I take this as an inspiration and a lesson in life. Indeed, we have lots to learn from Adam...and from his parents! Thanks once again for broadening my understanding and perspective. Cheers!
ReplyDeleteOh, Sharon! I cried too when I read this. I sometimes think of my "other life" with sadness. I have a recurring dream about living again in my big, two-story house with my doctor-husband and a neighborhood full of friends. In the dream, I know I shouldn't be there. I don't live there anymore and any second the new owners will find out I'm there.
ReplyDeleteThat life is gone. When Daniel was born and the profound nature of his needs became clear, I lost friends. I lost that life when my husband and I divorced. I live a very simple type of life now. No one from that world followed me here.
That part is about me. As it pertains to Daniel, I sometimes think of the friends in that neighborhood that he would have had if we'd stayed. If he'd been "typical". I still long for more people to see him and to be a part of his life.
Hugs to you, dear Sharon. I wish I could come over and share a cup of coffee with you and we could be friends in person.
I have always maintained that we are pioneers -no comfort,I know. But think about the pioneers who settled the territories now called north America, the hardships, the endless trials, the only reward being the fact that you were still alive! How is today any different? Because of transport, commerce? Gadgets, communication? People are still the same, despite history, so we traverse almost entirely alone.
ReplyDeleteI don't know how well you and Phil communicate or struggle to coordinate the shared aspects of your vision to sustain Adam, the family unit, but I do envy you all the same.
Your paradigm shift after the accident is not an inclusive one it is an exclusive one, unfortunately.
My second partner was full of understanding and empathy, to the point of being "paralyzed by the pain" of my existence, or "afraid of your intensity". So full of caring yet unable to lift a finger.
But you and I know that philosophy and all the goodness in the heart are very nice indeed but quite useless in this oh so real, life and death struggle.
I always say, the truly great heart acts without concern with the consequences. How do they call that, "the foolish heart"? That's what we apparently need, foolish hearts to prevail.
Oh Sharon, I feel your pain. I wish I lived closer to give you a big hug right now! I promise we will be down soon to do just that.
ReplyDeleteP.S Adam and Phil too;)
Sharon,
ReplyDeleteI hate that you have nightmares, but I love how you see Adam and how living in the present is a gift. I think having a greater understanding of the true value of life is better than anything those who have vanished from our lives could ever offer. You, Phil, , Adam & Aimee are in my thoughts and prayers!
I, too, live in your world - excluded from the normal existence that everyone else takes for granted. I sometimes have cravings for that to come back but when I observe it it often seems quite shallow and the attraction isn't that great. My children have given me a much richer taste for the true essence of life. As you mentioned - they are not affected by society's lack of interest, so we need to stop being hung up on it. It's nice to share comments with others who have a common sense of being. It can be lonely at times - but you guys all get it so the sense of isolation is lifted.
ReplyDeleteI am humbled and touched by the power of these comments. My deepest gratitude to Elizabeth, Carolyn,Gavin, Eric, Lisa, Sue, and Marcelle. I fear saying some of these things out loud but when my thoughts and feelings are acknowledged, validated and shared - it's absolutely worth it. Thank you,
ReplyDeleteMy Dearest Sharon,
ReplyDeleteSorry, my wireless keyboard has died, and well I am sat at the luxury of my desktop :)
Firstly I would just like to send you all one of my special hugest hugs. All I can say is that it's this "ignoring person's" loss... totally.
I love, and am honoured and privileged to have you, Phil, Adam and Aimee in my life, so I say it's "her loss".
I really have to say I hate their cop out... “well, the phone goes both ways.” Well it doesn't actually! WTF should it be a pingpong phone tag? no when someone is going through a major UNPLANNED life change.
Like seriously you're and our blog followers have all had something unforseen happen, hence we're blogging... and then you rather than getting to grips, coming to terms, coping... meant to go, I had better go and phone these 30 people who all will be awkward on the phone... NO!
I've said it before, we live in both worlds, having extreme sports older two and our gorgeous Oatie (who has made us a much less selfish family than we would have been lol!)
By living in both worlds so to speak, I so know what you mean, one of my "friends" words of speaking of the handicap rather them being dead rather than living in a mum group chat right in front of me (and realising what she said because another mum was nudging her) still makes you question genuine friendship....
I think for me, it's the fact pure and simple, that I put my trust/love/honesty into a friendship and when a lot of these people act as that woman did, you realise that they just didn't and it wasn't genuine at all from their part.
Which comes back to questioning humanity... and you go around looking for good in people and regularly for me end up a tad disappointed... and I wonder how these people can even look at themselves in a Mirror!
Your words resonate with me too, and I also know the experience mhk mentions----having a little taste of hanging with folks from my past, from before the birth of my daughter, folks from the world I was a part of, and feeling there's a reality they don't seem able to know about, one that is always more intense, demanding, extreme. I assume soldiers who have seen war must feel aspects of that when they return to civilian society.
ReplyDeleteSharon - I can't tell You how much I needed to hear this today. I am suffering through a separation that I finally decided was necessary. This separation is from my extended family - a family that I have been extremely close with And surrounded by since the day I was born. I have come to the realization that they just don't get it. I had a close cousin tell me that I chose to shelter my daughter instead of bringing her to family gatherings when in reality I couldn't bring her because of the nature of her disabilities (a girl in a wheelchair doesn't quite fit in at Chuck E. Cheese) I was called psychotic and told that I should get on meds because I am offended and hurt that nobody ever took the time to get to know my daughter.
ReplyDeleteIt's a lonely place to be, for myself and for my daughter. She's a happy girl, very loved by mom, dad & grandparents but I wish she could have someone other than me put in a little effort towards developing a special bond with her.
I am a fan of Phil's & we have swapped ideas & comments many times in recent months. Congrats on the wedding; your children are beautiful!