You know, I lost a lot of things with the onset of ADEM: brain power, energy, job, ability to work, etc, but the thing I miss most is a friend lost. She was my boss, and I was a college teacher. I believe the ADEM was starting even up to a year before it hit with all its mighty force and put me in the hospital. (We know it was working at least 5 months before because of mystery pain in my hand that eventually was one of the extreme symptoms...)
Anyway, apparently I had stopped planning my classes (I'd been teaching most of them for years and had them down pat), and other things. I was speaking my mind with extreme force (something I NEVER did before - didn't even cuss! They used to joke about that...) And when I ended up in the hospital, I left her in a lurch. No subs, no lesson plans, nothing. And I had no ability to communicate for months. Left her scrambling.
And she hasn't spoken to me since. I've reached out twice (I think) with letters trying to explain, but to no avail.
I heard she got married yesterday. I'm so happy for her. And I miss her terribly.
Really, there's no one but you guys that might understand.
I am really sorry to hear about your friend and I totally understand. My son was working on some innovative i phone apps in his spare time and building micro controllers. I know he said everything was done and was waiting on a signed contract. Till now almost a year later he has no memory of what he was working on or that he knew how to build micro controllers. It is really sad that your friend has not been talking to you. I do not mean to be judgmental but you cannot continually punish yourself for something you had no control over. If she cannot stand by you in your darkest hour then perhaps she did not value your friendship as much as you do. It is hard and I am sure it hurts but perhaps it is time to reevaluate the friendship. I feel she should have been there for you.I was a teacher too and I know after teaching the same lessons over and over it becomes second nature. I see the devastating effects ADEM and the trauma and frustration it causes and unfortunately your friend will not understand unless she experiences this herself. I have had people around me that suffered from cancer and heart disease and that have died but the most devastating is a brain injury. My son is alive but I miss him I miss those conversations we had about normal everyday things and I hurt more for what he is going through, losing his independence, his work at the moment, I know it will get better in time but the fact is that it is a very painful journey for him and I am sure it was hard for you too. Focus on the friendships that you have the individuals that support you. If you need to mourn the loss of the relationship then do so so that you can move on or if she does come around one day then you can pursue the relationship if you so desire. If you decide to let the friendship go then forgive her and release her into the universe with love. I remember the words of my professor he always said "There but for the grace of God go I" we can never truly understand what others are going through unless we go through it ourselves. I do feel your pain as I feel my son's pain. He misses his friends too one of them came by the hospital initially when they made the wrong diagnosis and doctors thought he may die but has since not come to visit him and he gets so happy when his other friends come to visit.I do not talk to him about this friend I focus on the ones that do care. Being sad is not good for your health sometimes we just need to "Let it be"
I have these unanswered questions about my son's Adem too. For about a year before the attack he complained about getting muscles spasms/twitches. His behavior was erratic was upset for no reason, he became forgetful at times his behavior was very out of character. His manager at work claimed that he kept pretty much to himself and liked to work from home instead of going into the office and he normally liked to go into the office to socialize with co-workers as he complained that it was too lonely at home. He went to numerous neurologist but they told him he was just stressed and needed to exercise no one suggested an MRI. He was admitted to hospital in April, only in November did the lesions stopped growing (6 months) Not sure if anyone else had a similar experience. All the best to you. Sending you a virtual hug.
This song has so much meaning for me. It makes me think of my son. It is very appropriate for family's that have loved ones who suffer from ADEM. "Stand by you - Rachel Platten." "Hands, put your empty hands in mine And scars, show me all the scars you hide And hey, if your wings are broken Please take mine so yours can open, too Cause I'm gonna stand by you Oh, tears make kaleidoscopes in your eyes And hurt, I know you're hurting, but so am I And, love, if your wings are broken Borrow mine 'til yours can open, too 'Cause I'm gonna stand by you Even if we're breaking down, we can find a way to break through Even if we can't find heaven, I'll walk through Hell with you Love, you're not alone, 'cause I'm gonna stand by you Even if we can't find heaven, I'm gonna stand by you Even if we can't find heaven, I'll walk through Hell with you Love, you're not alone, 'cause I'm gonna stand by you"
Hi Sarah,
Thank you for sharing your story…As mother I truly understand your feelings.
My daughter is still in hospital going through treatment and not knowing when will she awake…I spend most of the time with her In hospital, hearing about your son worries me .I do not know what will happen to.her when she wake up…however.important thing is that she can recover…
I wish you son well …hope to.keep in touch with you…