Thursday is periodic brain MRI and Neurosurgery Clinic visit to Hopkins. I always get anxious prior to the appointment and this week is no different. I have not been sleeping - at all - I just cannot sleep. My husband gets up at five-thirty a.m. for work and this morning, when his alarm went off, I was still awake from the night before, eating cupcakes. Cupcakes help many things, I don't know if you knew that. Even neurosurgery appointments. But not bathing suit season, there's the catch-22.
I haven't felt much like writing lately, there is so much on my mind, I don't even know where to start. I figure if all I am going to do is complain about what is going on and the stress, then why bother? Nobody wants to read that.
I feel like I have been a bad friend lately; I am sorry about that. It's been hard for me, I WANT to be a good friend; truly, I do. But when I am wondering about whether I am going to find out that the neurological degeneration is terminal and I have no options, I have a hard time talking about that with people that do not understand. I have a hard time calling back and making plans. Not that my friends don't want to understand; I have an amazing group of friends -- caring, warm, listening -- and that pack of girls you always want to be in a restaurant, the loud, laughy ones. But it is hard when nobody else is in your position to talk about MRIs and brain scans and IV infiltration and long-term care applications and the best way to flush your kidneys after contrast dye (red wine and cupcakes). They are all babies and nannies and South Beach diet and career prospects. They are living life, not worrying about how long they have left.
I don't suppose anyone with a serious medical condition would choose to have it. I am not alone in that regard. But I think feeling alone is part of it.
16 comments:
Oh, honey, your reactions to your situation are so within the realm of the expected. I truly believe that your friends understand that. We all want to be with "the in-group" when we face our trials. http://terri-grace.blogspot.com/2009/12/in-group.html
*hugs*
Maybe the hospital has a support group? At least there you know they know what you are going through.
Sweet girl--I wish I could do something. You're right, of course...there are TONS of people who WANT to do WHATEVER you need or want...but when you can't even pinpoint that (or maybe you can--you want this crap to NOT be your life) it's hard for others--even with the best intent.
So know, at the very end of the day, when you are eating the cupcakes (I prefer Samoas) that you may not even know it but someone at that very second is lifting you up to God and praying for your heart to find peace and you not to feel lonely.
Much love to you!!!!!
You cross my mind often. Love, Jody
I had to pour myself (yet another) glass of wine before I read your post, having just glanced at the title. And it was right to do so. There is nothing like being lonely in a crowd of friends, which you no doubt have a ton of(including us cyber-friends). I have no clue, and I would be presumptuous to say I did, as to what you are feeling. We can't understand, nor should we presume to do so. We can, however, I think, lift a glass to you -- for courage, for diligence, for your baby boy, for your wonderful husband, and for the grace that you bring into our lives with your honesty. My glass is lifted to you. May you get through Thursday in the best way you can.
i've hesitated with my fingers hovering over my keyboard for a good two minutes wondering what i should say... what i CAN say that would help to alleviate even a little bit of the loneliness you are feeling. i realized there aren't perfect words and there's nothing i can say to make all your loneliness go away. but i do know i can speak from the heart. i don't know you well, but you can be sure that you are in my thoughts and my prayers and that you find comfort and peace during this time. and reach out - you never know who will be there to pick you up when you need it most. hang in there, crazy woman!
You write whatever you want to and I will read it without judgement. Lots of us will. If I lived close to you, I would listen to you talk as much as you want.
I don't have an illness and I am not facing what you are facing, but I do know something for sure about life. None of us know when it ends. My baby sister was driving home from work one night, chatting with her husband on the phone and she crossed the path of a semi truck. She was 27. None of us know how much time we have. And we all have that in common.
I hope you can sleep tonight, my friend. I will pray as I always do for complete healing and good health.
((Hugs))
I know the feeling of being alone. The pain of wanting so badly to talk about what you're feeling and to truly KNOW that they person you're talking to gets it; to KNOW that it's not empty words. I am supposed to have my scan and bloodwork tomorrow. I will be thinking of you and hoping for the best. Please let us know what the scans tell you!
Please know that although we don't really know each other, that I DO know what you're going through to an extent. I am always here to talk, as well.
Stay well, and have a glass of wine for me, please!
I just found your blog, and I'm so thankful that the first post I read of yours was this open, honest and kind post....
I have no words to explain how much my heart breaks to think of what you're going through, and anything I might say to cheer up seems shallow or hollow...
I hope for the best news possible after your MRI, but know that good news or bad news... your are absolutely not alone... nobody can understand everything that you are feeling, but we can certainly be open to let you rant and complain, to let you weep and grieve and to do so with you, and we can definitely be there to celebrate the precious moments with you as well...
And definitely think about pursuing some counseling as part of the process, it will create a safe place for you to discuss with your children and your spouse and yourself what is happening and how your feeling and how you will move forward!
I truly hope you find peace. I can't say I know what it's like. All I can say is that I'm here (we're all here) to help you find peace in any way we can help. Listening, talking, eating cupcakes, especially eating cupcakes.
Babe, I am so sorry. I want to be there, I want to laugh with you but to be honest I am feeling a little lost and lonely right now too. I have really been knocked for a loop and I am having trouble getting back to "normal" whatever that is - or was - seems like a distant past too me. I miss you though - I need some buttery nipples and I need a laugh from my friend, so let's out these lonely thoughts in the closest - for just an evening, and laugh. I think you are amazing.
My prayers are with you--that must be very difficult.
If you live in the hearts of others, you are never really alone. I do know how "alone" feels, though... I've been "alone" in a crowded room.
You, my dear, live in the hearts of those who come and read your blog. So in times of feeling alone, close your eyes and feel the huge blogosphere hug. It may not take the alone away, but it might make things a tiny bit better.
**BIG HUGS**
Jenny, your recent posts have left me speechless (yes, me, speechless!). I am so sorry for all you are going through and I know that nothing I say or do will ever minimize the stress you must be feeling. But please know you are not alone. I know it may feel that way (I felt that way too when I went through my scare, and when I go through painful biopsies every 12 weeks), but I give Noah and Amanda kisses as they sleep at night and I realize that everything I go through is worth it, because of them. When we become mommies, we find a strength we never knew existed. And for that, we forge through the tough stuff. The stuff that keeps us up at night, crying with our faces stuffed into pillows so we don't wake anyone. We put on smiles and suffer in silence for those beautiful faces that stare at us at the breakfast table and then turn to scowls when given fresh fruit instead of something containing high fructose corn syrup and every artifical color in the color spectrum. I guess my point is, and yes, there is a point somewhere in my rambling.... I know that YOU may feel isolated and lonely right now and in feeling that way, it's hard to even think that someone has hit that same low. But, I've been there. And my health scares pale in comparison to yours, but those same fears? I know them as well as I know my own stretch marks and jiggly parts. If you ever need to talk, cry, or just sit side by side in silence, please know that you can always call or email me. You have no idea how beautiful, uplifting and awe inspiring you are to others and that's what makes you all the more amazing. Keep your chin up, sweetie. We're all here cheering you on!!
You need to know something:
YOU are the most fun person to spend time with - but it's hard to be that person all the time.
YOU do NOT need to be that person all the time. I worry that you are thinking you need (and want, I know) to be 100% to be a do that to be a good friend.
YOU are a gift - I love being with you. Our talks are such a treasure. Especially when we are both honest about how we're feeling & talk it out...
All that is to say - your honest reactions & feelings should not be hidden within you - we love you & want to bear your burden for you if we can, as much as is possible.
You are a wonderful, sweet, incredible person that I am lucky to know.
So there. Bridge tomorrow?
Cupcakes make me feel better.
I know that you and I have never met, although maybe one day we could b/c I feel like we would be instant friends, but I feel so close to you when I read your blog. You are so honest and raw and it is normal to feel the way that you do. No one knows what something like this feels like until they experience it, if they ever do, so your friends probably are just having a hard time understanding everything and the seriousness of it.
I have a friend who has cancer as well as her husband and I find it hard to talk with her about anything deeper than how her kids are doing or how work is going. I feel like talking about other things with her will ease her mind and not make her think about cancer for 2 minutes, ya know.
xoxoxoxo
Blair
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