Last night, I woke up at 2am and felt panicked about posting my blog on facebook. What am I doing? Why am I talking about this private family matter in a public place? Is this a self-serving exercise? I immediately went to the computer and deleted the post on facebook.
I've been feeling an urgent need to write about my mom. In many ways, this all seems to be happening so quickly. In other ways, I recognize that (before the official diagnosis) the many clues and signs had been there for years.
So this morning I reached out to a trusted childhood friend. She replied, "reaching out to make contact in any way is so vital and mentally healthy and good for you and good for your friends and good for anyone else going through anything similar. Please give that some weight as you choose how to proceed."
Yes... weight. Oof - that word has so many meanings. I am feeling a LOT of weight these days. The weight of understanding what is happening to my mom. The weight of feeling guilt about not being able to do more. The weight of wanting to be more helpful. The weight of living far away. The weight of my body (!) as I eat and drink my way through stress. The weight of loss.
So, I have considered. And I believe she (my trusted childhood friend - yes KDW - you!) had words of wisdom. Connection is vital for me. And this urgent need to write and talk about my mom is something I will honor and it is something I will share.
Although my mom's condition is private in many ways, it is public no matter how much we would wish it not to be. Something has been "wrong" with my mom for several years. People have noticed. People have wondered. People have guessed. Most have not asked.
My mom has no control over this. There is nothing she did that brought this on. There is nothing she can do - or that any of us can do - to change this.
But we can honor who she is and who she was.
I joined an online support group today for PCA (Posterior Cortical Atrophy). Within minutes, I read a post about a person with PCA who was only wanting weird foods like potato chips and soda. My mom, always a very healthy eater, has suddenly developed an incredible sweet tooth. Cookies after breakfast! Frozen yogurt every day after lunch. A connection! I also discovered that other senses are affected (besides vision). I had been wondering why about my mom's hearing - which seemed to be worse despite wearing hearing aids. Connection. Community. Shared knowledge.
Okay - so that's my "brief" (ha!) note about my struggle with private and public. I am still not completely sure how this blog works. I am not sure how folks will find it and how to properly share it. If you would like to receive new posts on the blog, please send me your email and I will put you on a list to be informed of when there is a new post. If you have any suggestions or ideas for how I should proceed with this blog, please let me know.
In the meantime, I will continue to write because I just can't seem to stop right now. This is my way of holding on. Thanks for being a part of it.
I've been feeling an urgent need to write about my mom. In many ways, this all seems to be happening so quickly. In other ways, I recognize that (before the official diagnosis) the many clues and signs had been there for years.
So this morning I reached out to a trusted childhood friend. She replied, "reaching out to make contact in any way is so vital and mentally healthy and good for you and good for your friends and good for anyone else going through anything similar. Please give that some weight as you choose how to proceed."
Yes... weight. Oof - that word has so many meanings. I am feeling a LOT of weight these days. The weight of understanding what is happening to my mom. The weight of feeling guilt about not being able to do more. The weight of wanting to be more helpful. The weight of living far away. The weight of my body (!) as I eat and drink my way through stress. The weight of loss.So, I have considered. And I believe she (my trusted childhood friend - yes KDW - you!) had words of wisdom. Connection is vital for me. And this urgent need to write and talk about my mom is something I will honor and it is something I will share.
Although my mom's condition is private in many ways, it is public no matter how much we would wish it not to be. Something has been "wrong" with my mom for several years. People have noticed. People have wondered. People have guessed. Most have not asked.
My mom has no control over this. There is nothing she did that brought this on. There is nothing she can do - or that any of us can do - to change this.
But we can honor who she is and who she was.
I joined an online support group today for PCA (Posterior Cortical Atrophy). Within minutes, I read a post about a person with PCA who was only wanting weird foods like potato chips and soda. My mom, always a very healthy eater, has suddenly developed an incredible sweet tooth. Cookies after breakfast! Frozen yogurt every day after lunch. A connection! I also discovered that other senses are affected (besides vision). I had been wondering why about my mom's hearing - which seemed to be worse despite wearing hearing aids. Connection. Community. Shared knowledge.
Okay - so that's my "brief" (ha!) note about my struggle with private and public. I am still not completely sure how this blog works. I am not sure how folks will find it and how to properly share it. If you would like to receive new posts on the blog, please send me your email and I will put you on a list to be informed of when there is a new post. If you have any suggestions or ideas for how I should proceed with this blog, please let me know.
In the meantime, I will continue to write because I just can't seem to stop right now. This is my way of holding on. Thanks for being a part of it.
ReplyDeleteI love you <3
Sing your song, sister!
kdw
Ha! I'm in! :)
ReplyDeleteI love the dichotomy between public and private. This struggle is the thread that seems to weave its way through the fabric of our entire lives. Getting the balance right is a constant hit or miss most of the time for most of us with most things. Still, we try. You are honoring your mom, yourself, the struggle, the tapestry by sharing this. Thank you.
ReplyDelete