You know how in the opening scene of Forrest Gump, there is that white feather that floats over town, pausing and then picking up again on a wind (the one that eventually lands on Forrest’s shoe that he tucks in his book)? Inexplicably, I feel like that lately.
I have occasionally felt this lightness in hard times with Sam over the past two years. I feel that when things get so hard, all of my mass and foundation and roots disintegrate, and all that’s left of me is a feather or piece of tissue paper where one gust of wind could come and wisp me away. Not even a big gust, just any wind. I feel like if someone were to look just a little more deeply into my eyes or hold onto a hug a few seconds too long, it could somehow make me disappear. As I type, I can tell this makes zero sense. Luckily, I now have the opening score of Forrest Gump stuck in my head, so I hope that is a benefit of this analogy for you as well. Anyway. The past two weeks have been very hard. Scratch anytime I’ve said that before, because this is the real deal. In between hoisting Sam from the bed to the wheelchair to the couch (thank god he’s small) to the 10,000 other tasks related to caretaking that are trying, tedious, and kinda gross, you’d think I’d pick a metaphor for myself more like a bull or Wonder Woman or something (super modest, I know). But no, if I’m being honest, it’s a feather. How disappointing. I don’t think the stuff that keeps me busy is what’s hard. Tiring yes, but I can deal with tiring. Doing laundry for the 800th time in a week because of narcotics-induced incontinence isn’t hard. Making another apple pie at the end of a long, full day because it’s the only thing Sam eats reliably (YOLO) isn’t hard. Putting socks on his feet isn’t hard. And so on. Wondering if Sam will ever re-emerge from this sleepy narcotics-induced haze he’s in from his accident is hard. I don’t even care if we hike or bike again like we wanted to when we came up here. All I care about is that we can lay in bed under the covers and talk together. Maybe even laugh at something funny, just a little teeny bit. Wondering if those things will ever happen again is freaking HARD. Worse, when Sam accidentally knocks over the contents of his urinal onto the floor of our room again and I have to clean it up in the middle of the night: cleaning it up isn’t hard, but the fact that my stressed reaction to having to clean it up likely correlates to his will to live is HARD. The fact that if he perceives that taking care of him seems too hard on me, then maybe he will think life’s no longer worth living. That shit is hard. Maybe that disappearing feeling I mentioned is the outcome of equally genuinely wanting and desperately not wanting to do something with every fiber of your being at the same time. But I think we’re making it work. Sam’s getting by, and we are taking things day by day. We’re tweaking his pain meds, trying to find the balance between in pain and him being in an overly medicated, but pain-free stupor. Some hours of the day are alright, a few minutes are enjoyable, and the rest are pretty tough. Sometimes I feel like I’m mostly going through the motions. And on the hardest days, I’m floating through them in a wind while looking for meaning, connection, and learning to be OK with trying again tomorrow. At least we still have each other, even if mostly in presence alone. And when I don’t really have Sam due to the haze of narcotics, at least we have apple pie. *Note: I wrote this a few days ago, but didn't want to publish it because it is so hard to admit to struggling at something I'm technically capable of doing, especially when being given all the support in the world to do it. This week reached a breaking point when I threw my back out and realized that doing all of the physical tasks to take care of Sam were actually taking away from my ability to be emotionally present for him, which is way more important. Somehow, simultaneously, the scheduling and insurance approvals for home care were confirmed, and now all of a sudden we have a team consisting of two RNs, a social worker, a physical therapist, a non-medical home aid, an occupational therapist, and two probate lawyers coming to our house and tackling the many tasks I was trying to tackle alone. (Or tackle when it's not feasible or realistic to call someone over to help.) Over the past 24 hours they each looked at me and said some version of, "be the wife." It was the most freeing thing I've ever heard. They also recently began a new pain regimen for Sam that (fingers crossed) seems to have things looking up after two weeks of misery. ### *Note: I wrote this a few days ago, but didn't want to publish it because it is so hard to admit to struggling at something I'm technically capable of doing, especially when being given all the support in the world to do it. This week reached a breaking point when I threw my back out and realized that doing all of the physical tasks to take care of Sam were actually taking away from my ability to be emotionally present for him, which is way more important. Somehow, simultaneously, the scheduling and insurance approvals for home care were confirmed, and now all of a sudden we have a team consisting of two RNs, a social worker, a physical therapist, a non-medical home aid, an occupational therapist, and two probate lawyers coming to our house and tackling the many tasks I was trying to tackle alone. (Or tackle when it's not feasible or realistic to call someone over to help.) Over the past 24 hours they each looked at me and said some version of, "be the wife." It was the most freeing thing I've ever heard. They also recently began a new pain regimen for Sam that (fingers crossed) seems to have things looking up after two weeks of misery.
Bev Mangerson
4/26/2017 09:49:08 pm
What a wonderful love you have for each other. Your ability to continue to be so strong is just amazing. I'm so sorry for all you are both going through. Sending love and prayers to you both.
Roseanne Curtis
4/27/2017 02:57:29 am
I'm praying for you and sending hugs to you both and a gentle breeze. 4/27/2017 04:08:48 am
How very beautifully you try and understand your feelings and so lovingly and generously share them. I'm so very grateful. I think of you both so much, always sending love and prayers for ease and comfort for you both. Your journey together is profoundly filled with love and gentleness and simplicity... I'm glad you're getting the outside support so you can be a wife. And bake those apple pies. xoxoxo
Maggie Lorenz
4/27/2017 04:58:21 am
I know exactly the scene and I could see exactly what you are describing and my memory of that scene, from Forrest Gump, is that the feather is beauty. You are beautiful in so many ways. I haven't even see you in real life but I KNOW you are beautiful. And with that beauty comes strength, love, and kindness. Be the feather. Own the feather. Float or get caught up in a book. Lots of love for you and Sammy Boy.
Alex Pope
4/27/2017 05:32:10 am
Crying. So beautiful Jenny. You're truly the strongest person I know - never could have imagined a cool 20+ years ago when we were kids playing pretend games that you'd be going through something like this now with the person you love. Life takes unimaginable turns and you're killing it. Sending my love and support to you and Sam.
marilyn tucker
4/27/2017 06:15:47 am
Jenny - you put me to shame for feeling achy after putting down bags of mulch on the flower gardens - you are finally getting some help - thank goodness - that will give you and Sam the time to sit back and enjoy each other - I take from you blog that you did get back to Alaska - your place of peace - praying for you and for Sam
Margaret Johnson
4/27/2017 07:10:26 am
Thank you for being so honest. I am someone you do not know who has come to know you through a friend. The ripple effect of your willingness to share your love and your pain extends our very far. Know that I too am praying for you and all of Sam's family.
Kelly Rauwerdink
4/27/2017 10:10:47 am
You are a fucking amazing human being. Thank you for sharing all of this.
Sally H. Mode
4/27/2017 12:03:16 pm
this.is.love.
Hillary Feder
4/27/2017 07:02:22 pm
Jenny & Sam,
Mary Babcock
4/28/2017 09:08:05 am
So beautifully written Jenny. What a tribute for your love for Sam and your value of your time together. I pray for peace, rest and those treasured minutes of good times together.
Melanie Tulowitzky
4/28/2017 06:45:02 pm
Ps 91:4 He will cover you with his feathers. He will shelter you with his wings. His faithful promises are your armor and protection.
Melissa Malott
5/1/2017 06:21:36 pm
Thinking of you both all the time.
Tracy Vaughan
5/2/2017 05:38:05 pm
Jenny, we don't know each other, but I'm a friend of Kate's. I have been reading your and Sam's blogs for quite some time now and thinking of you both often. I just want you to know that my heart goes out to you and Sam and want you to know that people you don't even know are out here, wishing so hard for comfort for you both; we think you are both beautiful, strong, inspiring, and your love for each other has influenced this world in more ways than you know. Sending thoughts of peace and love into the universe for you.
Scott Fiocchi
5/11/2017 06:26:03 am
Hey, Jenny, Comments are closed.
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