Sunday, April 2, 2017

Truely Home

We arrived home a few days ago, and damn if I didn't sorely underestimate the transition!

The area where they resected the brain tumor damaged my sense of space, and how I perceive my body in my environment. That means that my right side of my body feels grossly, over or under estimated, depending on the moment. 

It's wild, but I see half of my body like a funhouse mirror, eerily distorted. Most of the time I pretend it isn't happening, because it's preeeetty weird. Fortunately for me, it was pretty easy to remain unaware while recovering, because although my eyesight is fine, the perception complication allowed me rarely notice my right side. While in Malibu, my environment was brand new, so I had no reference points to work with. 

It works a little like this, I don't see/perceive/feel the right side of my body, except for the rare when times I'm stimulated by a shock (walking into something), being startled (new stimuli usually during a perceived threat), or if I'm focusing intently (which somehow demands an act of coordination).

Moving home forced me to take stock of my reality, and with that, the oddities in my brain.

Traveling wasn't as bad as it could have been, as far as pain, movement, or altitude, but surprisingly, taking stock our home was rough. I can only liken it to what waking up from a coma could feel like. I didn't recognize our things, or where our things went. The sights, the sounds, the smells, sensations, were all foreign. I am relearning my own home. From the hight of our bed, to analyzing where I might find my closet, how to flush the toilet, turn on water, open a window, find a cup, or find a blanket. With all that necessary exploration comes a lot of thinking/analyzation and that brings a whole new level of exhaustion and neural pain. It's exciting to push, and grow, but it's damn exhausting too. I love having more challenges, to continue to feel alive, that's for sure, but I didn't anticipate this level remapping,

I'm taking things slowly, not taking guests per Dan's request. It continues to be a challenge to adjust to each step of our life and all the nuances. It feels like I'm living in my own choose your adventure book, blended with a sci-movie, and it's pretty far outside my own capacity to comprehend. I'm fascinated with what's happening in my brain, and body. I'm watching my writing rapidly eclipse my verbal capacity, which is exciting because it shows clear progress, but also hints that I might need to start considering some speech, cognitive, physical and occupational therapy so that I don't leave other areas of my brain behind.

We are down to pills every four hours, and the dosing is less and less. I'm shocked by the amount of pain this requires to endure, then I'm reminded by what my brain is trying process, and relearn and heal. Then it somehow makes sense. It's all part of the process.  

Life requires so much to process that I'm unable to communicate the same way that I can post, so thank you for being patient with me. I don't email, or text, or call, because it's still too much. In fact, this has taken three days for me to complete, but it's worth it. To express myself is such a powerful gift! 

I'm choosing to remain calm, to focus on what I can control, which is to be kind to myself, and to take Dan's lead. Resting, and patience, are paramount, and feel sloth-like and boring, but realistically I am aware that I have some major limitations. I believe these limitations won't effect me forever, so it's not that big of a deal, but I also don't want to go backward by overdoing things. My bigger drive is not making Dan's life harder. Every choice has a consequence, and he is the one having to pick up the pieces. Sometimes quite literally. 

Thank you for continuing to travel this journey with me! Your continued support, your love, your encouragement is absolutely integral. You guys lift me up, make me feel strong, and capable. You know just how to encourage me, make me laugh, and say just the right the things when I need them the most. I appreciate you all very, very much!


  1. Welcome Home Jess and Dan! Your writing is beautiful and I'm sure that you will continue to progress and all will eventually return to normal! I went through all the sensations and re-learning with my right side after my stroke so I know what you are dealing with! Continue to rest and listen to your darling Husband! Much Love to You, "So Cal" Patti

  2. Welcome Back to the rainy with sunbreaks NW and home :-) You are doing a great job with your blog and the rest will follow as you progress. Good for your sweet protector and wise !! Dan with the no visitors for now rule. Focus on yourselves :-)
    Prayers and thoughts always for you both and your families

  3. Jessica, I cannot imagine what you are going through and this new lens you view yourself and your environment through. I know we all deeply appreciate your efforts to stay connected and know that we all wake up sending you love, hugs and healing and look forward to the day we can hug you in person. Love, Nancy (walk group)

  4. It always amazes me that you can explain your feelings and experiences so, so well! Get your strength from those who are holding you up from the outside -- we all support and love you. You are amazing - and so is Dan.

  5. hi Jessica,
    I think you are right where you are suppose to be considering what you just went through. I'm happy to read that you know that patience with your limitations are so important riight now. You are in the thoughts and prayers of so people right now including myself and I know that in time you will be fully back in the beautiful life you and Dan have created .
    Big hugs 🤗 to you, xoxoxox

  6. Been following your blog for about a year and a half and just subscribed. So glad I did. Just keep being the beautiful people I've come to know through the blog- this requires no special effort- you just 'are.' Prayers and (gentle!) hugs to both of you! 💚

  7. It's still so early, Jess. You still have more brain healing and swelling reduction to do. And with all that in mind, you are doing marvelously. You inspire us to look at our own "normal" lives and be thankful that we can find our stuff at home and not bump into things, that we have such blessings. We keep sending you Love, and Reiki and virtual hugs. xxxooo

  8. Jess ~ you are EXTRAORIDNARY and your light shines on all of us. Much Love! ~Elle

  9. So glad to hear that you are doing so well. You are so strong, so intelligent and so brave. I love reading your postings. Keep up the good work. And Dan too, for taking such good care of you. You are Wonder Woman!

    Jim Moscicke and family
    Pewaukee Wisconsin

  10. Hi, I found your blog when looking for information about Duke's polio trial for a loved one last year. But then I started reading your other posts and was hooked. What amazed me was that you posted the info. about Duke for others to find even though it didn't apply to you. Others like me who were/are stumbling around in the dark, looking for information. And now you've illuminated what it is to heal from surgery. Thank you for this blog, and shining a light for others. Wishing you time and space to fully heal.

  11. Welcome home, my love. As per usual, your survey of the current conditions are spot on. One minute, one hour, one day at a time. You are a warrior, one like I've never known! So glad you have Dan reminding you and as always, advocating for you! Sending healing energy and thoughts every single day to you.

    Big massive love,
    John and Steph xoxo

  12. Sending you light and love as you heal ❤❤ -Lone Wolf

  13. Thinking of you and hoping you are settling in nicely at home to continue your healing! Thank you for your always inspirational posts!! Love and light to you �� Cate

  14. We think of you often & prayers always are sent your way. We wish you, Dan & your families a Happy Blessed Easter. We hope healing and recovery has been better with each day that goes by.

  15. Hi Jess,

    Glad to hear you're doing well and continuing to improve. Think of you often. Thank you for putting yourself out there and sharing your journey with us. You are inspirational and we appreciate it. All the best to both of you.


  16. Dear Jessica.
    Wish you recover soon. Wish you all the best

  17. Thank you for this blog, and shining a light for others. I love reading your postings. Keep up the good work :)


    From Viet Nam


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