Strictly Speaking

Originally drafted March 2nd, 2014. Redrafted, edited, obliterated, and corrected no fewer than 68 times since. 

The side effect I’m about to share with you is something that may be temporary or permanent. We don’t know whether it is an effect of medication, disease progression, or both. Therefore it is important that we all (YOU) remain calm and not jump to conclusions on what this means for my future: short and long-term.

I’ve lost and continue to lose varying degrees of muscle coordination and strength on the left side of my body. So far it has affected my left leg, arm, hand, foot, fingers, and toes.
I lost functionality gradually over the past two months. And though it will be more melodramatic than I wish, I feel the need to document many current limitations:

Legs/Standing: I can no longer climb my interior stairs. (I’ve tried every possible way: one step at a time, both hands on the handrail, seated…) Standing is something to be done very deliberately and very carefully.

Arms: Dressing and undressing was already getting more frustrating, but I try to write off things to changes in daily routines. Then two weeks ago we went to a great concert. Seth and I thought I would be okay being near the handicapped seating; needing to constantly stand so other patrons could pass stressed my body too much, and before long, I was just slinging myself to and from the railing.

Before that, we were only one song in when I realized I couldn’t clap. Unbelievable. It was a real “aha!” moment, in a very bad way. I don’t go around looking for problems. It’s only after they’ve spit in my face day after day, week after week, that I finally realize that a pattern exists.

Hands/Fingers: These are, by far, the worst. Most days I cannot write. I cannot text. I cannot sign my name. I struggle to perform basic functions on my iPad and iPhone. I cannot stack food on my fork to eat my salad. I’m a bit more successful with a spoon/chili when I don’t drop the food before finding my mouth. It’s not simply lack of coordination, either. When I get close to touching a specific point, picking up a small object, or trying to grasp an item, my left-hand and digits shake uncontrollably.

What do I need now?
1. A chairlift so I can get to my shower!! Insurance won’t pay for one so I’m going to open the phone book and start shopping. I need to get one put in ASAP; used ones seem to start around $2,000, so I’ll be in Love Fountain to both bathe and collect funds during upcoming, warmer days. That’s multipurpose!

2. To quit bitching and keep typing like a newbie. A better voice-processor for iPhone 5 doesn’t seem to exist, so I’m trying to just type faster with my right (and only one) thumb. If there was a better (even paid option) for iPhone5 voice processing, I would gladly try it. Please let me know if you have a suggestion by replying to this post!

Either way, with this new disability and painful inter-cranial pressure changes (more on that in another two weeks?), life seems to have become only one struggle/complaint after another. Many things make me very sad or embarrassed. I struggle to sleep more than an hour or two at a time during the day or night, drugs or not. I don’t want to be seen as the person who is sad, tired, and unhappy. I’m working with my doctors to find the right meds so I can feel happy and enjoy the time I’m trying so hard to preserve!

I do just want to thank again everyone who has helped with my fundraiser and Frog List since the beginning. My happiest times are spent with Seth, my mom, and my animals. It’s just wonderful since we moved my mom and the animals to be close to me! That really was and is the most important thing for me, to have my loved ones as close as possible.

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8 responses to “Strictly Speaking

  • Kathleen Hoffman, PhD

    I’m so glad that your mom and animals are near to you now. That is a blessing! Love to you, your mom and Seth. Kathleen

  • Craig

    I can imagine the challenges you are facing and wish I could make it better. I am glad you have people near who can help you cope and help you manage better. Since I expect a chair lift in my future, too, I’ll be eager to hear your experience with that.

    Have you considered Dragon software for either a personal computer application or the iPhone/iPad app version (or both)? It might be useful – you talk and it types for you. It will make mistakes, but even with that it might save you time and effort.
    http://www.nuance.com/for-individuals/index.htm

    Best hopes,

    Craig
    in PA

  • Claire Philpott

    Jessica I am sorry to hear of your new challenges♥Is this from brain mets or WBR?
    I hope you find and get a good deal on the chair lift♥ Prayers and hugs to you and your family. Claire

  • Colleen

    I am so sorry to hear about this recent challenge. I am glad you are surrounded by the people and animals you love. I know how difficult and frustrating it is to not be able to do the little things you once could. I had a tumor on my spine that made it progressively difficult to move my right side from the middle of my chest down. By the time they figured out what was wrong I could barly walk. I just wanted to let you know that I am thinking of you and I am glad to hear from you( I was worried) I wish the news could be better. XOXO

  • Colleen

    http://www.rampnow.com/more-solutions/safe-bathing.html have you seen these bath tub lifts. I don’t know if this might help.

  • kimmywink

    Love you heaps and heaps!

  • Sjoukje

    Jessica, Im so sorry this is happening. Keeping fingers and paws crossed for you that this is only temporary! Im so glad and happy for you that you have your mom, Seth and all those wonderful animal friends nearby.

    Sending you lots of love and hugs fromt he Netherlands And the buns send lots of gentle nosebonks too
    xxxxxx

  • Sabina

    Dear Jessica. I’m glad to hear from you also, although I’m sorry you have experienced a decline in your physical abilities. It is my most fervent wish that your current challenges can be made easier somehow. All I can offer you right now, my sweet, is my affection, admiration and prayers.

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