I feel so smart! I had dropped my keyboard, but I wasn’t strong enough to pick it up with my grabber, so, after several attempts, I leaned my keyboard the long way against my tire. If u saw my posts on Facebook or Instagram, u know that on April 16) I got a new wheelchair that can stand. But in order to stand, I wear a chest strap that prevents me from leaning forward. But my backrest moves, so I leaned that forward, & I was able to pick up my own keyboard! 🙂
About my new wheelchair: Like 7 years ago, I looked into a standing wheelchair, but my old home used an elevator, & it was a bit too big. However, it was a blessing in disguise. Not only has the technology advanced & made it safer & capable of doing more, but additionally, I was not ready for it! My core was way too weak, & it would have made the chair uncomfortable—so a big thanks to horse therapy, again!
Now, I am like a transformer, & if I have my knee brace & chest strap on, I can “transform” from a “sitting car”, into a “robot”! & when I do, I turn into a “robot” that is much taller than my “human form”! I will try to post a video!)
The last few weeks have been crazy trying to NOT sit! (After 14 years of sitting, standing is a bit more appealing!) In the last 14 years, I have created a world for myself where I sit, so at 1st, I was very limited to what I could do standing…But if I’ve learned anything in 14 years, chances are high that I will need to make a sacrifice in order to gain something greater. So I have spent more time doing other things. Talking I can do sitting or standing, so I’ve done a lot of standing & having conversations—& it has actually become a challenge to sit & talk: (Maybe it is a coincidence, but I think my diaphragm is less “squished”, so I get more air…)
This means that when I stand, I lose my belly (that I support my iPad on), & I lose my lap (which means I can’t use my iPad pillow, or carry/transport stuff, & I don’t think our dog, Cooper, likes my chair too much, also, since his lap is gone: he’s always staring at me, like he’s saying, “When’s it my turn?”) , so at first, I made a make-shift “tray” for my iPad, but it was hard to type, so I spent more time deleting. I now have a tray (which is AWESOME because now I can do anything I want to do while standing—like typing this post!), though it is requiring a few adjustments from my OCD-world. The biggest adjustment is by my dear husband, who has a myriad of straps & equipment to remove from me every time I need to potty! 🙂
My kids are adjusting, too…At 1st, it freaked them out to come home & find me standing in the room, or to walk down a hallway only to find me rolling down the hallway as I stood! But my favorite was that one morning, while I was standing, I went to see if my daughter was up & knocked on her bedroom door. She opened it & gasped: she was NOT expecting to see her mom STANDING outside her door! J
I am so grateful to God who has provided me with the means to be blessed this way. This chair has provided physical & emotional benefits (hugs are SO much better now!), & increased independence (in my personal activities, & it has also allowed me to do more therapy on my own.
After so many years, I had to start “doing the math” before each birthday, & now I can never remember how old I am! I just have lost count…well, I have reached that stage w/my “post-stroke” years: after subtracting this year from my stroke year, I knew this was my 14th stroke-aversary! Ha!
A good friend recently told me about the movie “Breathe” (a movie based on the true story of Robin Cavendish who, at 28 yrs. old — I was 30—was paralyzed by polio and given just months to live — I was given 24 hours to live. Against all advice, Robin’s wife Diana brings him home from hospital(like Mark did), & he becomes a British advocate for the severely disabled—which may explain why England is SUPER accessible!)
Parts of that movie hit so close to home that if I had seen that movie years ago, it would have been a struggle to watch, but since my stroke occurred so long ago, I was able to watch it & just relate to many of the situations & conversations (only my side of the conversation was either in my head, blink spelled, or signed!) I echo his words: ‘I don’t want to just survive. I want to truly live.’ Thank u to all who make that possible…this day is for u, too!
At 1st, I wasn’t sure what brought this on, but I think I can now attribute it to a few things, & 1 thing is the many prayers that resulted from a recent post of my Mormon Messages video! Horse therapy, chair yoga, & my bike (that also do arm circles) have strengthened it, & not “ignored” it…
Here’s a post about more progress, that I started to write when our foreign exchange student, Giuli, was nearing the end of her stay, & her family came to visit:
I have always felt like my anxiety has somehow blocked my speech, & in the last month, I have been doing activities to calm my anxiety (chair yoga & guided meditation). I don’t know for sure if this is related, or merely a coincidence, but my speech has improved DRAMATICALLY in the last month.
Giuli’s family is here, & they are really nice! I love that even I can talk to them (sometimes I need to act out what I say, but used to be that if no one was there who knew me, I sat in awkward silence with “new” people, until they returned — but not now!) J This “taking thing” is getting exciting! I am no longer afraid to open my front door, to talk to strangers, I am more open to the idea of attending social functions, & I am able to participate more in small group activities, like brainstorming.
& to further that progress, here’s a post I started to write after I taught a scrapbook class in my home (Jan. 18, 2018):
I taught a scrapbook class here Thursday, & it was amazing! When I teach, I usually have someone teach with me & translate my ASL. I thought my Sister-in-law would do that, but she was sick, so her friend, Julie–who does not sign–was asked to help me. While Julie can’t sign, when she helped me months ago, she did REALLY well understanding my speech (& my speech has definitely improved since then), so I did not ask my husband or one of the girls to help me. I figured that this class was a good place to try teaching “alone”, since Julie understood me so well, since it was a smaller group, since I had no tight time constraints, & since I’d teach moms, & it seems like moms can usually understand me (I assume because of experience that comes from talking to toddlers! Ha!Ha!)
Still, I was a bit nervous. Seeing my other sister-in-law there gave me a “pacifier” for my anxiety (since she knows my ASL & speech), but once my brain started working, I relaxed & I could speak, & I remembered that if anyone can’t figure out something I say, I can just open a word document & type my response. So, as I taught, while Julie sometimes clarified my speech, she sat with everyone else (& sometimes no clarification was needed)! So, for the 1st time in 14 years, I taught “alone” (I spoke, I played videos, I demonstrated stuff, & occasionally I typed on my large screen TV when I could tell they didn’t understand me!)
When I emailed Julie the next day, Julie said: “I was actually surprised at how easy it was to understand you. It reminds me a bit like speaking and understanding a foreign language…it takes a minute for the brain and ears to adjust, but with a little extra focus, the communication begins to flow with more ease”
My last post was not a search for sympathy (though I appreciate all comments I received)! But I did want everyone to know that I am “normal”, & I wanted to share how I am dealing with it. I am actually grateful because I am finally learning something that I kept trying to earn, & had run out of ways to learn it!
However, getting myself to post has been SO hard, & over the months, I have started 6 different posts, & I want to share what I have: Here’s the 1st post…I started to write it as I was getting better (after being sick a total of 3 weeks: 1 week with the flu, then I remained congested, but since I can’t cough, it stayed in my lungs & must have gotten infected, because once I had antibiotics, I felt like a new person!) I added a bit to what I started, just finishing the thought I had. Here it is:
I always assumed that I was someone who did not take my health for granted. I know how fortunate I am for every small movement my body has, since the doctor’s prognosis was that I’d only blink my eyes. But, I realized that I take breathing for granted. It just is always there! So, I wondered if I am that way with other things, & I realized I am: I thought of how I was when Mark or my kids were new in my life.
When I met Mark, there were things he did that no one had done for me before, & I Ioved that he did them! I still love when he does those things, but I think they are more “expected” now because that is “just how Mark is.”
It is the same with my kids. We were aware that Zach was a peacemaker in our home, but when Zach left home, we realized just how much of a peacemaker he was. When Jessie joined our family, there was this zest for life that came w/her, & it has become such a constant in our life, that it will surely leave a hole & change our lives when she leaves soon (she is 18 years old now!) Soph has filled our home with music, & is always willing to help me. We have 2 more years w/her, & better not take that for granted!