419. Nothing Happened

At the Hillsboro Library before I got sick.

At the Hillsboro Library before I got sick.

I’ve realized that although I thought I was pretty “with it” when we came home I actually blocked most of that first 6-12 months at home out. This is probably my brain’s own defense mechanism since as Mommy says, I don’t need to remember all that – I wasn’t allowed to get out of bed into my wheelchair, dress, use the restroom, or bathe by myself.

When I was discharged from RIO I told Mommy gleefully, Now we can do WHATEVER we want!!!

Yeah, no, that’s actually not what that means, she replied.

The first time I took a shower by myself I waited until she was on the phone long-distance and snuck in to the bathroom. I got in big trouble. But let the record show that I didn’t fall down!

If nothing happened, that makes it okay, right, M (my partner in crime)?

Last week I almost fell off a table at The Running Gym. Poor Coach R, after telling me to stay still and verifying that I was stable, had turned around for one second to get something for my leg and I shifted my weight unsuccessfully. (Yes, I almost fell and I was already lying down. Welcome to my world. PS. I think all the tables at the Running Gym are very narrow.)

I gasped but started laughing hysterically – Don’t worry! Nothing happened, R – this is COMPLETLEY under control.

Coach R: Don’t DO that!! My heart rate just skyrocketed.

Me (to the lady on the next table): I was just checking to see if he was paying attention.

Yeah, he was paying attention. Also, my right forearm has been acting up (Mommy says it’s bc I keep a death grip on my cane) so Leo has been on vacation. This, in combination with my better-but-still-wrapped ankle, makes Coach R nervous. So he pretended to be my assistive device for my entire session on Thursday. I guess the table incident didn’t boost his confidence. But I’m just saying he’s a lot nicer than, oooh, say…..M37. That’s right, M37 – I totally just said that out loud. Incidentally I saw M37 a couple weeks ago and as we walked to the front door I very gingerly put a forefinger out to balance myself.

I see you touching that wall, she said. Some things don’t change.

In other news, I recently managed to light a piece of toast on fire. It was a small piece of gluten free bread that slipped through the grill in the toaster oven when I had a motor skill malfunction with the chopsticks I was using to remove it from the machine. (See that, Boo Boo? They were wooden chopsticks.) Let the record show that it was a teeny tiny flame. I managed to rectify the situation without incident. More accurately stated, the flame extinguished itself while I wiggled around, hoping to block it from view. Don’t worry, nothing’s happening! I assured Mommy as I hastily bustled around that corner of the kitchen.

I then proceeded to fall into the laundry room closet that evening when I was practicing my ADL’s. I might have screamed a little. But I caught myself, or the clothes in the closet caught me, and I called out to Mommy, Don’t worry, I’m fine – but I stood still for a few minutes, eyes moving shiftily even though I was alone, waiting to hear her footsteps. Sure enough, she appeared within seconds to verify that I was indeed okay. I said nothing happened, I laughed when I saw her.

Mm hmm… Mommy is not overly convinced by my assurances. I guess she figured out pretty soon after we came home that I have a stubborn and sneaky streak I managed to keep under wraps for 30 years. Well, it’s all out in the open, now, and I thank the Lord that I have come to no harm considering the tricks I’ve pulled in RecoveryLand, and the magnitude of my deficits, even though I do my best to keep them on the DL.

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298. Somebody, PLEASE – just tell me what to do.

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I have officially transitioned to Medicare. (Thank you for praying re. this decision for me.) I’m eligible through SSD (Social Security Disability), and I’m very thankful for this – the application process can be tough (so Intel retains a firm to help you – pfewf), but I hope everyone recognized my case as a pretty obvious presentation of legitimate need. They must have read my file and been like, Ooooh – get that girl some benefits. She’s all kinds of disabled. So I’m thankful for this provision especially because my COBRA would have ended soon, but now I’ve switched over and met all my new providers (I chose Medicare via Kaiser, where my parents go – the past few weeks have been SO busy with appointments, but they are slowing down now).

This transition, however, signifies that I’m in this for the long-haul. So when I say stuff (e.g. my “Welcome” note in the sidebar) like, “I’m learning how to live again,” I’m not exaggerating. Examples of things I’ve learned: a) to put on a pair of pants, b) to wash my own hair, c) to walk. Although I haven’t mastered these tasks completely (I have worn inside-out pants all day before), I’m currently pursuing more advanced ADL’s (Activities of Daily Living), e.g. how to cook and clean (lightly). The problem for me now is that the further I get time-wise from my injury, the advice for recovery becomes less definitive.

Nowadays, though, I’m not sure what Recovery is supposed to look like. I know what I want it to look like, but it’s not entirely up to me. To the extent that I’m able I’m taking steps to build the infrastructure for a rock star recovery, e.g. the first floor of our home has been overtaken by exercise equipment. My philosophy has been, if it will help me walk I want it. Daddy has informed me that I am not to buy any more equipment – there’s no more room, anyway.

I have also started supplementing PT with the ministrations of my new personal trainer, “Trainer D.” When we went to the gym to scope it out I was like, Y’all ready to let all this (pointing to myself) loose up in your facility? Yeah, they’re ready. The idea of joining a gym is really an attempt on my part to prepare myself emotionally for the day when I’m cut loose from Therapy. (We’re not there yet :).) I’ve already told you how heartbroken I was when I got discharged from The Place.

69.  Williamsburg - Taliaferro-Cole Summer Garden by NH

69. Williamsburg – Taliaferro-Cole Summer Garden
by NH

Leaving M(37) and Planet Rehab because my insurance changed was also horrifying. So now I get to see Trainer D on MY schedule. I’m not going to be discharged – I can keep on going to The Gym as long as long as I feel like it’s helping. FYI, it looks good so far. Although he immediately noted my left-side’s issues, (hemiparesis, to quote N1’s reports), Trainer D’s initial evaluation is that there are no limitations on my physical potential. Granted, part of my brain is still missing, but he was talking more about my existing muscle structure. I have not discussed any research on people in my specific situation with my providers, but to quote CMD, we’re going to try [and get me healed up as much as possible].

This is a very open-ended proposition for recovery. I desperately wish someone would just say, Eat XYZ, sleep at this time, exercise at this time, with results guaranteed to catapult me into the healthy-living stratosphere. But that’s not how this thing works. Actually, how this thing does work is the same way my Old Life did – it’s just that it’s simpler now. I do not have things like going to the office, caring for a family, keeping house etc. competing for my attention like you do. I’m just supposed to Recover. I’m at the point that I can interpret getting sick and losing everything as the avenue by which my life has been dramatically streamlined. It was streamlined in a terrifying way, and at immense personal cost, but it was also completely internal – the danger came from inside of my skull, not from another person. I am unfettered by the weight of another person’s involvement as well as most of the pursuits that dominated my life in the past. But what’s most important hasn’t changed and I can go to sleep and wake up with one thought on my mind: just keep putting one foot in front of the other.

Psalm 27.4

One thing I have desired of the Lord,
 That will I seek:
That I may dwell in the house of the Lord 
All the days of my life,
To behold the beauty of the Lord, 
And to inquire in His temple.

Target Launch Tues Dec 10| Ann Ning Learning How

Please pray that all goes well logistically and we will get the incorporation and banking issues squared away for the target launch date of Dec 10, or sooner.

 

 

 

 

 

132. 10 Tips for the Disabled Cook

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I forget if I ever mentioned this, but Ed LOVES cooking.  He actually wants to be the Next Food Network Star and prefers to be called “Chef Blueberry.”  He makes all sorts of delicious things, and since it’s all imaginary food, it’s completely non-caloric!  It’s a good thing he’s around since my own kitchen mobility issues have put a damper on my cooking abilities.

To be clear, I was never a fantastic cook – I was simply at the level where I would not (nor would my houseguests) go hungry.  I was also able to occasionally invite people over, e.g. the time I was serving experimental pie to DnA and I opened the freezer, threw the ice cream in and slammed the door shut so everything else wouldn’t fall out.

These days I have more limitations than just skill, e.g., mobility (I often “cruise” in the kitchen like a baby – holding on to furniture), carrying things (can’t carry it unless it’s very small; it’s best if I can carry with one hand, put my hand on a surface for stability, and move the object along the countertop), knives = scary, stove and oven = scary, etc.  Yeah.  So cooking is a bit of a challenge for me.

One day I was flipping through a Crate & Barrel catalog, or maybe it was Williams-Sonoma, and I came to the pots and pans sections.  Looking at all that nice cookware that I can’t use made me burst into tears – because while pots and pans might make some people feel weighed down by the responsibility of feeding a family and washing up, they signify a life of independence that is beyond my reach at present.  So since then I’ve tried to cook more like S (OT6) taught me in Rehab.  I use the stove (under supervision) and the toaster oven (the size and location makes it doable for me.)  I also asked people on FB and at AVMSurvivors.org for any suggestions they might have.  I’ve compiled some of their ideas along with mine below, and thank them for sharing their tips with me (and you).

10 Tips for the Disabled Cook

  1. Be prepared to pay more.
    Since I am unable to cut things up I’m prepared to pay more for pre-cut things like crudités and chicken.  You can also use frozen veggies for soups and stir-frys. I might prefer my carrots to be julienned, but I’ll get over them being in little cubes.  I could always go get a pack of shredded carrots, though (like they sell for carrot-slaw).
  2. The crockpot is your friend.
    Many folks suggested slowcooker cooking, including an extremely knowledgeable friend of mine who has a background in catering.  She also pointed out that cooking with the crockpot might not necessitate exact measurements – if you like peas, add more!  This is a major bonus since I’m not into measuring a whole lot, and the crockpot is safer/easier to use than the stove/oven.
  3. Use electric pans that can be positioned at a comfortable height/place.
    Mommy has an electric wok, an electric frying pan and a couple of induction plates that I could put on a table low enough for me to pull up a chair to. 
  4. Google “Cooking Utensils for Disabled People”
    I had no idea these things existed.  Also, mainstream-cooking items like a mandolin slicer or a Ninja/Cuisinart/Vitamix could help chop your veggies etc. but you might need someone to help you wash these things.  Also, an AVMer suggested I try cutting some things up with a spoon – makes sense since I do this all the time at meals.  You might have to perforate with a fork first (like when you split an English muffin) but it’s worth a shot!  
  5. Look out for picture-heavy recipes or Youtube food tutorials
    Reading and following instructions is great therapy, but in case you have vision and/or cognition issues, look out for recipes w/ step by step pics or watch food tutorials on Youtube.  I had a coworker who would Youtube recipes all the time when his mom (who lived in a different time zone) was sleeping and he couldn’t call her.  Also, I received a fabulous tutorial from K (ProfJ’s sister) on my FB page for Slow Cooker Rosemary Chicken.  This sort of thing is ideal because you get the gist of the recipe and important things are spelled out on-screen in big print.  Thank you, K!!
  6. Ask for help.
    There are some things there are no workarounds for, e.g. draining pasta and putting cookies (or anything) in the oven.  In these cases, it is not a good idea to exercise your independence and just “try” – ask for help.  Also, some people have trouble remembering to do things like turn off the stove.  If this is the case, cook with a partner or ask someone to come check on you every 5 minutes or so.  Also, if you have any friends/family members who are OT’s, ask them for tips!
  7. Allow extra prep time.
    People say that you should always gather all your ingredients before you start.  I think this is a good idea – but what might take you 5 minutes would likely take me 15.  Or 30.  So time-sensitive cooking is not a good idea for me. 
  8. Grippy is good.
    One of the last times I was at the airport I rode in the chair but wanted to walk through the security thing.  When I couldn’t do this they would just push me through and then I’d get the pat down, but since I can walk now I take off my brace/weights and get out of my chair.  The problem last time was that the floor was very nice and shiny…and therefore slippery.  I wished I had thought to wear grippy socks like in the hospital.  I ended up getting rolled over to the heavy-duty full body scanner since it had a texturized rubber mat in front of it that I liked the look of.  So grippy is good – for TSA and for cooking, too.  I met someone who primarily uses one hand and has learned to function in the kitchen through trial and error.  She uses a silicon baking mitt (we have potholders) to keep things from slipping on the counter.  E.g. you put the silicon mat on the table, a bowl on top of it, and then you can stir it with one hand without it slipping around.
  9. Organize Organize Organize:  This is a good tip for everyone, but especially for those of us who have some processing issues.  I am blessed to be in a situation where Mommy cooks for our family but some folks find themselves dealing with a brain injury AND having to care for a family and put dinner on the table.  So plan out your meal beforehand – what side dishes will go with your entree etc?  Some people can just wing it, but listing everything beforehand helps you remember what to do as well as schedule breaks if necessary.
  10. Above all else – be safe.  Soon after we came home Ai Ai caught me trying to toast a muffin in the toaster oven.  Now I can toast things, but then it was a bad idea to try using the toaster oven without supervision.  She extracted my muffin for me, which was great – I had obviously figured out how to put the muffin in but I hadn’t gotten far enough in my thought process to think about how I was going to take it out.  In retrospect I probably shouldn’t have done that.  The idea of cooking can be intensely frustrating since the ability to produce food for you and others to eat is an instinctive human desire, but the inability to do so makes you feel sad.  :(.  But in the grand scheme of things it’s better to order a pizza than hurt yourself.

Psst – wanna see some recipes?  Click here.