NEEDING/GETTING

So, Vanessa and I have a repeating joke that goes like this:

Me: You’re my wife, so you have to fulfill my needs.

Vanessa: Well if I am not fulfilling them, you are free and encouraged to look outside the marriage.

Me: I’ll make some calls….

And so on and so forth…Today’s blog is an ad for what my needs are each day. These are in no particular order since I write in stream of conscience thought most of the time.

• 3-4 times a night, you need to wake up and change my sleeping position. I will tell you when it’s time.
• Upon waking, please sit me up, and then stretch my ankles and hamstrings so I stay loose all day.
• Place lift sling under my body, hook me to the ceiling lift and transfer me to manual chair. Think hanging beef on an overhead rolling trolley line from a slaughterhouse.
• Reverse the process to put me on toilet.
• Wipe me when I’m finished, then replace sling, transfer to shower bench, remove my shorts and shirt. Turn on water, adjust for temperature. Assist me with shampoo and rinsing.
• Dry me off, assist me with my morning meds, and please use extra towels since I’m always cold.
• Take my clothes out of closet that you also wash and iron for me.
• Place sling under me and transfer me to the bed.
• Dress me, put on socks, and shoes. Please tie my shoes.
• Put manual chair in bathroom, drive power chair into bedroom. Transfer me to power chair, adjust my hips, place knee brace in front of my legs.
• Prepare some food for both of us.
• Clear away plates and cups and you do the dishes and/or load and run the dishwasher.
• O.K….now you can get ready for work or the day.
• I will need food at least 3 times a day. I also will need to pee. I will need you to hand me my portable urinal. Also dump it out, and then rinse with warm water and soap so it doesn’t smell.
• If I didn’t poo in the morning, I may need help getting on to the toilet at anytime during the day. Be ready when you come home at lunch just in case.
• Place toothpaste on the brush for me. I can’t really squeeze the tube well.
• Did I drop anything at all? Please pick it up. Thanks.
• The kids placed my cell phone on the charger. Awesome, but now I can’t unplug it, as I don’t have the hand strength. Can you unplug it and hand it to me please?
• I’m going to leave the house. Please put on my coat and hat. Also I need you to fasten my chest strap so I can drive safely. Thank you for opening the door so I can get into the garage.
• Someone left the passenger seat reclined in my minivan from earlier. I cannot enter the car unless the seat is all the way forward. Please pull the seat level. Also, leave the garage door to the mudroom open a crack so I can get in when I get back. I know we can make this door automatic, but it’s more than a grand, so let’s just leave it open a little.
• Standby, I may have an itch on my head, leg, or foot that I cannot reach.
• It might get cold. I will need help putting on a sweatshirt.
• It might get warm. I will need help taking off my sweatshirt.
• Sure, I would love a banana, if you peel it please.
• Repeat many steps above for dinner.
• I can stretch out on the couch if someone can lift and transfer me. Where’s the remote? Can someone hand it to me? Wait, that’s upside down, I can’t flip it around in my hand. Thanks.
• Time for bed. Please help me with my toothbrush again.
• I’ll need you to sling me up, transfer me to bed, and undress me.
• I sleep on my back, but I bank my legs with small pillows so my legs don’t roll out during the night making me appear to have frog legs, which hurts my groin.
• Once I’m laying down, please pop my sleeping mask over my head and adjust.
• Good night. You can get yourself all set, and please remember that I need to be moved a few times per night.
• These are my needs as of December 2022. Because muscular dystrophy is progressive, my needs will increase in the future, but it is almost impossible to predict how fast I will lose other abilities.
• Last but not least, I cannot pay you for any of this, so this “job” of helping me is all because you are a wonderful, kind, and caring person.

Upon reading this list again to proof it, I am laughing. Why? Because if I really think about what it takes to have the quality of life that I do, if I don’t laugh, I will cry. It doesn’t feel so overwhelming as I go through the day, believe me. So, if anyone outside my family wants to “fulfill my needs”, hit me up. I’m down for Netflix and chill….along with my kids cuddling on the couch too.

Stay safe, stay awesome, Happy New Year, and stay tuned.