As I move through my days, I think it is important to give you a window in to how I operate. My aim is for health care professionals and other able-bodied people who do not live with me to see how I hack my life.
7:00 AM today: My wife gets up and goes to the kitchen for coffee #1 then returns to our room to begin stretching my hamstrings, ankles etc.
7:20 sling and ceiling lift to move me to manual wheelchair. My wife does all of this including sitting me up in bed.
7:23 Ceiling lift and sling still attached to me is now put on overhead track in bathroom for toilet. I’ll spare you these details…
7:30 I’m lifted by battery powered ceiling lift from toilet to shower. I need help bathing and so my wife helps me with shampoo and places I can’t reach. Remove sling so it doesn’t get soaked, and put 2 towels on floor of roll-in shower to stop flood. My wife has to turn on water as I hold the shower head and check temperature of water. She stands by as I say warmer or cooler. Yes, there are a ridiculous number of steps. While she waits for what I can do, she drinks her coffee in the bathroom. This woman is a Saint and after 8 years I am still not sure why she married me.
7:40 Sling on, lifted out to manual chair with towel on seat as my wife helps me get dry and take my morning meds.
7:42 Roll into bedroom where my wife puts up ceiling lift one more time to move me on to bed and help me get dressed. Thankfully today it’s shorts, T-shirt, socks and sneakers. On school mornings this whole process begins at 5:30 AM and I am wearing more formal clothing. P.S. Our 2 boys (7 and 4) are in the living room with Gram watching shows and having breakfast but come in to the bathroom/bedroom regularly to ask us all kinds of stuff…..
7:50 I’m dressed and for the last time today (unless I need the toilet again) I put the sling and ceiling lift on and my wife moves me into my power chair, which hopefully has been battery charging all night if neither one of us forgot. If I need to shave, I do this now with my electric razor. I can do about 85% of this myself, and my wife hits the spots that I miss. By now, she is on Coffee #2 and has checked her email, social media and the kids. Note she has now been up roughly one hour and hasn’t taken care of herself yet. You may wonder why we don’t have a personal care attendant (PCA) come in for this. Besides insurance jargon, it is difficult to find reliable help this early in the morning….especially when it is winter. And…..covid…but that’s all a whole other blog.
7:55 I eat a banana and 2 granola bars by myself as I hang with my kids. My wife is straightening up the bathroom/bedroom and she showers.
8:00 I brush my teeth by myself but cannot reach water tap or apply my own toothpaste. Sometimes my boys help with this as I try to get them to brush in the morning….they usually fight me on this. haha.
8:15 I am ready to roll after chasing my boys around the house and having fun. Next up is a drive to Manchester to have work done on my power chair….
8:30 I just wrote all the words above…..now going to drive. Double button push on my keyring opens my ramp van door inside garage. Tim opens door to get to garage for me. Sometimes we leave it open a crack and I can manage to open it with my foot plate from my power chair, but it’s closed right now. An automatic door opener is at least $750 and insurance will not cover it, so my work around is my 7-year old. 🙂
8:31 Power up my Aevit system in the van and open garage door with yet another button. Note that since I need an electric garage door opener, chargers for my ceiling lift battery, and wheelchair charger, we have a full home generator just in case we ever lose power. This will also stop me from getting stuck in my elevator (16k not covered by insurance)….did I mention that the generator was $9k? Obviously not covered by insurance. BUT..I’m pumped because, using hand controls, I can still drive alone and I enjoy car rides where I can think, listen to music and just be ALONE. To see how my van operates, check out my YouTube channel.
9:00 AM, I arrive in Manchester for new front tires on my standing power chair at REQ, which is a provider of chairs, home mods, walking aids, special beds, and all kinds of other medical stuff for the home. This appointment only takes about 30 minutes, but if/when they take the whole chair apart, it takes 2-3 hours and I usually bring my computer to do school work, read, or watch some Netflix. Of course, since my chair is being worked on, I need transfer assistance to a wheelchair at REQ…..so it’s one more time in my red sling, attach to the ceiling track and up and over I go.
This whole morning is simply maintenance and as I reflect, there are many mornings like this that are taken up just to make sure I have what I need to get through the day. The power chair IS my independence, as is my van, ceiling lift, sling and my support system. Hack Life. One problem at a time. What does the rest of my day hold in store?
Stay tuned…..stay good, and stay safe.
Patrick moeschen 
Thank you for sharing that private part of your life. It’s funny, when you see someone at work, you never think about what they did before they arrived. I never could have imagined all that your mornings entail, and to think about how much work went into establishing that routine is mind boggling. You and your wife seem to have an amazing partnership, along with some mad organizational skills. Sometimes when I have too much to do in the morning I feel frazzled and stressed and it sets the tone for my day. Thanks for giving me a little perspective.
Love this my friend. Most people who don’t know a person with a disability just have no idea of what it takes for us just to get our days started. Let alone get through an entire day!!