Andy, I kind of liken dealing with PN to mourning. We go through stages of grief. My PN left me instantly & permanently disabled, though I’m happy today to be able to get around with a walker vs wheelchair, and even drive. I spent time in denial and sadness. I spent too much time in Anger; anger at Neurologists most for not knowing the cause, how to cure, how to live with it, what to expect from it, and Anger that the several I had seemed to lack compassion. Then Anger at friends and relatives who were clueless about my condition but felt like experts in telling me what I should and could be doing. Sadness from separating from friends (and some family) because my physical limitations no longer allowed me to participate in activities they liked & should be able to do in these later years.

I finally came to acceptance, fighting hard to control my own destiny as best as I can, learn to find activities to keep me busy and interested, and cheer and encourage people around me to not let me hold them back from activities good for them just because I’m unable. It’s harder for my husband, but I try extra hard to do as much as I can with him, because he sure has made a lot of sacrifices for me. He’s so happy for me to travel and go to ball games with him that he doesn’t mind having to have handicapped friendly seats.

This has been a difficult 24 hours. My stepdaughter insisted we join her husband and teen daughter at a Lakehouse they rented. I sat on the main level balcony reading, watching them below at the pool. The pool required a full flight of stairs up & down the back of the house, as well as 3 unrailed tile steps within the pool area that would require people lifting me up and down. They were frustrated with me because I wouldn’t do it for them, not understanding that a little fall would land me in a rehab home with serious damage potential, and I have to make the decisions on risks that I take. I had to argue nicely while encouraging them to PLEASE use the pool without me, they’re on vacation! Finally bedtime, and the young healthy couple and teen had to have the main level bedrooms. Hey, they rented the place, they’ll be here a few more nights, and we’re only here for 1 night. Handicapped me and my 79 year old husband were given the basement suite. It’s very nice, but required a dangerous spiral staircase down. My walker stayed upstairs, and I made the trip down only once, at bedtime. I’m blessed my husband carried our bag. I am a prisoner in my cellar bedroom this morning, dying for a cup of coffee, but the only thing I can smartly control is my decision that I will climb those dangerous steps to the main level only one time today, and that will be when the rest of the house is awake and I’m showered and fully dressed and packed for our travel to our next destination, which includes a hotel with an elevator!!

So, when I’m upstairs and enjoying my coffee with my husband’s family in another hour, I will rejoice! But Andy, you’re right, the psychological stuff is real and challenging, and certainly never ending. We just have to keep trudging along the best we can while trying to keep the most sincere smile on our faces. I have been in dark places physically and mentally. I couldn’t control what happened to me or how I got here, but I am in control of a lot of the risk decisions I take, because my goal is to not get hurt and further handicap myself and my loved ones. It often means pushing back against people who think they know more about my abilities than I do after 8 years, but I’d rather them get mad than me break a leg or worse. What I’ve learned about this is more respect and understanding of other folks fighting challenges, and makes me more compassionate and flexible for them.