Q: How disruptive is the surgery? Would I be able to live on my own and care for myself?

A: Short answer, no, I really don’t think so.

* Requisite asterisk of having all the procedures at once, but I had to move back home for this.

I was living on the east coast when I obtained my diagnosis and began researching the surgery. It became quickly apparent that I was not going to be able to remain in my two story apartment in a physically demanding city while going through this, so my now-husband and I moved across the country and back into my parents’ house. We lived there for just under a year while I recovered. I am very lucky to have a supportive and resourceful family who sacrificed a lot to be my full-time caretakers for a while.

I had no concept of what activities a surgery like this disrupts so I’m just going to make a list:

• Even simply bringing me home from the hospital was a multi-person ordeal. Dad—who was thankfully retired and home a lot—had to creatively alter the seats in the van since my knees couldn’t bend. He, my partner, and my brother had to work together to lift me in and out of the car through the trunk every time we had to go to an appointment (and I had to go to physical therapy three times a week for a long time).

• I had to live in my parents’ room for the first 6+ months because it was the only room with doors wide enough to fit my wheelchair. The only other place I could be was the armchair in the front room. Dad used PVC pipe and other scraps to build a sort of cage, which we called my battlestation, that fit over my legs and the chair. I used that as a desk and it kept our dogs away from my legs.

• I couldn’t lay or sleep comfortably so we had to figure out how to best prop me up and a mountain of pillows was the answer. We got a wedge pillow to help take some of the pressure off my low back and tailbone. I had to keep my legs elevated a lot of the time to encourage blood flow, so that was more pillows. We had another small microbead one that helped redistribute the weight off my heels, where I was developing very painful pressure sores. I crammed several more pillows on either side to really pin me into place while sleeping, otherwise my unconscious body kept trying to turn onto my side (and my conscious body really didn’t appreciate the pain that caused). 

• I had to use a free-standing bedside toilet for the first month because I was 100% bedridden. My mother is a saint for managing that and I am still deeply embarrassed. I also couldn’t shower while bedridden, so I relied on body wipes (which still doesn’t make you feel any cleaner). Mom and my grandma had to help wash my hair, which was a logistical challenge in its own right.

• Once I could be moved more, we had to take the doors off the shower so we could (mostly) fit a shower chair in it. Dad used scrap vinyl flooring to make a track over the carpet so I could be rolled from the bed to the bathroom using the seat part of a desk chair while someone else held my legs up to prevent them from bending. My partner and I figured out how to gracelessly transfer me from the desk chair to the shower chair and out again. It was very much a two person job.

• Dad had to lift me out of bed and into the wheelchair or out to the armchair every time. He had to be the one to get me and the wheelchair over the awkwardly heighted lip of the front door frame, then down the entry step without me tumbling out. He also ended up being the one to fight with the wheelchair supply company for months on end when they inexplicably assigned me a child’s wheelchair I couldn’t fit into. My best friend is the one who found an appropriately sized wheelchair I could use (thanks Annette y su familia). Check your wheelchair before leaving the hospital, folks!

• The less physical stuff was a challenge too. I left the hospital with opiates to be taken every two hours and muscle relaxants to be taken less frequently (which I couldn’t keep track of due to, y’know, the opiates) and blood thinners that had to be injected into the skin of my abdomen daily. I couldn’t do the shots myself and my mom couldn’t bring herself to do it, so my partner became my injection administrator. (Thanks, Alex)

All of that is to say, no, I could not have taken care of myself throughout my recovery. I can’t imagine trying to go through it without a strong support system and at least one person living with you.