Thanks everyone for your kind well wishes on our new house! It’s been…educational.
First off: my mom is the world’s most diligent, persistent, jaded, and questioning-to-a-fault realtor. This drove me crazy at times (as only a mother/daughter relationship can), but I knew she was on our side, and not just because we’re family. A colleague once told her, “You keep at it long after most agents would run.” And that’s what we needed. THANK YOU, MOM.
Buying a house when a person has ALS is not the same experience as for the general population. Just scrolling through photos online, I nixed almost everything based on a single factor: stairs.
- Front steps and no garage
- Master bedroom on second floor
- Random changes in floor heights – additions, sunken living rooms, etc.
That basically leaves condos and ranches. We considered a condo, but we need 3 bedrooms because DP works from home and those are super rare or out of our price range.
Ranches come in two flavors: the 55+ community and the “Raleigh Ranch” built in abundance in the 1960s & ‘70s. We tried to make ourselves consider the 55+ community because the setup was great for us: no steps, wide hallways & doors, no maintenance, community pools, trails, etc. But we just couldn’t make ourselves go there in our 30s.
The Raleigh Ranch (like I grew up in) has two problems: the hallways are 36” wide and my wheelchair is 30”. That leaves me 3” on either side. So even if you widen the standard 32” door, I wouldn’t have room to turn. Also, the bathrooms tend to be small, which is problematic if you need to get a wheelchair AND a caregiver in with you.
Still, we tried. I never thought we would choose a home based on stair count, hallway width, threshold transitions, maneuverability around kitchen islands, and the size of the bathrooms, but those always became the deal breakers.
All this frustration led to months searching for land to build a house instead. We found a great builder who specializes “universal design” (houses accessible for everyone, including those with physical disabilities). But we couldn’t find a small plot of land close-in to a town that we could afford. And my deal breaker is that I need access to a trail. When I can no longer drive, I don’t want to feel stuck in the house. I want to be able to get out on my trike/handcycle/scooter/wheelchair.
DP’s deal breaker was popsicle trees – the kind developers plant after they bulldoze the real thing. I agreed. The ex-urban planner in me just could not bring myself to buy in a cookie-cutter neighborhood with 5 rotating floorplans, matching exteriors, and scrawny sticks for trees. So that nixed most of the remaining inventory.
Thanks to the booming market, 3- and 4-bedroom houses are in incredibly short supply. Most of them are snapped up in a day or two, creating a full-time job of refreshing realtor.com and pulling my mom out of water aerobics to go see a house at 9am.
When we first looked at the 1978 mid-century modern ranch in north Raleigh, I wasn’t convinced. Like DP, I loved the vaulted ceilings, double-sided fireplace, beautiful kitchen (which won a houzz.com award), and huge deck.
But I saw all the usual deal breakers: 5 stairs up to the front door and in the garage, 36” hallway, and small master bath. And it wasn’t in on the side of town where my parents live. Or on a trail.
But I could see how excited DP was. It checked a lot of our wants: an established neighborhood with real trees, close to shopping and highways, and Shelley Lake is only a mile away and totally accessible by sidewalk (the trail around the lake connects to the Raleigh greenway system, including the City of Oaks marathon route that Team Drea members are all too familiar with).
The house seemed to have been very well maintained – all it needed was a new roof – and the vaulted ceilings were beautiful; my mom said she’d never seen one like it. And if we could screen in the 22×29’ porch, I’d basically live out there for 8 months a year. I wouldn’t be stuck in the house.
So we put in a bid WAYYY over the asking price, I wrote a brilliant letter to the seller, and bingo, we were under contract. Thanks to my mom, we even got a new roof because the existing one had hail damage so the seller’s insurance company paid to replace it. Bonus!
Everything was moving along smoothly…until we saw the survey. The house is on a pie-shaped lot in a cul-de-sac and there are sewer easements along all property lines except the one at the street. Why? Because there is a stream at the back of the house and water runs downhill.
The retired city planner in me began sweating. We needed to build on a larger, wheelchair accessible bathroom – that was a deal breaker – but the stream meant there was a riparian buffer that allowed limited building 50’ from the bank. Also, there’s a sewer easement running under that big, beautiful deck we wanted to screen in.
The attorney was very concerned. The surveyor was very concerned. My mom was very concerned. I was concerned that they were all concerned, but DP and I trusted our research: we knew the setbacks, the state had been out to determine that it was, in fact, a stream (complete with fish!) but we’d still be allowed to build a small addition. And as long as we stayed out of the sewer easement, we could still put in a small screened-in porch.
(^^weeks of research and hand-wringing summarized in one paragraph!)
So…that’s where we stand now. We own it, but we need to have plans drawn, submit for permits, pray they get approved, and build. It sucks to pay rent and a house payment for several months before we can move in. It sucks to pay tens of thousands of dollars to renovate a perfectly good house (e.g. the platform lift in the garage costs $6,500). But we’re privileged to have these concerns at all. So many families dealing with ALS are struggling financially. It’s not just healthcare that’s expensive – it’s these out-of-pocket expenses too. It’s easy to see how a medical crisis can bankrupt a family.
It blows my mind that there are so few housing options for people with disabilities. Why aren’t 36” doorways the norm, instead of 32”? Why aren’t hallways just a few inches wider? Why do ALL showers have a step up? Would it take that much more money to create accessible homes? Are we all so certain that no one in the house will ever need a wheelchair or become bedridden?
Or are we all just oblivious to these issues? I know I was.