Recently, we drove to Dallas & I used my portable external catheter (from Purewick – I’m sharing this so other stroke survivors know about this, because it has been a game changer for me).  Sitting on it, initially, is not the most comfortable thing, but IT’S SO WORTH IT because I gain so much freedom & lose so much anxiety!  There’s a lot I put up with now that I never thought I would, because it makes my life better.  Happier.

Last month my grandson invited Mark & I to his swim lesson. When my DIL told James she’d ask if we were busy, he said “Grandma is not busy for me. She’s alright”. I was surprised by his answer. Usually if Mark can’t drive me, I can’t go.  But when I do go, Mark does well finding places I can go (thank u also to ADA).

Then I realized there are times at home when Mark’s working, but I can still play. At home, I can always be there for him. I hope he feels the same way when he grows up & I can’t go to everything…case in point:

A while ago my friend/helper Angie invited me to watch her son play soccer. I hesitated to say yes, because I needed a ride, & I needed to consider my schedule (I can’t usually use the bathroom when I’m out, so I have to factor in if to see my schedule allows me to use the potty at home before I leave,)

I forgot everything else I need to do though (if I what to go somewhere new) because Mark usually takes care of it  – & I’m so grateful he does,  because sometimes I’d rather stay home than figure it all out (things like checking out the parking situation, see if i can even get in, see if a stadium has cement I can roll on to an accessible seating area, or if it’s a home, I need to contact the family to find out I need a ramp & if I can even access a door…). I’ve always been a homebody, but the longer I’m disabled the more I’ve become even more of a homebody because going anywhere unfamiliar is exhausting! I can’t just go!  I hate it & usually avoid going to unfamiliar homes because it’s just too much work!

It wasn’t until I talked to Angie the next day that I was reminded how I missed many of my kids’ games & activities just because it was too risky to take me to an unfamiliar stadium or building. I grew up in a family where we supported each other in everything, & it broke my heart to hear my kids ask, “is mom coming?” as they walked out the door, because I wanted to go, but it wasn’t feasible!  How I miss the days when I could leave the house without a second thought of if I could get in & if I could use a bathroom (personal note: I am SO grateful to those who take care of this – like my SIL & daughter who recently opened a business in Utah, “Sunny’s Luxury Suites: dog boarding & daycare” – click on the words to see their website)

Even if a place is accessible, there’s no guarantee I can use it. People love to occupy the single stall bathroom, the bigger dressing room, the closer parking, etc. I try not to judge, knowing that even disabled people have more than 1 friend (I have a pet peeve that I can usually only sit by 1 person, & I also know not all disabilities are visual). However, many times, even if there IS a bathroom Ì can use, I oftenwait 20 minutes  to see a single, very healthy guy walk out of a stinky bathroom – I have to use it after some guy was  in there alone so he could poop alone, or some able-bodied person just wanted to use the nearest toilet…Arg!

Another “favorite” is particularly popular bad on  cruises: the elevator wiłl open the doors & it’s often filled with healthy able-bodied teens who could easily walk up a flight of stairs but rather the walk a flight of stairs, but even after seeing me & several other wheelchairs waiting, they stay on the elevator & make us keep waiting.

& even though u can ask for an accessible hotel room, there are no guarantees u will get it!  (I don’t know what other people do who don’t have a husband who can carry them! I think the Lord  helps somehow because I have seen Mark do stuff I can only guess the Lord was behind it!)

& my personal “favorite”: Handicap parking.  Handicap parking is THE WORST – & I don’t know who is worse … able-bodied people, or disabled people!  Those hash marks are not decoration, but BOTH able-bodied AND those who can legally park there will park on the hash marks!  & just because u can legally park there doesn’t mean u should!  I can’t tell u how many times we parked in the back of the parking lot so no cars would block my ramp, or I waited in the rain, so my husband could back up enough to let me in!  If u don’t need the curb cuts (like wheelchairs do) & can walk, then don’t fill up the van handicap parking! & if u aren’t disabled NEVER EVER park in ANY handicap parking, even if u think u will “just be a minute” or have a sign from a friend/family member that makes it legal. That minute could be when someone comes & needs it, or if all the van spots are filled up, u could be taking a spot from someone like me who needs access to those nearby curb cuts.

I’ll get off my soapbox now…I can’t say I was perfect (then, or even now) & I can’t say I have never done any of these things. There’s a serious lack of education about this stuff. I was clueless about how my actions affected people in the disabled community until I was in it, & if I ever hurt anyone, I hope they can forgive me. Dear reader, especially if u aren’t disabled, I hope your eyes are opened.