Friday, April 20, 2012

I think we're alone now

The title of this one is a song by "Tiffany" from the eighties. Moving on... (seemed like a good title for this post)

Although life is hectic and chaotic right now, I've been taking time to think through a lot. Make note: this is not a "feel sorry for Beth" post.

This week someone with a disability said in almost tears, "I just want this all to go away." The person meant how life had changed since disability, how the person just wanted life back the way it was. There is so much adaptation, so many adjustments, this person must do. With disability, in an instant life can be turned upside down.

I emailed another friend who has a disability to see how that friend is doing, and whether the friend had anything fun planned for the weekend. No, the friend was dealing with issues from buying a car and selling the old car. The friend’s pet recently passed and I thought maybe a new pet would help. No, because though my friend loved the old pet, it was a lot of work. Too much work. There’s not enough energy. So now my friend goes home to being really alone, with no pet. And there is so much for this friend in addition to the car. I bet my friend wants it all to go away. I bet many, most, all (?) would prefer it all go away…

I've been thinking of my life - disability came on more slowly for me - I've had time to "adjust." During this time I think my faith has probably gone through some "adjustments" - it has become stronger, which I suppose is the opposite of what one might expect. Each step of getting worse = stronger faith. I'm not sure why.

This post is about being alone - perhaps God takes away some of being alone, and perhaps that's why my faith has grown, although I don't know. At so many stages, people with disabilities feel alone. It’s not like other “groups,” where we go home and our family has disabilities (though they may). In general, we go home and are loved, but we’re the one with the disability and it's just us with that disability.

Our family went to Disney World very recently. It was a fun trip even though my husband was sick for half of it. He's a kid at heart, and did all he had planned to do - there was no stopping him! My daughter, being 9, also had a great time. I had a great time too - it was just different.

If you read the post before this one, you might think that I think being alone isn't so bad. But this post is a different kind of alone... it's somewhat of a forced alone.

I rented a scooter because the parks there are so huge (and my shoulder, for wheeling that far... well, that would be a dumb idea). The scooter itself was huge. My wheelchair feels more a part of me. The scooter was this enormous thing. In it, I felt largely removed from things. People constantly cut in front of it, and it felt like they were assuming I was by myself, that surely cutting in front of me and making me slow from an already slow speed wouldn't separate me from my family. But of course it did. I felt constantly in pursuit of my family. By the end of the trip, I was ready to return the scooter for fear I might hit someone out of frustration. I have to laugh at that - Beth and a scooter - probably not the best idea. So there’s the assumption that perhaps I was alone, coupled with me feeling alone in this gigantic thing that kept causing me to be separate from my family.

Scooters have to be charged nightly. This is important. Unfortunately, I was more concerned with charging my Bioness than the scooter. And I didn’t know it, but the scooter I had went from showing it was fully charged to being on empty. One morning, the morning after I didn’t charge the scooter (but the Bioness was back at the hotel, fully charged! Funny in retrospect.) I ventured out alone with the scooter while my husband and daughter went to a water park. It was my time to shop! And of course, the battery of the scooter went from full to empty just as I started shopping. I made my way slowly back to the bus with people giving me extra (my daughter informed me that lots of people stared at me on a regular basis) strange looks as the scooter went through periods when it would lurch forward - a hiccuping scooter.

I got back to our hotel complex - it was a long way from where the bus stopped to our building and room. Kachunk. Kachunk. Kachunk. Lurch. Lurch. Lurch. And then it started to rain (the only time during our whole trip – rain, a lurching scooter, and the rest of the family at the water park – great timing!). Lightning is probably my biggest fear, so in fear of that, in the middle of an open area, by myself, lurching and not getting very far, I yelled at a guy in the distance to get him to help. After 3 yells (I have a soft voice, but it got desperate enough to actually be heard), he heard and pushed me between 2 buildings and under an overhang, just before it began to rain really hard.

Tense moments with God there - God, I need help, God, please get me to a safe place, God, be with me. God? And there I sat. The rain was a downpour for an hour. I had a book! But I sat there, nothing to do, no one around, alone, thankful I got to a safe place. Even if someone had been there, I couldn't have moved because it was an intense storm, and there was a lot of lightning. Eventually I got back to my room. There’s another story there, but this entry will be long enough.

Vacation with a disability is always different. Every bathroom is different. With the enormous scooter, some just didn't work. I also had my walker on the back of the scooter so this whole thing was really, really huge. You should laugh or chuckle now because I'm not a big person (5 ft 4 inches, 110 or so pounds), the scooter's weight limit is 250 lbs, etc. I couldn't develop any kind of normal since every bathroom was different. What makes every bathroom different asks a person without a disability, perhaps? The door handle can be in a different spot, and reaching it, and closing the door, can be issues. The toilet paper can be in a different spot and can either be above or below the bar next to the toilet. Overall dimensions of any bathroom when given such a big scooter are hard. Some bathrooms aren't made at all right, so I would leave the door open with the scooter sticking halfway out, hoping people wouldn't come investigate why this must be so. I think, if someone had come to investigate, I should have been ready to wave.

Hotel rooms - all different. Imagine having a walker, a wheelchair, a huge scooter... and then 2 leg braces and all the new mechanical stuff meant to replace one of the braces someday soon (and the charging stuff, because even if the scooter wasn’t charged, the Bioness was!). On top of that, add I had to figure out how to set everything so I could move. Lori enjoyed jumping between beds. I figured how to make spaces to move. No jumping for me.

I haven’t mentioned alone for awhile, but it seems like it should be obvious. I’m thinking most people on vacation get up and ready, eat, go ride the rides, maybe stare at the people in scooters (according to my daughter). I’m navigating through a bunch of stuff and there are times when I felt alone, swallowed by this enormous scooter, in my own world.

Vacations are not the only time of being alone. When I go to new places, even if people I know are there, it can be strange. I went to one place, so proud to be walking. I walked in and saw people I knew who normally smiled at me and said hi. But there they were, with a half-smile, as if this bent over woman walking was a bit embarrassing to them, and they weren’t sure what to do. So they somewhat moved their eyes as if pointing me in the direction I was supposed to go. Awkward. But, in cases like this, it’s how I meet people. I sat where I didn’t know people, and met them. Neat people. They weren’t embarrassed by me. If I had used my wheelchair, would it have changed anything? Do I care? Actually no, because I got to meet more people.

We returned home from vacation to a bit of chaos. My husband was sick. I was sitting on a chair and suddenly got very cold. When I tried to get up, my legs didn’t work. So I made my way without my legs, along the floor, and then got very hot. I had some sickness. By the next morning I could move slowly and went to an appointment. While there, Lori started screaming that her ears hurt, so we left and went to the doctor. Then people started asking about the trip… I think all I could think was how alone I felt when my legs suddenly failed, with my husband asleep on the couch. Alone. I talked to God, actually. What is happening? What is this? We spent a week recovering. I think we were all almost better. And then this week the lift into our house broke suddenly, which is my only route in. It was fixed in a day, but….. alone……. And a lot of other stuff this week has led to the same feelings. I’m glad the week is almost done. This can’t go on. I think God may be sick of listening to me!

So the point of this whole entry? I’m not sure. Like on Easter when our pastor said he wasn’t sure how to end the sermon (except it was a different topic completely, so this is just about ending things), I’m not sure how to end this blog entry.


Perhaps isolated is a better word.

But alone is never alone, and isolated is never really isolated, because I think God is always there. And so ight now, in front of me, is a quote:

“peace. It does not mean to be in a place where there is no noise, trouble, or hard work. It means to be in the midst of those things and still be calm in your heart.” ~unknown

I suppose, with all the chaos, I found some kind of piece via talking to God. It didn’t really feel that way at the time. But it makes sense.


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