A Vintage View

I’m participating in WEGO Health’s Health Activist Writer’s Month.

Post a vintage photo of yourself with a caption about the photo and where you were in terms of your health condition.

 

 My lower leg post cast removal waiting to see if I’d need another cast. Family members wanted to stay updated on my post-op process so I sent a picture.

 As ugly-fied as my leg looks, complete with hospital lighting, it looked a lot worse without the protective wrapping, hence the reason why I went with the wrapped version. Unfortunately it isn’t much better looking these days. God intended me to have horrific looking feet, I guess.

If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter.

We Don’t Mind, You Know

a friend said to me during a post-wedding, pre-reception, cocktail thing. I was putting off eating or drinking anything until I got to my table at the reception. It was my first major venture out on crutches and without a family member in almost a year. I wanted to appear under control, even if it meant being hungry and thirsty for a while.

A few years before I was reading at what functioned as a kitchen table and I had just finished reading what I thought was one of the most profound ideas written by anyone. When my housemate walked though the door I immediately shared my newly acquired wisdom.

“We’ll take you shopping whenever you want to go.”

I was trying to share a very profound moment in my life and he thought it truly about shopping. If I didn’t slam my head on the table, I should have. I tried to explain myself as much as possible (I think) and we reached an impasse.

The more pressing problem years later would be that the profound insight I shared was with the groom. He would’ve allowed me to hitch a ride if need be, but this wasn’t the best day for it. He was a little too busy living in the moment to be concerned with me, obviously.

In all reality I had no idea how I thought I was going to accomplish such an ambitious weekend. I had less of an idea why on earth I thought this was a good idea. It must’ve been those post-op drugs, I thought.

I was embarking on two different road trips in two days, with two different groups of friends, to spend a lot of time in church(s) no less. It was like a TV marathon length of time, and I’m Catholic. Did I mention that it was August? I love my friends enough to make these kinds of sacrifices, often without complaint. I’m just awesome like that.

My goal was to not need crutches by this point in the recovery process. In fact it was my goal when the first save-the-date came in the mail. I figured 11 months was enough time for my brain-spinal cord-feet pathway to reconnect, but I was so wrong.

The first leg of my epic weekend didn’t worry me so much. I would be traveling with two friends from college, both of whom had offered to carry me somewhere if need be (and then did). I’d also end the day at home allowing me to spend the night in my own bed. The first trip would be the easy part, a dry run of sorts.

The last leg would take me so far out of my comfort zone. I tried to plan as well as I could, and not knowing all the best tricks yet. I convinced myself that I would be OK as long as nothing happened in transit since it was a wedding/reunion and there was some form of support system. And the bride’s parents are doctors; the groom’s parents, Montanans.

Learning from the previous day I thought about changing my mind (again) and using my wheelchair for mobility but there were too many unknowns. Things were going fine until the cocktails. I can barely carry a drink in a wheelchair without spilling it, never mind trying to do it with crutches. Your hands are occupied by default.

I just wanted to get to the reception in one piece, find my table, and take a seat close to the dance floor. Until then I found a smaller table with a few friends while they had cocktails and I wished they would just let us into the reception already.

People offered to get me food and drinks so many times I got annoyed. They meant well, and in a good size wedding where a good portion of the guests are your friends it’s bound to happen. I admitted that I already felt like a traveling circus and that having someone watch over my drink(s) for me was just too much.

 “We don’t mind, you know. If you want something we’ll help you.”

*Cue the slow nods from around the table and me feeling like a complete ass, yet still not a pack ass*

Now I needed a drink as much as I wanted one, but I managed to hold off until I was at my official table, because when you’ve deprived yourself for so long a few more minutes won’t make a difference.

Funny story, when I finally got my hands on a glass of wine I didn’t get to finish it. I got up to mingle (or pee) and when I came back a friend was drinking my wine. In the spirit of all’s fair in love and drink stealing I went after his drink, but the bottle was empty. Real friends offer to take your drink for you, not actually drink it for you, just saying.

In his defense, albeit a loose one, there was lots of sharing going on that night actually. I’m pretty sure I ate someone else’s bread, a few forks got redistributed, and maybe we went 2 for 1 on the napkins a few times. That’s what happens when former volunteers reunite, we regress; to the days of mismatched tableware and utensils and sharing was a necessity.

We’re older but at the same time we’re the same group of 20-somethings that came together, most of us in that airport, just outside Portland.

Most parents with children who have CP wonder if their children will ever be able to make friends; likewise teenagers and young adults with CP often wonder if they’ll have lifelong relationships with anybody.

True friends don’t mind if you ask them to go shopping with you, because you may need help or the companionship. True friends offer to carry you through the woods at 5am less than an hour after you first met. True friends don’t mind holding onto your drink for you either, just make sure they don’t drink it for you.

True friends come along when you least expect them to.

500 Miles

Two years ago I took my first legitimate steps.

I walked the length of the gym without falling.

I barely stumbled.

Then I went outside and walked along the length of the building.

Then I walked on grass & uneven ground.

Then I walked back inside.

And to the mats in the back.

I looked up and everyone in the gym was watching me.

Everyone.

Stunned, basically.

It was “great.”

It was “amazing.”

It was “incredible.”

It was “unbelievable”

It was “a miracle.”

It was a long time coming.

It was the 4^th-ish time I took my first steps in my lifetime.

The whole thing would be really funny, if it wasn’t just as aggravating.

In fact it was funny.

To the people that were there for the 3^rd time, and the 2^nd time, and of course the 1^st time.

They know the real history behind the first steps.

I was just glad to have gotten to that point, finally, again.

Two years later and a few weeks past Botox things are a little different.

Further proof that God likes a good laugh just as much as the rest of us.

Have you ever heard the Jesuit saying, “Good luck, bad luck……..”

Good luck, it’s working this time.

Bad luck, it’s not working as intended, I think.

After the first week I started tripping, that’s expected.

However I was still having spasms, where I shouldn’t, if this round is successful.

I’m still tripping.

Not badly, but by the 3^rd near face plant straight into the trash can…….

It’s annoying, and slightly dangerous.

I put the AFO back on, since that’s the solution for a dropping foot, usually.

Unfortunately it’s causing a set of problems all its own.

It’s odd to think I may have been more stable two years ago than I am today.

Sometimes putting one foot in front of the other is easy.

Sometimes it’s not as easy.

”But I would walk 500 miles
And I would walk 500 more
Just to be the man who walked a thousand miles
To fall down at your door”
-The Proclaimers 

Year 3

I’ve known this day was coming, because sometimes I still catch myself counting in months. However today feels different than it did last year, and especially the year before.

For one thing I’ve worked the on this day for the last two years. It felt like such an accomplishment, especially the first year, to be back in the world experiencing something so typical, and being pain free.

This year is different. For one thing it doesn’t feel like there’s such a separation between the before and after anymore.  I also have the day off today so I’m attempting to be productive, but that’s the lesser point of this paragraph.

I’ve been really bad about going to the gym this summer. It started with a trip to Chicago, then the kidney stone, vacations, and unexpected events. Back when I was super into going to the gym I tried to reschedule every session I’d miss. At one point I was even told, “you have to have a life,” by the same person who I was having sessions with.

So that’s what I’ve been doing, “having a life”

Is there still room for improvement?
Yes.
Absolutely.

But that can always wait another day.

I’m learning just because you want to rush things doesn’t always mean they’ll actually get accomplished faster. Everything comes with time, if it’s meant to be in the first place.

I have very little free time. As much as I like the occasional unstructured day, and like to have them fairly regularly, they’re really rare. Lately as soon as I have an opening in my schedule, of almost any sort, I clear the rest of the day.

Then I have some fun, or at least I try to.

It’s my final act of rebellion against the “no time off what-so-ever” command I’m under until the end of the year. It’s been implied, understandably, but when it was actually said my only child instincts kicked into high gear.

This last year has felt less miraculous than the year before. For the longest time I was terrified at hitting a plateau, so I did everything possible to keep making progress, and I’m pretty sure I drove everyone nuts in the process.

I’m realizing now that the plateau I was dreading may in fact be the ultimate goal in the end. Not all plateaus are bad.

Year one was about finding a new normal.
Year two was about learning to find the balance of the new normal.

Year three?
Who knows.

Process/Acceptance/Conclusion

After my last post with an equally odd title I packed my bag and headed to Boston. At this point I have the trip so down pat it takes 5 minutes to pack which works out well especially when the days leading up to a trip are more hectic than usual.

I’ve lost track of just how many times I’ve made this trip in the last few years. It’s become comfortable and somewhat typical. I pretty much know how it’s all going to go. At least I think I do.

I had the last appointment slot in the clinic. As much as I hate the waiting for it I do like having the last appointment. It makes for a long day but I don’t have to worry about holding other people up and/or not having enough time. With twice annual appointments getting everything in is important.

Nothing spectacular happened, which is probably a good thing. But there seems to be disagreement as to how well I’m doing. One appointment ended with talk of more fine tuning. The other ended with a “best I’ve ever seen” comment.

It’s time to circle the wagons and come to some sort of agreement here. So that’s exactly what’s happening.

There’s been discussion of more Botox but that’s still up for debate. If it does come to the table the decision will ultimately be mine, as it should be. The thing with me and Botox is, other than the relentless paperwork, that it’s pretty take it or leave it. The intended effects aren’t spectacular, but you can tell the difference after its all worn off. However because of this tidbit there was also talk of backing down on dosage, because there are situations where the lackluster effects can be traced back to too much Botox.

Although I rarely use my AFO anymore I had it looked at anyway. I didn’t want to risk wearing it doing more harm. I’ve never had one AFO last this long so I often wonder about one’s “shelf life.”

It’s making no difference in my gait pattern anymore. It use to make enough difference that the professionals would prefer that I wore it more often. Rather than getting another one made or trying a fully AFO-free life Botox could be beneficial.

The SMO & I will never be the pair I had planned on. Instead it’s been shoved in the closet, sharing fate with the Lofstrands.

Conclusion: Nothing is ever simple with me.

My trip wasn’t all business but I’m starting to realize that with each trip I’m becoming less of a tourist. What used to keep me entertained for a whole day (sometimes two) only lasts a few hours, probably because I now know where I’m going a lot of the time now. When people ask me for directions I can sometimes help them; I can’t even do that in my own city.

I mentioned to a friend (who’s from the Boston area) that maybe I should just move to Boston. I laughed when she answered, “You should.”