Deadline

[cjsmith]

I may have to face the fact that I'll never get better. What would I do if I knew right this moment that I would never again walk without pain?

The Never Get Better To Do List
1. Apply for disabled parking placard.
2. Cut my hair. Ditch gym membership, get a Y membership. Begin swimming.
3. Quit square dancing.
4. Get an electric scooter, all-terrain if possible. Maybe buy a new car to accommodate it.

I'm holding off on doing those things because I cling to the hope that I'll get better. In some ways the worst part is not knowing either way for sure. My life is on hold until a miracle occurs.

Maybe I should set a deadline. How long am I willing to stay on hold, given that it's already been a year and a half and given that miracles aren't looking likely?

Comments

[jmkelly.livejournal.com]

I feel for you.

No need to wait on the first two, anyway. You don't have to use the placard if you don't need it, and swimming's good exercise anyway.

[cjsmith.livejournal.com]

Well, I sorta like my hair. But yeah, this has gone on too long already.

[quasigeostrophy.livejournal.com]

I don't have any answers, but want to say I'm hoping for you, too. *hugs*

[cjsmith.livejournal.com]

Thanks. Hugs back. Please hug Toni for me, too...

*Hugs*

[nurvuslee.livejournal.com]

Just wanted to let you know that I've been following your feet struggle and my heart goes out to you. I know how much you enjoy running & dancing so I'm still hoping for ya.

Re: *Hugs*

[cjsmith.livejournal.com]

Thanks! It's fortunate that I'm a caller, because pulling away from the SD community entirely would be tough to take.

My two cents

[sharya.livejournal.com]

Right now, it's sounding like your quality of life is sucking pretty majorly. So, why don't you do something about it right now?

All four of those items you listed are pretty much reversible. If you get a disabled placard, you don't have to use it if you get better. If you cut your hair, it can grow. If you get a Y membership and things improve, you can always ditch it and get the gym membership back. And the swimming is helpful no matter which way your health decides to go :P As far as the square dancing goes... if you can't dance, you've sortof already quit haven't you? You just haven't really verbalized it yet... and you can always take it up again in the event that your condition improves. Same thing with the scooter... you could get one now, then sell it if things get better. Or give it away to charity.

The car thing would be the only thing that might be hard to undo, so maybe that could wait... or not. You'll always need a car, so why not get one that will accomodate all your needs, both now and in the future no matter what the future may bring?

They say, when someone either loses or gains weight, they shouldn't wait to change their wardrobe... they should try to make sure that they look and feel good right now. I'm thinking this is a similar situation.

So yeah that's my two cents... and probably worth less than what you paid ;)

Re: My two cents

[cjsmith.livejournal.com]

The placard is definitely reversible. Gym memberships can have steep initiation fees, and scooters aren't cheap, and my hair may not grow this long ever again... but I can live with shorter hair and the rest is "only money" (heh, as if I HAVE it).

You're right that it doesn't make sense to wait on anything that's easy to get started on now.

[abenn.livejournal.com]

I'm feeling the same as others: do those things now. Surrender to what's happening. I just have a feeling that the road to healing is in that direction. Because I'm not convinced that this is permanent.

[cjsmith.livejournal.com]

The idea of doing these things now because this *isn't* permanent sounds odd to me. Is the idea "surrender, because fighting isn't working"?

[jb98.livejournal.com]

I agree. There's something very powerful about surrendering to the now.

[lrc.livejournal.com]

I still have one of Dad's scooter's for sale. At the moment, it's just sitting at a friend's shop collecting dust. If it would help you to borrow it for a while, let me know, we can work the details out. If you subsequently want to buy it, then we can figure that out as well.

This is likely a dumb question, but have you tried swimming with a bathing cap? How about skulling, kayaking, canoeing ...

[cjsmith.livejournal.com]

I'll probably just cut the hair, it's easier than pulling it out strand by strand with a cap. ;-) I'll keep the scooter idea in mind -- that's a great thought! In fact, maybe it's silly of me not to accept it right this instant. (I'm trying to figure out where I would PUT it.)

[vito-excalibur.livejournal.com]

The Little Mermaid's story would have ended a lot more happily if she'd been this pragmatic, for sure.

My only advice: living your life on hold sucks. I spent a long time on hold until I "got a job knew where I was going to be working" - staying in an apt. I didn't need to, and such. I started having more fun once I accepted that I was working as a contractor, and unpredictability didn't need to be feared so much as lived with.

[cjsmith.livejournal.com]

Oddly, I've thought about the Little Mermaid a lot lately. (The original story, of course.)

You're absolutely right that living on hold sucks. Time to cut that out. I can think of fun things to do that don't involve weight on my feet. Maybe I could learn to ride a motorcycle. Cut my hair short (see swimming) and dye it hot pink. Stuff.

[wcg.livejournal.com]

About item 4. Since pagawne got her scooter, I've been thinking more and more of getting a minivan or *something* with a tailgate and a roof that will allow me to drive the scooter into it and out of it without disassembly. I can get the scooter into and out of the Saturn, but it is a PITA. For you, with sore feet, to be taking a scooter apart, hoisting the pieces into your car, and then having to reassemble it when you got where you were going, would get very tired very quick.

One of the vehicles I've looked at (though I'll need to look more carefully) is the Scion XB (aka The Box). I think with the back seats removed it'd be perfect for two and a scooter, and still get something like decent fuel mileage.

[cjsmith.livejournal.com]

Sadly, I need something the size of my little Corolla (smaller than today's Corollas) if I'm to fit it in the garage or the driveway and still allow rfrench in there too. Without the scooter, it's a toughish but solvable problem. With, it might be overconstrained.

Still thinking.

[hnybny.livejournal.com]

Sorry you have to think about this stuff. Better to be prepared though. As for the hair they do make long hair caps and there are page on the web that tell you the best way to tuck it all in. I actually know someone who modified a cap with a latex tube and rubber cement so their hair could hang naturally and their cap wasn't so tight.

[cjsmith.livejournal.com]

That sounds like a creative solution!

[lesliepear.livejournal.com]

I'm agreeing with the others.

Getting a placard is a good idea. No one forces you to use it.
Does the Y have gym stuff also, or just swimming? If it does, then swim now and you can always do more later.
Maybe you can cut your hair short gradually. It will grow back.
Keep calling square dances if you like being involved.
You do need a new car, getting a little bigger one won't hurt.

[cjsmith.livejournal.com]

I'll apply for the placard. Worst I can get is denied, no worse off than now!

[lyrical1.livejournal.com]

I swam for years and years with long hair. (I don't know how long yours is, but mine was to the bottoms of my shoulder blades.) I managed by rinsing my hair with fresh water before getting in the pool, with the idea that filling it with fresh water first was better than filling it with pool water. And used a silicone swim cap, not the cheap laytex ones. I had no pulling with wet hair and the silicone cap. I then used a swimmers shampoo a few times a week to get rid of the extra pool residue. Condition. Condition again. It might be possible. I'd try it for a bit before cutting first.

[cjsmith.livejournal.com]

Thanks for the tips! Mine's to my butt, and it's already in bad shape (it has split MIDDLES) but hey, more conditioner, yeah...

[platypus]

I think you should do whatever you need to do to make your life easier or more comfortable right now. Maybe you'll get better -- I hope you will -- but don't put up with crap in the meantime. If the placard would help you now, get it now. I love swimming, so I'd go that route anyway, but I don't know about the hair. I hadn't actually thought that hair and feet were intimately related... time standing to dry/style it? Can you do that sitting?

[cjsmith.livejournal.com]

I can style it sitting, yeah -- it's just in such bad shape already (thin and dry, with split *middles*) that dunking it in a pool regularly would do it in. But that's ok. I could enjoy having a new hair color every month, and supershort hair can do that... :-)

[ambar.livejournal.com]

My first impulse (before reading the other 40 comments) is that all four of these things are reversible. The only one requiring a large financial investment is the last one. Why not consider doing one or more of the things on this list, to make your life easier, while you're continuing treatment?

[cjsmith.livejournal.com]

*nod* The other financial investments (gym reinstantiation fee, for ex) aren't big compared to a car. And yeah -- your take on it agrees with many others. I think I'll do some of these things right away. Am already printing the appropriate DMV form...

[rfrench.livejournal.com]

Fremont High School (right down the street at Sunnyvale-Saratoga and Fremont) offers public access to their swimming pool. Lap swimming (http://www.calsportscenter.com/lapswim1.htm) is available in the mornings before work. $3.75/session if you buy a bulk card.

The El Camino Y (http://www.ymcamidpen.org/elcaminoy.php) in Mountain View has an open pool. They don't publish their costs.

[cjsmith.livejournal.com]

Thank you! *smooch*

Are you ready to ditch your gym membership? *deep breath* I guess I'm ready.

[dizzdvl.livejournal.com]

If you do #2 (and yes my inner 10 year old giggled) tell me and I will send you a lovely swim cap and goggles. Oh and I have some training flippers I will send too if you think you could use them without pain.

*hugs*

[cjsmith.livejournal.com]

What a wonderful offer - thank you! I think most places these days require a swim cap even for short-haired folks, so I'll gladly take you up on the swim cap. I'm not too sure about the flippers... Are these things you don't need any more?

[tsjafo.livejournal.com]

Hoping for the best but preparing for the worst is the mature thing to do, but the situation still sucks rocks through a urethra. *hugs*

[cjsmith.livejournal.com]

Thanks. (Rocks through a urethra, I gotta remember that one. Ever had a kidney stone?)

[msmichelle.livejournal.com]

I'm sorry CJ. I hope you find an option that cures your pain.
Maybe just a break...
1 & 2. Bravo! Especially the swimming: low impact, good cardio. As others have said, you don't necessarily HAVE to cut your hair, unless you want to...there are many cute, low maintenance short hair cuts I'd love to try myself. :)
Can you still be a part of square dancing? Maybe take a break from the physical foot related. Or would it be to hard to be there and not participate fully?

[cjsmith.livejournal.com]

Thanks!

Swimming also works the legs as well as the arms and back -- a good complement to the wheelchair work.

I can still call square dances, for a while, until my credibility erodes due to lack of dancing. That'd be years.

[cyan-blue.livejournal.com]

Many hugs...