Three little words that seem so easy...yet are so DIFFICULT! You would think living with CMT or any other disability would be enough to teach a person what they can, and can't do at any given time. Hmmm...maybe it IS enough for most people, and I just continue to be stubborn! I still end up with those pesky back pains, because once again I did something I shouldn't have...which is one reason this post hasn't been written until now!
I struggle with having to say no to things...it gets tiring having to think about all those tiny details, such as how much standing will be involved, how much sitting, how much walking. What are the chairs like? Will there be a chair?? Do I need a pillow to sit on??? AUGH!!! Those nagging questions get old, real fast! And in most cases I do say no, because there are just too many issues and I know from experience what the consequences will be...but sometimes my stubborn Irish sensibilities rear their ugly head and I just have to say yes--because I really want to go out and enjoy life with friends and family! If I didn't say yes from time to time, I would have missed seeing my beautiful nieces on Easter Sunday...and that's an occasion I just didn't want to pass up! And then there are other moments that can cause me to be stuck in bed for a few days, such as new exercises in the pool that I think I should be able to do...and actually can't. (Note to self: if your butt keeps bobbing up to the surface while you're trying to spin your legs in circles, chances are it's not the right exercise for you!!) After all this time I've been going to pool therapy, I think I've gotten cocky...I've made such great progress with it, and it certainly keeps me going! So I tend to forget that I'm there for a REASON, and sometimes I just expect too much from myself...I need to know my limits, but sometimes the limits get blurred. Or my bobbing butt gets in the way!!
So despite the back pain, I went to my CMT support group meeting on Saturday--which I was not going to miss, even if I had to stretch out on one of the tables to be there! We had the Capital District Center for Independence, Inc. come to talk to us about the different programs available in NYS. I must admit, I'm a bit wary when it comes to assistive programs...because it has been my experience in the past that I don't tend to qualify for things. You would think that being disabled gives you a one way ticket to qualification, but it doesn't. I collect SSD, but I still am able to work 20 hrs per week...that takes me off a lot of lists. I have no children...that takes me off even more. Having two Master's degrees wipes me off the last few, and gets me some pretty strange looks...if and when I actually try to apply for some assistance I don't currently have. So when the presenters from CFI started to talk about programs such as ACCES-VR (adult career and continuing education services-vocational rehabilitation) I was sceptical. There are so many 'limits' I have to follow when I do work, and it seems pretty improbable that I could find another job that would allow for them. I've searched for work that I could do from home, but all I am able to find is telecommunications (which isn't appealing.) And quite frankly, those words 'continuing education' make me a little sick to my stomach...I don't want to have to go BACK to school in order to be trained in something else. I have plenty of training already!
And so, with my unsettled future looming overhead and the desire to be prepared for any circumstance, I started thinking that maybe one of these presenters (with all his infinite wisdom of vocational rehab) might have an answer for me. And with a little prompting from another group member, I decided to corner him on the break! I explained my background, and attempts to find work that I could do from home...and my utter failure in finding any that didn't involve something unpleasant. After all, my brain works just fine (on most days!) unlike my body--which leaves too many questions unanswered. "What happens if I get to a point where I can't even work part-time anymore?" I asked him. "Isn't there anything I can do with my brain if my body fails me??" And after he got over the shock of me swooping down out of nowhere while he was just sitting there, innocently sipping his coffee...we started to talk. I'm not sure I walked away with any definitive answers, though I have some avenues to explore. I remain a little sceptical until proven otherwise, but I'm willing to go down those paths and see what I can see. Who knows? Maybe I'll find something I can do that's more related to the training I already have, that actually PAYS...or a way to make this blog (which I love to write,) a lucrative activity. Anything is possible!
For any of my NYS readers out there who may be in need of some vocational rehab, because your physical abilities have changed, it may be worth your while to contact the Center for Independence, Inc. They have many other programs as well, from Advocacy within the community to home care...which allows the disabled and the elderly to remain in their homes (rather than live in nursing facilities,) when they can no longer handle daily activities on their own. And thankfully, new programs have recently been put into place which allow people with Medicare to access these programs (unlike in the past, when you had to qualify for Medicade in order to be eligible.) It's nice to know what your options are, if and when you may need some extra help! So check it out: their website is http://www.cdciweb.com/. Good luck, and happy hunting!