My greatest gift

I get to witness the interplay of faith and action in so many lives that I consider this to be my greatest gift from God. I see people who are in despair experience hope from others, I see spiritual generosity on small and large scales, I see friendships form out of want and need. I see great resilience in others. And, yes, sometimes I see human failure to respond to opportunities.

Sometimes people email me for assistance and I try to find them what they need, whether it's a wheelchair or accessible housing or a local hookup to support. Some people tell me they've lost their faith because they have prayed for certain things to happen and God didn't fix the problem. I tell them that going through spiritual "dark" times happens, and has even happened to saints. Life can be tough. I also tell them, however, that praying without taking action is not what I recommend. There are some areas where we have to do the footwork and make ourselves ready for God's help. This means taking action.

Although I believe that God works in our lives, I also believe that if an opportunity comes along, you need to be as ready as you can be to make it work within your own abilities. The spiritual side to this is that God knows what we can and can't do. In other words, what I've seen in my life is that if people do what they can, opportunities often come along that fit their circumstances. I'm no Pollyanna and I'm not saying things always work out - at least they don't appear to, based on my limited human perspective - but I've also learned that praying for specific outcomes for people is humbling since God generally has a better plan in mind than I do for most, including myself. But if we don't do what we can to better things, we may not be ready for what chances come along.

The good news is that God continues to work in our lives even if we miss opportunities. It's understandable, of course, to feel down when things are tough and to feel as if our efforts aren't worth making. Sometimes in my own life, only hindsight has shown me that I failed to act when I could have. Learning from this, rather than blaming God or anyone else, has taught me to make myself ready for the next opportunity.

This morning I heard from a woman who told me that she found an accessible place to live. When I spoke to her about options several months ago, she didn't like any of them and blamed me - and God - for not fixing the problem. She was facing going into a nursing home when her aging parents sold their home. A scary and frightening problem. But I knew that she had to take some action on her own to make it all happen or it wouldn't work. She now tells me that she did take action and is living independently of her parents for the first time in an affordable apartment.

Faith and action. If we look around us, in these tough economic times, we can see how those work hand in hand to solve so many problems, some of our own making. Facing our own need to take responsibility as well as asking God for help may lead us to solutions we never dreamed of.

Posts that make me go hmmm...

I was reading this post by another quad over at From the End of a Mouthstick which talks about some of the issues I've dealt with myself, and talks about how people have different perspectives about what would make them happy. The "if I only had" syndrome is what I sometimes call it.

The writer talks about how in rehab quads were saying if they had use of their hands they would be happy and paras were saying if they had use of their legs they could be independent and the medical staff were saying if they had a new car they would be happy. Of course, Einstein was the one to pipe up with "It's all relative" and the wise guy in the room will be sure to ask "To what?"

Personally, I've found that , as we say in the spinal cord community, our level of disability has little to do with happiness. I know many quads who are happier than paras and many paras who are happier than able bodied people and many quads who are happier than able bodied people - well, you get the idea.

The same is true about money or material things. As I watch our economy get tighter, I know there's more to this topic than just philosophizing about the relativity of situations. There are people ( we all know them) who talk about getting this or that and as soon as they have the latest and greatest model are looking to get something else. This makes them pretty unhappy, although they could already win the prize for having the most toys when they die.

I just don't think that circumstances necessarily define happiness. An inner sense of values and an ability to be resilient really do play a part. Here's a video I found on a link to on a friend's blog today that kind of puts things in perspective.

Resilience is about the joy of living

The Mayo Clinic, on their website, indicates resilience is about developing coping skills to handle the hardships that come along in life.

But I don't think of resilience that way. When I hear the word resilience, I think about all I've learned while adapting to my disability- and watching others do the same.

I see images of blind skiers heading down mountain trails, laughing and joking as they speed past me at Ski for Light.

I smile as I remember my friend Janet and I loading four wheelchairs (two everyday, two tennis chairs) into a rental car for a tournament out in California, a car that turned out to be much smaller than promised. And then being stopped during an inspection check on a highway by a California state trooper who peered into the car and asked us where we were going and what we were doing. When we replied "To a wheelchair tennis tournament" he replied "Well you either went to a lot of trouble to make that up - or you're telling the truth!" followed by "How did you get all that stuff in there?"

I think of the fourth hour of a doubles wheelchair tennis match in the blistering summer heat of Flushing NY several years ago as my partner and I doused ourselves with water and hung in there to win, my duct tape literally hanging off my arm and racket toward the end.

I remember dancing with Kent, who was blind and insisted on spinning me in my wheelchair - right into the DJ! I never laughed so hard in my life and the DJ, who had apparently done these dances for years, nonchalantly picked up his turntable as we headed toward him and backed up to minimize the impact.

I just think we give resilience short shrift if we define it simply as developing coping skills. ( And I certainly don't go around seeing disability as a "life's hardship", so that's a barrier for me with this definition as well.) In any case, resilience is about so much more than just coping skills. Sure there are frustrations, but when I look back on my memories, those times fade into the background. I know they're there and I acknowledge them, but I don't dwell on them. Because that's not what resilience is about.

It's about the joy of living. The spontaneous being in the moment realization that this is "it" - my life - who I am - deserving of not only respect as I am but open to celebration and self actualization. It goes way beyond coping. Resilience is an inner core of being, like steel being made on one hand, but it is open, fluid and porous at the same time. I can feel it, almost touch it. I know it's there. It's a part of who I am and it's a gift I've received as a result of living with a disability.

Email question on resilience

A reader who is newly disabled writes asking for tips on developing resilience. He says he needs more resilience because he's feeling frustrated a lot. I link above to some tips over at the Mayo Clinic website along with a quiz to take.

But I'd like to mention that some folks mix up resilience with stoicism. Adapting when it comes to your disability, whether it's a newly acquired one or you're taking on a new task or have a change in your disability or your life circumstances, can involve a temporary set of "challenges" that can take varying times to deal with. While you're going through this, it's normal to have feelings - maybe grief, frustration, anger, joy, excitement - it can vary. The important thing is to hang in there.

Let's take the example of learning to use adaptive equipment. Realistically, some equipment takes awhile to get fitted and/or to fund and find. Then you need to learn to use it and the learning curve may be at a pace that tries your patience. Sometimes you need to arrange for the help of an occupational therapist or another expert.

It can be easy to get down on yourself while you're going through all of this and if folks around you don't understand they may inadvertently add to it rather than support you at each step of the process. One young guy I met never got his driver's license because his dad had trouble dealing with the frustrations of waiting at each step and kept complaining to his son "It's taking too long!" I pointed out that if his son gave up, he'd never get it and boy that was going to be a long wait. Nevertheless, his dad missed seeing the big picture.

I wouldn't worry though. Not only is it a waste of energy, but many problems get ironed out with time, effort and patience. What can look insurmountable when you're just starting a process looks much easier when you reach the middle and later stages.

Feel free to leave comments of how you dealt with adapting - or if you need some support as you go through a change. Often the best advice/suggestions I get are from other members of the disability community.