A Life Worth Living

Posted on July 18, 2011 by Tracy Seekins

Most people have days filled with activity. You may arise and get children ready for school and yourself ready for work. Then you spend many hours at your job working. Beyond that there are appointments to be made and kept, children to be cared for, meals to be made but what else? Do you have a hobby? Do you do active things or more sedentary activities? Maybe once a week you go out bowling or hiking or some other fun activity that you look forward to. Maybe you tinker in the garage or enjoy working around your property or some other active hobby. Whatever it might be, you have activities that fill your day and usually leave you tired and ready for rest in the evening.

I think the most difficult challenge for an active person who has become disabled is to find things to do. Suddenly you are left with very little income and sometimes little mobility. It’s probably one of the worst challenges we face to find things that make life worthwhile.

Take my husband for instance. He was always active. He has worked since he was 12 years old and never really been long without some sort of job. For the 10 years before his disability struck he ran a very active and relatively successful construction company. In his off time he often worked around the property, worked out in our basement with weights, tinkered with different projects and on occasion we would go bowling. Our lives were full and pleasant. We had money for hobbies and other things to fill our days, which helped with my boredom factor since I have been disabled for going on 15 years now.

Suddenly all of that changed. One day he was walking up our front steps and his legs gave out. He was struck by debilitating pain in his back. Slowly it spread and got worse, until finally he could no longer walk much and he could do almost none of his normal activities anymore.

We lost the business, well we were forced to give it up because of his inability to continue. We lost our home, due to our own choices in loans we had taken out prior to the physical issues striking. But we took it in stride and changed our lives in a big way but a positive way.

We chose to take what we had left and buy a camper. We hit the road to be full time RVers. At first this was difficult because we were living only off my very small disability check. For three years we struggled and survived and made the best of a difficult situation. Finally one day he got approved for his and we had hoped the struggle and the shear boredom of simply surviving our day to day life with very little to do would be over. Still what little we bring in together leaves very little for “quality of life” enjoyment and we are also limited by our own mobility issues and his social anxiety which is severe.

I know many others who suffer from various degrees of physical and mental limitations. I often wonder how they get through day to day life. I know from my own experience and perspective this is a very challenging issue. When you are just getting by and surviving on the meager income you are now stuck with, there isn’t much left for purchasing “hobby” items or for entertainment types of things.

For a while we played a LOT of online games. That provided both a safe social environment, in which his social anxiety issues were not so severely affected, as well as entertainment. But there is only so much gaming one can do before that gets old. We both enjoy movies but again there are only so many hours of TV or movies one can watch. Neither of us likes to sit and do nothing at all. We’ve both tried crafting and he does draw and paint but it doesn’t feel like enough.

Some days we wake and wonder “what on earth will we do for the next 12 – 16 hours?”. It can be very frustrating. It can become extremely depressing. And then of course there are the days when we wake and one or both of us is in a great amount of pain or I am ill and our day is shot from the start. Some days, some weeks, it feels like we are just surviving until we finally die. It’s a difficult feeling to describe or explain if you have never experienced it.

We are both still relatively young, I mean 40 is not really that old, and we have hopes and dreams for our future, but with the limited income it takes a long time to save for anything at all much less save for our kind of dreams. Saving takes a lot more of our income away and then our days can be left almost empty and devoid of purpose.

Me personally I have the internet and my writing and my spiritual communities. Those keep me busy and happy most of the time. John, my husband, is a far more active person than I have ever been. He yearns in his deepest self to be able to go work around the yard, to tinker with building things, to do something that isn’t sitting at the table staring at the computer with his mind wandering to the days when his body was so much healthier.

Sometimes I catch him sitting and staring at his hands. I wonder if he is dreaming about building houses or clamming or some other such thing. I can tell by the look in his eyes that he is somewhere else and that the thinking is getting him to a bad place. Those moments I will go over to him and kiss him to bring him back to the here and now, but I have no solution.

I can’t say “Hey let’s go outside and work on this or that.” There is no this or that to work on and neither of us could handle it for long if there was. I can’t say “Let’s go bowling” because we don’t have the money to go nor do we have the physical capability to bowl much anymore. The best I can do is offer to play cards with him, which works sometimes. I can offer to read some spiritual book I have with him and sometimes he enjoys that too. But these things do not fill your days. They do not fill that void that is left in the very essence of who he is.

Life is not about surviving! At least it shouldn’t be. Life is about LIVING and sometimes, unfortunately more than not, it feels like we are not really LIVING but simply surviving until that final day when we do not have to survive anymore because we will be beyond the physical. That’s no way to live. That’s not a “quality” life, it’s barely a life.

So again I say, I think the most difficult challenge for an active person who has become disabled is to find things to do. Suddenly you are left with very little income and sometimes little mobility. It’s probably one of the worst challenges we face to find things that make life worthwhile. And every one of us NEEDS to feel we are living a worthwhile existence and not simply existing.