Getting a Foothold: Hang onto the rocks if necessary

When I started this journey with Bill through the ravages of brain injury, I didn't have a clue.  I was working at a job I loved, making headway on a career I had waited many years to attain, and also knew I did not have the heart to walk away from a man I loved and who needed me so much at this time.

As far as State supported health programs, Bill is lucky to be a New York. The TBI program (for people with Traumatic Brain Injuries) offers some support that insurance will not pay for. Because Bill's injury is severe, he will need to be on Medicaid the rest of his life. Not a happy feeling for either of us.  The rules changes constantly. One month we can have this, and the next month it is taken away. But with his numerous hospitalizations and procedures, and his medications alone, even with Medicare now, he has to have that Medicaid.  What 2011 and the new economic year does not bode well for our program and services.

For me, managing this system and getting all of his services in place has been akin to the picture above. When I was roaming through the neighborhood taking pictures of the recent beautiful snowfall, I happened upon this trail. I was trying to get from here to the water.  I walked first to the right, but unknown to me, the snow covered a layer of ice that gave me pause and headed me back to the trail.  The rocks to the left are sharp and rough. No climbing out that way without some solid buckskin gloves, rather than mittens. 

So for me, the road not taken, to quote my favorite Robert Frost was the one straight ahead.  It seems to be smoother and easier if one is cautious.  The walk into this view was not a problem at all. 

But living with brain injury is the not a path of choice for anyone.  They accept they have it; we accept they have it; we climb the rocks, and venture along the snow covered ice as precipitously as we can. 

I am proud of the work I have done on Bill's behalf.  He could be in a nursing home, or have 24 hour care, but I dare say his quality of life would not be what I would want for someone I love.  Living at home with your family and spouse is better than living alone.  This may become a necessity at some point in our life.  We are young people, and I hope this will not become a reality for us anytime soon. 

What I can tell for sure, is that as long as we can, we will work it out.  And when living with brain injury gets too hard sometimes, and managing the system becomes too difficult, we will rely on the professionals who are out there to guide us.  This picture of the tree across my favorite creek really speaks to me about this.  When life gets too much to handle on its own, or getting a foothold in the snow and ice is too treacherous, a fallen tree appears to offer a dry, safe haven to get us to the other side. Another type of bridge, like the one we started with on our journey over the Connecticut River in 2006.

Caregiver tip for today: Enjoy your life minute by minute, even if you feel like pulling your hair out. And don't do that, either. It hurts!  

Photos by Ginger Bristow Gaitor of Moordener Kill, a stream in upstate NY