Saturday, September 3, 2011

On Being Prepared and Thinking Ahead and Does Anyone Really Care?

One week home from my first vacation ever has left me thinking about the future and things I want to try to do.  For example, even going fishing the few times I went this season I realized that I was not thinking ahead or prepared, even for being a normal healthy woman who loves to fish.  It had been too many years since I had gone, and I had forgotten many things that I would have done to make things better.  Now I have to think ahead for even more things to help make my fishing experiences, or any outside activities better, as well as safer for me.  In my recent blog on my Coping With Disabilities blog I talked about the importance of calling ahead for everything, and checking out every little detail before making plans.  The vacation taught me that I still can do things I want to do, but it will take extra effort on my part, and on the parts of family and/or friends who might want to include me in things they are doing.  I am so blessed to have a daughter who wanted to include me in her vacation and who went the extra mile to make it happen.  On the other hand, I am still very disappointed in the people I thought were my friends who could not even be bothered with me to even want to stop at my house on their way to church and give me a ride so I could start attending church again.  Simple things!  From them all I got was excuses and false concerns about what kind of vehicle I would need to ride in since I had my knees replaced!  Totally craziness!  Getting my knees replaced did not change what kind of car I can ride in, and if they really were concerned about it, all they had to do was call and ask me!  I did enough calling and begging for a ride.
Something I have learned on this leg of the journey of my life is that it is not always how determined the disabled person is to get out and do things.  It also matters how much support she has from family and friends to help her get out and do things.  I can guarantee you that if it were not for my daughter, I might not have even gotten my knees replaced at all!  I might not have had anyone to get me to all the many necessary doctor appointments as well as to the hospital each time if it had not been for her.  If not for my daughter, I might not be out walking regularly at the park or at WalMart to make sure my strength returns.
I don't generally ask to be taken places to be able to do the fun things I would love to be doing.  I know it takes a little extra effort sometimes depending on what that activity involves.  But there are a lot of normal activities in this area that I can still do all on my own strength without help from anyone else other than I need to ride with someone else to get there.  I have a list of things I could do and would like to start doing again.  At least I would like to try.  Years ago before I got sick I was the one with the mini-van who would make sure other people had rides to church or to our group activities.  The tables turned and I became the one needing the ride and the ride never appears.  In fact, I've only been invited to join my friends once in the last four or five years since I got sick.  All I come up with as a logical reason is that I've done something wrong so that my friends don't consider me a friend anymore.  Either that, or they are afraid of confronting someone else's health issues and/or don't want to be bothered with finding out what they can do to keep this person included in the group.
Well all that aside now, I am left with the knowledge that if I want to get out and do anything the rest of my life, I have to depend on my daughter to help me because no one else seems to give a damn about whether I get to participate in life or not.  Either that or I have to somehow find new friends in the area who would want to take my challenges on and see what can happen.  For myself, I don't think I've ever felt so trapped in my life.  I still can do things.  This vacation proved it to me.  I could have done better had I planned ahead better.  But I learned through it and I know better how to plan for the bigger things, or even the not so big things like going fishing.  But there are other things too that I can still do.
I can still walk!  Short distances for sure, but I can walk.  Sometimes I need to use my cane.  Other times I don't need it at all.  At the store if I am pushing the cart, I can walk a bit further, but not much so I have to sit awhile and rest, or use one of the motorized carts, or take the wheelchair along.  Taking the wheelchair along for some activities is the hardest part of taking me anywhere and I don't need to take it that often.  In fact, on the vacation we only used the wheelchair twice outside of the cottage yard and that was for the Island Hopping Cruise, and only on the boat, not the islands, and the one time we tried to go fishing.  We really would not have needed the chair for the boat ride either but it was better to be safe than sorry so we took it. The rest of the time I walked using my cane, and rode in the golf carts just like everyone else.  It actually was very insulting when I was told that my church friends could not come pick me up to go to church on Sundays because they could not decide what kind of vehicle I would be able to ride in.  I mean, all anyone had to do when they learned I wanted to go back to church would have been simple.  Call me! 
I can still go to festivals and parades, believe it or not!  Thanks Mary Lou for taking me to the Peony Festival and Parade and driving 2 hours to get here!  Thanks Sara for taking me to the July 4th Parade!  You both made things so much nicer for me for my spring and summer.  And neither one of you had to take my wheelchair along, or push me around in it.  I walked, rested, walked, and rested.  Mary Lou had to help with some extra trips to and from the car for me, but that was about it.  And it was a hot 99F that day which took all the energy out of both of us!  But I was able to do it and enjoy it.  We even went out to eat!  My daughter takes me out to eat a lot.  Sometimes I pay and sometimes she pays.  But the point is, I can do these things.  I just need the smallest bit of help, like transportation and friends to spend the time with.
Some things I would like to try to do are to go bowling, and have someone teach me how to play golf.  Okay so how would I play golf?  I am guessing by riding in the golf cart from each location to the next, getting out and walking to where I have to hit the ball.  Only God knows what would happen with a beginner like me when I get lost in the trees or on the rough or in the sand or water hazards.  I think I might need a little help...and if I have to have someone hit the ball by proxy for me....well, I am not in any tournaments so does it matter?  It's just for fun, right?  I'd like to play pool again, if I can play somewhere not in a bar.  I still want to go on day trips just to see things and take photographs.  Those would require some planning ahead, but they are doable.  
So okay, I can't walk very far and I can't stand in lines and wait.  I have to rest a lot because of the heart rhythm.  Sometimes I need to take my wheelchair and sometimes someone might have to actually push the wheelchair if it is an area where I cannot maneuver myself.  But I am still very much the person I always was.  I used to be able to make my friends laugh, and some even said I was a "riot" to be with.  I got sick and everything changed, including losing all my friends except a very few.  I will never understand this if I had a million years to figure it out.  I am getting older, like all of us, but I am not too old to enjoy life and the people around me.  I am not too old to do things to help others, or give back to the world.  Now that I have had both my knees replaced and I don't have to use crutches just to get around my small apartment; now that I can get out of the house and do things like everyone else does, I would like to try doing that again.  I want to live this life God gave me.  But God made us to need each other.  People need people everyday!  And I need a little bit of help doing the things I need and want to do.  All this should not fall on my daughter to be doing by herself.  So if anyone has any suggestions, I would appreciate them.  Just remembered this too, that I even tried unsuccessfully to set up a game night at my place with some of my friends, but they were not even interested in doing that!  I am at a total loss at this point.  But being this young and looking ahead, I don't see a lot of light at the end of this tunnel.  At the same time, I am strong and a fighter, and I don't give up on anything easily.  Time will tell.  In the meantime, planning ahead, I have learned, is crucial for a successful extended outing.
Thanks for letting me vent about this.

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