CHRISTMAS IN OCTOBER!

     I just received new forearm crutches today.  Black and silver and shiny and beautiful.  One to keep in the car, and one for everything.  Last week molds were made of my legs for new braces.  The woman who worked on me put me in a chair that she raises very high to measure and wrap my legs in some sort of mold.  She noticed how one of my old braces was pushing my leg inward causing problems with my knee, so she is making an adjustment when she makes the new braces. She took her time and asked me a lot of questions.  I saw that they had a poster for children with braces like mine.  They had them not only in colors, but with different designs.  I loved it.  She asked why I wore the same brace on my left leg  for 26 years.  There is a big crack on the back of it.  I explained that it was just more comfortable than the newer ones.  She made note of that.  She is also putting pads in them, where there is tenderness. A dear friend called a few weeks ago and said it’s a little sad that I’m excited about new braces and crutches.  She may have meant that the time it takes to get the doctor’s approval, getting insurance to pay for it, and having to justify it all is ridiculous.  Or she may have meant that it's unfortunate that a I need them at all.  I have only had four pairs of braces in 32 years. When I was first learning to walk, I could barely move my legs and couldn’t feel the floor beneath me.  One doctor came to my hospital room, did a quick check and said that since I only got a small return of the muscles in the last several weeks, that I probably wouldn’t be walking very much again.  However, for the few steps that I could take he prescribed long legged metal braces to my waist with a waistband, and of course two crutches.  He said that way, when I do walk, I won’t substitute any muscles.  “Substitution”.  That’s a big word in physical therapy.  That's the only way that I can get from point A to point B.  I don’t do “heel toe”, like most people, I sort of waddle. He had the final say in what I would be using to be mobile.  After he left my room, I was in tears.  It wasn't just his demeanor, and telling me this was all I would get back,  it was the idea of wearing metal braces up to my waist.  The physical therapists talked to me privately and said that they didn't agree with him, and sent me to the brace maker that they like.  He talked to this doctor and bet him a steak dinner that he would have me in short plastic braces to my knees and that was that.  When I met him, he sat on the floor and talked to me.  I was in a wheelchair and it was such a joy to speak to someone and look eye to eye with him.  My neck hurt from looking up to talk to people.  He had some ideas.  He put me in braces already made that were very soft.  He wrapped my feet and braces with an ace bandage, pulling the foot up past a 90 degree angle.  He said that since my quadriceps worked, the braces would force me to stay in a bent knee position.  When we worked on it together, I was able to take a few more steps with two crutches.  Staying in the bent knee position, I could stand and not fall.  He made me beautiful braces.  That’s how I walked for 5 and a half years and got down to one crutch.   As the years passed, and my feet and legs got stronger, an acupuncturist pointed out that I no longer needed the braces made like this, and to get them at a 90 degree angle.  It would be better for my legs and back and I would walk more normally.  I went to a few different brace makers.  The left leg and foot got stronger faster than the right, and one brace maker asked why I wore a brace on the left leg at all.  I explained that my back and leg wore out so fast, causing a lot of pain if I didn’t wear it.  He said he thought that I was just lazy.  I didn’t go back to him.  I finally found the right man and got what I needed.  I would have gone back to the same original brace maker, but I moved to another city.  Nowadays, it seems that they “get it”.   They make them just right for me and try to find the easiest way for me to walk.  I wouldn't be as independent without these beautiful aides.  A forearm crutch helps me walk even straighter.  And yes, after 32 years, it is STILL thrilling!

OF TWO MINDS

    In April, I got to go to the Film Festival here in Cleveland.  My friend Paul had tickets to a documentary called, “Of Two Minds”, about bi-polar disorder.  His freshman roommate from Yale was featured in this, and was coming in from California.  I didn’t know what to expect at all.  I have a few friends with this disorder and learned a little just by being with them.  This documentary followed very closely four people over three years.  At the very opening of the film, you see the director’s wife and pictures of her sister who had bi polar disorder and passed away in 1994.  As they followed these people, they were so honest about themselves. The film captured them at their lowest points and at their highest.  Carlton, Paul’s roommate, even had another person he became at one particular time. He is an artist and showed a painting of this woman that he did.  I didn’t realize he actually dressed up as her and went out in the world.  He also showed the bridge where he was going to jump off and kill himself and what stopped him was realizing that he might cause an accident in the ongoing traffic below.  He had some wonderful art that we get to see in the movie.  One young woman is a makeup artist.  Beautiful, young makeup artist in Los Angeles.  She looks like she has everything going for her.  While they were filming, she said that she had been reading alot lately on how best to kill herself with pills.  At the end of the movie she has very methodically gotten herself off medication and was doing yoga, acupuncture, and lots of therapy.  She truly changed her diet completely. We see her shopping at the Farmer’s Market, getting fresh vegetables.   We were invited to the Ritz after the movie and talked to the cast and crew.  I spoke with the director.  A sweet young man.  I talked to Carlton’s wife and got a glimpse of what she has gone through in her marriage.   I also spoke with a young man they featured.  Young as in late 30’s.  He told me one of the most important things to do was to get enough sleep.  He was very charming and cute.  One young woman, Liz was very funny.  Only in that she was so very honest.  I think what I got from this is I haven’t a clue.  These people live a nightmare and work very hard to keep themselves healthy.  They all work and are a productive part of society.  They can’t all afford their meds because getting health insurance is tough and the meds are expensive.  Carlton said that they finally tweeked his medication to a point where he feels “normal”.  Just within the last couple of years.  He is in his late sixties. That means he went sixty some years carrying this craziness.  He is able to continue being an artist.  I enjoyed talking to him and his wife.   When a close friend of mine came out of the hospital for the second time with this disease, we had lunch and she said, “If I could just stop these voices in my head.”  How do you do that, if not with medication?  I hope everyone sees this movie at some point.  It definitely opened my heart a little and the phrase, “There but for the grace of God go I.”,  comes to mind.  Here is the link below to see the trailer.

http://www.oftwomindsmovie.com/trailer/

THE SCENIC ROUTE

     The route I take to the Cleveland Clinic is via the freeway.  For some reason, I love where it takes me. First to Chester, and then to Euclid instead of going through the pretty parts of Shaker Hts. Chester starts off a little scary and then before I know it, I am at the Clinic.  I always wonder what the people are like that live on this street.  Some of the buildings and houses are very old and some are brand new and I wonder who lives there.  I see many people waiting for buses and some are in wheelchairs.  In my short time in a wheelchair, I never had to take the bus.  I had rides wherever I went until I bought a car with hand controls.  Even when I got in a swim class, it was scheduled right in between the time my brother was going to work and my mother was coming home.  It was on their way to and from.  And then I bought a car with hand controls giving me so much independence.  I find it fascinating that one part of the city is so beautiful and then you turn a corner and you see some very poverty stricken areas.  The Clinic has a beautiful fountain in front of their main building on Euclid and then in other areas, some lovely gardens.  They also have an open air market with fresh vegetables.  I spend money to get valet parking because I am just too tired to walk from the garage.  I wonder if there are people like myself with a disability who can’t afford the ten dollars for valet.  I used to go to Metro Health on West 25^th and the area was not so beautiful.  When I waited for my meds, I had to take a ticket and then wait to see my name on a screen and then stand in line.  At times it took an hour.  Sometimes it was longer.  So many people there were on Medicaid.  Some people looked like they had issues that could have been treated earlier, but probably had no health care.  I had a little and probably had more money than these people, but at Metro they rate you according to what you make and you pay what you can afford.  I saw a man with tumors all over his legs and another man with part of his face gone.  I talked to some of the people while I waited.  There were lots of young single mothers.  I thought I would feel so fortunate, but I didn’t.  I just felt bad for everyone.  On Tuesday, I took a drive to go to the park and take a walk.  I made a different turn and ended up at the Polo Field not far from where I now live.  I told my friend Barbara that I would call her when I started walking.  When I pulled in, there was hardly anyone there. The field was empty and I walked on the bridle path.  It was so beautiful.  The sky was blue and had no clouds. The red and gold leaves hit it and literally sparkled.  As I talked to Barbara and walked, I couldn’t stop talking about the beauty surrounding me.  Whenever I take a walk, it is usually in the park and the paths are very enclosed.  But here the polo field was so big, and so vast and open.  It made me want to set up camp and live there.  I don’t know how I got so lucky to move to one of the prettiest areas in town and have the best hospital in the world treat me.  But I am grateful.