June 29, 2011-Volume 34: The Euthanasia Blog

The Adventures of the Blind/Low Vision/Visually Impaired (BLOVI) Girl- Volume 34: The Euthanasia Blog

http://www.youtube.com/watch?feature=player_detailpage&v=uAn5-GIv1zQ

During my recent vacation I met my boyfriend’s mother, who ended up in the hospital the week we were there.  She is suffering from advanced dementia.  My grandmother is also struggling with dementia and I know so many people who have family members with Alzheimer’s or dementia.  As we live longer it is inevitable that our brains will stop functioning before our bodies.  To me this is a tragedy and it makes me think about quality of life in the long term.  Is it not quantity but quality that we want and when the quality goes, isn’t it time for us to go.  That is the focus of the blog.  But first…………….

My WTF of the week is our condo at the beach last week.  It was as narrow as a single wide and the kitchen was actually in what appeared to be the hallway.  The living/dining room was tiny and for some reason they had portioned off a part of the space to squeeze in another single bed and dresser.  You could barely move around in one of the bathrooms and the balcony was so small that it only fit two small chairs and a tiny table.  When two thin people are struggling to both sit on the balcony there is a problem. The only saving grace was that the bedroom was a decent size and I retreated to it often to escape the feeling of claustrophobia. And it is not like we did not look up reviews and pictures of the resort beforehand- we did.  I am guessing the pictures online were of other units or maybe another resort. The other funny thing is because all the buildings were facing sideways and there were numerous ones, we kept getting lost.  The first day two smart people could not figure out how to get to the beach and the second day we actually took the boardwalk to the wrong hotel.  I am sure if my vision was normal I could have figured it out.  What I have learned is that a visually impaired person paired with a person with no sense of direction equals getting lost a lot.   

This week I can’t get enough of my new sunglasses.  For a person who has retinal damage and a blown pupil the proper sunglasses are really important.  I learned this the hard way.  After my cheap self lost my first $50 pair of polarized shatterproof glasses (of course shatterproof is a must for a person with my luck) I decided to buy a cheaper pair at the Walgreens. The problem was they did not keep out the side rays and were already scratching.  The first day on the beach we took a long walk and sat around a little and I got a massive headache. I thought it was from hunger or not enough fluid, but eating and drinking did not help.  That is when I realized that it was from light.  You would think by now I would realize that having a blown pupil is an issue when in intense sun and glare.  It is like having your eyes dilated all the time.  So, off we went to a surf shop where my not so cheap boyfriend wanted me to try on good glasses and refused to tell me the price (because he paid for them).  I ended up with a nice pair and they make a ton of difference- no more headaches.  This is a good thing for me and for him too.

As I interact with people suffering from dementia and witness the loss of both long and short term memory and the suffering of the people who love them, I think about the fact that losing my ability to think and my memories scares me more than anything else. It is like the people are gone, but still here.  So there is sadness, but you cannot grieve.  Instead you look for glimmers and glimpses of the person you loved, moments where they show their personality. And you hang on to hope when they remember something, anything and fear for the day when they no longer remember you.  And there is the guilt that comes from hoping that they won’t linger long in this state because it feels like you wish them dead and that means you are facing the reality they are not coming back.  For me, the hardest thing is the anger, and sadness that comes out in the moments of lucidity. In those moments they ask to die or for you to kill them and they express the misery of knowing that their brain is not working.  After that is the fear when they no longer know where they are, or what day it is or where the rooms in their house are.  The entire familiar becomes unfamiliar and it is the unfamiliar that is scary, so everything is scary.

If and when I get to this point, I no longer want to live.  Not because I am a coward, but because what makes me is gone and I would not want those around me to be in a state of perpetual sadness and delayed grieving.  So, that is why the living will is important. So that you can state that no unnecessary means are used to save you.  As my dad says, just tattoo DNR on my chest.  But I don’t think that is enough.  Why can’t our living wills say that when we lose our minds or most of our functions and have no quality of life we would like to be “made confortable” and by that I mean euthanized.  Why do I have to make a pact with my boyfriend that if we get that way we promise to kill each other and make it look like an accident (preferably pillow suffocation). But why should we have to risk arrest to do something that is humane, legal in other countries and that we do to animals all the time. If I request to die when I am in a certain state, why can’t that request be granted?  This way I am not begging people to kill me when I am lucid, because I know that it can and will happen.  As we live longer and longer we assume our quality of life is also getting better, but I am not so sure. I know that I would rather live less years if in those years I have some degree of health and ability to think and remember my life.  I know that in the cycle of life we start out in diapers eating mushy foods and babbling and maybe we are meant to go out that way.  I say hell no to that- get the pillow. 

And to those who have a loved one who is among the living, but in essence is gone-my thoughts are with you. What you face is almost unbearable. So we all do the best we can.

Keep Moving Forward,

Beth (BLOVI) Medlock

June 15, 2011: Volume 33-The L Word

The Adventures of the Blind/Low Vision/Visually Impaired (BLOVI) Girl–Volume 33: The L-Word

http://www.youtube.com/watch?v=Sg5FgSCDC_8&feature=player_detailpage

This week I am going to talk about how I found love on EHarmony. So yes I do owe them a huge apology. I am excited and somewhat awestruck that I found my life partner at the point when I threw up my hands and gave up.  I have learned much already from the new relationship and that is my focus this week.  But First…………………

My WTF of the week is the pain that I endured while ripping the hairs off my legs with my new epilator.  Not that I was not warned. As you know pain meds and alcohol were suggested, but not used. I even decided, before proceeding, that I would not need the ice pack provided. And I was horribly wrong. The epilator was worse that a bikini wax by far because it never seemed to end. As it ripped out each hair it felt as if I was being stuck by pins, over and over in multiple places. I tried to use deep breathing and all my other natural child birth methods to get through the experience, but I found myself having to take breaks every 10 minutes or so. Plus, because I could not see the hair I was pulling out, I had to go by feel and go over the same area multiple times. By the time I started the second leg I had resorted to the ice pack, but it did not help much. Needless to say my plans for using this on the underarms has been put on permanent hold.  They have a head for sensitive areas and show it being used on the underarms and bikini area in the instruction book, but I really don’t see how anyone could inflict that much pain on themselves. I think it would be wise for our government to use these devices as a mechanism for torture. There is no way any secrets would be kept once you got near a sensitive part with the device, and on a man this means anywhere. When they get a taste of what the epilator can do, they know they won’t stand a chance. But since I am a trooper, I will be using it again because I know the first time is the most painful and I strive to have my leg hair grow in thinner and silkier so that I will only use the torture device every three weeks. Beauty is pain.

This week I can’t get enough of tandem biking.  My new boyfriend was nice enough to track down a super cool racing tandem bike for us to ride.  This works because he supplies the vision and all I have to do is pedal and enjoy the ride. After about an hour of practicing the whole taking off and getting in sync, the next day we decided to take it on the road.  The next thing I knew we were riding 20 miles down country roads and taking some hills at over 20 miles per hour. The tandem bike is slower going uphill, but faster going down. Although I was saddle sore because of the narrow bike seat and a little burned on my back because I failed to use sunscreen, it was all worth the thrill of being on the bike on the road again. I felt pretty close to normal.  Our goal is to get up to an average speed of 20 MPH over 40 miles so we can ride with his bike club.  And at the rate we are going that should only be a month or two away.

So, I must cop to the fact that I met my new boyfriend on EHarmony (formerly known as EHellmony). He was the last guy that I decided to go on a date with before I asked it to send no more matches and cancel my subscription.  I am so glad I went on that date, because I met someone who had everything I was looking for. And I knew it right away.  We talked on the phone 3 times before the date for several hours at a time so by the first date I knew I really liked him. One date and one weekend later I was in a monogamous relationship and happy as a clam.  I think we could be one of those couples on the EHarmony commercial. Go figure.

I wonder why, at that point in which I gave up and decided to stop dating that it was the point in which the person I had been waiting for showed up.  I know I am not the only one that has that story to tell.  What has been interesting is how much I have had to work on being in a relationship where someone wants to take care of me and feels the same way about me as I feel about them. Caring, mutual respect and reciprocity seem like something that should have been in every relationship, but I am not sure it was in any of mine. I was used to being the one taking care of the other person and making the plans, and now I am with someone who is also a caretaker who likes to make the plans.  It is so wonderful and so foreign at the same time, and we are both working on letting ourselves be taken care of.

I was asked how it felt to finally be in a relationship with someone who could be my life partner, a relationship that I deserve. All I could do was cry. Because the answer is a mix of gratitude, wonder and at the same time a fear that you could possibly mess this up.  My boyfriend described it perfectly as seeing an oasis in the desert and, at first, wondering if it is a mirage. Then when you get up close and realize it is the water you have been wanting, you can’t seem to stop drinking it and at the same time you want to make sure that water does not go away so that you are thirsty again. 

In one of my recent blogs I talked about the importance of finding a person to share your life story with and to experience your life. Now that I have that I feel a little less unsure about my future, more calm and steady and more hopeful about what is in store for me and for us. I think I learned that there are people out there for us and that we do not have to settle. Being open to love and willing to date eventually lead to a loving relationship. If it worked for me, then it can work for anyone. So keep your eyes, ears and heart open and trust that you will find the right person, one day.

The blog will be on hiatus next week because I am on vacation!

Keep Moving Forward,

Beth (BLOVI) Medlock

June 1, 2011: Volume 31-The Birthday Blog

The Adventures of the Blind/Low Vision/Visually Impaired (BLOVI) Girl- Volume 31

http://www.youtube.com/watch?feature=player_detailpage&v=f2iWYE3Zbcc

I am calling this the birthday blog because my birthday is in a few days and getting another year older always makes me think about the process of aging and how I have changed and grown wiser.  So this week I am going to focus on some of the important things I have learned and ways I have changed in my 40’s. But first…………………..

My WTF of the week is the fact that I injured my neck while playing Cornhole.  Admittedly, before I went to the party where the game was being played I was thinking that cornhole was something else entirely.  For those of you who have not played it you throw these sacks filled with popcorn kernels at a slanted board with a hole on it.  The object of the game is to score points by getting your bag in the hole or getting it on the slanted board. I did pretty well for someone who is visually impaired because I kept adjusting the angle of the throw.  But somehow the repeated underhand throwing caused a severe pain on the right side of my neck and I can barely turn it or look upward. So be careful when engaging in cornholing, a seemingly innocuous but potentially injury causing game.   

This week I can’t get enough of the fact that I am going to get to cross off an item that almost made my bucket list. I am going to do a pole dancing class for six weeks over the summer.  Now I need to say that this is not a stripper training class, but an actual fitness class at a gym where I will be wearing workout clothes, not a costume. I am so excited about the class because it is a fantastic core workout and just one more thing I have in my repertoire.  I wish I would have taken the class earlier because while I was in Charlotte over the past weekend I happened upon the North Carolina Pole Dancing Championships.  Although, as a learned later the women had super long hair and bot much of a costume and the way that they were drumming up audience members was to walk around to bars in the area and flash people New Orleans Mardi Gras style.  So, in the end I don’t think this is a contest I would have entered because I am not much of a flasher. 

As I turn another year older and move headlong into middle age, I have realized that like a fine wine, I have grown better with age. There are so many ways I have matured.  I decided to put some of those ways in list form below.

1)    I care less and less about what other people think about me.  I have learned the point is to stay true to myself and what I believe and to act with honesty and integrity. I really cannot control how other people respond to me, so I don’t think much about it.

2)    I like myself more and am more comfortable in my own skin. I don’t obsess about my weight or even put on makeup every day and most days when I look in the mirror I like what I see.  Admittedly I can’t see myself all that well now, but I liked what I saw before I lost my vision and I still do.

3)    I can be happy alone and really enjoy my time alone more than I used to.  I now cherish having times for quiet and relaxation and just doing the couch potato sessions.

4)    I am more patient and lose my temper less often.  With the exception of my PMDD days, I am mostly calm and can let things roll off my back.  Gone are the days of being angry about the little things. I am not saying that I am not assertive when I need to be because I am, but I don’t get into yelling matches with, let’s just say a clerk at a fast food restaurant who gave me the wrong change and called me a liar.  And I have less people on my “sh*t list”.

5)    I have learned to focus my energy on people, places and things that make me happy and not waste it on things that don’t give back. Sure there are things I must do and people with whom I have to deal that are tedious, but I know enough to limit those. I am more selective about where I put my time and energy and don’t try to do everything well or be all things to all people because I have learned doing that will just cause major stress.

6)    I take more risks and have found that learning new skills is becoming more important than learning new information.  Maybe my brain is just getting full, but as I have gotten older my focus has shifted from learning about new things in an intellectual sense to learning how to do new things, like belly dancing, interior design, rock climbing, kayaking, and riding a bike. All these things I have learned in the last few years and they bring ne joy.  I still like learning new information and to expand my base of knowledge but it is taking a backseat to the experience of things.

7)     I find humor in more things.  So many things are just plain funny. I think the reason is because I am more of an observer of what is going on around me and less in my head. And I find that when you are an observer there are many things to find the humor in.

8)    I have learned that you don’t necessarily have to like the people in your family, but you have to love and forgive them when you can.

9)    I have learned to let go of the past and to focus on what is ahead of me. I don’t replay things in my head or obsess much about what I should have done or said. I know that the past is the past and my job is to learn from past experiences, not dwell on them. I know that I have the power to create the future I want and at the same time recognize that you never really have control over what happens in your life.

10)  I place less importance on being independent and realize the need for being part of a group and being connected to others.  I know that I really can’t do it all on my own and that relying on others is not a weakness, but a strength.

There are other ways I have changed, but the ones above are the most important.  And I do not feel old in any way. I have the energy I had in my 30’s and maybe even 20’s. I think I am still cool because I keep up with fashion and design and the latest bands (although I could be fooling myself). So if 40 is the new 30, then I am good for the next seven years. I may be more freaked out when I hit 50, but so far aging has been an OK process.  So here is to another year older.

Keep Moving Forward,

Beth (BLOVI) Medlock