She's losing her words. I called this morning to check in. When I asked her what she was doing she replied "wiping things". "What things" I asked. After a pause I could sense her frustration. Awkwardly she replied "the big black thing in the kitchen."Over the course of the last year, I've watched her change and fade away. Initially, I enjoyed the change. The woman who was cruel and hateful was soft and sweet. Instead of constantly demeaning me, she wanted into my life. Everyday she will call and ask "do you need any help today". In truth, her "help" is often a hindrance. Prior to Alzheimer's cruel hand grabbing hold of her mind, she was immaculate. Now she will forget to wash the dishes or the laundry with soap. As "helping" is now so important to her I will trail her with a watchful eye.She was rarely patient or kind with me. I had to leave the home that I grew up in to escape the cruelty that was my childhood. Now the tables have turned. Although my body is weak, my mind is strong. I too could be cruel and dismissive in her time of need, but I can't. Time is now short. I am unable to erase the pain of the past, but I can now build a relationship with this stranger who is my mother.
The holiday season was never much of a holiday for me. There was always stinging words, stress and hurt feelings. Last year we did what any sane and financially secure individual would do, we flew to Mexico on Christmas.This year was different. Tim had pointed out all of the changes that are taking place in mom. Its hard to say, but this is likely as good as she ever will be.
Because of this, we opted to hold Christmas dinner one last time. As opposed to the stress cooking a huge meal puts on Tim, we decided to cheat and have it catered. This decision was scorned by my sister.Our relationship has become increasingly tense and complex. I always feel as though I have to justify myself to her. Over the last year I have experienced a dramatic decline in my strength and function. Sadly, this has left me unable to work and unable to participate in my previously packed social schedule. Instead of concern, she meets me with scorn if I am unable to go over to her place or go for dinner. Christmas Eve resulted in an argument and hurt feelings. She invited me to join her and our parents that evening for takeout Chinese food. As I have to rely on Tim to help me start my day before he goes to work, I must rise everyday at the ungodly hour of 3:30 am.
Instead of accepting my explanation, she simply told me she is not interested in how I am doing and she only asks so I don't get mad.
Initially I was angered by her reaction. "How dare she treat me like this?". "Doesn't she realize how difficult this last year has been?" I then remembered someone who I used to know who also had spinal muscular atrophy. She went through a period of time where she experienced a dramatic decline. Instead of showing the compassion that I should have, I was dismissive of her difficulties. I always thought that she was awash in self-pity and simply didn't try enough. Behind this was fear. Fear that this could happen to me. Fear that I was looking at my own future. She is no longer wish us and I wish that I possessed the maturity at the time to face my fear. This is why I am no longer angry at my sister, perhaps she too is afraid.
Despite the difficulty that the holidays bring to me, this year I received a precious gift. I received the gift of reflection and compassion towards others. Somehow I received the insight to look beyond what is in front of me to see what is inside others. For that I am grateful.
Today I met up with someone who I used to know, me! When I awoke this morning, it was different. Like a beautiful butterfly exemplifying happiness and strength. I couldn't reach out and touch her, but I could see her.
My battle with the asshole named SMA will never end, this is true and I accept the challenge. The cloke of dark depression that was and still is impeding my attack is lifting, ever so slightly.
Yesterday was the most near to perfect day that I had in a long time. In 2005 I decided that it was time to step it up in the beauty department, so I chose an up-scale salon. At this salon, I had the pleasure of welcoming Angela into my life. Her genius and creativity gave me the style I was looking for! More importantly, I made a dear friend who is now one of the most important people in my life. I love her dearly and value her friendship. Yesterday she came over to my home for my monthly "grooming" appointment. As usual she did a fantastic job of my hair and made me feel like a million bucks. More importantly, I was able to spend time with someone with whom I have mutual support and caring. It makes an amazing difference to have friends who truly understand and do not judge you. I am truly blessed to have Angela in my life.
Following my beauty session, Tim and I had plans to join a group of wonderful people for dinner. This made me afraid. It has been months since my body has allowed me to follow through with evening plans. I have been an epic failure in this department as of late, saddly I always have had to back out because I simply wasn't able. Obviously this led to incredible self-loathing.
With all of this being said, last night was different! I donned an outfit that reflects my unique sense of fashion and did it! I enjoyed the company of several wonderful people. Although I was still in a great deal of pain, I was alive and free! I was once again in the fold!
Today I feel a new beginning. A beginning of hope and joy. That beautiful butterfly is still out of my reach, but not for long.
I hate to be negative, but this has truly been the worst year of my life. I'm sitting in front of my fireplace watching my 2 beautiful dogs rest peacefully side by side. I was fine when I woke up this morning, not happy, but fine. I've become used to wasted days at home waiting for my body and my depressed mind to wake up so I can resume the life that I miss terribly. It then occured to me that as a result of my exile at home, I have not done the things that mean so much to me over the holiday season. I have yet to enjoy a glass of wine and a laugh with any of my dear friends. The friends that I am so afraid to lose as I am no longer interesting. Due to my lack of participation in the outside world, I have nothing to contribute. Sure I can tell you about the failure of my body and mind, but that's hardly interesting.I have a coworker who feels compelled to remind me of how jealous of me she is. Not for reasons that I would appreciate, but rather the failure of my body. She informs me that she is jealous that I no longer work full time. Despite my protest that this is a horrible fate, she persists.Eventhough my job does not define me, I'm lost without it. I long to be a productive and engaged member of society again. I fear that even with my best laid plans my present will become my fate.I will admit that I am awash in self-pity and self-loathing. The walls are closing in and all I want is my freedom returned.
