The Most Precious Gift

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.

Hope is a Butterfly

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.

Self Pity :)

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.

I Give Up

Friday I received my long term disability application in the mail. I never thought that it would come to this. I have officially become one of those that I have scorned. In my mind you are never too disabled to work, what the hell has happened? What is happening to me?
To start off, I have become a terrible friend. Exhaustion and pain has forced me to cancel plans with friends. I value time with friends more than anything else. Yesterday, for the first time since March I worked. I worked for 6 hours at the farmer's market. Following this, I had plans to spend an evening with friends. As happy as I am to be productive, after a 6 hour shift I was so fatigued that I could not follow throught with the evening plans. See what I mean? Bad friend! How long will it be before everyone gives up on me?
I'm sick of me!
I'm in mourning. I'm grieving what I perceive to be the loss of the life that I cherish. Today my positive attitude is gone and I feel as though I have nothing left.

Time to Transform

Today I am eating whatever I want! I enjoyed a Burger King veggie burger and fries for lunch and tonight I'm having a cupcake! 
On Friday I left my rehabilitation program feeling energized, motivated and strong.  I'm improving my endurance and strength and I'm not stopping there! I feel the need to also improve my appearance along with my confidence and self-esteem. I'm going on a diet! I do admit that the cruel comments from a family member and my need to be accepted by him play a role, but for the most part I am doing this for me.
Today I received a large styrofoam container that holds the tools I need to achieve the new and improved me. I will eat the frozen meals along with sensible snacks and I WILL achieve my goal. There will be triumps, temptations and disappointments on the way. I've never taken this journey before and invite you to come along via my blog.  Won't you join me?
Xoxo

A Very Good Friday

I'm ashamed to admit that lately I have been too self-absorbed. Being at home a lot will do that to a person! Today I entered the fold of beautiful people and was inspired by their zest for life.
We took the hour long drive to Onoway for a long overdue visit with my mother in law. As she lives in an assisted living facility I was concerned about her living conditions. Tim and I were greeted by a bright homey place. The facility reflected warmth and welcoming. We quickly found our way to Tim's mothers room. I was saddened how time has ravaged her. She is very thin, almost gaunt, and has lost use of one of her arms as a result of a stroke. She led us to the dining room where we could visit over coffee. On the way there she was happy to introduce us to her fellow residents.
Once we made our way to the dining room I felt as though I was entering someone's living room. The kitchen staff and residents bantered back and forth as though they were family. I know my mother in law to be an introvert with no interest in socializing. She immediately took part in the conversation and banter. Two ladies joined our table and we got into a lively discussion.  These spunky seniors have a debate club. They debate abortion and same sex marriage! 
For all intents and purposes, these people have lost their freedom. Many have lost the ability to move freely in the community. There is one meal served at dinner, they have no freedom to chosse what they want to eat. Despite this, they embraced the freedom they have to chose happiness, to cherish friendship and to enjoy life. I saw this change my mother in law to someone who is engaged with others. People in this circumstance have every right to become self-absorbed, but they didn't! What was meant to be a pleasant visit, was a true eye opener for me!
Xoxo

Priorities Priorities!

I have been off work for the last month focusing on getting my health and strength back. I'm delighted to say that I've made some small progress and I know I'm going to come out on top.
Being at home has been brutal! I love to get dressed up everyday and accomplish something, its how I roll. Notwithstanding this, my job is not my life or my identity. It is a means to have enough money to enjoy my life and a great place to make friends.
This morning I was talking to my sister and she asked me when I was going back to work. I won't know until I begin my rehabilitation program next week. I told her that as eager as I am to go back to work, my number 1 priority is my health, family and friends. She then continued to lecture me on my bad attitude and lack of caring about my job.  Wow! Check out the judgement! She was aghast that my job is a means to have my life and is not my life.  I'm not going to lie to you, at first I was pissed! After some reflection, I'm now sad. Our working years don't last forever and during our working years we build a foundation for our retirement. My foundation is not only financial, but social and emotional. I can say with some confidence that my retirement will be full of love and friendship. If my whole sense of being was based on a job where I was easily replaced where would that leave me.
Remember that although we can be replaced at work, we can never be replaced in the important relationships in our lives!
Xoxo

Karma and Come-Uppance

I have never defined myself by what I do for a living. Family and friends have always come first and work was a means to afford the life that I want. When the work day is over, I do not give work another thought until the next day.
Despite this, I like to go to work.  I think everyone needs a purpose.  Not only that, I love socializing and dressing up every day! -:)
I have to admit that I judge others who don't work.  I do get tired of hearing how people on AISH, WCB or welfare don't have enough to live on, are marginalized etc... My position has always been that no one is ever too disabled not to work in some capacity. In the back of my mind, I've often wondered if my scorn is a result of my fear. I have always been afraid of becoming like those "disabled" people. I only want to rely on me.
Fate can be crazy sometime. In the past few months I have begun to deteriorate quite rapidly. I am sad (and VERY ashamed!) to say that my body is refusing to cooperate and I'm finding myself at home more often than I am at work. Have I given up?  Hell to the NO!!!! I will consult with my neurologist and any other people in the know on how to get ahead of this and get back on track.
The fear remains that I won't get past this and somehow I will need to adjust to new limitations. Although I do not define myself by work, I can't imagine my life without it. How will I fill my time and where on earth will I wear all of my clothes? Tim and my friends encourage me to focus on enjoying life if this happens.  Their advice is to volunteer with causes that mean the most to me, to take time to take care of myself and to focus on what's important. I hope it doesn't come to this.  Despite the fact that my job is pretty thankless, I will feel totally useless without it. Sure I can and will follow the kind advice of loved ones if my health continues to deteriorate, but I will be ashamed. Sadly, this shame and self-loathing will be compounded by the family member who sees me as an obese embarrassment and who always finds ways to blame me for everything bad that happens to me.  
I am afraid of what the future brings and I hate uncertainty.  Today I am focused on keeping my eye on the prize and beating this bitch before it beats me!
xoxo

I feel guilty enough...thanks for making it worse!

When I reflect on my life I realize that I am one lucky woman!  I was fortunate enough to be born in a country that is safe where women have the same rights as men.  I have never gone hungry and I have always had a roof over my head.  I have a loving husband and an adundance of friends who I love. Although I don't love my job I am grateful for it.  Without it I couldn't enjoy the life that I do.

When I'm grieving the gradual loss of control of my body, these are the things that I keep in mind. Do I have it better than a woman living in Afghanistan? OK..that's a no brainer.  I have heard many times that "all you need is your health."  I beg to differ! In my opinion, all you need is the freedom to chart your own course in the world.

It is an unfortunate reality that I have to rely on the kindness and compassion of the wonderful people in my life.  It is the one thing that I don't think that I will ever get used to.  OK....truth be told I friggin hate it!  There are many things that I will never be able to do for myself - drive myself to work, paint my toe nails or scrub the kitchen floor.  (The princess in me isn't too upset over the last thing!)    

I could not imagine being one of the special people in my life who do so much for me.  There are no words for how I feel about you.  Truly, I couldn't live without you.  Even while you are doing your best to help me, sometime you are hurting me.  I feel so guilty that you have to do it all, I do.  I can hear your sighs and I can see your eye rolls.  I can feel your resentment in your passive-aggressive response.  What can I DO to help, there's lots, just let me know what you need and I'll do it.  Please don't feel like you have to do it all, you don't.

 

Chaos! When will it end?

Everyone who knows me knows that 2011 was a craptacular year in the Young house.  For those of you who don't, I won't bore you with the details!
Yesterday Tim and I added a new member to our family, an 8 week old Pomeranian bichon cross that we have named Anderson Cooper. (OK...Tim had nothing to do with the name, it was all me!)  Now my home is my haven of happiness which is normally peaceful, very neat and very clean.  As of 2 o'clock yesterday this all changed.  Little Anderson Cooper entered our home with a vengeance!  All of a sudden my peaceful and TIDY retreat has become a mess of puppy toys, puppy wee wee pads along with several other supplies.  How does a little 2 pound puppy create such a mess?  Not only that, Kailey, my 8 year old Llhasa is not happy! She is withdrawn and sort of sad.  Doesn't she realize that we not only got Anderson Cooper for us, but for her so she can have a buddy? He will never replace Scooter, I realize. I know that it will take time for her to adjust, but....
But he is an adorable little ball of fluff that I have already fallen in love with.  As I look around my messy kitchen (yikes!) I realize it is all worth it.  There is nothing like sharing your life with an animal. For now, I will adjust to the clutter and Kailey will get to know her new buddy.
I doubt that life will be as it was last year this time, it will be different. Life is all about adjusting and embracing change.  Little Anderson Cooper represents hope for a better year ahead and what it means to have unconditional love.
xoxo

Thursday Musings

It's a blustery Thursday and I am home because I am not well enough to work.  SMA has taken hold today and left me incapable.  I will fight this bitch and tomorrow is a new day...
I am grateful for the beautiful comments from my beautiful friends, I love each and every one of you.
Tomorrow will bring about a change in the Young household, we will welcome a brand new puppy! I have decided to name him Anderson Cooper. Why Anderson Cooper? Why not? He is my hero and I admire his journalism and talent.  With that being said I'm a little disappointed that he sold out by having a daytime talk show. I think he should let me take over the show and he can go back to covering wars.
Our home as felt so empty since we lost Scooter. We all miss him so much.  His ashes has been returned to us in a beautiful wooden urn that has a plaque on it that reads "Scooter-The Handsome.  He sits on our fireplace and I talk to him everyday.
Here's hoping that tomorrow is a better day!
xoxo

So here we go!

I have been thinking of started a blog for a long time, but I couldn't think of what would be remotely interesting. After some thought I have realized that I am a unique individual with a story to tell.
I'm a 42 year old woman who was lucky to meet and marry my best friend Tim. When I think about it, it really has been a long road getting here with many bumps on the way.....
I have a disease called spinal muscular atrophy. This truly is the least interesting thing about me, as I have it, it doesn't have me! Despite this, it does affect my life as I use a wheelchair and deal with increasing paralysis as time goes on. Does this piss me off??? Of course it does, but since there is nothing that I can do about it I just move on.
My passions in life are animals, fashion, food and friends. Two weeks ago we lost our dear dog Scooter to cancer. I could never have imagined the pain losing him has caused. Love of all kinds can be bitter sweet and painful.
Just like most women I am concerned about appearance and weight. My disability has caused a crooked back and managing my weight is a huge issue. Unfortunately I have a close family member who insists that I am "obese" and an embarrassment. Not only are they disgusted by my weight, but also my sense of style and my tattoos.  Does this hurt? Hell yes!!!! Does this affect my self-esteem? No shit Sherlock! However, I can not change people's perceptions of me and I have to accepts myself. And I have..I'm the perfect version of me!
Dear reader, please accept and love the perfect version of YOU!
xoxo