I Lost TJ One Year Ago Today

Wow! I don't even know where to start. There are times when it seems like only yesterday that TJ and I had the world in the palm of our hands, yet there are times that it seems like he has been gone forever. My life has changed so much over the past year that when I think about it I am overwhelmed. I am overwhelmed at what I have been able to accomplish without TJ, I am overwhelmed at the support from my many friends and mostly I am overwhelmed that TJ is actually gone.

Since losing TJ I have spoken to lots of other widows and read quite a bit about the experience of widowhood and losing a loved one. Most all agree that the one year mark is not as big a deal as you would expect it to be. For me it is a huge deal though. When I look back on the past year I am proud of my many accomplishments and I am proud of how far I have come since this same night one year ago. I had lots of decisions to make as others do in my same situation and I feel confident that TJ would be proud of my decisions.

I know I am better because I now have many more good days than bad. I no longer get weepy when I see TJ's personal items. I no longer think about TJ constantly. I have gone whole days where he did not cross my mind and when I realize that I haven't thought about him all day I don't feel guilty.

I am beginning to appreciate my own life more. I spent the last seven months of his life caring for him. He knew how much I loved him. Now it is time to love myself! This experience changed me immensely and I will never be the person I was before TJ's diagnosis. I am beginning to accept my "new normal" and even enjoy it.

I can't express enough how much the support from my friends and family has helped me. Additionally the support I have found on twitter is absolutely priceless and I thank you all (you know who you are!). I have even gotten a lot of support from old friends in Indiana via Facebook. What all this means is that anytime day or night when I needed someone to listen or even just a friendly conversation to take my mind off things someone was always there. It may have been the middle of the night here in Arizona but it was early morning for my friends in Scotland or Ireland. There was also the friend that told me, "I will leave my phone on all night, you call or text if you need me" and this wasn't just an empty offer this was heartfelt and honest (thanks Melissa).

Then there are my girlfriends here who are always thinking of me and worried that I will be alone on significant days. They got me out of the house tonight for pizza just so I would not be home alone and I so appreciate their thoughtfulness. My favorite (and only) sister who I know too is just a phone call away and would drop anthing to be with me if I asked. My brother, who we don't talk as much as we should but I know his love is always with me. I could go on and on but I will suffice it to say that I am very lucky to have such wonderful friends in my life.

We meet people in life who touch our heart, who we won't ever forget, but it is the ones who touch our soul that we remember for an eternity.

TJ - I still love you whole bunches and I always will!

Change

"Change is the only constant." - Heraclitus

One afternoon this summer when the girls had come over for a swim one of them looked at me and said, "Don't you ever feel like you need some change in your life?" I said, "Seriously?!!! Are you kidding me? Don't you think I have had enough change in my life in the past year?!!!!!"

I don't like change. I don't mind a little adventure once in a while but on a day to day basis I am a very structured person. I even plan my weekends in advance so I will know what is going on.

When TJ was sick my life changed on a daily basis. I never knew what the next day was going to bring....what new side effect would plague TJ, was he going to have a good day or a bad day, was it going to be a bad enough day that I needed to stay home from work to take care of him, would we end up in the Emergency Room and if we did were they going to admit him. I hated the uncertainty of every day. It was at times terrifying and I felt like I had no control over my life. TJ felt all of these same things too. On the days that I would stay home from work to care for him he would always tell me before I called my boss to let him know I would not be in..."tell Bill I am really sorry" Oh how that would break my heart. He was going through enough without having to feel guilty about me missing work!

When TJ passed was when I really had change in my life. I thought at the time that I was going to finally be able to breathe and get into a routine...Boy was I wrong about that!! Once again every day brought something new to my plate. In the end he was not able to help around the house or help feed the animals but he was there to bounce things off of. If something was wrong around the house I could ask him what I should do and he could walk me through it. Now he was gone and I only had myself to rely on, no one to bounce ideas off of, no one to help me solve household problems....just me.

I am pretty handy and self sufficient but I had gotten used to TJ taking care of things and it was overwhelming me to have to do it all myself. I felt like I worked tirelessly when I got home from work before falling into bed. Then when I had to move...wow! Try moving a home you and a spouse have lived in for 14 years all by yourself. Sure, I had help with the actual moving part but it was still overwhelming. I still have boxes in the garage of TJ's stuff that I need to go through.

Well, I have been in the new house for about 6 months now and even though I am not fully organized I feel as though I am into a routine. Once the initial move was over I began to take a little time for myself every day by reading, which is something I really enjoy. Even if it was only 30 minutes, it was still "me" time and it felt really good. I also am starting to stay home on the weekends more to do projects around the house.

I have begun to set a new course for my life and am taking better care of myself. I am choosing joy over sadness and rising above my pain. My life has taken on a whole new meaning and direction and I am making the choices about how, when and where I spend my energy and I am confident in the choices I am making.

Yes, not being able to start the chain saw to trim trees made me cry and wish TJ was here to help...but it only lasted a minute or two and I moved on. My trees still aren't trimmed but it will get done eventually.

I still don't like change but I have learned to turn it into a positive and run with it.

"What lies behind us and lies before us are small matters compared to what lies within us" - Ralph Waldo Emerson

That Ain't Nothing

I had a similar conversation with two people today. When you have been through a life altering experience it changes you. I don't know if it is good or bad but it changes you nonetheless. These life altering experiences come in many shapes and forms but if you have been there then you know what I am talking about.

If you haven't been there then I am very happy for you but I am also here to tell you that those of us who have are no longer sympathetic to your sniveling about small stuff. And believe me....it is mostly all small stuff to me at this point.

I will not go into details about the trivial things I hear people complain about but it is time for all of us to stop and think. Is my life really that bad? Is what I am complaining about really a big deal? Do I know someone who has been through something much more difficult than what I am complaining about?

I heard a story this week from a widower that in my opinion was way more tragic than what I went through with TJ. Yes, we grieve the same for our loss. But, it also made me think....quit whining Sandy, it could have been worse.

Shortly after TJ was diagnosed we frequently used the phrase, "it's just small stuff, don't sweat the small stuff!". This became our mantra when he was going through treatment. Try it! You will be surprised how much easier life is.

"It Brought Me To My Knees"

"It Brought Me To My Knees"....we have all said that at some point, but has anything really "brought you to your knees"? By this I mean in the physical sense....made you literally drop to your knees and cry or pray in anguish. I have been there and it is the most intense hurt that a human can endure. I know you are thinking that this happened when I heard TJ's diagnosis but it was at that time that I mustered more strength than I knew I had, there was no way I was going to let TJ see me as being weak at that point, he needed me strong and I was determined to be there for him.

What brought me to my knees was our government...to be specific...our Social Security Adminstration. Don't stop reading...this is not a partisen political rant. When TJ was diagnosed he was told that he could no longer drive because the 20 brain tumors could cause a seizure at any time. His job was a boom truck/crane operator so this meant that overnight we lost half of our household income and were faced with mulitple copays on a daily basis. We had insurance but the copays were about to add up quickly!

My first order of business was to get him on disability...the doctors gave him a year to live at the most so I thought this would not be a problem. I helped him to apply for disability and assumed it would kick in immediately. Disabilty payments aren't much but they are better than nothing. His disability was approved within two weeks of application....

Then.....I spoke with Social Security and this is how that conversation went:

Me: I received a letter that "TJ" has been approved for disability

SS: Yes, he has been expedited

Me: When will he receive his first payment?

SS: There is a mandatory six month waiting period

Me: Are the payments retroactive?

SS: No, after 6 months he will receive his first payment

Me: No money for six months? Did you not see that the doctors are giving him less than a year to live?

SS: Yes, I know, people die all the time waiting for their disability to kick in.

Me: ??????????????????????

Me: Is there any way we can expedite this?

SS: No...6 months is mandatory, he will receive his first payment on October 20th

Me: Thank you....goodbye

Now, our income is cut and our expenses because of copays have gone up....WTF???!!!

TJ worked hard his whole life and this is the treatment he gets?!

An hour later TJ found me in our master bath, door closed ( I didn't want him to see me), curled up in a ball on the floor....crying hysterically...how were we going to make ends meet?!

Our own Social Security Adminstration "brought me to my knees" and let me tell you...it is an awful feeling. Not only is TJ very sick but now I don't even know if we can make our house payment and afford his treatments. They tell you that treatment will never be refused....BULLSHIT!! pay your copay or no treatment today!

I had a wonderful family friend that offered to step up and help TJ & I so I was very fortunate. I paid her back after TJ passed but I know not all are so lucky to have a special person help them like TJ and I were.

Nobody (until now) knows my reaction that day. When I should have been strong for TJ I was breaking down...when I should have been the one telling him that it was going to be OK, it was him telling me that. He was such a strong man through it all!

If you truly have never been "brought to your knees" it is my wish for you that you never will be. The pain lasts forever.....

TJ was diagnosed on March 13, 2009 and passed on October 25, 2009, he received his one and only disability payment on October 20, 2009.

We survived...no thanks to our Social Security Administration helping a very hard working man!

Am I bitter?.....yep, just a bit

Mid Life Crisis Thoughts

I wanna have a mid life crisis. TJ did it before he died. He bought a little car to build. Unfortunately he didn't get to finish it & enjoy selling it for a profit before he passed. My girlfriend just bought a Harley. I wanna have a mid life crisis too....it seems like fun.

I just don't know how this mid life crisis thing comes about. I have lots of useless things I would like to buy but I am just too practical and can't justify them to myself. Should I quit trying to justify or quit being practical.

Now I have the fear of an impulse buy that I will regret.

What are your thoughts?

Have you done it? Do you wanna do it?

Sounds like fun doesn't it?

Don't we all deserve to treat ourselves?

Life is short...........

In Memory of Donald Wilhelm

We lost another great man to cancer this week, Donald Wilhelm. While I only knew Don virtually he touched my life in a profound way. Don was one of the first people I met on twitter when I turned to twitter to help TJ through his cancer treatments. I had a twitter account that was all about horses, but when TJ was diagnosed I ditched that account and started a new one in hopes of finding help for TJ with his treatment side effects. Very few of my "horsey" twitter friends followed me to my new account and in many ways I understood why. When I found Don on twitter he stepped up to the plate right away with suggestions to combat the side effects TJ was experiencing and introduced me to other cancer fighters & survivors in the social media world.

TJ, who often made fun of my being on twitter, soon realized the power of talking to those who had "been there, done that" and many times would say to me, "Get on twitter and find out what to do about this!" I have @DonaldWilhelm to thank for steering me in the right direction early on.

When I met Don he was a 4 time cancer survivor and even wrote a book about his experience you can buy his book here. I highly recommend reading the book. Don was an amazing man, he was an inspiration to everyone, his words of wisdom were beyond his years, his perseverance was unending and most of all his love for his soulmate, Amy, is undying.

After TJ passed I spoke to Don about the many conversations TJ and I had after he was diagnosed preparing me and TJ for the inevitable. He told me that he and Amy had many similar conversations. As I am now comforted by those words spoken between TJ and I it is my hope that with time Amy will be comforted by the conversations between her and Don.

Thank you Don for all you have given to me and countless others and thank you Amy for sharing your wonderful husband with the world.

When Death Comes

When death comes like the hungry bear in autumn;

when death comes and takes all the bright coins from his purse to buy me, and snaps the purse shut;

when death comes like the measles-pox;

when death comes like an iceberg between the shoulder blades, I want to step through the door full of curiosity, wondering:

what is it going to be like, that cottage of darkness?

And therefore I look upon everything as a brotherhood and a sisterhood, and I look upon time as no more than an idea, and I consider eternity as another possibility, and I think of each life as a flower, as common as a field daisy, and as singular, and each name a comfortable music in the mouth tending as all music does toward silence, and each body a lion of courage, and something precious to earth.

When it's over, I want to say: all my life I was a bride married to amazement.

I was the bridegroom, taking the world into my arms.

When it is over, I don't want to wonder if I have made of my life something particular, and real.

I don't want to find myself sighing and frightened, or full of argument.

I don't want to end up simply having visited this world.

~ Mary Oliver ~

Don definitely did not just "visit" this world, he had a profound impact on anyone who's life he touched. This was Don's last post (actually posted my Amy) on Facebook and I think it says it all:

I’ve filled my original goal here on earth. It was to spend the remainder of my life helping cancer patients. It seems to be where I found the greatest joy and the most sense of worth. I’m moving up into the next roll. I’ll leave my faithful followers to slip in and fill the gaps. Love to you all and positive energy,

Don Wilhelm

I Spread TJ's Ashes Last Weekend

I have written before of the conversations TJ & I had after his diagnosis. Many of them involved our past and many involved my future but we also had to discuss his final wishes. He told me what he did and did not want medically speaking, he told me he wanted to be cremated. We even stashed the money in the house for his cremation so it would be available in cash when the time came. While we were very organized in "finalizing his affairs" it hit me one day that he had not told me what to do with his ashes.

When I asked him where he wanted his ashes spread he told me without a moment of hesitation...."The Hideout, I want my ashes spread at The Hideout....do you remember how to get there Sandy?....(me)yes, I think so.....then take Charlie and Mike with you, I don't want you wondering around in the desert on a horse carrying my ashes and crying because you can't find The Hideout". So, The Hideout it was and the conversation was never brought up again.

Since he passed and I really had to think about spreading his ashes for real, I have been thinking..."TJ, WTF! could you have made it any more inconvenient?!..a 3 1/2 hour drive to the shack then a 45 minute horseback ride to the hideout!!" For those that don't know, we own 10 acres in southeastern AZ that we built 2 "shacks" on and set up horse pens. This property was to be for our retirement home but meanwhile we wanted to use it with our friends. The land borders state land and is only about 1/4 mile from National Forest.....beautiful riding country.

"The Shack" or "Love Shack" as TJ preferred to call it! We have to haul water and there is no electricity, but TJ built wood burning stoves for each one for warmth in the winter.

I just like this picture so I threw it in. TJ is in the roundpen with Arnie. We bought Arnie as a weanling and I trained him for TJ....he turned out to be a really good horse!!

We have lots of friends that wanted to be involved in the spreading of TJ's ashes at the hideout but I just didn't feel like having a big party at the shack so I chose one friend to go with me and not tell anyone else. I borrowed a horse trailer (we sold ours when TJ got sick for medical bills) and last Friday after work I loaded up both of my mules and all 3 of my dogs and headed to the shack. On Saturday morning we saddled up and headed to the hideout.

When we arrived I went inside alone....talked to TJ for a moment and spread his ashes. While it was a sad moment for me it was also very heartwarming that I was fulfilling his final wish and knowing it was what he wanted did my heart good. We rode back to the shack in silence.

I am sure all of you reading this are saying....."What the heck is the hideout?" Here is the story. It was the early 1900's and the Powers brothers (2 of them) went to town to register for the draft. The postman told them they did not need to register and that he would contact them when it was time for them to serve. He did this because there was a mining claim on their father's property that was in demand. The postmaster then went to the sheriff and told him the brothers refused to register. The sheriff gathered a couple of his deputies and went to the Powers' ranch. The father came out of the house first and was killed by the deputies. The brothers continued to fight it out and eventually escaped the property. One brother had an eye wound so as they headed south in Arizona they needed to hole up for a bit to heal. Where they holed up is known as "The Hideout". They then continued their trek south, heading for the Mexico border. They were apprehended before making it to the border and both were sent to prison.

This is not a story you will find in your history book but is very well known by the locals down in that area. "The Hideout" is still pristine as it is very hard to find if you don't know what you are looking for and is at the base of the Dragoon Mountains. Upon entering you can even see the hole in the top that was cut out for fire smoke to escape through.

TJ loved the local history so this place was very close to his heart and he enjoyed taking friends there and telling the story to them. I was proud to spread his ashes there knowing how pristine it is and I can always think of him being in a place he dearly loved.

If you look closely you can see the door to "The Hideout" in his picture. That is all the pictures I will post as I want this place to continue to be as undisturbed in the future as it is now.

I chose this past weekend to spread his ashes because today would have been his 50th birthday. I threw a big party for him on his 40th and we had planned on having another one for his 50th....TJ loved celebrating his birthday!! I thought it would be nice to put him to rest on his birthday weekend....I still celebrated him, just in a different way than I had planned.

I Love You TJ......Happy Birthday!

If I had known my heart would break, I would have loved you anyway.