All Alone

I figured if any doctor could actually put a name to this disease that the loneliness of it would dissipate. That I wouldn't feel so isolated and alone. That my world may again matter to all those that had been too busy with their lives to see what my life was like or the disease plaguing my entire being.

Well, I now have names and diagnosis'. I have lots of them. I have a whole laundry list of disease names and problems they are causing. I have diseases that have brought on entire symptom packages with them. MS, Cerebral vasculitis, autonomic neuropathy, small fiber neuropathy, Sjogrens, non-epileptic seizure disorder, paralysis of the esophagus and the list goes on and on. 

When the doctors decided to put me on chemo, I struggled. I think that was a reality check for me. Chemo. The worse medication known to man, or the thing that sends fear into most.

For some reason, I also felt like it may seal the validity of my illness, if I must endure chemo.

I think I believed that having chemo meant that the help, support and those rallying around me, like I have so desperately needed and wanted, would finally come. And, although I was terrified to start chemo, I felt that at least this latest diagnosis and corner would be one I didn't have to walk alone.

Before the chemo and the diagnosis, I truly believed that if people understood or had a clue what my life really entailed, then they would care.

And at first, it did enlist help. The first couple weeks, people came, they called, they dropped off food, they made sure I was ok. Then they realized that it wasn't "real chemo" but just medications I was taking and they dropped like flies.

It didn't matter that the pills were because I was too sick to tolerate iv infusions. It didn't matter that the type chemo I am given is one of the worst and nastiest out there. What matters is what people believe. Everyone has their own opinion of what others go through and endure. They see through their own lenses.

And since I was able to endure the cruise, well, then the rest of this must not be real. And again, I found myself facing this disease, day in and day out, almost entirely alone. Even help from the ward stopped.

I have been on chemo for almost two months. Most people endure cancer or chemo treatments for longer. People don't rally for a day or a week but for the duration. I only mattered for a few short weeks. As time continues to move forward, my support system and those that love me, grows fewer and fewer. Each week, another person, whom I thought would never leave me, fades away.

This week was an all time low, no one asked how I felt. No one called to check on me. No one stopped by. It was me and Hayden during the day and Thomas to help in the evenings.

This week was my reality check. What happens when Hayden leaves? Goes to school? He should be starting 9th grade and high school in a few short months. He should be hanging out with friends and living his life. Instead, he helps to take care of a sick and dying mother. He helps me when I am vomiting so hard that I cannot climb in or out of bed. He gets me what I need. How unfair for that to rest on a fourteen year old boy. But what choice do I have? Luckily, Hayden doesn't want to go to high school but wants to take online classes. He loves the freedom of home-school. If not, what would I do? Rely on Max and Maya, the puppies, to help me?

This disease takes such a mental toll. It takes all the strength I have to continue to fight each and every day. Every single morning, I have to endure unbelievable pain, as I try to get my body moving. Each night, I plead sleep will come over me. The fight and struggle is real, even if no one can see it.

Don't get me wrong. I pray for those that have cancer and must endure chemo. I am so grateful that they have the village it takes to make it through the fight. That they have those who love them enough to stand with them. I look at all those on Facebook with friends and family and acquaintances that surround them and encircle them as they face horrific challenges. I pray for them. I offer up pleadings that they will be made whole. I try to send messages and  find ways that I can help make their walk a little less miserable. I understand the misery of it all and pray that I can help ease their burdens in some small way.

Then, I find myself wondering why I must do this with so few around me. What about me isn't enough, isn't worthy or doesn't matter? What have I done so wrong that I am not worth fighting for? Have I really lived my life in such a way that I am 45 and have less than a handful of people that even love me anymore? I don't know what is harder... living my life knowing that I don't have anyone to turn to or even ask for help anymore... or wondering if I died, if it would really matter to anyone outside of Thomas and Hayden.

And so tonight, I find myself in a huge dilemma...where do I go now? What do I do? I may be 45 and in terrible health but what can I do to change my life and make it what I need? How do I make the changes required to once again be someone who is loved and cherished by others? What can I do now so that when I die, Thomas and Hayden have those to surround them?

And just in case there is anyone that still reads this crazy online journal of mine, that I write for Hayden and his future family, Please pretend that you never saw this. I am feeling bad enough about myself and do not need a pity call. I've climbed out of deeper holes and no this is nothing more than another trial and another challenge that I must face. I have faced harder challenges than this and I am sure the challenges around the next curve will require more effort from me. This one has just made me really sad.