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futuredreamsPWL

A Reblog that is still so important…

Where to begin. It’s been awhile since I wrote. A lot has happened. Many changes, new places, people and life changing events surrounding me.
I feel like I’ve been pushed from every direction. Do this do that, want, want, want… and I’m the person most come to to vent, talk or ask for advice. I sit here this early morning wishing I had that person to call to vent, to ask “what do I do”, etc. But I don’t. Those closest to me are dealing with their own demons right now. I’m just another burden. So I pretend. I pretend I’m all right. That the traveling and changes aren’t affecting me. I hide my inner and outer pain. I hide and I pretend. Yep, that’s where I’m stuck.
Somehow in the midst of whatever chaos that is happening (which doesn’t directly involve me) I’ve been shut out. Was never that way before. Conversation has stopped. Is it because I’m sick? Must be. But my reactions I cannot help because I am sick. So, yes, in a way, it’s all because of this horrible disease that I would give anything to not have. I lost an amazing relative as my friend and confident. I dont know how or why. Maybe they dont understand me “now” or they just felt I should have done more. But honestly, I dont even know what “more” is.
I recently read a fellow friend’s blog who has the same disease. The reactions to her feelings and her everyday life literally took my breath away. How can anyone be so cruel and so disrespectful when you are not her.. or me or anyone else. We are all different, yet experiencing the same symptoms of this disease. Another friend wrote how she felt so alone but at the same time, being alone, just “going away mentally” is what she needs. I feel the same. Some days I need someone, anyone. Other days, just “mentally checking out” to deal with it all. It’s not wrong.. It’s what we do to keep sane and not give up. We all react to change, stress and events differently. We may not be able to react the same anymore, but how we react is “who we are now!”
Does it hurt, yes sometimes. But the bitterness coming from others because of it is beyond hard. As I’ve said before and so has others, you will never know unless you have this disease. It sucks! Nothing I can say other than that.
Understanding, patience and respect – regardless of good days and bad days – is all I ask. I don’t think that’s too much to ask. But I guess for some it is. They take it personally. It never is – it’s just us. This disease. Research, read my blogs, my fellow PWD’s blogs.. learn, educate and listen. A simple text that hasn’t been responded to or an email not followed up can truly put us in a state of despair.
You see we still love, care, feel, can hear, can talk, can see and we are still human, with feelings too.
I’ve lost so much. I’ve seen so much hurt and disappointment. I feel so helpless and more times than not, completely hopeless.
So why do I continue to fight?! Well, at first it was for my family. It’s why I pretend to be “fine”. But now.. what’s the point. All I see is struggle. Worry about how I’m going to feel or what’s going to make me happy. I dont even know myself what happy is anymore. I miss so much. I miss so many people. I miss me!
It’s an uphill struggle with no help and climbing with no net below. I’m lost. I’m scared and yes, I’m alone. I think I decided my future a few days ago or maybe it was a week. At this point, why shouldn’t I just be put in a lovely home surrounded by those with the same disease and people who are “trained” to understand and to deal with our everyday struggles. I see no point in being a “part” of anyone’s world anymore. I just bring everyone down, depressed, helpless and struggling. Just let me “go”. I’ll be fine. Then those I love, can live again. Go where they want, be who they want and not worry.
I’ve lost family and friends. I’ve lost my identity. I’ve lost my father and brother. I miss the mom who knows me. I guess I just want to be “lost” too now. It’s easier.
This disease is the worse though some may differ. At least with a different terminal illness you have a “date” or a plan or hope. If not, at least closure. With this disease – none of that is possible. One of my neurologists said it perfectly – “you’ve reached the end of my scope. There’s nothing more I can do for you.” So that means I have less than 2 years now before I forget all I know, be completely incapacitated in a wheelchair and surrounded by strangers. Then the years to follow will just be years… nothing. Null. Can live this way for 10 years, 10 months or days. No one truly knows because we are all so different. But you see, there’s no “end”, no date, no hope, no closure. Just suffering. Keep that in mind when you think other things are so horrible. At least you can see it and deal with it and finally move on. My loved ones can’t. I see the struggle everyday with my mom and my sister who is taking care of her. I see it with my friends who are struggling, alone, being attacked by those who don’t understand, afraid, desperate, depressed, sad and ready to give up.
I always try to see the good in everything and everyone. Every horrible situation, I look for that silver lining and try to remember it could always be worse. I try and be grateful to God for the food I have to eat, the bed I have to sleep on and the clothes I have to wear. The things many take for granted, because they want so much more than just that. Sometimes those things are the “riches” for those who don’t even have that. I wish more realized that. No, I dont want to be where I am now. No, I hate the way I feel and I hate this sickness I have and the symptoms. I hate the endless pills I take and the everyday shots I have to endure. I hate it all. But you have a future, you have hope and you have the rest of your life – to love, to rise above, to accomplish and to be who you feel is truly you. I wish I had that.
So where is this blog going.. I have no idea. It’s just been such a long 6 weeks of struggles, let downs, hurt feelings, break downs, pain, sleepless nights and the unknown. You truly have no idea.
I just want those I love to be happy. I dont care about me anymore. I lost that feeling weeks ago. I know I’m not the only one with this disease that feels this way. Does that make it better.. in a way yes, that someone understands, but no, because its not fair. So those in my life – please step forward, reach out and help those close to me that need your help. Because of this stupid disease, they wont reach to me anymore. They dont want to burden or disappoint me. But they need all of you. I’ll be fine. A fighter to the end, even if it’s fighting from inside a place of peace.
To those I’ve lost. I’m sorry for whatever you feel I’ve done. I miss you. I love you and I’m sorry this disease has taken the “me” away.
I wish – for a friend, someone to talk to.. but I’ve lost that too…

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