Dear anita,

Thank you so much for your support! I am very touched that you looked up the condition and offer suggestions that may help him! As usual, you are right on target. In meeting with the doctor, he suggested slow movement exercises to increase muscle strength and control so I asked him about Yoga, Tai chi and meditation for relaxation (which he said all 3 were perfect for him). Emmett is not a social person so I doubt that I could convince him to join a group but any suggestions that you come across that he and I can do, I will certainly look into!

His doctor started him on medication the same day as the meeting but the medication comes with side effects. One side effect is that it causes narcolepsy (which I witnessed today for the first time). Emmett confided to me later that he no longer feels safe to drive a vehicle due to the tremors and muscle seizures (and now narcolepsy). I know that this is a small set back but it seems to make the whole situation so real. It’s all so much to take in. While the condition itself isn’t fatal, it certainly is life changing for us both.

I started this post because I have been trying to figure out my life after having a massive heart attack last October. I was so scared of an uncertain future. Now, one year and one week later, I’m feeling that same fear as a result of Emmett’s diagnosis. I know that, in time, I will adjust to facing each obstacle as it comes along but for now I just needed to say it… that I’m scared.

Take care until I hear from you again,

~Shipp

Dear anita,

I hope you dont mind but I’m going to reply to your post in the morning. We let our family and friends know about Emmetts diagnosis today. I’m so emotionally drained that I just want to go to bed.

Until tomorrow, take care

~Shipp

Dear anita,

OK, I’ve been able to take a deep breath today and try to regain some focus. I want to try to maintain the focus of my posts here on my second chance to grow into the person that I want to be. Obviously my journey has taken a twist and there are now other factors that will affect my life but I had to remind myself today that this is still MY life. I still have my search for peace and understanding that is my own to pursue.

Something that has become more clear to me is that I feel firm in my decision to reduce contact with my family, as long as they continue to behave as they have. I no longer have mixed feelings overshadowed by guilt, no temptation to give in like I would have a week ago. I’m now firm in my thinking ‘MY life is too short and IS important enough not to be wasted on situations and people who cause me to feel bad about myself’. If my family were just people that I had met, and they acted as they do, I would not hesitate to shake my head and walk away, no matter to me. BUT because they are people who I love (and who are supposed to love me too), I’ve put up with their ‘junk’ and tried to MAKE a relationship work. I’ve realized that I can’t force a relationship to give me what I need. I’ve realized that my family aren’t doing their ‘junk’ on purpose, its just who they are. They are people who I don’t like. I love them but I don’t like who they are and how they behave. I’m tired of putting myself in the same situations over and over, expecting a different outcome. By accepting that they are who they are and that they aren’t going to change, it releases me mentally and emotionally to let go of that hope of change and be free to live my life separately and emotionally healthy.

I believe that sometimes things happen in your life that are meant to be in order for some greater reason. (If event A wouldn’t have happened, then event B wouldn’t have ever happened). In light of Emmett’s diagnosis, I’ve been doing a LOT of thinking. One truth that has taken seed within me is: I matter; my life matters. This is something that I’ve struggled with for years. It’s one of those things I tell myself but never truly believed. Now, even though it’s in a seed formation stage, its a truth that I do believe. It’s a breakthrough for me. It’s a truth that I now feel comfortable with. I DO matter.

Something else that I have been thinking about is my fear. I think Ive shared that I’ve lived my life being afraid (of chance, of circumstance, of the future, of taking risks, of reaching for the life I want to myself). I’ve read that (paraphrasing here) when the ego sees a situation as a threat, it produces the emotion of fear to persevere itself. If you look at a situation that you fear, and ask “what is the worst possible thing that could happen?”, then logically approach the worst possible thing and deal with it, you then remove the fear of the situation. (I hope that made sense). The seed of truth that is forming goes something like this: The situation of Emmett’s illness… what is the worst possible thing that could happen… can I face that and live through it… the answer is yes, I would physically survive… ok, well, if I can survive that then the other smaller things that I fear, I could survive them too.. so maybe I AM strong enough to face my fears and survive.. I CAN do this after all. Like I said, it’s a truth that I’m still trying to fully grasp but I could fully accept and embrace it, oh how my life would change!! One thing that I’ve always hated about myself is that I’m always afraid, so be fully free from that would be life changing!

There are mind game questions that I ask myself to entertain my brain. One of those questions is: who would you be, if you were free to be as you like? I have answers such as: I would be bold, seizing the moment as they happen. I would do things that I am passionate about. I would connect with so many people as possible, in a meaningful way, etc.
It’s hard to do those things and be that person when you are are fearful. Being free from that fear would be a life changing experience. It’s something that I’ve struggled with for years. I’m so close to being able to fully grab hold of them truth (that I CAN do this) that will, I think, set me free. But I have to fully believe it first.

Another thing that I’ve come to realize today is: if I give all of myself, into taking care of Emmett, there’s nothing left for me. Like I said at the start of this post.. this is MY life. There is no one who is going to say “you look tired, you should take a few minutes to rest”. If I don’t say that to myself, its not going to happen. I have to eat well, sleep well, take my medicine and vitamins, and do so many other small things that keep me healthy emotionally and physically. This includes taking time for myself to read, to share on here, to explore and seek out truths for my own life journey. I have to give my best to myself before I can give to others. I won’t go as far as to say “love myself” (because that’s something that I’m still struggling with) but this is a start in that direction.

Anyway, I think Ive made some pretty good advances, in 24 hours, by getting some much needed sleep and taking some time to stop, breath, and think about myself first for a change. I look forward to forward to your thoughts, as always.

Until we talk again, take care of yourself

~Shipp

Dear anita,

Thank you so much for your kind words and encouragement!! I’m going to have to save your post because you recapped so nicely.

Today has been a slower pace as I have found myself doing more and becoming tired more quickly. It’s now 10 pm (as opposed to my usual 2 – 4 am time of posting) and I’m going to retire shortly. I did want to share some things with you first.

You recently mentioned how Emmett’s diagnosis fit in with the title of my thread. I think that I am beginning a new, unexpected chapter in my life. As you read in my last post, his diagnosis has influenced me to gain clarity about aspects of indecision for me. I think the changes that are to come will influence the person that I become. For example:
When I was growing up, my sister always called me “the strong one” (she still does call me that)… and I hated it and still do hate it when she does. I hate it because I wasn’t being noble or heroic, I was just a scared kid who was too stubborn to let my mother break me (or let anyone see how much I was hurting). I had no choice I HAD to be strong to survive it.
Fast forward to present day. I realize that I will need to be strong in order to help Emmett. I have a choice. While I would not walk away from him because I love him so much, I do have that choice.
The influence comes in because I can choose, of my free will, to be “the strong one” and I can be proud that it is part of who I will become.

Another similar influence is that I have found myself doing things that I have previously not given any thought to because he did them. For example: splitting firewood. I’ve previously left it to Emmett to take care of. Today was a bad day from him and I knew that he couldn’t, so I did. And it gave me a good feeling of accomplishment and brought back found memories (as a kid, it was my job to help Daddy when he cut and hauled firewood). Today also gave me confidence that, just because I haven’t done something in a while doesn’t mean that I can’t do it again and be successful.

The first couple of days this week we’re filled with shock, disbelief and numbness. Since I took that day off, when I didn’t post but rested instead, it feels like I have been snapped out of a fog of confusion that I have been living in for many years. I see myself, my life and my world in a whole new light. I feel stronger, more confident in my own abilities and more decisive about what I want (and what steps I need to need to take to get there). I have noticed (thanks to you and our posts) that I am able to clearly communicate with Emmett and my daughter during some really tough discussions recently. I feel a true leader stepping forward within myself…. I’ve never felt comfortable leading before and always wanted to be second place… but now I feel comfortable and confident leading with a gentle, open, loving and listening way.

In a very short time frame, I have shrugged off a lot of ‘junk’ that I’ve been carrying with me for a long time (stuff that I didn’t even need to be carrying with me). It’s like feeling trapped in a room, when your kicking the door and yelling and carrying on… then you realize that the window was wide open the whole time. It’s just a matter of shifting your focus and your free.

I realize that I am riding the bubble of discovery right now and things may change soon to burst this bubble, but in the mean time, I want to get as many thought out as possible so that I can, in moments of feeling down, come back to these posts and read, in my own words, the wonderful discovery that I have made.

I once asked you something to the effect of ‘how do you change a belief that you have about yourself’. I think this is part of that process: you find as many basic truths that you can, use those to seek out other truths about yourself, list these down (like you recapped my post) and come back to them in moments when you need reinforcement. ☆Rinse and repeat☆ lol.

To be honest, I can remember when I’ve been as kind to myself as I have been these last few days. I’ve been taking my comment about taking care of me seriously. I feel relaxed (even though it’s a stressful time for me), competent and confident. I look forward to continuing to build an upward cycle.

It’s about 40 minutes until November 7th. My mother’s birthday. Do you know that I haven’t felt this sense of peace since she died? I don’t feel all of the negative emotions that I have in previous years. I’m about to go to sleep untroubled and I think that tomorrow I will be able to fondly celebrate the good that we had in our relationship and remember the mother that I loved (and be at peace about the rest of it).

Until we talk again, take care

~Shipp

• This reply was modified 7 years, 6 months ago by Shipp.