Friday, February 1, 2013

Obstacle Course

I’m feeling like I need more sleep but I’m fighting for more time during the day. Its like my days are shrinking without my approval. I have to limit my visits because I don’t have enough strength to get thru more than that now. I’m becoming more and more irritable and needy. Snapping at people I love. It’s the unfairness of it all. I compare how other people get to spend their day and I’m not able to. The comparisons.

I’m afraid that If I ‘give in’ and sleep more then I’ll be forgotten, disappear.

Some people in my life are upset because they can’t see me when they want to see me. I have limited energy and time and its hard to get that across.  I don’t want people to take it personally when I have to book a visit with them a week from now. Its just how it has to work presently. I’m doing the best I can to balance out MY needs and others as well. It’s a dance that I’m trying to choreograph and soon others will take that position from me. For now its my job, with some help from a great website that helps families and people who are in need like myself. Its called I highly recommend it.

I wonder if/when I become bed bound that people will understand more about my limited amount of time to see them and to also talk on the phone or email/text? It ALL takes so much energy from me. I wish it weren’t the case but it is my reality now.

I still have things to do, I don’t want to take to my bed quite yet.

I went to the ocean with a friend the other day and I realize how important it is for me to be there and to be in nature period. To do things out there in the world while I can is so important to me now. I also want to go see some animals I just love so much. There is a local place that raises animals for many reasons, one being for beef and for turkey dinners but for other reasons too. I especially love the goats. LOVE GOATS!
They are a wonderful place, Wolfs Neck Farm, and I encourage you all to search out local places in your area and see if you can buy locally, your beef/chicken/eggs/turkeys/milk etc… Buying local is so important now more than ever. When you buy local, you keep one more truck off the road that travels across the country using gas and polluting. Buying local you support your local community and the money you give them stays in the local area. It really is a WIN WIN. Plus, I’m hoping that your local farms don’t feed antibiotics and growth hormones to their animals. I know I personally don’t want to ingest those things when I’m eating food. I have enough meds in me and don’t need to add more. Growth hormones could be one reason why breast cancer and other cancers are climbing high. Who knows?

Ok, enough lecturing for today. LOL

My point is that my body craves being near the ocean and trees and the natural world that I sometimes forget is out there and how nourishing it is. Hug a tree and you’ll know what I mean. No, really …hug a tree, close your eyes and try and feel the energy of the tree. Its incredible. I know it looks funny and all, but if you can say….to hell with what others think, and really feel the energy. I bet you you’ll feel better after wards.

I’m a tree hugger and proud of it! J

I was writing the other night about how my circle of support is getting smaller and smaller and that’s how hospice said it would get. Its still hard to accept. I need to realize that some people can’t handle being around someone who is dying. I am also realizing that I can not make anyone understand how things have to be now and how I have to spread out my visits. Also how I can’t always do things that people are comfortable doing. Being busy and avoiding the elephant in the room. Some people want to just go out and see a movie, or get lunch or do do do…..if I were to ask them to just sit with me and talk, I don’t think that could be possible.

I am trying to remember when I was on the other side of death, meaning when I was grieving for someone I love who was dying. I was in that spot. I wasn’t as close to some people at the time but became closer due to cancer and having something in common to talk about. I still got nervous and still didn’t know what to say. It IS a hard place to be. What does one say?

Well, what I want to tell people, is that there really isn’t anything wrong to say. I would caution saying anything that comes across as advice on how to fix the cancer or how to feel better or eat better. I know all of those things believe me. I would say to just treat me like you always have and there will be moments of “oh shoot, I wish I hadn’t said that”, and that’s ok, really it is. I will probably laugh and we can laugh together at it all. We are only human and humans make mistakes all the time. I’d rather someone make a mistake or seemingly say something wrong….than to avoid me all together.

I was also thinking the other day that maybe the reason why the “circle” gets smaller as I get closer to the “other side”, is because its so so difficult to imagine saying goodbye to ANYONE in my life. I’ve already had to say goodbye to a couple of people who just cant handle this, for their personal reasons. I still love them and always will, but I’m not going to try and convince them to keep seeing me the way I need them to see me.

I decided that I have to put my energies into seeing people who really WANT to see me and who are willing to wait a week to see me on my terms.

Believe me, I wish SO much that I could go out to dinner again, go see an evening movie, go see a band, go to kirtan at night. It kills me to not be able to do those things. Ive had to come to some acceptance that night time is not really a time for visiting anymore. Sad but true. Another thing for me to grieve.

I get reminded of how different some people think about my situation as I’ll call it…..

I get reminded of my decision way back in the Fall and how I’ve moved on and others have not. I saw a friend whom I hadn’t seen since before Christmas. They couldn’t believe that I wasn’t seeing a doctor anymore and not getting scans or MRI’s or whatever anymore. I had told this person my decision way back in the Fall and I know it was hard to take for this person but I was taken aback that they didn’t remember that that was my decision and to ask me AGAIN and put that judgment on me with disbelief? WOW!! That was a hard one to hear. I wanted to say….”Where have you been? I’ve so moved on from there!”. I guess they haven’t? We all have our ideas of what one “should” do at the end of our lives. I just didn’t appreciate the overwhelming fact that this person does NOT approve of my decision. I just quickly moved on to another subject. Made it pretty clear I wasn’t going to go down that road again, I’m so tired of explaining my decision. So tired.

That conversation made me check in with myself and see if I still feel ok with my decision and it was a resounding YES! YES! YES! No doubts whatsoever. Neither choice presented to me was going to be easy. I DO know I made the right decision for ME. End of explaining it to anyone. DONE!

Recently I’ve discovered that drinking water or any liquid that is the same “thickness” as water, is getting difficult at times, to swallow. I thought maybe it was just me with some neurotic things happening, but apparently it is quite common at the end of a persons life. It becomes harder to swallow due to the muscle dying or atrophying? Its hard to explain or to really know for sure….but that’s the gist I got from my hospice nurse. So in the near future I may have to get some kind of thickener for my water so I can take my pills and keep hydrating. I don’t think I want to discuss what comes after that point. Lets wait till that time comes to get into all that.

One of my hospice team workers said that its pretty common for people in my situation to start drinking heavily or start doing drugs a LOT. I can see the appeal sometimes. When the anxiety and frustration kicks in or the pain is too much or the emotional roller coaster is on high speed…..sure, I would LOVE to just check out. And I’m pretty sure I will do that in one way or another when it all becomes too overwhelming and difficult to manage. For now I’d like to be as present as I can for as long as I can. Not sure how long that is but that’s the idea.

One insecurity came up the other day when I was being “difficult” and needy. I thought that maybe I should start taking more and more meds or start getting stoned on whatever vice I have to do so, so that my family and friends who have difficulty with my irritable side will have an easier time dealing with me? Why not? I’d be quieter anyway right? LOL, …oh this is such a journey like no other journey….wow!

I believe there are countless ways of doing things, countless ways of experiencing life, countless ways of learning and growing and dying.

I am so very grateful for all the love and support I DO have around me. I am very blessed. It may not seem like it at times when I’m complaining or processing as I like to put it, but really…I am so lucky in so many ways. I smile every day at my cat and my plants that seem really happy and to all that I am able to do. I hope I thank my support peeps enough. They are priceless to me.

There is still so much good quality of life here for me to experience. I’m not ready to go yet, not even close. I’m just having some road blocks to maneuver and some bumps to hop over. But I’m still going forward. Even if it may seem like I’m going in a zig zag sorta way.

Love one another


Humidx said...

Jenn, I love how honest you are. You make me cry and laugh at the same time.

Oh yeah - you are awesome!



Anonymous said...

Thanks again for sharing, Jenn! I love you!


Me From Maine said...

Good Morning, Jen.

Do you remember the movie Avatar? You know that greeting they used of "I see you"? It made a big impact on me when I saw the movie, and in this moment it is the best phrase I can use to start out this comment!

I see you. I am really enjoying what I am seeing, Jen. Thank you for showing all of us what your journey is looking like for you. As I've said before, for me personally it is connecting me with things inside of myself that I rarely allowed myself to connect with.

I really appreciate you writing that there is no "wrong" thing to say to you. I would have to say I have made some of the mistakes you mentioned in your post, but I am thankful that you continued to speak with me and allowed me to evolve.

It is my opinion that we are all in various stages of dying from the day we are born. We don't like to think about it that way, of course. I like that you have been able to say your goodbyes to people who have chosen this particular point on the amusement park ride to step off.

Your ability to have compassion for them in their mixed feelings about watching the rest of your journey really touches the heart. The fact you recognize that it is not for a lack of love for YOU, but rather their own issues shows how much you truly look deep inside of people around you.

I hope you can feel me psychically holding out a hand to squeeze yours today. It is a hand of friendship. It is a hand of listening. It is a hand to remind you that you are not alone. It is a squeeze of comfort and a quick burst of love.

You don't have to be Polyanna. It's as ok to be grumpy and have needs as it is during the times when you are exuberant. It is part of YOU!

I also love the ocean! I have always gone there for healing and connection. When I was in college in NY, I would get this odd salt smell in my nose that I would finally recognize at the ocean (and I was upstate with no ocean in sight. I'd then make a point of driving back to Maine for the weekend to stick my feet into my ocean.

I could literally hear the ocean saying "Welcome home" as I rounded the Dunes from the parking lot and the ocean would finally come into sight for me. I could feel the love and the connection to everything that is as my feet hit the water. The sand under my feet would seem to absorb into my skin and become a part of me.

I also love hugging trees (and sitting with my back against the trunk to read a good book on a sunny day). They also connect me with every other living thing.

I read a really sweet story once that basically said we become trees after we die....with our roots in the earth and our leaves reaching up to the cosmos. I've always loved that idea.

Sending love today ~ Val