Wednesday, January 14, 2015

Please Forgive Me

Sometimes I wonder what the hell I've done over the (almost) five years. What have I even done? Am I even contributing to society? Am I helping enough? What you guys don't see is that I get so tired. I get these brain flu episodes. I can't explain it; I can't anticipate it. When I don't feel well, when I can't get my brain to unfuzz, I don't blog. I don't complain about it, or write about it very often, because I figure it comes with the territory. I have had three brain surgeries, and with that comes damage of the wiring, of my thoughts. I'm missing healthy brain tissue, tissue that I'm sure the little sensors in my body are still searching for. Anyway, I usually give symptoms a period of time before I panic and post, and now it has been about a month of living in silence. I have been having horrible headaches, but they're only on one side of my head, the side with the tumor. It is just as my original brain tumor headache arrived, it started all over my head, then it shifted and it was only on the side of my brain with the tumor. I could (and can) literally feel the barrier of my midline (the halfway point between the two hemispheres in the brain) stopping the progression of pain. To have this type of headache right now is absolutely terrifying. My next MRI is in April, and I do not want to push it up sooner. If the headaches, and confusion, and exhaustion continue then I will revisit. That may seem different than the usual Jess. I'm known for not putting things off, but there's a fine line between putting things off and not being an alarmist. In the meantime I'll focus more on diet, lowering inflammation, and regular exercise, and meditation, and prayer, and rest.

I'm wondering if a portion of it is stress, these issues, or the majority for that matter. Another thing that I don't tend to write about is that I get contacted daily via email, text, phone, by other friends with cancer, and also several times a day new people find me. Right now two of my closest cancer friends just found further metastasizes. And that was just in the past 24 hours. Those two girls, along with another of my closest friends who also has active stage 4 cancer, need me. And I adore them. I love them. Then I get other people that need help and direction, and I'm happy to do so; those emails are a joy. I want to help people survive, but then I get other emails, so so so many of these emails, of people that don't tell their husbands, their parents, their siblings, their children, that they are battling cancers, and tumors, or diseases, and they come to me for camaraderie, and to vent, and to find a source of support. But the thing is that I am only one person, and I am already exhausted, and scared, and trying to remain healthy. Stack on top of that, my friends whom I adore, whom I want to save, whom I want to cure, whom I want to be around for decades and decades. I want them to be around for a lifetime. And I'm virtually helpless. I'm stuck here. I'm just me. I research for them, I brainstorm, but it's not enough. I want to do more. I want to be there. I want to take it away from them. I want to be the superhero that snags the ticking time bomb of cancer and flies it away at supersonic speeds to another galaxy, returning in the nick of time so that we can all be saved. (Sorry neighbor aliens.)

I want to help everyone. I want to give you strength, but each time I give my strength I have to be replenished too. I can not continuously give. I can not be everyone's rock. From the time I was young I have internalized other people's plights. I was one of those kids who would cry for starving children. When I read your emails, when I hear people's fear, I feel it. I can not live removed. So what I have to say right now is that I am asking those of you who reach out (and as you read this please know that there are tens of people daily, this is not singled at any two or three people) and are carrying the burden in the dark to open up to your friends, and family. Not only will you need that strength and love and support, but also, as my dad recently reminded me, it makes them feel better to be a part of the journey. They appreciate being involved. They want to help us. Of course, you don't have to do anything you don't want, but I guess this is my cry to you, I can not carry everyone else's burden. I can carry a few, but this is not normal stresses. This is life and death, and my friends are a high need group, and in order for me to be a good friend, and be able to handle the reality and research and emotional support to help them, I have to focus and know my limits.

I feel horribly guilty that I can't be everyone's friend, that I can't have relationships with everyone who reaches out. I hear the fear in your voices. I feel what you feel. I want to help. I want to fix. I am so sorry that I can't do it all. I'm so sorry that you're going through this. Even though I'm writing all of this, I hope that you still feel comfortable reaching out if you have direct questions. I really appreciate it when they're short. It's especially the long emails that get me. It takes so long for me to read and think and analyze - it zaps me. I am incredibly capable, but I have limitations, and I have to be able to triage. I can't be attached to my computer and phone all day, it isn't healthy. And the subject matter is so heavy, so dense, so dark.

I'm sorry that I had to post this message. There is nothing more that I want than to help, but I am only one woman. And I'm not trained for this. I'm not built for this. And my heart, which thankfully is quite large (probably big like my huge noggin), is reeling. It is deeply bruised, and hurting for my two First Descents camp friends who have had such horrible news. Fucking cancer.

I'll leave you with this quick video, it's about angiogenesis and cancer. There aren't any great anti-angiogenesis drugs for brain cancer that will cure, but don't forget that food does matter. We can eat things just because we're hungry, or because it makes us feel temporarily better, or we can make our food serve a purpose, to make it count. There are all these little things that we can read up on and learn about to take charge. I'm not trying to imply that diet is enough. I'm only imploring you to get curious, read up, research, Google stuff, and find what empowers you. There are so many times with cancer when we feel helpless, and scared, but there are actions that can help. Never give up. You are capable just within yourself. In any moment you can make choices to change. It's all in you.

10 comments:

  1. If I could give you emotional support, I would gladly do so. I wish I could shoulder some of the anxiety and exhaustion you are feeling. Focus on yourself and let your friends take care of you for a while.

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  2. Jess - Thank you for such clarity, truth and wisdom. So many of us take on too much, give more than is realistic. We only have a finite amount of energy and it is easy to loose perspective. We all need to practice discernment, know our limits, pick priorities, set boundaries, restore ourselves, be truthful, choose wisely, create balance. Especially those who have compromised health. Thanks for setting us straight. Please take care of yourself.

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  3. I want to leave you with two thoughts for whenever you like. Sort of a Short and Sweet...

    1. Often times, pain can be a sign of healing.
    2. You must take care of YOU before you can adequately take care of anyone else.

    You are an inspiration on even your darkest days.
    (Ooops! That was three! :)

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  4. Fully agree with Gina "You must take care of YOU before you can adequately take care of anyone else." Without guilt!

    Love you always XOXOX

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  5. Jess,

    Yes, Yes, Yes you have contributed. Enough. More than enough. Above and beyond enough. I say this with absolute conviction based entirely on the Jess who I know through this website. Research. Ideas. Wisdom. Honesty. Candor. Support. And so much enthusiasm. I can only imagine the effect on those fortunate enough to be your friend or family. Enough? You have absolutely done more than enough. A very wise person once told me that "guilt is a wasted emotion." It is not productive, and doesn't really get you anywhere. A worthy contemplation, sometimes easier said than done for those of us who are perfectionists .... Rest. Breathe. And surround yourself in a green blanket. And know, with 100% conviction, that yes, you have done enough. THANK YOU!

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  6. The Starfish Story
    A young man is walking along the ocean and sees a beach on which thousands and thousands of starfish have washed ashore. Further along he sees an old man, walking slowly and stooping often, picking up one starfish after another and tossing each one gently into the ocean.
    “Why are you throwing starfish into the ocean?” he asks.
    “Because the sun is up and the tide is going out and if I don’t throw them further in they will die.”
    “But, old man, don’t you realize there are miles and miles of beach and starfish all along it! You can’t possibly save them all, you can’t even save one-tenth of them. In fact, even if you work all day, your efforts won’t make any difference at all.”
    The old man listened calmly and then bent down to pick up another starfish and threw it into the sea. “It made a difference to that one.”
    Even if you make a difference to one person, it means the world. You are one woman, and a strong one at that. You have worked harder in the last 5 years than you have in your lifetime. You love, help, care, research; the list goes on. Bottom line is that what you are doing makes a difference. Although it hurts my heart so much to see what you have endured, there is a reason you are here and going through what you are going through. I thank God that you have such a supportive, loving family and the perfect soulmate; your strength and the strength they give you enable you to help so many so much. Never doubt that you make a difference and have a purpose; just think of all of the people that don’t contact you, but who check-in on your blog religiously! And remember…you have to take care of you before you can take on the obligation you feel to help others and, if someone can’t accept that, screw them (that’s a little harsh, but I’m a bit protective of my favorite Jess, too). Stella and I pray every night that you will continue to have your health, energy, support, and your spirit (which, in my opinion, is likely one of the best in the world). Take care of your wonderful, beautiful self! Love you, Winnie

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  7. Oh, sweet girl! Do not anguish over those you have not helped but wrap yourself up in gratitude for those you have! Rely on your instincts when you reach out to others and open your own heart to let in those that can help you. There is tremendous power when you feel the strength of others sharing your burden, lifting you up; as well as a simple statement of "I know" while your hand rests on theirs, tender mercies will comfort your heart. Rest well and know you are loved!

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  8. Love you Jess, Rest relax & regroup!!! You are the best and so very loved by many.
    Take good care of you....Love you
    Linda

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  9. Could not agree more with what everyone wrote <3 You ARE love and YOU are loved.
    Maleka

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  10. You are deeply loved Jess! Relax, rest and just rejuvenate YOU! Much Love, So Cal Patti

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