More Change

When I was diagnosed with brain tumors and knew I was going to have to have brain surgery, my biggest fear was that I would wake up from the surgery different.

For the past 3 years I haven’t really felt much change.  And, thankfully, when I woke up from the surgeries, I wasn’t different.

But lately, something is changing.  And I don’t like it.  It’s scaring the hell out of me.  My balance is getting much worse.  The vertigo episodes are happening more often.  I feel like something is under my feet and I’m going to trip and fall.  These things are happening more and more.

And, there’s no going back to what once was.  Meaning, there is no pill I can take that will make this better.  No procedure that will make the vertigo episodes stop (or at least if there is one, I’m not willing to do it right now).  There is no magic elixir to help all these symptoms go away.  (I’m even frustrated with Yoga because it’s not helping with my balance and I was hoping-beyond-hoping that it would.)  This is what happens when you have 2 brain tumors in your cerebellum.

Did I think I was invincible?  Of course not.

Did I think I had escaped any effects from the brain tumors/surgery?  Kind of.

It’s getting real.  And I’m scared.

But let me say something here:  If you know anyone who has a chronic condition, whether it be cancer or brain tumors or anything else, while you may mean well trying to be a cheerleader, it’s not as simple as “changing your thinking.”  Because BELIEVE ME – if it were, I would have done it 3 years ago.

Please don’t tell me to “change my perspective” if I tell you something about the brain tumors.  Because that tells me you’re not a safe person for me to share my life journey with and you think you can “fix” me or Lhermitte-duclos Disease.  And, while I appreciate you trying to cheer me up, this can’t be fixed.

Sometimes, I just need a friend.  Someone to listen.  Someone to give me a hug and say, “I’m sorry, Heather.  I’m here if you need anything.”  That’s it.  Nothing more.  No pep talk, UNLESS I ASK YOU FOR ONE. 




9 thoughts on “More Change

  1. It must be so scary to start feeling those changes and to not feel any control over them.
    My daughter has two rare diseases. I hear you about the “pep talk” thing! I always hesitate sharing my fears and the stress related to caring for my daughter. I never know how people will react. I dread the comments like “Well, at least she doesn’t have…” or “Oh, don’t worry, it will all work out…” or “You should be grateful that….”. There’s such a desperate need to have people’s support and love. But, when people don’t validate you and they try to minimize your situation it does more harm than good. I’ve decided that the “pep talk” is a coping mechanism for people. It’s a sign that they are totally uncomfortable and afraid. They aren’t prepared for or willing to feel our pain.
    What you really want and deserve is just to be validated not to be treated like a problem to be “solved”. Because, as you know, the problem can’t be solved. The “Safe” people in our lives are the ones who don’t try to solve anything. They know how to be active listeners & silently supportive. There’s no greater treasure than to have someone in our life who is not afraid of feeling our pain and being willing to walk through it with us. ♥ – Holly

  2. THIS TOTALLY SUCKS!!!! I’m sorry you’re feeling this. Dealing with this. Thank you for sharing it with us, and telling people what you need. That’s beautiful and strong. And, I’m sorry Heather. I’m here if you need anything.

  3. Oh my. I wish we lived closer to each other so I could be the one to give you a huge hug and tell you that I will do anything I can for you! I feel like we’re on the same boat but different lakes! I’m so sorry you are getting more vertigo. I understand how scary it is to have a symptom return.

  4. People are people. They tell you to change your thinking because they are uncomfortable and don’t know what to say. Doesn’t make it right. Human nature.
    I have hope for Heather (and a hug for her too)

  5. No pep talks here. Just hope for you — and lots of admiration for your honesty and your strength. My thoughts are with you, Heather …

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