Last night, around 11:00 pm, Danny gently woke me up. Apparently he noticed my body jerking, my arms stiff along my body. My fists were clenched and my mouth was foaming. I don't remember any of it, but after i woke I was completely confused and my head felt like it was exploding.
Danny is going to email Dr Liau to keep her informed. Hopefully she will also finally give us the results from January's MRI. The delay is because UW didn't send the MRI disk to LA until weeks after the scan. I have been constantly checking in with them, and UCLA. It has been frustrating, and I'm so grateful that I have a low stage tumor, a glioblastoma fighter would not be able to be so liberal with their time.
After discussing possible causes of the seizure, Dan and I came up with a myriad of reasons...
1. I'm stressed because I still have not gotten the results from my January MRI.
2. My body is still recovering from the brain surgery.
3. In just over a month I have flown to Germany and New York. Jet-lag is very hard on your body, especially when dealing with an illness.
4. Danny is working 12 hour days, 6 days a week. Our schedules are all messed up.
5. Girlfriends of mine are hosting an annual trail run, then they do a huge pub crawl. I had been planning on joining them, but they decided (after talking privately) that they didn't think I should come. I was only planning on going for the run, then visit for an hour or two, then my dad would come pick me up. I know I can't do it all, but I still want to see my friends. Hearing that my friends didn't think it was a good idea for me to join them was incredibly painful. The truth, in their minds, is that I am a liability. What people don't know, is that 90% of the time I pass on invites to get out and socialize for just that reason. By my girlfriends basically disinviting me, it conjured up deep rooted feelings of insecurity. I always worry that something might happen, that I might become too tired in a given situation, or that heaven forbid I have a seizure. I understand that my limitations cause me to not be the best candidate for social situations. I don't blame them though, for how they feel. That's the hardest part with your closest friends, you wish that they would want you around no matter what. That they would love to spend time with you, that they don't only want to be with you when it's convenient. My life isn't convenient. My life is unpredictable. And I never know how long my body will hold up. I should expect my friends to want me in all situations. I'm a lot of work. But it hurts. It just sucks.
I'm exhausted. It's time for a nap. My life continues to change - drastically in the past 24 hours. All I have is this present moment, and I have no idea what will become of me.
Ultimately, one could say they were right to disinvite me, judging by last night's events, but does that mean I'm supposed to just stay at home for the rest of my life? Or remain on couches. Play it safe and miss out on fun social situations? I don't have the answer, but I do know that I'm not interested in fighting to be with my friends if they don't have faith that I can conquer things. My dad offered to ride his bike as I jogged for the trail run, but it's not fun to try and include yourself when people are on the fence.
Shoot - all that you're going through medically etc aside, I'd be ridiculously upset over the UN-invite alone, not to mention all that it implies! That kind of uneasiness is the sort of thing that we take to our dreams so it's compelling that your seizure struck while you were sleeping.
ReplyDeleteDo try and remember that it is possible (???) that your friends are not dismissing you due to inconvenience...perhaps they fear that your desire to participate is stifling some rational thought and that you are not acknowledging - what they assume to be - your own limitations. It is very likely that they do care and are making a sort of "health care proxy" decision on your behalf.
Quite frankly, going for a run and then rehydrating with alcohol and liquor doesn't sound like a brilliant idea for anyone, regardless of health! (Sorry - that's just my 2 cents! :)
Take care!
I don't know how close these friends really are to you but I would have hoped they would have suggested another gathering with you that they deemed less stressful in order to compensate for their "fear" of what might happen. Kind of like saying hey we are worried about you doing 'x' so how about we all go out and do 'y' instead. So sorry for the feelings of rejection it causes - I can only imagine how it would feel given your situation because I would definitely feel left out. Try not to take it too hard though. You are doing incredibly and maybe they are unable to take on the responsibility or guilt they might feel if something happens. Sorry you had a seizure but as you always seem to do, listen to your body and give it the rest it needs. Your running and activity is incredible considering what you've been through. You are right too - jet lag is extremely hard on your body when there is nothing else going on.
ReplyDeleteAre you a journaler at all? Does it help to write out all of your thoughts and feelings - just scribble them out on the page. Sometimes that seems like a brain dump to me which unloads some of the anger, sadness, fear, etc.
Thinking good thoughts for you and Danny. And I hope you get the MRI results back soon too.
Julene =)
Don't be too hard on your friends or yourself. I am sure that they feel just as bad as you. They love you more than anything and want the best for you. Just think what's it like to be in their shoes. They want to help more than anything but don't know what to do. And more than anything they don't want to push you into anything that would make if more difficult for you or wear you down. It's just as frustrating for them as well. It was difficult for my family to let me make the decisions on how I was feeling or what I wanted to all do and how much I should be doing, and sometimes I didn't know better myself and they were right. So take it easy - on you - and them. They love you LOTS!
ReplyDeleteMy heart aches for you sweet girl!! I am so sorry you had a siezure and that it leaves you, once again, to be in such a questioning position. I am so sorry that you are hurting!! I hope that your friends are reaching out to you with explainations that help you better understand their choice that led to such a feeling of rejection. I would hope that all of your close friends would choose to be with you no matter what your emotional of physical state--just to be by your side and support you. I hope that they know that being your true friend means being with you even when it may not be the "funnest" but simply because they have the opportunity to be with you at all! I know of many times in my life where I have been asked to participate in things I know or wonder if I will enjoy, but choose to do so because my loyalty to the friend asking me and the moments I cherish with her always outweigh the actual activity we may have planned. For instance, if you asked me to go running with you I would say ABSOLUTELY! even thought I hate running, would probably have to use my inhaler and you would lap me three times...but it would all be worth it to be in your presence! And if you stopped and waited to me to catch up and pick myself up off of the ground it would melt my heart. :) Please know how loved you are, and that ALL of the things you listed affect your body, mind and perceptions as they are all draining physically and emotionally. I will be ok. Today may be hard, but it will be ok!
ReplyDeleteMuch love always, Maleka
Dear Jess,
ReplyDeletePerhaps your friends did not handle the situation & communication in the best way. Can't imagine they would not have your best interest at heart & thought they were doing the right thing out of their love & concern for your. Would it have been better to openly discuss it all with you-yes ! I hope you can leave the communication door open & they will be in touch with you to talk about what happened & why. Did they tell you the truth in their minds is that you are a liability or are those your feeling ? You have been through so very much in the past months with surgery, several trips, no MRI results, a seizure etc. I would humbly submit that maybe your friends made the right choice in your best interest but mishandled how it was communicated to you ?
All of us have friends that sometimes we feel "let us down". It does not mean the end of a friendship, or that they don't love us. It does not mean that they don't want us around, or that we are a liability. It means we do not agree on something, simply put. I have had many let downs by friends, later finding out, that is certainly not how it was meant! I tend to make my own reasons for other people's decisions, ( I am not good at it!). If the intention is with love and care, it is a good intention, even if we do not agree with it. I am sure your buds are trying to make the best decision for you, and for them, that's fair. I can only imagine that this hurts you, no matter what the intention, I am so sorry. Yes, you did have brain surgery, but you have such a tender heart, God bless and heal that tender heart. I pray for you that you can feel the love and support coming your way through this computer! I agree with the comment above about the lack of good communication from your friends. However, they probably were trying to not hurt your feelings, while trying to make a hard choice. Oh sometimes we are such girls!! I have thin skin, and I need to learn to not take everything so personal, good thing I'm still young (58?). Please know you are loved, remember that, and you are prayed for. Now, I hope you can breathe in the goodness of the day, and of life, and hold on to all the blessings that surround you...
ReplyDeleteSo sorry for your troubles Jess. Praying for you and hoping God will comfort you and give you peace.
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