Translating love.

I am reading a book about the language of love, how people express their love for others and I think how people interpret how they are loved.  The book says there are 5 ways we express love:

1. Affirmation
2. Quality Time
3. Gifts
4. Acts of Service
5. Physical Touch

My way, not sure yet.  Depending on the person I think I do all of these.

How does my brother express love, I think acts of service or quality time.   It is definitely not affirmations or physical touch (he is a one arm hug kinda guy).  He gives laughter, bakes, remembers small details about someone, helps in times of need. 

Right now we shower him in all forms of love.  We are drowning him with it, desperately trying to find ways to show we care, how much we care.   He is probably tired of it some days, overwhelmed with the level of attention.   But I can’t help thinking what a privilege we have to be able to do this.  Even if we are going a little overboard and annoying the crap out of him.

And while he is flooded with all our waves of love I also think how lost he must be thinking he no can no longer show his love.   He really hasn’t lost it, but he probably thinks he has.    He can no longer do as much for others, but he can still give quality time.  He feels like people must be bored spending time with him now.  What he does not realize is the time we spend with him now is so important, at least to me.  None of it is wasted.  Even if we just sit and watch episodes of Glee.  Every second is worth it, he is worth it.

He knows how much we are all crying, how that must crush him.  When he has spent so much time showing us his love by making us laugh, it must drive him crazy to hear our hearts breaking.

Pause for the cause.

Normally I am a very impatient person. I hate waiting for anything.  I usually multitask all day long, physically and mentally. 

I have patience in one place in my life, helping my brother.   Everything my brother does seems to be in slow motion.  It is so hard to watch him do things for himself, I just want to reach over and do it for him.  Not because I am impatient but because I don’t want to see him struggle.   Waiting for him to get in or out of the car, sit, stand, walk, feels like time has stopped.  He pauses in motion…does he need help, is he thinking of his next move, is he willing his limbs to cooperate?  I try to always ask first, “do you need help?”  I don’t want to assume.  Sometimes he says yes.  Other times he says he can do it so I wait till he is done.

Helping him is the most important task of that day.  It is the only task of the moment.  I not only physically wait, but my thoughts slow down too.  Everything focuses to being in the moment.  At times it is almost peaceful, everything I do and think in my multitasking world pauses.  There is so little I can do for him, but I can make him the center of my attention for that moment.  Then, when we are done with that task.  I step away, take a deep breath…and all my multitasking tendencies come back in a rush.

If it were possible I would patiently wait for him for him for the rest of my life.

Tantrum thy name is, me.

So, I had this draft post titled “Toss me a pillow, I want to throw a tantrum” for a while.  This was going to be a lot of venting, spewing about the unfairness of life and this sick disease.  I don’t want to handle this like an adult, make the most of it, believe all things happen for a reason.  I want to cry like a baby, roll around and pound the floor, throw things, break things, raise my fist to the sky and scream from the tips of my seven terrible toe nails (I had 3 removed as they were beyond terrible).

Before I finished the post, I actually had a tantrum. I yelled, cried, threw my shoe, yelled at my cats, slammed some cupboards.  I threw an empty peanut butter container on the ground and “yelled, we are out of peanut butter”.  Why was that empty container on the shelf anyways?  I really wanted the PB and J sandwich! 

It was a small tantrum considering how much is churning inside me, I didn’t want to scare myself or my husband with the ugliness inside me right now.  I even told my husband he might want to stay somewhere else for a while.  I am afraid of what might come out of me and don’t want to hurt anyone.

It is very possible my brother may not see March.  I know he is suffering physically, emotionally and mentally.  He can’t stand to be dependent on anyone, it is killing him.  And he does not want his teenage kids to see him this way.  I get it.  I do. 

He is ready to go.

How do I get ready to let go?

Half Day Fret Free

After the Christmas vacation everyone is back at work or school, which leaves my brother alone for several hours and leaves us all in a state of panic.  I think he likes some of the time alone…but there is a lot he shouldn’t do by himself….like walk or try to go up stairs. 

My husband is spending a few hours a day with him now.  We would like it to be more hours, but my brother wants some time alone, and for now while he can be alone I guess we have to let him choose.  We all still worry though, but at least it is a few hours a day less.  

My husband is really enjoying it.  He likes to help people and he loves my brother.  They laugh, read, talk, walk.  He takes him to some appointments.

When my husband said he would do it I burst into tears. I told my husband how much this means to me and my family.  We worry so much about my brother being alone. 

It means so much to me, I don’t think I can even tell him how much.  So much worry was lifted from my mind, the tension of wondering if he was ok.  Personality wise, they are probably a good match to spend hours together every day.  My husband is kind, helpful, caring, but also not intrusive.  The rest of us would probably be bugging my brother all day with questions and what we would think is helpful advice.  My husband has a way of making people feel good about themselves. 

I am touched more than I can say, and so proud of him.

To share or not to share

I don’t know how much time we have left with my brother.   As yet, I have not shared this blog with my family or friends, and to my knowledge, they have not stumbled upon it.

I struggle with whether to expose myself to him, or anyone.  Is this the right time, is it even something I should do?  Will it bother people, will they think less of me because I am angry and frustrated.

If this were someone else’s issue I would probably quickly tell them to share.  I don’t know if I am as brave as I would encourage others to be.

I don’t need a hero, just my brother

When I was younger, and sometimes still today, my family would say “you are so smart”.  Sometimes it was a compliment, sometimes an accusation. I hated it.  Still do.  Sometimes my co-workers say it too. 

Doesn’t everyone want people to think they are smart?  Why is this a problem?  Because it comes with a burden and responsibility I did not ask for.  If people think you are smart they don’t think you need help, or you should have more tasks than others, or make fewer mistakes, people rely on you more as if they are more functional with you around to remember things for them, figure out things for them.  It takes the burden off themselves if they don’t think they have to use their brain if your brain is around.  I did not then and still do not believe I am as smart as people say.  Some people learn better visually, others by doing and others by hearing.  I am someone who can learn all three ways, sometimes I need all three ways.  That makes me adaptable but not smarter.  I think differently than others, have a different perspective.  That’s all.

I wonder how my brother feels when he hears people say he is courageous, that he is their hero.  He is very quiet about how he feels about this disease.  He doesn’t complain, yell, cry out at the unfairness.  I wonder, does he feel he can?  If after hearing how much people admire him, are in awe at his calmness and his courage does he feel he can show what might be seen as signs of weakness or despair?  Will he feel he has let everyone down?  Will he feel guilty that he is not as brave as everyone thinks he is?

He must feel fury, anguish, the unfairness, he must.  How can he not?   Does he feel a burden that he must be the hero everyone thinks he is?  Be strong and suffer silently?

Often times when a tragedy happens to a loved one, everyone talks about how wonderful the person was.  If we are to believe all the interviews of the family and friends from new stories and true crime documentaries, only the good, happy, wonderful, loving, perfect people are killed or die a horrible death.  Maybe that is comforting to those of us less than perfect.  We can tell ourself it won’t happen to us because we are not the perfect human that the victim was. 

Well, I love my brother to death, but he is no perfect person.  This is a good time to remember all the wonderful times, but also not lose sight that he has faults too, like us all. 

So I give him permission to not be a hero.  To let it out, to scream, yell, fall down under the unbearable weight of anguish, to be angry he won’t see his kids marry, be a granddad, that he won’t ever fish again, jog with this wife, play hoops with his kids.  That his family will be less…husbandless, fatherless, sonless, brotherless. 

Permission to just be and know it is ok.  We love him anyways.   Frankly, for me, it will make him more of a hero, and someone I would aspire to be and could be.  Human.

Big Girls Do Cry

I am a big girl and I definitely cry.  I cry over commercials, tv shows (I can’t watch Little House on the Prairie), movies, stories people tell, songs (Tie A Yellow Ribbon gets me every time).  I would say I am normally a happy person but I cry when I am happy, sad, touched, mad, frustrated, tired.  I wish I could say I am so emotional at the thought of losing my brother.  But I have always been a crier.  I CAN say, I am much more emotional thinking of losing my brother.  It hits me at weird times.  So far, it does not hit me when I am with him.  When I am with him I just want to be normal.  We talk, we laugh.  We even talk about his disease, we don’t ignore it.  He tells me he wants to exercise our states die with dignity process and it is like we are talking about the weather.

Until I get alone.  Then I sob. 

One of my sisters counsels terminally ill cancer patients and their families.  On our trip to Yellowstone she said the patients often tell her they think their loved ones don’t care they are dying, that they don’t seem to love them.  Why, because they are not crying.  Then the loved ones say, they can’t cry in front of the one dying because they want to be strong for them.  What strange people we are. 

My parents have always been criers too…well, my whole family is, even my brother in the past though he would try to distract us with jokes or teasing if he felt the urge (I think he used to do this when we were kids watching Little House on the Prairie, damn show).  They seem to be able to cry in front of him.  At Christmas one sister looked on the verge of tears for 2 days.  My parents have broken down in front of him and in front of all of us.   Still, it is shocking to see your parents cry like this.  I have seen them cry all my life, but not like this.  I have an image burned into my brain of my mom helping my brother into the car on our trip to Yellowstone, then covering her face and sobbing in the parking lot.  I wanted to enfold her and protect her from the gut wrenching pain.  There was nothing I could do, not even cry myself.  

Like I said, I always cry, have always cried, still cry, will cry, cry cry cry.  And I still can’t cry in front of him.