Friday, May 25, 2012

Just Breathe...

Its a crazy thing to sit in a room and be told by a virtual stranger that you have a disease with no treatment or cure.  My head was spinning with so many thoughts and all the unknowns and one central question … how long?  We all know we are going to die, its not a secret or anything.  Its just the manner and the timing that we hope to push away.  Usually, we don't know anyway so why worry about it.  But once you are given an expiration date (range), it sort of changes things.

I left the hospital making big plans for a trip to Europe.  I mean why wait, we should go right away.  And then what?  A trip to Cali to see my family there, laugh and have fun doing all those silly things we have always enjoyed doing together.  Then another island trip?  Sure, lets make it happen.  And New York too, take in a Yankee's game and eat all the cheesecake I want.  Then what?

As these things started to become a reality, one by one, I realized I wasn't ready for any of them.  Europe is far, over 8 hours on a plane pressurized to an altitude that I don't know if I can breathe comfortably in.  Once we are there, can I handle the whirlwind kind of trip we are talking about?  Will it really be fun or just too much too soon?  As much as I want to see my family, I know it won't be easy.  Everyone is dealing with this in their own way right now and I am still trying to get a grip on my own emotions.  Will it just be too stressful and take all the fun out of it?  The islands, maybe.  I mean it is not far away and its all about relaxing there.  A little swimming, sunning, drinking, eating, a lot of relaxing … maybe.  New York is always a fun city, my favorite city to visit really.  Again, its close enough and there isn't too much stress involved in that trip, so … maybe. 

Dan and I have talked about what I might want to do.  Learn to ride a street bike?  An old dream, one that I feel I satisfied when I learned to ride a dirt bike a few years ago.  Europe?  A long time dream that I would like to fulfill at some point, but not this month.  Green Day in concert?  The venue is huge which means thousands of people, lots of smoke, and I think I can wait on this one.  So, what then?

The truth is, I don't know.  I feel like I should be doing something, should at least want to be doing something, everyday.  The reality is, I don't know what to do and for everything I think of, there's an equally good reason to wait, but is it smart for me to wait?  Then I realized, finally, its ok to take some time to sort it all out.  I don't have to do anything this moment except breathe and take care of myself as best as I can.  Processing all of this information is important for me right now.  Until I have my own head wrapped around it all, how can I help anyone else deal with it? 

The first couple weeks, I just cried everyday.  I couldn't help it.  I may be a positive person, but how do you put a positive spin on ALS?  How could I not think about all that I will miss or feel the deep loss of everyone, everything?  At the same time, I was trying to understand that I am strong, I am relatively healthy at the moment, there is no reason to believe I am not one of the people who will live decades with this without any significant progression.  I've always been stubborn, so why should this be any different? 

The last couple of weeks I have felt better.  I turned a corner somewhere along the way and realized I am still in control of how I deal with this, how I react, how I live.  And that is the key … I am living!  That doesn't mean I have to do something big everyday, some days just require quiet breathing.  There will be days for the big things still, but I think the important thing is to get to them in a way that allows for the enjoyment of them, not running at them in fear of missing out.  I choose to go forward with intent. 

Some days its just the simple things that make a big difference.  I like to jump in the ocean and go swimming and just float in the waves during our morning walks.  I don't do it everyday, but I love it on the days when I do.  I also love driving in my car.  I traded my FJ in for a convertible VW Beetle, an updated version of the one I had when I was in my early 20s.  I put the top down, crank the tunes, and just go with my hair flying every which way!  It always puts a smile on my face, no matter if I'm going a couple of blocks to Starbucks or an hour to Jacksonville. 

The point is, everyday is a gift to each of us.  I want to focus on being healthy and being grateful.  Grateful for the love and friendship and support I am surrounded with, the love I feel so deeply in return, the joy in the simple things, and the ability to plan for the big things when I am really ready.  I am grateful that I can focus on living again, on being positive, on taking care of myself so I don't over do things out of fear, remembering that fear doesn't rule me, knowing that when I forget that I am ok, there will be someone here to remind me.  And, as always, I am eternally grateful for my husband, our son … there are just so many things to say but for now, thank you and I love you always will do.

Sunday, May 20, 2012

Can you hear me now?

I never thought about losing my ability to speak.  Even as it was happening, I always expected to find a way to get it back.   

Communication has always been one of my strong points, or so I like to think.  I learned to read and write at a young age and always loved to write letters to family and friends.  I think I was born talking and haven't quite stopped since, until now.  All through my school years I got into trouble for talking in class.  Over the years, I have adapted to using email, Facebook, and texting as ways to keep up communication with friends and family who are both near and far.  With all of these great forms of communication at our disposal, there is still nothing like having a one on one conversation with someone.  I have enjoyed countless lunches with friends and family over the years where we talked and laughed and caught up with each other over an hour or two's time.  I have always left feeling satisfied and happy, and if the food was good, that was just a bonus.

When I started to lose my ability to speak, it was annoying, but somehow I just didn't think it would be permanent.  I first noticed a problem when I was invited to interview for a school library manager position in May 2011.  I had been having a little catch in my throat now and then and my voice was getting a nasal quality I wasn't used to.  Basically, it sounded like I had a sinus cold and I didn't want that to effect my getting the job.  Turns out, it didn't and I was hired to start the following August.  Over the summer we moved from California to Colorado, went to Hawaii for a week's vacation, and I enjoyed walking along the Poudre River paths for exercise.  My voice continued to sound nasally on and off, but it wasn't until I started work that it became really bothersome. 

By mid-day, I was struggling to talk clearly and I realized that my voice got more difficult, both to use and to understand, the more I talked.  Within a few months, my words began to sound slurred instead of just nasally by the end of each day.  It started to sound like I was drinking, which especially worried me when I talked on the phone at work … would people think I was drinking at work?  (No one ever mentioned it, so I guess it wasn't an issue.)  Another concern I had was what might happen if I got pulled over while driving, would they think I was drinking?  And if so, what would happen?  It kind of became a joke in our house, but I was actually a little worried about it for real.  Fortunately, it didn't happen.

Since drinking was obviously not the cause of the problem, I decided it was time to see a doctor, which put me on the six month long path to getting this diagnosis.  After going on medical leave and temporarily moving to Florida for more medical testing, I decided it would be fun to learn sign language along with the people closest to me so they could understand me easier and I wouldn't have to work so hard to talk.  Unfortunately, that won't help with the world-at-large or when talking on the phone, but it should be helpful at home. 

My speech has now deteriorated to being very difficult to understand most of the time and its very tiring for me to make the effort to be as clear as possible.  The people closest to me do a great job of trying to understand me and not asking me to repeat myself too often.  I rarely talk on the phone anymore because it is very challenging for both sides of any conversation I am in.  The doctor suggested using an iPad app for text-to-speech to make things easier, but my immediate thought was that I wouldn't need it because I have been making do and talking is just too important. 

After a week or so of trying to talk while crying, which is next to impossible, I decided to try out a text-to-speech app for my iPad and iPhone.  Hubby wants to understand what I'm feeling to help me though all of this, and I'm so grateful for that, but when I can't share it just gets me more frustrated and makes processing all of this even more difficult.  I still have so much to say, so much I want to be able to share, and I feel so stifled when I can't get the words out in a reasonable amount of time, or in an intelligible sounding way.  I end up having a large portion of my part of conversations in my head because I can't get my words out to share with the other person.  This is especially true when the topic is emotional for me. 

With so much to process, learning how to deal with this and trying to figure out what my next step should be, it took me over two weeks to realize that I will likely never speak normally again and may actually lose the ability to speak completely at some point.  Yet, I'm not giving up.  I still have things to say.  I still want to be a part of the conversation, not just talked at with no expectation that I can or will participate.  So please remember, I need a little of your patience and understanding right now because, as you know, I'll always have something to say.

Sunday, May 13, 2012

Happy Mother's Day

On Mother's Day, I have been feeling grateful for the strength, life lessons, and love that have been shared with me over the years by all of the women in my life.  Thank you for helping me to become the woman I am today.  I appreciate and love you! 

I also thank my husband and son for celebrating me as a mom and always letting me know how loved and appreciated I am by them.  I am truly a lucky woman! 

With life being stressful and uncertain at the moment, it can be easy to forget all the beautiful and positive things.  Today I am taking note of all the good things and the love I am grateful for in my life. 

Tuesday, May 8, 2012

A Little Fractured…

My hubby and I walk our dog on the beach every morning.  We walk hand in hand, throwing the ball for Harly and laughing at his antics along the way.  I love the feeling of the ocean washing over my feet as the sand gently gives below me and the sun shines warmly on my skin.  It is one of the best parts of my daily routine and it feeds my soul in a special way. 

Today, while walking on the beach, I stopped to pick up a shell that was buried in the sand under the surf.  I often pick up shells on our morning walks but this one was unusual.  I don't really bother with the larger shells anymore because they are almost always small pieces that aren't worth the time.  However, this morning a larger shell caught my eye and after taking a step past it, I turned back to pick it up.  I was surprised to find a mostly intact conch shell.  There was a piece missing from the outside but my first thought was that it was just fractured, kind of like me. 

I realized that this is how I feel at the moment; mostly intact but fractured.  Ten days ago I still believed that the doctors would give me news that offered a treatment.  My head is spinning with what they actually said.  I don't feel any different today than before the diagnosis, except for the deep sadness that can overwhelm me at any given moment.  At other times, I am overcome with absolute hope that encourages me to believe I will be one of the lucky ones, which I trust I will be.

Fractured, but not broken.  

Sunday, May 6, 2012

Thank You!

Since going public with my diagnosis earlier this week, I find myself overwhelmed by the incredible outpouring of love and support I have received from family and friends.  It is impossible for me to express exactly how much your thoughtfulness means to me.  Please accept my heartfelt thanks and know that your kindness and compassion are greatly appreciated.  It is so encouraging, and I am truly moved, to know there are so many people who love and support me.

Thank you, from the bottom of my heart!!

Saturday, May 5, 2012

A Bumpy Ride...

Those of you who know me know that I have always loved roller coasters but I'm not a fan of turbulence. I have been told they are basically the same feeling, but I disagree. One takes place on a track and is over in seconds while the other takes place a few miles above the Earth with no track and the ride is usually at least a few hours long. To be fair, turbulence does not regularly last for an entire flight, but it can be on and off throughout.

At this point, you are probably asking yourself what the hell does any of this have to do with my situation? Well, the last few months have felt like a roller coaster ride in that my emotions have been up and down but I have been able to remain positive, believing there would be a track below me to keep me on course until we reached the point where some type of treatment could be found at the end of the ride. Since Monday, however, I feel like I am stuck in turbulence, sometimes dropping hundreds of feet at a time, but not knowing if a safe landing will really happen or if there will just be a crash and burn at the end.

Statistically, I know turbulence very rarely, if ever, is the cause for a crash and burn. It just makes for a very uncomfortable ride that can induce fear leading to tears and sometimes downright terror. Historically, my fear of turbulence hasn't really been because I have a deep fear of the plane crashing, but really I just fear the hours of turbulence I have to survive to get to the final destination. I don't like to waste my time in fear and yet its a fear that I can only sometimes control, even though I realize that chances are great there will be turbulence and slim there will be actual danger.

This week has been filled with turbulence. The fears bubble up at obvious times as well as hitting me like a brick wall while walking my dog on the beach. Early in the week I spent a lot of time sad about all that I will miss, like my son turning 18 years old, becoming a man, finding his path in life, finding his true love, getting married, having babies and becoming a parent (which would have made me a grandma), and all the other things that happen along the way of life. I don't want to miss any of the things that happen in his life, he's my son and I love him beyond reason or measure. I want to be there for him.

That is just one deep seated fear, but there are others. How do I leave my best friend, my soul mate, the love of my life behind, alone? Granted, he'll have our son, they'll have each other, but how unfair to leave him to deal with both of their sorrow without me there to buffer and guide and just be me for them.

This might not be making any sense, I'm pretty sure it won't always because my thoughts and emotions are all over the place from one moment to the next, but this is what's on my mind for now.

Friday, May 4, 2012

Becoming Sam...


I am a happy, generally positive person who loves life and having fun with my family and friends. A year ago I thought I was developing allergies and have spent the last six months being tested for many things until this week when I received a devastating diagnosis. Now I am trying to figure out how to keep my positive attitude and live every day to the fullest while looking for ways to turn my health around and get back to normal regardless of what the medical community says.

After months of tests and visits and updates on what might be wrong, then being told what its not – which can be a big relief while you are still waiting to find out what it is – I finally got a real kick in the ass sitting in the doctor’s office earlier this week.  

I have never been to medical school myself, but I have watched it on TV, and I can say that if they are teaching these doctors to give bad news, they need to reevaluate the curriculum for that one.  After all this time, don’t revert to medical lingo and try to hide what is really being said behind unnecessary terminology.   Seriously, no one should have to drag the answers out of their doctor like I did, but what it comes down to is they have concluded on a diagnosis of Progressive Bulbar Palsey, or PBP.  This also is classified as Bulbar onset ALS, a motor neuron disease that the medical community has no cure or even any real treatment for except to manage the progression as it happens.

In other words, they are saying that the ability to communicate, swallow liquids and eventually food, and the ability to just breathe will all deteriorate until I can no longer talk at all, a feeding tube will need to be inserted, and eventually, a respirator may be necessary.  IF it progresses to ALS, which is not certain but likely in their opinion, my arms and legs will also begin to weaken until I will no longer be able to use them so a walker then wheelchair then immobility could set in which means being confined to a bed.  The progression could take anywhere from a few months to 5 years in my doctors opinion (which I had to ask), but she was kind enough to point out that I have already been symptomatic for a year so take that off the front end I guess.

There is nothing about that diagnosis that is good news.  No one should have to tell another person this, and no one should have to hear it.  As it turns out, once you do hear it, it becomes necessary to turn around and tell it to a whole bunch of other people, people you love and don’t want to hurt … like my son.

How do you tell a 15-year old this kind of news about his mother?  I am sure there are many schools of thought on how to do it right.  In fact, I probably could have Googled it for some advice, but instead my husband and I just did it our way…with honesty and sadness and love.  It wasn’t easy, but we got through it together and now we forge ahead as a family to whatever is next.  There will be tears and laughter and arguing and challenges to face just like before, but we will face them together, as always, and no matter the situation, we each know and feel the deep, powerful love that binds us.