Sunday, December 30, 2012

Hope for 2013...

As this year comes to a close, I have such mixed feelings.  Tomorrow Dan and I celebrate the 25th anniversary of our first date and our first kiss.  We have spent every New Year's Eve together since that first one in 1987 and every one has been special in its own way.  Looking back on 2012 I have much to be thankful for and many fond memories but I think it is safe to say it has been the worst year of my life.

The year started off pretty good though January was a whirlwind of unexpected activity.  Not knowing what was causing my speech and breathing problems, we decided to visit Florida for a week where I found right away that breathing was so much easier than it was at home!  We were referred to a neurologist upon our return to Colorado so we decided to seek out the best and get to a place where I could breathe easier while we sought a diagnosis.  This meant leaving our home, my job (which put me on medical leave), the new life we had just started six months earlier, but we did it and it all happened very quickly.

The next few months involved going through a battery of tests but I was able to walk on the beach almost every day and, while I was becoming more and more concerned about my declining speech and what it meant, I was hopeful that the doctors would find an answer I could live with.  In the beginning, I still thought there would be a chance to regain my speech but as time went on I started to have doubts.  I remained positive and hopeful outwardly, but I had started to suspect the answers would not be as optimistic as I originally believed.  Days before I was scheduled to meet my doctors for a discussion of my diagnosis, we went on a cruise to the Bahamas where we had some fun and laughs. 

I've already discussed that fateful appointment in a previous post so I'll just skip over it here but suffice it to say, it sucked on every level.  Leaving the hospital that day, overwhelmed with the knowledge that ALS had invaded my body and my life but not really understanding in any detail what the experience would be for me, we were devastated and all I could think was that I was not ready to leave my boys, I was not ready to die.  That was April 30th.

The next month was a complete blur since I mainly spent it in tears.  By June I was ready to start looking at life again, ready to move forward and face whatever was to come with Dan firmly by my side, a spot he has not budged from which has made all the difference.  The next few months we took things slow after our initial impulse to do everything I had ever wanted to do immediately.  I just needed to find a pace I could move forward with, but not run out of energy from, and Dan let me take the lead while supporting me every step of the way. 

I took two trips to Orlando, once in June and once in November, to spend time with people I love and try to forget about having ALS for a little while.  What I learned is that ALS goes where I go but I am still me, inside and out.  I still feel the need to take care those who love me and no matter how hard it is to communicate, I'm not willing to be silent.  The last few months I have been finding ways to adjust and adapt to the new realities I face.

Now, with the end of the year a day away, I look forward to 2013 with both hope and trepidation for what is to come.  There are special occasions I look forward to like my son's 16th birthday and our 20th wedding anniversary.  I look forward to Spring and feeling the warmth of the sun as it tans my skin to the wonderful bronze color I prefer over the pasty white of winter.  I look forward to the summer months when the ocean is a warm and inviting place to swim.  Yet I can't help but wonder if I will be able to swim in the ocean this summer.  Will I still be making any effort to speak or will I solely use sign and electronic devices to communicate?  Will I be able to eat cake with Dan on his birthday?  Will I get to see the second movie in The Hunger Games trilogy?  Will I be able to walk to the beach to watch the fireworks next New Year's Eve? 

The answers will only be revealed in time and time is never promised so I will continue to live every day like it could be my last and hope that, whenever it comes, my last is enough.  However, tomorrow I will celebrate the 25th anniversary of our first date with the love of my life and we will begin another new year together.  That is reason enough for me to fight back the fear and embrace the hope that 2013 will be a year of strength, medical advances, and as always, laughter and love.

I wish you love, happiness and good health in 2013!

Monday, December 17, 2012

Happy birthday to me...

I celebrated my 43rd birthday this past weekend and I think it was one of my best!  I didn't go anywhere particularly special or do anything life altering, it was just a wonderful day spent with people I love doing normal birthday things … because I am still just me, easy to please and with simple needs and desires.  I received some very special and thoughtful cards and gifts and I am truly appreciative to everyone - Thank you for thinking of me! 

There was one gift that was completely unexpected and it really touched me.  Sent by one of my longtime friends, inside a beautiful butterfly card she wrote that she had made a contribution to the ALS Association (ALSA) in my honor with the hope that "maybe in some small way this will help".  I was so deeply touched by this gift.  For her to support me by supporting this wonderful organization who, in addition to funding ALS research, provides help to people living with ALS in so many ways.  They offer information and assistance to help people adapt to and understand their illness; they provide assistive equipment when needed; they offer support groups and one-on-one support from people who help both the PALS (person with ALS) and CALS (caregivers for persons with ALS) continue living their lives with independence, grace, and dignity, and so much more.  Thank you, my friend, for this very special and meaningful gift!

If you are interested in learning more about ALSA or would like to offer your own contribution to help this worthy cause that is close to my heart, please visit their website at http://www.alsa.org/   Thank you!

Wednesday, November 21, 2012

Gratitude...

With Thanksgiving looming just hours away, I have struggled with writing a post on how thankful I am for everything in my life.  So I find myself at the last minute finally putting my feelings on "paper" because, in truth, I am thankful for so many things in my life, including my life itself.  However, I am conflicted because I am not thankful for things in my life which are now a part of me but I wish were not.

As I lose my dexterity and physical strength and my ability to speak to ALS, I am the opposite of thankful.  I find myself thinking of the physical changes I've experienced so far and how they affect me every day, how much more difficult my life is every day, and I wonder from time to time what changes will be next.  I wonder if this will be the last time I will be able to cook or eat Thanksgiving dinner.  These are just some of the things that make gratitude challenging for me.

Yet, somehow, I find myself still feeling a deep sense of gratitude for so many things.  I am thankful for still possessing some ability to communicate, for still being able to live with independence, for the strength and adaptability to get through each day as it comes.  I am thankful for having spent the last 25 years with the love of my life and for sharing those years together making incredible memories and living life in such a fulfilling way.  I am thankful that we had an amazing child who has added so much love, joy and laughter to our lives and made our family complete.  I am thankful to have the love and support of my family and friends and hope they know I love and support them as well. 

I know that I am not alone in feeling conflicted by gratitude.  Everyone has challenges they face in life and at some point we reach the time when we have to make the choice to move towards the light or continue to wallow in the darkness.  For myself, I find the choice needing to be made more and more often and I continue to choose the light.  Some days are harder than others, but in the end, gratitude for the good, the wonderful, the love, the joy, the laughter, and even the lessons I am learning are a strong motivator to keep pushing forward.

Today I am thankful for all the wonderful pieces of this life I am living, and that includes you.


Monday, October 29, 2012

Time enough...

"The butterfly counts not months but moments, and has time enough."  -Rabindranath Tagore

I came across this quote recently and it has given me a lot to think about.  What does it mean to have "time enough"?  Is it even possible, for any of us, to feel there is enough time?  When I think about it in terms of enough time, the truth is, there isn't enough.  I'd like to think it is possible, and in fact I used to think that when I got older, much older like in my late 70s to 80s, I would reach a time when I felt it had been enough, but when I consider it in relation to my situation now, I can't see it.

When I first received my diagnosis, the main source of the overwhelming sadness was that there just wouldn't be enough time.  The sense of loss came on quickly and dragged me down into waves of tears and frustration.  Dan was awesome in helping me get through those days.  He held me through it all and kept reminding me that we had to live each day, enjoy each day, laugh each day, but that it was, of course, ok to cry too.  He said we just had to make each day count and I knew then, as I do now, that he was right.  Even though we know that this life ends in death, few of us know when the end will come until we are staring it in the face.  So, while we have the opportunity, we live and make the life we have worthwhile with all the resources we have available to us and when that isn't enough, we find a way to do more, do better, until we have achieved the success we were aiming for.  The definition of "success" is different for all of us, but the desire to succeed at this life is deeply rooted in most of us.

The more I thought about having enough time to do, say, share, be all that I want with those who mean everything to me I realized that no, there is not enough time, maybe there could never be.  However, knowing that time is all we have, I came to the conclusion that it might be possible to have time enough to enjoy the moments that make lasting memories, to share the love that is never ending, to impart the knowledge that life is what you make of it so make sure you don't wait for the "right time" but just make the time right.  It is all in the perspective you take.  There may never be enough time, but after a lot of thought I now feel that, just maybe, there can be time enough and so for now, that is something to strive for. 

Friday, October 12, 2012

Assumptions...

 One of my cousins has been living in Japan for the past year and is working as a teacher there, teaching English.  He writes a wonderful blog about his experiences called "Take Your Shoes Off, Watch Your Head".  In his post from August 6th titled 報道 - Take Your Shoes Off, Watch Your Head: Yin and Yang: From the Outside In he wrote about how assumptions are made about him as an American living in Japan.  When I read this post, I really understood his feelings and frustrations on a very personal level because I find people make assumptions about me quite often these days too.  Some create positive experiences, others leave me feeling frustrated or even angry.  The thing about my current state of health is that while I may have a "life-ending" illness, I look healthy and unless you knew me before, its not obvious that anything is "wrong" until I speak.  Since ALS is not common and most people know very little about it, it is highly unlikely that people would ever make that assumption.

As I've mentioned before, when I interact with people who don't know me, they often make the quick assumption that I am deaf.  If they know sign, they will begin signing to me automatically.  Fortunately for me, because most of them know more sign language than I do at this point, they also talk as they sign.  Since I am still a beginner, this is really helpful.  Just to be clear, I do not try to pass myself off as deaf.  I always let them know I am hearing unless the interaction is too quick to make it worthwhile.  I don't wish to embarrass (most) people either, but on the other hand I feel they should know that not all of their assumptions are correct.

Most of the experiences I have are positive and people are thoughtful, helpful, and kind, such as employees at the library, post office, grocery store, Target, WalMart, Dunkin' Donuts, etc.   One Target employee recently typed the answer to my question into his phone before I realized what he was doing - I thought he was doing a stock check.  On the other hand, there are a few situations where people react differently when they jump to conclusions.  One woman (in her late-40s?) I encountered at a local business groaned as soon as I began to speak to her, thinking I couldn't hear her I'm guessing, and then slowly and a little too loudly asked me to wait a few minutes for the owner to return.  She then went to the back and had an unprofessional phone conversation that I can only hope she assumed I couldn't hear.  Then the other day I encountered a man who said something very rude and wildly inappropriate after assuming I couldn't hear him.  I gave him the one finger "sign" that I've known for years and figured I was lucky I was in my car and not face to face with him because I honestly might have hit him.  Three other times people have come to the door and tried to sell me things or asked me to support their candidate but once I speak, they find a way to leave very quickly.  At times like this, their assumptions are helpful.  At other times, I find them rude or at least insensitive.  It's funny how people make such quick assumptions and think its ok to act in a way they wouldn't dare act if they took the time to find out that I can hear.  Not long ago I heard one person, whom I've never met or spoken to, describe me as deaf and mute to another person.  All I could think was, "Why?".  Why was it important for him to share something about a complete stranger, especially since he was wrong and had no idea what he was talking about?

The truth is, we are all guilty of making incorrect assumptions about others from time to time.  I know I am guilty of it myself, but over the years I have really tried to learn from mistakes I've made in dealing with other people.  This illness has left me in a position of depending on others for help at an age decades younger than I ever would have expected and in ways I never imagined.  I have always been very self-reliant, the kind of person that just gets things done, but now I can't even make a phone call for myself.  I can't call to schedule an appointment for a hair cut or a dental cleaning or to have my dog groomed or to book a flight or question my cable bill or whatever.  I also cannot go through a drive-thru to order food or drinks.  While I am not a big drive-thru person since I don't eat a lot of fast food, there are times when I would like to use it to get iced tea from Dunkin Donuts or lunch to go from Panera.  In some ways these might seem like frivolous things to worry about, but its the loss of freedom to do simple things I took for granted, and should take for granted because they are so simple, that is frustrating as well as the knowledge that this is just the beginning.

I guess in sharing all of this I hope that, as you encounter people day to day, you might take a moment to consider if the assumptions you are making about them are correct or are you making an assumption that is not only wrong but might be hurtful.  It could be the person in the electric scooter at the store in front of you, the clerk who gave you the wrong change, the person who seems to have no patience with anyone and is rude because of it, the child or teen who acts out or simply ignores you, or whatever you may encounter has more going on than meets the eye.  Everyone has a bad day now and then, yet other people might be dealing with more than you can imagine.  Sometimes its so easy to forget when we are dealing with our own troubles and its easier to blame others for their bad behavior than it is to remember to have compassion for them.  Of course, some people are just plain insensitive and mean on a regular basis.  They may not have an excuse, or maybe they were dropped on their heads as babies, I don't know, but I would rather try to spare a little kindness for them than let them ruin my day.  I figure if I can get through each day and keep smiling, I've done my part to keep the world in balance for now.

Monday, September 24, 2012

What can I say...

There are so many thoughts running through my mind about what I should say.  In fact, I've spent over a week thinking about these things and I have just avoided sitting down and committing my thoughts to writing.  Thoughts like, do I keep protecting everyone or share that my right hand is losing strength?  Do I pretend I'm not scared or share that I am terrified about what will become of my boys if, or when, this disease takes me from them?  Do I talk about what worries me most or the few good things I have discovered about life because of ALS?

So I finally am writing and here are some of the things that are new and bothering me:

~I rarely watch movies that make me cry anymore (or have too high a potential to make me cry) because crying is just not as easy as it should be.  (This is also true of sneezing and laughing, but I can't control the sneezing and laughing is worth the ridiculous way I sound because it means I'm happy or at least having fun.)
~I hate to admit that I am losing strength in my right hand.
~My speech is not only difficult to understand, I hate that it is such hard work to try to be understood, something that should be so natural and easy like it was not so long ago (has it really only been a year).  I also hate how I sound when I talk and wish I could just avoid talking altogether sometimes but I hate the lack of communication more.
~I hate that I have fasciculations, or "twitching", on my tongue all the time (first noticed in December '11 by an ENT doctor), and now I feel them in my arms, back, shoulders, and face regularly.
~I hate to share these things because it makes it more real, not only for me but for you.
~I hate what this disease does to the body of the afflicted and to the lives of those who love them.
~I hate watching my husband and son suffer and know that I really can't do anything about it because I am the cause of it.
~I hate that I can't fix this for myself or anyone else.
~I hate that there is not more help available from the medical community.
~I hate that ALS exists at all and, of course, I hate that it is touching my family in this all too real way.
~Finally, I miss my regular old smile that just happens when I am happy or laughing, it just not the same anymore because my facial muscles don't all work the same.

Since it is always better to end on a positive note, here are some good things:

~I no longer worry about what I eat being too fattening or not healthy enough.  Of course, I still mostly eat healthy foods because it's what I like, but if I want to eat rainbow sherbet or a cheeseburger with criss cut fries and a Coke, I have them and don't think twice about it.  I don't exercise other than walking to the beach and other normal daily activities but I haven't gained or lost weight in months and I am so ok with that.
~I don't worry about the little things.  I am not embarrassed to dance in public or wear a bikini at the beach or any of the other silly little things that I would have been too embarrassed to do in the past.  There is nothing in this life worth being afraid of because of what other people will think of me anymore.
~I cherish every day in a new way, find something special about each one to remind me that each day is worth living even when I'm feeling sad and scared.
~Every day I am grateful for my husband and the wonderful man he is.  As much as I hate that he is having to suffer through this experience, that he is losing a part of his world in a painful way and I wish I could spare him that, I cannot imagine going through this without him by my side.  He is such an amazing man, so thoughtful, kind, loving, funny, strong, generous…there are really not enough good words to describe him.  I can honestly say that he is everything I have ever wanted in a husband; my best friend, a loving father, honest, smart, and so much more.  Every day he makes me feel loved, cherished, valued, important, and he can make me laugh even when we both just want to cry - a truly wonderful quality.  He listens to me and understands me, even if he doesn't always agree with me.  His love, friendship and support get me through the day, every day.  He is truly my rock, my strength, the love of my life.  Without him, I wouldn't be me and my life just wouldn't be all that it is and has been.  I am the luckiest woman!

Monday, September 10, 2012

Sing Together...

Last Thursday night I went to a concert with my BFF.  I have been a Train fan for over a decade and it was great to see them live! The venue was small and we had excellent seats, they put on a great show and at one point did a wonderful montage of songs from all their albums over the years.  They were very generous and interactive with the audience, which was fun, inviting more than a dozen fans on stage to sing and dance during the Mermaid song (most were teens now with a memory they will never forget), they threw t-shirts and beach balls autographed by Pat Monahan into the audience, and at the end Pat gave away a signed guitar to a fan he said had her hands up and sang every word of every song with him throughout the concert.  It was a very fun experience that I enjoyed very much! 

I wish I could say that while I was there I was transported away from all that is really going on and I could forget for a while, but that's not true.  It doesn't change the fact that I had a fun time but it never leaves me, the knowledge that life is fragile.  And not just mine, but all of us.  This past week has been a real mixture of loss and blessings rolled into one.  I won't go into the details because they are not all mine to share, but I will say that I have never felt more aware of the way life can change from one minute to the next.  You think you are doing ok, going along and living each day as best you can, then BAM, you get slammed from all sides it seems and you just don't know which way is up.

In the end, I guess the only real option is to forge ahead and keep living for those moments that make you smile, that allow you to hold on to your loved ones and make sure they know how much you love them and how much you treasure each moment shared.  When our time is up, there is nothing that we can do to stop it, but for my part, I hope to at least leave behind memories of love, friendship, laughter, and the lesson that life is to be lived every day, big or small is up to you, but enjoy it and make it the best life you can imagine. 

While I have been criticized for my beliefs, or lack of them, I will tell you that one thing I truly believe is love goes on, always!  Train ended their concert Thursday night with this song, Sing Together, from their newest album, California 37.  I've been listening to the album for a couple of months and this song sticks out for me for reasons I think will be obvious once you hear it (be aware, it can be a tear jerker).  I'm adding this video for you all and ask that you remember to sing every chance you get. 

I would like to dedicate this song especially to my friend, a very brave and strong woman who lost her mom last week.  You are in my thoughts everyday and I hope you enjoy the song. 


Tuesday, September 4, 2012

Still talking, one way or another...


For those of you who haven't seen or spoken with me in a while, I realize that you may not fully grasp how different my speech is today.  I know I've mentioned before how difficult it is to understand me and how much of a challenge speaking is for me in general, but if we haven't spoken in person or by phone in the past 3 to 6 months, I really don't know if you can imagine the reality of it all.  In truth, because I know how drastically my ability to speak has changed in the past year, and why, I try to protect the ones I can from my reality.  This may not be the best thing to do, but I guess I am also trying to protect myself by not letting people I love see how much of a challenge I face everyday.  Then my brother called the other day and said that while he knows it is difficult, he really just wanted to hear my voice and I have to say that really meant a lot to me.  So, I decided to make a short video for you to watch and hear for yourself how I sound today.  The video was taken at the beach and was unplanned and unscripted so please keep that in mind.

video


Since I am not one to give up talking altogether, last month I started taking a sign language class with Dan and Lisa.  It has been going really well and in a short time we have actually learned quite a lot.  Of course, there is still much more to learn, but as of now we are able to have short conversations together completely in sign after just three classes.  We mostly talk about what color something is, how much something costs, and other minor things that we know the signs for, but its a good start and each week we are learning new words that really help with extending our conversations.  We are having fun with it and we like to practice often.  I find myself using sign along with my words throughout the day to become more comfortable with it on a regular basis.  For me, this will become my main form of "talking" soon. 

Living so near to the Florida School for the Deaf and Blind, we have a large community of deaf people in our town.  It is very common to see people signing in the grocery store, at restaurants, at the beach, and just walking around town.  This is why I believe so many people make the assumption that I am deaf when I talk to them.  For example, at the library there is a man who always moves the computer screen to face me so I can see my book due dates, then he writes them down for me as well and makes a point of being sure I know its the due date.  I have told him that I am not deaf but he doesn't seem to remember that from one visit to the next.  As soon as he hears me speak, he starts his routine.  I don't mind at all and, in fact, I think it is very nice that the hearing people in our community go out of their way to communicate with the deaf people in our community even if they don't know sign.

On the other hand, the deaf people in our community know I am not deaf right away, even if I am signing.  I learned this last week when Dan and I went to Starbucks and we were practicing our sign language.  I went inside and a man made a sign to me but I just smiled and walked past because it didn't register with me at first.  Once it dawned on me a few seconds later, I went back and said hello and explained that I am not deaf but I am learning to sign.  It turned out that he is deaf and is a retired teacher.  He had seen us signing outside but until I walked past him he didn't know I was hearing.  (I must have made some hearing person faux pas but I don't know what it was exactly.)  We ended up having a conversation in sign language and I was absolutely thrilled that he could understand me and I could understand him.  He  taught me a few words that he used which I didn't know (like retired, always, voice, and nice to meet you) and I was able to introduce him to Dan ("This is my husband Dan") all in sign.  After just three classes, I felt very proud that I could carry on a conversation with a stranger to whom signing is his first language.  When I took Spanish, that was definitely not the case.

If you don't know sign, don't worry, I will still be posting my thoughts and ramblings here.  I took August off from blogging but I promise to post more often now that I know people are reading it and miss it when I don't (thanks!).  I also email and text regularly so you can talk to me that way as well, and if you can find me, I am on Facebook (just not as Sam).  I am still very much available and interested in "talking", just not so much in the traditional way these days.

Sunday, July 29, 2012

On a lighter note...

There have been a few project related things going on in my life lately and I have been having lots of fun with them.  The big one is that we bought a new home and have been moving in, making a few changes here and there, and generally just making it our own which is always fun.

Ball of Clay - 6lbs
Me throwing a large bowl
Another, more just-for-me project I've been working on is pottery.  Lisa introduced me to it in January and once I felt settled here, I decided to give it a try.  I started taking classes about a month ago.  The owner of the pottery studio, Doug, is a very nice and talented man who has a lot of knowledge, experience, and patience.  He makes it all look so easy, but in reality it takes concentration, strength, and some vision about where you want to take the clay once you get it on the wheel or slab.  So far I have been focusing on the wheel and I've made mostly vases and bowls. 

The three items I "threw" (pottery talk for making something on the wheel) in my first class are the only items that have gone through the whole process so far.  The first week I made two bowls and a vase which were created from little balls of clay, about 3 to 4 lbs each.

Lifting the clay to add size and shape
From a ball of clay to a bowl
The next week I trimmed all of them, which involves putting one item at a time on the wheel and using cutting tools to shape it.  In this, you have to understand the inside shape and follow it on the outside, then create a "foot" which is the underside that it rests on. 

After this process is complete and the item is shaped to satisfaction, it is bisque fired.  I can't tell you any more about that because I am not involved in that part. 

The next step is to glaze the item.  This gives it color.  One odd thing about the glaze is that when you put it on, there is no hint whatsoever as to the color it will actually be after it is fired, which is the final step.  The glaze is chalky in texture and the color has a muted dull look which feels and looks nothing like the finished product.  The vase below on the left is glazed but you don't see the true color until after its fired (see picture below on the right).  You can see what I mean, they look nothing alike.

Glazed but not yet fired
Finished vase
This has been a great experience for me and I look forward to making many more projects!  It is a place and activity that allows me to focus solely on the work at hand.  I love that I start out with one idea in mind and halfway through working with the clay on the wheel, I can change my plan and make something totally different.  The ability to change the shape or take it from a bowl to a vase all on a whim (well, sort of, it still takes some planning) is fun!  I even like the fact that some turn out very symmetrical while others are a bit off kilter yet somehow they all sit balanced and each have their own beauty to them.  Now I just have to find places to use or display them all in my new house!






Thursday, July 26, 2012

Frustrated...

Last night Dan and I went down to the beach for a swim and some boogie boarding in the waves.  I was just feeling the need to connect with the ocean, feel the water surround me, and it was wonderful!  Out in the distance, to the southeast, there were white clouds that had the look of the white water from the crashing waves as they push their way towards shore.  The clouds were lit by the sun as it sunk in the western sky so they had that white, puffy, golden look to them.  I could see that it was raining from the bottom of the clouds and halfway to shore, where the clouds began to lengthen into a smoother pattern, there was a rainbow streaming from the clouds to the ocean below.  It was a beautiful site and as I got caught in the waves, I could feel the power of the water as it pulled and pushed and seemed to force its will on everything that it touched.  Yet, at the same time, when I just gave myself up to it and floated on the surface, bobbing up with the swells and down again as they passed below me, allowing it to take me where it would, I could feel the oneness and peace that nature provides when it is observed and not fought against.

In some ways, it reminded me of the struggle I am in with ALS.  There is a part of me that wants to fight with everything I've got and I am so frustrated and upset that there are so few options available.  I am not one to sit idle while injustice is happening around me, so when I am the one faced with this unjustifiable disease it makes me feel like such a failure to not be able to find an effective tool to fight with!   When the only options seem to be generic in their treatment, meaning that they are not really designed to fight ALS specifically, but they seem more geared to helping one resolve emotional and/or life issues which some believe may be the cause of the illness or they are designed to treat symptoms which may or may not be related to the disease, I just feel lost.  Its not a clear answer.  To me, it feels like being tossed around in the waves and not knowing which way is up until you either hit the sand or break the surface just to be hit by another wave.   Then at other times, I feel the peace of just floating along doing nothing as I just allow myself to be taken on the journey and let it unfold as it will.  However, as I feel changes happening in my body, the need to move into action strengthens, to find answers, but I want real answers, real positive results and I just don't see the door to them in front of me.  You can only imagine how incredibly frustrating that is!

Friday, July 13, 2012

Options?

I find myself amazed at the fact that ALS was first diagnosed over 150 years ago and today we still have no cure, no treatment, and very little knowledge about a cause.  How is this possible with today's knowledge, scientific and medical advancements, and the technologies available?  What is known is that there seems to be no rhyme or reason to who gets it.  They do know there is a genetic predisposition to ALS in some families (familial ALS) but others, like myself, have the sporadic condition.  People from all cultures and regions around the world have been diagnosed with ALS.  Both men and women are diagnosed with ALS.  While most people are over 50 years old when diagnosed with ALS, there are people in their 30s and 40s (I am 42) and some as young as early 20s (Stephen Hawking was diagnosed at 21). 

There are people who claim to have found treatments and/or cures for ALS using alternative methods but there seems to be no consistency to the claims.  One person found help with this treatment, another with that, and yet someone else swears by this and that combined.  I am not at all opposed to alternative medicine but there seems to be no supporting data to say "this actually works".  For example, I recently saw a holistic medical doctor who put together a plan for treatment that included a number of different methodologies.  One is an IV protocol created and administered by a doctor in the northeast.  It involves IV treatment two times a week for 12 weeks and costs $10,000 or more.  The doctor in the northeast claims that 75% of her ALS patients have delayed onset of symptoms with the treatment.  On the other hand, one of her former patients wrote that while the treatment may have offered some delay to their symptoms, they wished they had spent the $18,000 on doing things with their family while they were feeling well enough to do so.  This kind of information leaves me feeling conflicted. 

On one side, the medical community has no cure for ALS and no proven treatment to drastically delay symptoms.  One of the reasons for this seems to be that each person with ALS has a different timeline and progression pattern.  While there are similarities that can be followed and documented, patients are different and experience ALS in their own way.  On the other side, alternative treatments differ greatly and include (but are not limited to) IV protocols, detoxification of harmful toxins in the body including removing filings from teeth, changes in diet and hormones, taking specific supplements and vitamins, hypnosis, acupuncture, reducing exposure to EMF (electro magnetic field), prayer, and other metaphysical healing methods too complicated to explain.  So, what does one do?

With a disease like cancer, there are proven medical treatments and relief for symptoms of both the disease and the side effects of the treatments.  They are not 100% effective and often, I understand, the treatment makes patients feel worse than the disease on its own.  However, the thing I am most envious of is the hope.  Over the years, the medical treatments and survival rates for cancer patients have greatly improved through research, trials, practice, and whatever else it takes to get that kind of progress.  With ALS, after 150 years, there is still only one drug available to slow the disease progression and that only works for some people and the delay is generally only measured in months rather than years or decades. 

I want to believe there is something out there that can help me and the thousands of others suffering from ALS.  How do I do that when there is no hope offered by the medical community?  Do I try the alternative invasive therapies that have no proven success?  Do I try one or more of the noninvasive ones?  Do I just go for broke and try them all, proof or not?  The truth is that I find myself inclined to not try anything outside my experience because it can all be so overwhelming.  Also, at the moment, I feel relatively good and I do not want to do anything that will change that in a negative way.  Quality of life is extremely important to me and right now life is good!

There is just so much to consider when looking at all the options and it is so difficult to know what the best decision is.  While I weigh the treatment options available, I believe the best medicine for me is living life the best I can every day, smiling and laughing every day, staying active every day, loving and being loved every day, looking forward to the future every day, and sharing a glass of champagne with my husband every night to toast the day that has passed. 

Thursday, July 5, 2012

A good beach day...

One of the things I like best about living in Florida is the beach.  I love walking hand in hand with Dan on the beach every morning; the feel of the sand under my feet, the waves crashing on my legs as we walk through the shallow water, the warm temperature of the ocean at just about any time of day, playing ball with Harly and seeing how happy it makes him, the fun surprise of finding a shell that's still complete or tossing a stranded starfish back in to give it a chance to make it, the little fish that swim all around my feet, and the special treat of seeing dolphins now and then. 

Today was a good beach day.  It started with a nice walk down the beach with Dan and Harly, as most of our days begin.  On our walk, we saw half a dozen dolphin cruising along just outside the waves which always makes me happy.  I found a pretty shell to add to my growing collection.  We stopped to meet a few dogs (and their owners).  We played ball with Harly.  The water was warm and the sun was warmer so I went for a swim before we left, something I love to do.  Later in the afternoon, on our second walk of the day, there was a beach cleanup going on organized by a group called KeepersOfTheCoast.org.  We signed in and picked up trash (mostly cigarette butts, gum, and hair ties but there was also a sock, part of a tire, a single fin, and lots of firework trash) along the way.   All in all, it was a really good beach day.

Thursday, June 28, 2012

Life goes on...

For the past few weeks I have been struggling with a roller coaster of emotions which have kept me from writing.  Then last week I found my balance once again.  I am feeling better and back on track.  To catch you up with what I've been doing, good and bad, I thought I'd try to keep it simple.

Some of the good moments included:
 
-a trip to the Magic Kingdom with my BFF
-trips to Starbucks with my Dad
-signed up for sign language classes (starts in August)
-started taking pottery classes - I really enjoy getting my hands dirty and creating things from a block of clay
-hanging out with Dan each and every day and laughing together
-playing games with Ryan and hearing him laugh
-having a new text-to-speech app written especially for me to help with communicating out in the world
-read a good book
-met a cousin for lunch and had a lovely afternoon
-received some very nice cards and emails that help me feel connected and loved (thanks!)
-may have found our next home just a few blocks from the beach

Some of the bad moments included:
 
-seeing what ALS looks like as it advances in the faces of wonderful people who don't deserve this anymore than I do
-feelings of hopelessness
-not feeling safe to travel by air and missing a special family event because of it
-having the need to sign up for sign language classes because of how poor my speech has become
-had to take medicine to control pain, something I try to avoid
-feeling sorry for myself for having to deal with this, and especially while I am still so young

In some ways I have really struggled with that last one.  I spent some time feeling sorry for myself and wishing for another 30 years to share with my family.   Of course, the reality is that illness and death are indiscriminate of age, gender, religion, whatever.  I mean, yes it totally sucks for me and my loved ones, but after meeting other people, both men and women, who are living with ALS I saw that no one is ready to deal with losing their ability to eat, walk, talk, hug, breathe, no matter how old they are, how old their children or grandchildren are, no matter if they are in their 40s, 50s, 60s, 70s, it just doesn't make any difference.  Truth is, few are ever ready to go out without a fight even when you see it coming at you head on.

So for now, I will make every effort to keep a few projects in the works (pottery, writing, whatever) and it looks like we'll be moving into a home of our own again soon which is always full of fun projects.  I believe the best, maybe only, way for me to keep my head in the game right now is to focus on the things that make life worth living - of which there are so many in my life - because no matter what I do, life will go on, with or without me so I might as well get on board for the long haul.

Tuesday, June 5, 2012

The other side of fear...

It is terribly frightening to learn you have an untreatable disease and as it sunk in, all the fears for what may come, how soon it may come, and in what form it may come found their way into my mind.  Fears about how it would feel to lose control of my body, piece by piece, until I'm left with a shell controlled by machines and doctors (no thank you, by the way).  Fears for not just how I will deal with it, but how the people I love will deal with it all, both while we are going through it and after I'm gone.  So many things to fear, but I know fear is not the place I want to live in.

While most of us don't know what tomorrow will bring, I find it was much easier to plan for the future before April 30th.  This May was just kind of a blur that included a lot of fear, sadness, and a deep sense of loss.  But, as June approached, I started to get my bearings little by little.  I am now beginning to feel, at times, a sense of freedom that seems to reside on the other side of fear.  There is a freedom in knowing that I can control how I live today, tomorrow, and everyday for the rest of my life.  I can choose my mind set, my beliefs, how I spend my time, and how I act and react in each situation I am faced with on a daily basis.

There is a freedom in knowing that while today I am walking on the beach, laughing, making plans for the near future, and just basically living my life as I wish, tomorrow is completely uncertain.  That uncertainty can be approached with fear, but that only adds stress and I don't need that.  Instead, I choose to face the uncertainty with a sense of freedom and acceptance, with love and gratitude for every good thing, every wonderful moment I am able to share with the people I love, both near and far, rather in person, in thought, or through technology.  I believe that uncertainty can bring beautiful experiences to one's life if only we are open to them.  I believe in keeping a positive outlook and focusing on all the blessings in my life, and there are more than I can count!  This doesn't mean I am fear-free but it does mean that even when fear is lingering, I am not allowing it to control how I live.  

I am finally in a place where I can feel what is beyond the fear, and that is a freedom to live and love without worry for what could come - there are no guarantees for any of us, so I am choosing to enjoy my life and do the best I can with each day.

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.