Saturday, August 18, 2007

Sunday Scribbling - "Dear Diary"


Dear Diary,

I never allowed my self to plan a future as an able bodied adult. I have always planned my future around my illness, but my progression has been so slow that I now feel I will be here for a cure. My friend Sharon sent me stem cell procedures being done in other countries, for a hefty price, at http://www.cellmedicine.com/. This is not something I'm not comfortable with at this stage of my illness. If I had only a few years, I'd probably be on a plane next week.

I wish I knew diary why I have been so blessed in my survival because I know the norm is 3-5yrs. I feel guilty as I see people lose an ability every month, while I sit here planning to move toward a dream retirement. When that "hands on healer" put her hand's on me years ago she said "I cannot heal you because you have become your illness." I remember feeling pissed that I had wasted my time. She continued by saying "until you let go of your illness you cannot be healed." Her words haunted me for months as I tried to deny their truth. She healed me in a way that day, but not my ALS, my mind. Along with my faith, love and a different attitude, I've made it to see a shot for a cure in my lifetime.

I'm dreaming of the possibilities of a future now. I'm thinking of the young people living with chronic illness in their families. The little soldiers who lose a part of their carefree childhood. I'd love to do a mountain summer camp, where these kids can hang with other kids that understand how life and death stress can change you. I'd get counselors, pastors, speakers and stress free FUN. I would love if Dave and my children could be apart of it, sharing their own stories of caregiving. A family business of healing with fun and no stress. So many people are getting sick in families. With so many two income families, single families and crap health insurance, the children get lost in the frey.

I'm not sure my family and friend's ever think that far into the future with me. I've been keeping my eye on the research and have been secretly planning an alternate future. I'm keeping this dream locked up in my beautiful diary with a tiny golden key, but not for long. Dave, get out your dancing shoes because you're in for some crazy fun!

41 comments:

Chris said...

My dream is to someday have a summer camp for kids just like yours. I realized I wanted to do this after my brother passed away. Actually, it's more than a dream. It's a goal. It WILL happen, one way or another! We should put our heads together and just do it! lol. I can't wait to see what you have in store for Dave!

Star said...

What a neat peak into your diary, Tammy. I want all those things and more for you. First: retirement, second: your trip to New England, then the rest of the diary. :)

bella said...

My dear friend, you have exuted nothing but a positive outlook while dealing with ALS since I started reading. I am so happy you are in it for the long haul and to fight the good fight. I always knew that with your personality and your spunk that you could be an inspiration for others. I wish you only success with your new ideas. xoxo You are the spark that other people need.

paisley said...

what a candid look you have allowed us into our world.. you are a very strong woman,, and i am happy that you shared this with me... i had no clue....

Rob Kistner said...

Bravo Tammy. Live your life fully and fiercely. You never know what the future may bring. But don't live in waiting -- live with love and wonder... as I know you do. You are remarkable!

Herb Urban said...

What an inspirational post. I am glad I stopped by. Enjoy that crazy fun with your dance partner!

giggles said...

Another tearful poignant and inspiring post from you! You will never know how much this post touched me. Love to you hunny bun....hope all your dreams come true....Many prayers of love sent your way! Beautiful music too!

Hugs Sherrie

Fledgling Poet said...

What an inspirational post...you live your life with such a positive spirit and that provides so much strength to persevere and carry on. I aspire to be live my life in such a positive way...thank you for a wonderful read (and great music!).

Patois said...

What blessings you have. I hope you wear out many a pair of dancing shoes -- and mountain shoes as well!

Olsum said...

From Wiki: "Rather, those suffering advanced stages of the ALS disease may retain the same memories, personality, and intelligence they had before its onset." It would mean that we may have certain control of how we could see the present moment, moment by moment. To me that's good news, since we can choose not to think too far ahead on negative issues and watch the present moment to be peaceful and calm. And you've shown us how by being the "Daily Warrior". Thanks for sharing! I'm inspired by your sharing in this post!

Paul said...

What a great vision you have. I hope it doesn't stay locked up in your diary for two long.

Thanks for visiting my site. You're right by the way. JH isn't me. My piece was half-fiction.

Bongga Mom said...

Good for you. You are a wonderful person and certainly deserve this chance at a longer life, even if you don't fully understand how or why it was given to you.

khambagirl said...

Oh Tammy, what an inspiring peek into your diary. I would like to join you in your summer healing camp for families. I would love to help out!

Clare said...

Hi Tammy! I'm so happy for you that you are dreaming of your future and all of the possibilities. The mountain summer camp for kids sounds awesome. And I'm so glad your recent biopsy came back ok!!
:)

chiefbiscuit said...

You are a walking miracle! You have a gift for inspiring people - you inspire me. Thanks Tammy!

Tabor said...

You are just the type of person that when you set a goal or when you get an idea it inspires, it gets born and you nurture and restore. I am truly amazed at how rich and full your life is. There are so many lives that drift from day to day and are very small in comparison to yours.

gautami tripathy said...

I sincerely wish your visions comes true. You always inspire me.

Jone said...

I am inspired whenever I read your posts. You go, girl. Thanks for sharing.

Becca said...

You have such marvelous and inspirational ideas living in your head (and heart!) You have so much left to do, and I think God knows it :)

Remiman said...

Tammy,
Seeing the future is the whole secret to getting there. The mind is more powerful than any illness, I really believe this. Your spirit and powerful will meshing with acceptance vs denial has, and will continue to serve you well. And even though you visualize a future (dancing girl)you live each and every moment to the fullest.

I'm glad your OR went well. ;)

If i may be so bold; May I have a spot on your dance card?
rel

wendy said...

I understand your feelings. You are a force.

Kamsin said...

Am looking forward to reading about that alternate future you have planned unfolding into reality!

strauss said...

How terribly confronting to have that healer ay those words, I can almost hear the time stand still when she said that to you - how do you reply to something like that - despair or letting go I guess. How long since your initial diagnosis?
I remember when my fatehr in law became sick with cancer, we were told to not leave the country because he could go at any time, he died three years later.

turquoise cro said...

Your dream is Beauty Full just like YOU dear Tammy!!!Keep the Faith!!! What a HAPPY day in Blogville to LOOK FORWARD to!when our Tammy is cured!!!((((Tammy)))))Our comments will probably overload the internet!!!We will all scream for happiness like Mary on the HOT TAMALE train!!! LOL

Chris said...

That's a beautiful thought, Tammy. Possible too, with the right 501(c)(3) tax status and some corporate backing, so never say never.

As far as "why" you have been so blessed, I think you are looking at it from too much of a "me" standpoint. Maybe it isn't just a matter of being fortunate FOR YOU but maybe someone else has a greater plan for thousands of others THROUGH YOU. I know you inspire me often and only can imagine what you do for someone who reads your blog and has ALS or any other progressive syndrome.

tinker said...

What a beautiful dream it is, too - and dreams DO come true - I hope Dave's polishing up his dancing shoes! XOXO

Robin said...

What an inspiring post. You dream on, reach out and grab that dream retirement with both hands and don't let go.

THE BLUEST BUTTERFLY said...

Good for you. You remind me of Christopher Reeve...he didn't give up either & he got pretty far.

Mardougrrl said...

Gorgeous post. You are such an inspiration--I got chills when you wrote "I cannot heal you because you have become your illness." Those words have touched me in a way that I can't yet explain--thank you for sharing that.

I hope your dreams come true every day. xoxo, M

Kelly said...

It's a blessing to be able to squeeze every ounce of life out of every day. It's easy to forget what's really important.

Frances said...

What a beautiful post and site.
Thanks for sharing your dreams - it's an honor.
Your visit and comment at my blog was much appreciated.
Take care,
Frances

Left-handed Trees... said...

Just beautiful...I will hold your dreams in my mind!
Love,
D.

Bug said...

What a beautiful post!

vicci said...

I love this My Friend...you are indeed so special! I have been taking big breaks from the computer and doing other things...enjoying life....being outside....BIG congrats to Dave...looks like you guys had fun! Happy the mammo went well...mine is in September....hope to see you soon...XXXOOOOOOOO

Lucy said...

I love that You have "stopped being your illness"
You keep planning that beautiful future Tammy. YOU WILL reach your dream and LiVE happily ever after. ( You have really moved me with your diary entry xo)

TI said...

What a wonderful diary entry from my twin. I love how you love life. And I'm always thrilled when you drop by. Birthday just around the corner! Your twin.

Tori said...

Thinking of you Tammy!
Have you made your trip to Maine/VT yet?

daisies said...

i so love this, so love you ~ the way you shine out of your words in beautiful optimism and pass your gift along to all of us ~ smooches and lots of love ... xox

Pam said...

My dear friend, first and most importantly, I am happy to hear of your negative biopsy. Glad you caught those freaky cells in time.

Dave's party looks terrific, he rocks, especially when he's making a pie.

A cure for ALS, a constant dream. I, too, would want to reach out and help if I was better... especially the children.

paris parfait said...

Tammy, you are so wise and inspiring. I hope all your dreams come true. xoxox

Liza's Eyeview said...

I have not visited for a while... (I somehow accidentally deleted you on my blogroll but I had put it back now).

I posted something today .. I need you help in praying for that gal Keri afflicted with ALS. I don't know her personally but my heart goes out to her and hoping to reach her even just through prayer.

Tammy, you are an inspiration. A Daily Warrior indeed!