Sep 182011
 

so many things have changed in my life in the past year… and the lives of those around me…. it’s been a long year, a hard one too in my ways…. I’ve learned some things about myself, I think…

my feet wouldn’t move forward… they would go up and down, side to side…but not forward… and man did I have to pee!! looking back that’s what I tell coach… at least I didn’t pee on the floor ha!

I remember that when my feet wouldn’t move how I was not really frightened but concerned… it was first thing in the morning, I wasn’t awake enough to realize the implications of what was happening – or not happening in this case. I continued on with my day, getting dressed and going on to work at job 2… coach went with me so that he could visit with his mom while I was working. I can’t remember if we talked about it… I think I mentioned what had happened and sort of laughed it off.

But as the day wore on, and the more I thought about it… I knew. In fact, when my kiddo and grandgirls came to visit me at job 2 I told her that I think I have multiple sclerosis… we laughed about it…

It was lucky for me that I had my annual doctor appointment already scheduled for the 23rd. As the week wore on, between the 18th and the 23rd,

but I don’t need to write all about it here…. it’s all in my blog… a quick synopsis is on the MS page over there on the right and of course if you search MS or multiple sclerosis over to the right there, you will find the posts…. I don’t want to go through them all right now… I just don’t…

FRIENDS

let’s see… good things have come out of this – it hasn’t all been bad… I have many new friends that I cherish… and even if I don’t them in person, face to face, I feel as they are so close to me… they have made up the biggest part of my support system… more so than the people I know in real life…

I will not attempt to name names here… you all know who you are! those up there in north texas, and california, and florida, and canada, and all over the world! you all mean more to me than you will ever know!

the people in my real life have been interesting… some have fallen away, never to be heard from again (she never contacted me again)… and others stepped up in ways that I would have never imagined… I’m a likeable sort of gal, this I know…but I guess I didn’t realize what people really thought of me… it’s not my business what people think… and through this comic tragedy, I have found that there are many folks who think very dearly and highly of me that I wouldn’t have thought of….

COACH

and coach… bless his heart. he is a freakin rock…. that man is one of the best things that has EVER happened to me… and he loves me. he is here. he hasn’t faltered in any way… I still have fears where he is concerned but they don’t creep up on me nearly as often… we have cried, we have laughed… we have researched and studied this thing… and we have continued to live our life together, albeit a bit altered from what we were but that’s okay. I have days of feeling so guilty… it is incredibly important to me to support him in his coaching and power lifting… to be there, in the stands, watching and loving and supporting… and some of that has changed… I hate it. but there are days where I just feel like a big heap of steaming dog poo… and I have to stop, stay home and cry over it all….

ART

art… drawing… creating… man, this is a big good thing that has developed for me… all because of the beast… it has become a huge part of my day… relaxing, calming… it helps my hand tremors amazingly… it helps my focus and concentration… and it allows me to not think… and I look at how much progress I have made in the realm of drawing… it’s changed quite a bit from the first one to the last one I’ve posted

AND THEN THERE ARE THE FEARS

what is going to happen to me? when is it going to happen? and who will take care of me? how will I earn enough money to pay my bills? will I stop breathing? will I lose my mind?

I have decided that I don’t care about losing my mobility near as much as I care about feeling good. Last winter when it was incredibly hard to walk and people were laughing at me, and even trying to trip me up…well that was so devastating for me and I just didn’t think I’d be able to handle all that…

But now that I’ve gone through the worse summer in the history of the world, I know better. I have felt like shit for so many months now, but my mobility has greatly improved….. and the conclusion? I would rather not walk and feel decent.. truly. Get me that bad ass scooter!  I will paint it up, make it mine… little wicker basket, air brushing, cool ass horn… I got not problem with that at all as long as I can feel decent….

WHAT I DON’T KNOW NOW

Someone asked me the other day if MS has defined me or have I defined it…. I have been thinking about this question. And as unfortunate and stupid as it sounds, MS has defined me. It is the center of my world, whether I want it to be or not. There is no way for me to define it… it comes in and grabs hold, changing everything about a person… the way I think, what I value in life, how I get to where I’m going, what I eat, when I sleep, how others view me…. my humor, my writing, my drawing, my relationships with others….EVERYTHING….

and there’s not one ding dang thing I can do about that…

this isn’t nearly all I have to say about that… but this post is quite long and I don’t want to keep you…. or lose you either… I am quite positive there will be more to come on this topic… I mean, it’s big.. it’s my life…it’s the past year of growing, dying, grieving, disintegrating, learning, loving, fearing, and living

Being an adult is like looking both ways before you cross the street and then getting hit by an airplane.

  15 Responses to “One Year Ago Today”

  1. The one year mark is tough, looking back, you know you knew before the diagnosis came in. Some good can from bad…your art, your new friendships, a continued zest for life, even though it has been altered, and the love and strength of those that will never let you down.

    • you are so right karen… i don’t know why the one year mark is a tough one… i guess maybe because everything was a new experience and not necessarily an easy one… i predict that the upcoming years will be a bit easier – i still don’t know what to expect but i have come to terms a little bit with what is going on in my body… still sucks!

      and the good that i have come across certainly is something that makes me feel blessed each day!

  2. I have lost friends over it too. I assume they think it is catching. The Dorothy Parker quote sums it up nicely for me ‘Champagne for my real friends, Real pain for my sham friends’. She was a bitter and twisted cookie, but right about this one.
    I was diagnosed in MS awareness week. And in many ways it was a relief. There was something wrong and I could start to work on it.
    I hope you plan to have a really loud air horn on your scooter/chair so you can sneak up behind people and make them leap.
    Coach and your art are lifesavers. And we love to hear about/see both of them.
    Lovely post. Thank you.

    • for the life of me i can’t figure out why people disappear when something a bit tough comes up…

      my scooter is going to be all tricked out LOL gotta have some fun with it you know….

      i feel very blessed to have you here visiting and commenting! makes my day, truly

  3. Ahhhh, you can go ahead and say the name. I know you just didn’t want to embarrass yourself in front of all your blogger buddies. Them knowing that you have made friends with a fat, pot bellied, gray haired, snaggle toothed blogger up in Wise County. I’m not skeered though… Hi my name is Wendell and I’m proud to have gotten to know this old gal in the last year.
    I laid in the shadows and hung around these parts for a long time before I commented to you. Along about the time that you were diagnosed, it became clear through your posts that you were going to need a few helping hands. Since I can’t stop by and see ya every couple of days, I thought writing a short comment on here now again and telling you how pretty you are, how great you write, and how much I adore those Zentangles would be a much better “pick me up” than you having to look at my ugly mug every few days. It seems to have worked. You haven’t changed a bit. You may have physically, but mentally your still sharp as a tack, and your writing skills never seem to amaze me.
    Thank you Sherri for sharing your walk. Thank you for being an inspiration for me to get my lazy butt up every day and get out the door. Thanks for the times when I squat down to pick something up and get up and moan about it, that I think of the place you might be in at that moment and how it might feel for you to get up. Thanks for being you……Hugs
    Tell the Coach hello for me( I need to stay on his good side, don’t want his big bear ass coming looking for me) !!!!

    • WENDELL! WENDELL! WENDELL! hahaha

      you are my angel… you and whit both… you guys… man… i don’t even know how to put into words what you two have done for me… you motivated me to look up, move forward, and pursue new things… you two stay in my thoughts daily… your visits here and the comments uplift me and make me laugh… even the, um, off color ones… i have rolled laughing at some of the things you say…this is good!

      i’ve always been so afraid of being the proverbial “debbie downer” by talking about my journey but i must do it… and it is so nice to know that it inspires others or helps in some way… i hate to be all doom & gloom just for the sake of spewing it haha

      i look forward to the day we can all meet and so does coach! i look forward to many more bloggie visits and comments from you too! and i will continue to lurk around your corner as well 🙂 i get on her each morning knowing there will be something around the corner for me to read about

  4. Wow. I am stunned that someone would drop you as a friend because you have MS. I don’t even know what to say. *She* has to come to terms with *your* having MS? I can’t imagine how much this hurt you. I think this world is full of people who have the inability to love and care. She is one of them.
    I am so glad you have Coach and your art. I am glad you have supportive friends all around the world. I am glad you have your blog. 🙂

    • oh barbara, that comment just cut my heart in two when she said it… i just decided that she is in a place in life that she can’t or doesn’t want to deal with anything that would require more energy and compassion that she is willing to share… but i never thought that would happen…

      coach is my rock, my angel… he is one amazing man! and then i have all you guys here on the interwebs… my community of friends! i love it!!

  5. well – well you know.

  6. powerful, human, honest. Sherri, you have such power of soul and intellect. I could have kept reading and reading more and more. I’m thinking of that moment, one morning ago today when it all began for you, how you spoke to yourself on some deep level and you just knew. But at the doctor’s office – that moment – I can imagine it. When what you know becomes true, really true and you die just a tiny bit but still something doesn’t compute. I’ve had that moment that changed my life forever and left me wondering -what happens now – no illusions of control left – how can this organ let me down, brewing something and I had no idea it was happening, until . . . and now what happens?
    Well, people in our situation don’t know. That’s the reality. But as you said, it’s not all bad. Things lost make space for more of our possibilities to find room, our heart (well, the spirit heart) opens up – and sometimes alone with ourselves closes tightly around our fears. You have your guardian angel in Coach and I in Camerman. I have opened up to gratidude – sometimes I feel I have become gratitude. I know you and even though we have never locked eyes or hugged or cried and laughed together – I know you become gratitude too. The days of just being a lump of shit – well Buddhisticly speaking, it’s al one taste. Shit is also Amitra and Pee is also golden …. something (need a lama for that). But even on the days that we waver – we are still fearless. So even if MS has defined you, it does not define your essence – and Sherri, maybe your essence is expanding faster than whatever MS may rule over your body. Fearlessless. I’m not sure of the spiritual definition of that. But I would like to think that fearlessness means reinventing ourselves over and over no matter what is thrown onto our path and moving through that with grace and attitude, and always growing bigger than the newest big obstacle will ever be. Ach, Sherri, I love you dearly my sister friend.

    • paula, i don’t know how you do it… how you find so much in my writing… but you do… and i am so happy for it… i just love you my friend!

  7. Sherri, Even though we are one of those friends that have never met in person,I feel like I have made a wonderful friend in you. Your artwork will forever be cherished in our home. And…I want you to know that thru your writtings YOU inspire me,with my health issues that I have experienced this past year,YOU inspire me to move forward every day,not to dwell on what might or could happen…but to be happy in the moment. To also cherish the love of my life,that is my rock,Ariel never falters and is always there for me. I can’t imagine my life without him. So my friend, I just had to tell you, I think you are fantastic….and I look forward to the day we meet in person. Have a wonderful day my friend!

  8. A powerful, powerful post. So much I can identify with. As for that bad ass scooter, I can’t wait to see it; not because I want you to need it so much as I can’t wait to see what you do with it artistically.

    • when i get my scooter and trick it out you know i will be posting all sorts of pics and stuff about it! woot! it’s going to be fun…

      maybe i should start providing the scooter trick-out service for those who want it…

      if we have to lug our asses around on a motorized assisitive device, it may as well be cool, pretty, fun, and an extension of it’s owner’s personality

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