So...it's bye to the Harley

[New normal]

"it's a soft tail deluxe with screamin' eagle pipes," the Harley salesman said. As I was seated on the saddle, with both hands on the bars, I looked at my husband, grinned mischievously, and said, "well, THAT WOULD BE ME!!"

Love at first site, and with turquoise and lavendar butterflies and roses professionally added to the fenders, plus an inscription of "Life is Good" on its tail, "my bike" and I became one --

That was close to ten years ago when my husband and I were redefining our lives after raising five children, building a business, and surviving many joys and tragedies together -- the good life of near retirement was to begin.

We have had magical moments on the hi ways and byways -- through the valleys of the Northwest, the beautiful mountains of Montana--knowing we were blessed to have good health and an even better marriage. Life indeed was good.

Last July 4, at 64 yrs old, I rode the Oregon coast. Today I spend most of my time in bed, take loads of calcium and magnesium, and 1200 mg gabapentin a day plus Valium to tame tremors that have taken control.

My story has been told in former posts. While I have suspected MS for over thirty years, having episodes that required MRI'S about every 5 years...I am still not diagnosed...but I don't need the label. "tagging" it won't do me a lot of good...too old for the new drugs...last neuro said probable MS, tremor specialist sd not yet confirmed...yet cannot explain my rapid decline in 8 months.

The kaleidoscope of symptoms I hv hd for 6 months have decreased, but the fatigue and tremors/shakes are relentless.....and worsening to include facial tremors and seizure like activity. Cog/fog is worsening.

So with a healthy reality check, I realize that "shift happens" and there needs to be a parting of the ways for me and my passion....

But WAIT, there's more....so as I am in my usual,sleepy stupor recounting all the reasons why I love my bike...I had a FLASH -- not pins and needles kind... A REAL FLASH OF BRILLIANCE!!

HELLO to a bright blue Quad ATV with electric steering!-- and perhaps some roses and butterflies. I got a smile from DH when i told him my plan...and said I want a bright jump suit with flames.....maybe Evil Knieval type....

I sneaked my husband's quad out of the barn today, and roared up our county road waving to the neighbors out in their gardens...just a little test of my dream...exhilarating experience....while it lasted...

I am back in bed, legs trembling from the experience, my heart beating fast from the brief adrenaline rush...with the thought that maybe my passionate days of riding are NOT completely over...

Thanks for letting me share with you....as I drift off to sleep wondering if I can get a four wheeled machine with "screaming eagle pipes" ....may never happen...but as I say good-bye to the past, I just GOTTA have a dream for the future.....

[Thomas Jackson]

Sounds like you are keeping your harley attitude. A very good thing. I'm still revving up to a Mo-Ped attitude!

[ladibabe]

Hi I'm. A rider as.well I have a VTX 1300 Pearl white chromed out. I am 40 and praying I get 20 more years of riding. Thank you so much for telling your story you brought hope to mine.

[techie]

I like to ride on the back of my hubbys' Suszuki. Not quite a Harley but fun for me. It's the first motorcycle he has had in a long time low enough for me to get my leg over.
Have to work on my dismount a bit. Landed head first(with my helmet still on)
techie

[New normal]

Thanks to both of you for your responses...only if you love to ride can one relate...I needed just to vent and to see it in writing..sure enuf .... there are people here who even understand us "bikers". (that's a joke from a chubby old grandma)

I grieve somewhat for those who get diagnosed while young....had I known "officially" 30 years ago I wouldn't have the memories...instead, I rode a lot of miles with numb hands...or one handed on long stretches...the last years we were off the road early and a jacuzzi was a requirement....times I would tremble from fatigue, stay an extra night....before resuming.... But made the memories.

I "pushed" becuz of the passion...now I wish I could push for necessity....for me it is like a flaw....I lack the discipline many of the heroes here in the forum have...to stay on the highway and engaged regardless of the headwinds....now I choose the path of least resistance..and sleep.

So "bye to my Harley" means a lot to me metaphorically...I need to acquire the strength of Thomas and rediscover my passion on a scooter...right now, it's not there.

Here's to you lurkers out there..I know u are there...and even tho u don't come out u give me strength cuz I know you are ahead of me on the highway paving the way for the rest of us....thank you for enduring the elements...thank you for persevering in spite of the unfortunate misinformation that impedes a cure....you keep your passion to live life regardless...

Here's to you, the super heroes......"Life is Good" .... even better with the throttle open.....

[HuntOP]

Sad to say, "all good things must come to an end". You flipped from one chapter in the book of life to the next one. The only throttle open here is the joystick on my wc. So as you journey down that road on your scooter someday, know that i'm right there with ya in my wc, 4th gear (wide open) wind still in my face!

[New normal]

YEA! Huntered, THAT'S what I wanted to hear!!

You get it! You so GET IT, cuz u r further down the road than I....and, yep, I know it is a new chapter.....and, yep, it is reality that faces me every morning....and, yep, I am trying...

And......yep, Huntered, I really need people like you right now to tell me for sure there are new horizons that await me......new perspectives....and as one experienced MS'er said when referring to speech issues, "often it is the softer voice in the room that commands the most attention, not the loudest".....

Guess, I hv to come to grips that the view from a slower pace can be as fulfilling as one with a turbo engine....just takes time to adjust.....hence, my name, "new normal"... Some altitudes need different fuel mixtures ...just tryin to find my own pace......just hopin to get to the next fill up, right now...

As you and others know, easier said than done.

Thanks for listening.........thanks for the wave...

[Jules A]

Your spirit amazes and humbles me. Be well and I hope you are able to continue riding in whatever capacity you can.

[New normal]

Jules's - thank you for the kind words -- I can feel your soft intent.

Transition is hard...not clearly understanding what the adversary is... U all know the feeling.

My eight yr old granddaughter stayed this week with me -- we found a go cart track -- I taught her the trick of accelerating past people and "lapping " the other drivers -- we were the loudest on the course, with her screaming "go, grandma,gooooo"!

For five minutes we were absolutely removed from any problems the world could offer --- til I had to get out of the cart -- both legs buckled -- the adrenaline did a number on me -- Reality struck -- tremors have not been the same since....nor can I ignore them now in my legs.

Adjusting, I guess, it is all about adjusting, accepting, acknowledging all what has been said by so many in this forum...it is what it is....so grateful for the memories made. Humbled that I have been able to do what I can..... Trying to prepare for tomorrow......

Thanks to all for sharing in MY journey......Kinda ironic -- I love a fast pace.....but now I am facing an accelerating deterioration.....for once I wd b happy for things to slow down a bit...gosh, it's nice to have a place to let these feelings out...U r good people!

[Seasha]

I have to say I'm loving what you have conveyed! Your spirit is going 90 even if the body says 30. I used to love to be as busy as possible, multi-tasker, mom and career and all that. The faster the better...bring it on!

Well, years of living with MS gradually put the brakes on all that! I remember shortly after I had to take early retirement due to disability, I was sitting on a bench in my yard with my camera. The butterflies were flitting around like crazy around a flowering bush. I was capturing photo after photo of these great busy creatures for what seemed like hours.

I caught myself thinking - W0W - now this is the life! How wonderful just to sit long enough to enjoy the beauty around me! I had been so busy with life's stuff that I was amazed at how much of the simple little thing I had missed.

As you slow down (decelerate), I hope you also find more moments to see what's in front of you

[New normal]

Seasha.....read your post 3 times...thank u so much...to get personal, after I made that post, tremors on my left side were so bad I cd not sleep - neither cd my husband...pillow talk began in our darkened bedroom -- the kind of discussion that happens when the house is quiet and we are too weary to keep up the "happy face" facade....I sd I can handle all the physical aspects of this disease process - even changing life styles....but I sd to him the hardest is not being able to continue as the companion he has known for 42 years...Soft responses comforted me..."it's ok." "we can do this" "never thought it wd be us" "I love u anyway"......

I speak of the motorcycle simply because it symbolizes our attitude of grabbing all that life offers, living on the edge, and enveloping ourselves in the environment...I too was the queen of multi tasking... Working 60 hrs a week as an executive assistant, with three teenagers at home still, a foster child, full time college getting my bachelors and masters, managing my husbands business -- super woman --- and...in the end, I feel I literally fried my brain...

I do not need to seek the formal diagnosis altho I follow up with the tremor specialist July 23...I cn feel the disease winning....

So in the still of the night, we agreed we would take one day at a time and as a team having been yoked together through so many challenges in the past...we wd try to keep our relationship vibrant....

Somehow, it seems less threatening when you are holding hands in the dark and there's nothing "knocking at the door"...but what will tomorrow bring?

That is why I love the people who post here....they give insight to what may be around the corner...their truth is also my reality...the only thing I have to use as a basis to understand what REALLY is ahead..... And having a new lens, as you suggest, makes the world a different place for exploration...just at a different pace....

Sorry to be so long....DH has fallen asleep, tremors are fading, dawn approaching..... .. I am left to reach out to strangers with funny names....who understand....thanks to those who post AND those who lurk.....there really is power in numbers....I feel it.....sweet dreams to those who can find their peace.......I hope one day I will be able to help others once I become authentic .....and truly find a union with this disease.........

[techie]

Last weekend we purchased a 2006 Honda Goldwing.
It has heated seats. Heated grips.(?)
I don't do the driving so I don't know the names of 'em.
Boy if I had a seat belt on I could go to sleep on it!
techie

[New normal]

@techie!! Yea for you! B sure to check out electric underwear!! THE ONLY WAY TO FLY!! Serious, under clothes that plug into the engine...like an electric blanket all over.....I always say, "there is nothing you can't do if u have the RIGHT underwear!". On second thought, I guess that is what I USED to say....... Happy riding!

[Cat Mom]

New Normal, your posts in this thread have literally brought a tear to my eyes. Although not a bike person myself (horses are my "drug of choice) your deep and heartfelt words really got me. You are an extremely lucky lady to have something in your life that you love so much and are so passionate about, sadly, so many don't. I think that is what makes us live, rather than exist.

Just 2 thoughts:

1. Can you snuggle up to your hubby on the back of his bike or is that not safe for you? I'm not trying to be funny, would you consider a sidecar so you and the hub can still take some trips?

2. Have you ever considered writing about your experiences with your bike? Either a blog or a book? I'm sure you have a lot to offer and it will keep you connection to your bike alive. Just the little bit that I read on this thread got me choked. I could tell by your writing how much your bike was a part of you, that it was healthy for your soul.

I wigh I could do something to change this unfortunate turn of life events. Maybe you'll like the quad better!

Take care, I feel for you.
Jen

[New normal]

You nailed it, Catmom...the bike is a true metaphor for what is happening to my life as I have known it....

My son was head injured at 15...had brain surgery...flat lined 3 times...with a long rehab. We were very close...an extraordinary young man, talented, with high ambition.

His life changed in an instant. He was so intelligent he was aware of his shortcomings and frustration became his most difficult challenge. He took his life when he was 30 because he just couldn't withstand the trials.

While his death was devastating to me, it was his life that was worse. He was married and appeared happy and had many accomplishments. But when I saw him in the morgue, I saw scars on his arms from years of self abuse......years of hiding the fact that he was dealing with pain he could not communicate....pain of the unknown future, pain from loss of dreams, pain from not "being normal".......and pain I never knew.

I lost ten years as grief overwhelmed me...I became stagnant...no growth...existence only.....colors dimmed... I NEVER KNEW!!

One day, I mentioned to my DH that I wd like to get a dirt bike like I had as a young girl in rural WA state.....that evolved into our riding our street bikes.....BECAUSE....I cd escape the pain by the diversion of the bike....I cd feel emotion.... I cd find joy in the environment... I cd make magical memories with my husband......

Now without that diversion, I find myself understanding the trials my son endured....I often use the word warrior when I refer to those who post here, cuz my daughter called him a warrior at his service... And now that I know "fatigue" "memory and cog issues" "emotional instability" "sleep issues" "fear" etc etc, I understand more EVERY day what he went thru...and what MS'ers go thru....

I am just at the beginning of the war with only a few battles under my belt.....while those who lurk, and those who post have a longer history.......But I FEEL their strength.....

Yeah, there goes the Harley... Catmom, you are so right...the diversion is gone....and I am closer to my son than ever....and hunters said it is a new chapter...yeah....a new chapter.....and yeah, I hope to find another passion.......and good for u , Catmom for the suggestions.....

The bike simply epitomizes a life that is gone....just as my son had to face....I am trying very hard to emulate my new friends here in this forum who have found peace, acceptance, and new pathways ...maybe slower, but no less significant.......thanks so much for listening....ahhhhh, makes such an impact to know SOMEONE understands.......