I needed this today, maybe you do too...

It has been so long since I have posted, and I apologize. Sometimes life gets in the way.

I received this email today from my aunt, a neatnik who sometimes forgets to love and live in the moment. This made me smile thinking that perhaps she internalized the lovely and loving message, and I hope you do too. Healthy, happy wishes and I promise, I'll be back soon - e

***

I would never trade my amazing friends, my wonderful life, my loving family for fewer gray hairs or a flatter belly. As I've aged, I've become kinder to myself, and less critical of myself. I've become my own friend.

I don't chide myself for eating that extra cookie, or for not making my bed, or for buying that silly cement gecko that I didn't need, but looks so avanté garde on my patio. I am entitled to a treat, to be messy, to be extravagant.

I have seen too many dear friends leave this world too soon; before they understood the great freedom that comes with aging.

Whose business is it if I choose to read or play on the computer until 4 AM and sleep until noon? I will dance with myself to those wonderful tunes of the 60 &70's, and if I, at the same time, wish to weep over a lost love... I will. I will walk the beach in a swim suit that is stretched over a bulging body, and will dive into the waves with abandon if I choose to, despite the pitying glances from the jet set. They, too, will get old.

I know I am sometimes forgetful. But there again, some of life is just as well forgotten. And I eventually remember the important things.

Sure, over the years my heart has been broken. How can your heart not break when you lose a loved one, or when a child suffers, or even when somebody's beloved pet gets hit by a car? But broken hearts are what give us strength and understanding and compassion. A heart never broken is pristine and sterile and will never know the joy of being imperfect.

I am so blessed to have lived long enough to have my hair turning gray, and to have my youthful laughs be forever etched into deep grooves on my face. So many have never laughed, and so many have died before their hair could turn silver.

As you get older, it is easier to be positive. You care less about what other people think. I don't question myself anymore. I've even earned the right to be wrong.

So, to answer your question, I like being old. It has set me free. I like the person I have become. I am not going to live forever, but while I am still here, I will not waste time lamenting what could have been, or worrying about what will be. And I shall eat dessert every single day (if I feel like it).

(Wish I knew the author; I'd hug her tightly and perhaps a bit too long.)

I wish this for you, without the pain, without the tears.

I have discovered what it's like to have my "normal" create sadness within others, and I don't like it. Good Midwestern Irish/Germans do their right best to make other people feel comfortable, not make them cry.

My precious mamma sobbed this weekend. People I've never met at Mom's church teared up meeting me, and said that they are praying for me; I made my friends Aimee and Cathy tear up yesterday; and all of these tears just break my heart.

How does one adequately lie and tell others that everything will be okay - that things are good? I dread this upcoming surgery, as I have no idea how I will bolt it on through what promises to be exquisite discomfort. I simply can't bear to see more people sad about this.

Several people have asked about how one keeps a positive attitude when their body is literally falling apart before their eyes, and the answer is simple. The alternative sucks.

If the desire to curl up in a fetal ball in a dark room under a mountain of covers feeling sorry for myself ever takes over, I do it. Alone. Yes, that really happens, but who wants to be around that person? I sure as hell don't.

The sunny disposition is not an act, however. It's a newfound appreciation for the things in life I took for granted for 40 years. Don't become the person that makes others cry before you discover truly being present in your life to enjoy these simple things:

The color of the sky in the morning
Shapes that clouds make
The intricate veining of every individual leaf
The amazing softness of your pets
The warmth of a doggie belly
The sound of a bumblebee
Cultivating a garden
Basil and Ginger
Umami
The feel of a breeze
Moving a joint without pain
Yoga's Savasana
The breath of a sleeping loved one on your skin
The smells during cooking
8,000,000 other things

It's not focusing on the things I can no longer do that I loved, but discovering the joy in the things I've always had and never realized. I wish this for you, without the pain, without the tears.

Billy, don't be a hero...

You know when you wake up with with a ridiculous song in your head, it's just going to be one of those days.

After writing incoherently into the wee hours of the morning about a military conflict issue, 'Billy Don't Be a Hero' was the annoying song my brain's jukebox of random tunes selected. I haven't heard that song in years...

Clearly, what we struggle with in our conscious mind hangs around for a while in the subconscious, dinging around trying to make sense of it all.

Wonder what the song will be tomorrow, as a new MRI showed that one of the arthritis-induced bone spurs on my ankle snapped off at some point in the last week and hunkered down between the bones in my ankle. Little bugger (maybe the size of a pea) apparently is like Heed - spherical, but quick pointy in parts.

The pointy parts are amassing a nice glob of fluid around them and shredding the neighboring tendons. Nice. Doogie Doc said, "Hell yeah, if I were a tendon I'd be pissed too." I liked him immediately.

So add to my collection of braces a fancy ski-boot-clippy number, all stylish in black and grey.

Now we play the waiting game for six weeks to see if it floats its way on outta there. Hubs is taking the tendon route and is livid that we're not going in immediately and digging it out.

I have a mixed bag of feelings about that, and about the future. Trying to keep up appearances that I am okay with all of this change is becoming more difficult with each new surgery. At least I'd get a chance to wear that cozy Bair Hugger again.

Just as I finish typing, a shiny silver hair drifted onto my screen. That kinda says it all.

The Blue Streak

My new ride arrived today. The irony of the name is not lost on me, nor I'm sure the other rolling souls who travel on The Blue Streak.

One swears up a... Which I did during a practice ride when my thumb and the frame of the simple machine met the solid oak doorframe to our kitchen. The color is, of course, a completely obtrusive bright blue. Chosen, perhaps to be as obvious as possible to others while one streaked down some previously unforeseen hill or HC ramp.

The arrival of the wheelchair has not caused as much internal strife as I imagined. Perhaps because I think it will be only an occasional tool used when absolutely necessary. Even as my new bulging disk and ankle burn sharply through the cocktail of pain meds, denial is still only a river in Egypt.

My mom has taken the news of the chair purchase much harder than I have. Her stubborn German determination keeps her walking on ankles, knees and hips long dry from loss of supportive tissues. She views walking as a gift and boldly refuses use a cane, even though each step causes her to grimace. It is the same determination that my grandfather had as an octagenarian whose heart was only working at 10-15% efficiency in the days before he passed. He insisted he felt fine.

I remember my denial of his impending death during my last visit with him in the hospital, where I even joked that the oxygen mask contraption he was wearing made him look like a frat boy with a bra on his head. We laughed long about that. That is the last living memory I have of my precious Grandpa.

Perhaps denial is a family trait that I have inherited, through a long line of strong German farmers. So you fall and nearly rip your nose off (uncle) - 'tis but a flesh wound - tape it on with duct tape and get back to work. So you have Stage IV breast cancer that will ultimately call you home within the month (aunt) but you still attend the party. Certainly one never talks about the affliction! This is where I peel away from the norm.

With medicine's luck and God's great mercy, the Blue Streak and I will travel many roads together.

We are headed this weekend to the Ren Faire, which ought to be a real trick with the coming rains. The greatest gift that I will have on that trip is my little girlfriend, Analise. A woman far beyond her nine years, she isn't mortified by my limitations. At Game Fair, she held my hand by holding my cane. We hobbled proudly, her hand over mine.

Maybe there is some lesson to be learned in her unconditional kindness and caring. At the sage age of nine, she sees in people what the rest of us have forgotten. Behind every cane, walker and wheelchair there is a person that somebody loves, and isn't ashamed to hold their hand in public.

This is who I really am.

I am coming out today, and coming into the transparency I preach about in life and in social media.

I have what we in the pain community call "invisible pain." We look normal - whatever that is - we act normal and we paste on smiles and a happy countenance when we are out and about. Then we go home and load on icepacks or heating pads, get out the support braces, and come into our "real" selves and sometimes just cry.

There are tears that flow and we don't even know that we're crying, although most of the time they are tears of loss for the things we used to be able to do, for the things we won't ever be able to do, and for our families that know the reality and cope with this on a daily basis.

In my case, I was recently diagnosed with Ehlers-Danlos Syndrome. Yeah, don't worry if you've never heard of it, it is a rare collagen disorder that hits people with differing degrees of disability. What it means is that, as my Rheumatologist so gently (not) explained it, is that if our bodies are bricks and mortar, my mortar is crumbling.

My spine is collapsing, and all but two of the lovely cushy disks I had in the past are either bulging, collapsed or in the process of collapsing. The disorder causes my fingers and hips to randomly dislocate for lack of tendon strength, and my right hand is pulling apart - literally. The tissue that held it together for 40 years has dissolved, either through a bajillion corto shots or simply the disorder, and many days, I just tape it together.

Sports tape, braces and canes have become my best buddies.

I have been wholly and undeservedly blessed with the most amazing Mom and husband who understand the tears, the loss and the frustration... and share in it, as there is nothing that medicine can do to stop the decay. The disorder is not curable, only managable through a host of pain meds, shots and potentially fusing of particularly fussy bones.

My graduate degree was chosen out of crazycoolness, and out of knowing that I need to find a career that doesn't depend on my ability to walk or move around much. My mind is fully intact, but my body sometimes doesn't cooperate and move as the brain directs. Thank God for computers and wireless.

Telling this to whomever choses to read it has been a decision I've had great struggles with. Many of my Twin Cities social media buddies have seen the braces and canes, and only a select few know what's really going on. Joel E. Carlson, bless his heart, was the first person I told. His confidentiality has been priceless.

Coming out of the chronic and incurable closet is difficult. It means that my many pairs of comfy golf shoes may only see a ride in the cart, that my clubs may become useless as striking the ball and swinging my arms has resulted in past spontaneous dislocations. It means that we had to get a wheelchair for the State Fair, and while my niece loved the ride and thought it was fun, the looks of pity and wondering why a 40-year old who looks "normal" would be in a wheelchair were cutting.

When you see me out and about, please just understand the cane and the hand braces. It's okay. I'm okay and the same person you've met, just now the person who is more honest with you.

I have decided to launch my business wholeheartedly this Fall, as the realization that sitting at a typical work desk, or having a job that requires more than basic walking may be too much for this new body of mine. Being able to help people and run a business mostly wireless is the best career gift, and one I look forward to taking advantage of wholeheartedly.

Thank you for taking time to read this, and yes, I am the same person. Just the same person with a fancy selection of canes instead of golf shoes.