Swimming Through Tears

When I have been asked to share all that has transpired regarding the health of my family in the past few years, from Celiac to MS to Chronic Regional Pain Syndrome to Ehlers Danlos Syndrome to Postural Orthostatic Tachycardia...it's almost hard for people to believe it, myself included. These conditions have robbed my husband of his dental career, my son of sports, my daughter of large buttered pretzels, and other more substantial and personal treasures and dreams.  These syndromes, conditions, diseases instead offer uncertainty, anxiety, pain in all of their various colors and shades that are too numerous to paint. Many doctors, counselors, close friends who know of the gravity of the situation, the appointments and tests, infusions, therapies, the hard days have asked me, "And how are you holding up?" or "How do you deal with all of  this?" Sometimes I feel embarrassed or not worthy of such a question. Yes, I have MS, but my family lives with DAILY nagging pain, DAILY dislocations, DAILY fatigue, nausea, blacking out, autonomic roulette and very little sleep. And I wish I could take it all upon myself and let them be free. I can't stop it, I can't control it. I feel similar to those who may have 'survivor's guilt' in that I'm 45 with MS but can run a marathon and my children are young and sometimes struggle to just take a shower. Many may be shocked to hear this. My kids are fairly active, beautiful, talented. For the most part, they live what looks like normal lives. You can't SEE many of their challenges. They push hard to do what may be effortless to others. They push harder to do what is hard for others. They often crash at home where they can be real and rest. And while I am seeing the beauty that rises from the ashes, I will still make the same wish when I blow out my birthday candles from now on. I try not to think of it all at once. I know there are people who watch their children die and starve and suffer terrible things. I know I have so much to be grateful for. I know that things can get better with modern medicine, with a powerful God. I have hope and I am very proud of my children and husband who try and thrive and keep on going amidst all of this. They are so much more than their rare diseases, their genetics. I am grateful for their compassion, their insight, their grit, their softness, their passions, their friends.  I am grateful that my MS symptoms are mild and that today I can still walk, drive, communicate and care for myself and my family.  I try to train my mind to capture every black thought and reshape it into something gold and glowing. But, I don't always win. And when the battle is raging, I swim to cry. A few times I have let the emotions and stress rage until I was literally and metaphorically numb. It sent me into an MS flare and I had to have assistance getting out of the pool. Now, I have learned to temper it just enough. It is important for me to keep feeling. It reminds me that I am fully alive. I want to be fully alive.

Swimming tHrough my tears. I'm not drowned by them although I am fully submerged and my lungs work hard to lift and fall. Moving, tiring, and strengthening all at once. Over and over. Determined. It's night and only one underwater bulb is casting a glow. It's just enough light so I can see the next strOke and not dash my head against the grey. The clear water stretches out linear and I know there is an end and a ladder. I glide through the deep, eyes closed, mind open to every fear, grief, pain, and no one can see it storming, gushing. It is safely, silently escaPing except for the occasional unrestrained sob that breaks the warm surface. I realize that the tears could choke me but they mix with the water and I am able, I am buoyant and I am propelled with resistance.  Reaching to the shallow and pulling myself up with the silvEr bars, the tears slide off my back and drip in puddles around me. I'm up, I'm out, I'm done. I'm ready to dry off and take on land, born of water. I will sleep better tonight and tomorrow the breathing will be easier.

"At least I have........this day."

Every Thanksgiving since I can remember, someone at the table has said, "I'm thankful that we have our health", myself included. Little did we know that incurable chronic illnesses/diseases/syndromes  were lurking in the shadows of nearly every chair. I almost have to laugh at it. It's better than the other option.

 People like to say, "Well, at least I have my health." I've been thinking a lot lately about that statement and perspective. Billions of dollars and probably billions of cumulative hours are spent each year on products and programs to help us maintain, repair, renew and improve our bodies to reach our best as relative to our culture. Whether it is for "health" or asthetic "wellness", it seems to be a blurry distinction if at all worth discerning. As one who loves to exercise, I must admit it is not always for reasons void of "appearance" or turning back the biological clock that in many ways will tick on regardless of my efforts. But, lately, I can't help but think about what life would look like if just as much or more effort was put into the things that tend to go on living longer than our looks and the strength of our bodies.

 Volunteering at my grandmother's memory care facility has been heart-breaking and heart-warming. There are retired doctors, teachers, pastors, mothers of five children, world travelers, athletes. Photos of their past are preserved in sparkling glass at the entrance of each of their doors. Standing strong, living life to the full, engaged in activity. Then, you turn the knob and enter a different world. Most of them are wheelchair bound or stooped over a walker shuffling their laps around the building in their swollen stocking feet. Many times, they are crying but not able to say why. They lived a full life but their minds and bodies went awry. Is it because they didn't eat right? They didnt exercise enough? They didn't take the right vitamin or rub the right essential oil on their feet?  Is this what we assume? For the most part, I am doubtful. They are human. We live in a broken world of disease. We grow old. Our bodies and minds grow old. We can't stop it. Not to say that we shouldn't gently respect ourselves and be responsible for what we have. I'm just saying....it won't last forever. Not until GOD renews our bodies on the other side will we live forever young.

So, what are those "things" that we should put more time/money/effort into? Im asking that of myself. From what I have learned of the elderly, the sick, those who have passed on and those left behind....I want to live for what I value the most..EVERY DAY. Im going to write down my thoughts and things I have learned because there may come a day when I can't articulate them anymore.  I am going to start giving more of my time to loving, listening. Im going to try to smile more. Im going to invest more time and money into building memories, relationships. Im going to stop thinking so much about my waist size and whether or not there is a chemical in my granola bar. Im going to try to put more time into something that will last...not my body, not my mind....but my legacy. Yes, I will continue to eat gluten free because I have Celiac disease. Yes, I will give myself an injection every night to stave off relapses with my M.S.. Yes, I will read more than the comics in the paper to keep my mind sharp. Yes, I will swim and go easy on the chocolate. But, I know that someday, no matter what I do, it will start to crumble. I may make it to 90 or 103 like my grandmothers who are still striving today. But, when/if I get to the point where I may not even know who I am, I hope that my legacy defies my shell. Im 44. I guess it's time to figure out what exactly that will be. I cannot say, "At least I have my health", but I can say, "At least I have this day."

Roar - Katy Perry (Cover by Ali Brustofski) Official Music Video

http://www.youtube.com/v/afUWccsC68A?version=3&autohide=1&showinfo=1&autohide=1&autoplay=1&feature=share&attribution_tag=x_Q6ic4d5K-nvXpxIjIatw

Whenever I hear this song in the car, I open the sunroof, crank up the bass, and live in it!!! So fun!

The Can List

I always liked the idea of a "Bucket List". From time to time I have thought about all of the things I would like to do before my final day...assuming it is far off in the distance at 89 (the age of my maternal grandmother) to 102 (the age of my paternal grandmother). But these past few years have changed my perspective a great deal on how many opportune years I might actually have available to accomplish small feats to big adventures. After all, Aunt Marge is along for the ride. The possibilities seem to be countered by the potential impossibilities that could loom closer than I think. With M.S., it feels like dreaming is a gamble. Right now, the battle feels more in the mind than in the body. It feels like this is the critical point in the journey.

Every morning, with no cure in sight and over 900  used needles in the red sharp's container on my bathroom counter,  I am aware that I am going to die with this disease. The question is, "Am I going to LIVE with it?"  Sometimes, when my head hurts and I feel like there's an earthquake raging inside my body, I'm tempted to stay in the bed, forget the swim, forget the to-do list, forget the needs of others, forget the small feats and  big adventures. But, thankfully, I still have the cognitive ability and a higher power to fight the apathy. I know that every day is a practice for the next. The more I practice getting up and going when I CAN see, the easier it will be for me if I get up one day and CANT.  If I practice determination while I CAN walk, the easier it will be if I wake up someday after a lesion decides to locate on my spinal cord rather than on another obscure crease in my grey matter...and I CANT. I have also found myself in peculiar situations that have encouraged me, humbled me, inspired me, broken my heart and taught me a great deal more than I had counted on. I will write more about that in my next blog.

For now, let's just say that I have dismissed The Bucket List and am forging ahead with The Can List. Death could be 50 years away. My inability to use my fingers to strum the guitar could be only 10 years away. So, I signed up for guitar lessons last month...while I CAN. My inability to drive my dream car with legal vision might only be 20 years away. So, I will drive the black Jag with tan interior while I CAN. My inability to remember and organize my thoughts might only be 15 years away. So, I will write down the things that I have learned and want to share with my children while I CAN. These are a few of the items on my Can List. But daily, I think about how I want to spend my hours. I think about what matters to me. I think about what I CAN offer.  My inability to safely hold a baby and walk confidently across a room may be only 5 years away...so I will hold and bounce and walk the babies in my life while I CAN. My inability to get in and out of the pool could only be 7 years away, so I will get in and pass on my love for swimming to the next generation while I CAN.

 This is how I want to live with Aunt Marge. She doesn't drag me back..she is pushing me forward. She is teaching me what matters. She is the friend who is more concerned about telling me what I need to hear instead of what I want to hear.  Not that I am doing it perfectly or even admirably. I'm simply doing it. I'm practicing it. I'm getting up...because I CAN. I'm certainly not ready to kick the Bucket.

Two Years.

Well, it has been almost been two years since my diagnosis.  I remember because my two oldest girls were away on their annual youth group mission trip to Mexico during Spring break. I didn't want to tell them the results of my spinal tap until they were home.  So many things have changed since that day.  And thankfully, many things are still the same.
During the time of my diagnosis, my husband was facing a very hard reality of his own.  He had been suffering from nerve pain in his hand/arm for over eight years. He knew that he could soon be facing the end of his dental career.  After visiting over a dozen specialists in the Pacific Northwest and undergoing several surgeries, there was still no relief.  No cure.  We had sold our dream home and  moved into a wonderful bank-owned home at a fraction of the cost. We met with a private disability agent. After eight years of suffering, he was finally taking a serious look at quitting. The next day, in an effort to work out some of my fear, anxieties and sadness for my husband, I put in my favorite Tae Bo workout dvd.  I punched and kicked and sweat my heart out.  Then I stood in the hot shower and cried and cried and cried. My legs went numb and felt heavy and paralyzed.  Then my arms.  My heart was racing and I couldn't control my emotions.  I stumbled out of the shower, wrapped up in a towel, grabbed the phone and laid down in the hallway to call Jack. Jack, who had enough to deal with.  Jack who was fighting his own battle.  Jack,  my provider, protector, care giver. A few weeks later, Jack, who after finding out that I had M.S. decided he couldn't quit. He wouldn't. There was too much unknown ahead of us. Besides the fact that we had four children to raise, college, weddings, bills, medical expenses.....
And so, for over a year, he worked through the increasing pain in his arm as he helped me deal with my "new normal".  He slept about three or four hours each night.  Seeing his overwhelming discomfort, fatigue and frustration day after day,  I told him that we just needed to know from God if he was supposed to quit. We would be bold and ask God to make the pain soooo unbearable that he knew WITHOUT A DOUBT that it was the right thing to do. Be careful, you just might get what you pray for!  Within a few days, Jack described his pain like dipping his arm in a trough full of gasoline and someone lighting a match.  Zero hours of sleep. Zero relief. Zero doubt....it was time.
And now, here we sit.  Jack is tired.  His shoulder is on fire tonight.  He can't sleep so he is reading a book called, "Managing Pain Before It Manages You".  My hair is still wet and I am tired from teaching a swim lesson. But, I'm happy to be able to swim and able to contribute and able to show my kids that you don't let your limitations defeat you, but it's ok to let them soften you a bit.  I am happy that although some things have changed, many things are still the same. Although my husband is no longer a dentist,  he is still a wonderful provider, protector, care giver. Although we are living a little differently, we are raising our kids, sending them to college, paying bills...looking ahead to those amazing weddings. And we are still looking to God for answers.  In a few weeks, it will be Spring break and Jacqueline will leave for Mexico. She will be building a home for someone who doesnt have one.  I feel blessed.  She will be engaging with people who exude joy despite the pain of poverty. I am inspired.

Now News is Good News

   I can never seem to find the time to blog.  But today seems like the perfect day to set aside a few minutes for reflection and sharing.  I sit in a lovely Bed and Breakfast in the quaint town of Ashland, OR.  My husband and I celebrate my latest medical report.  My first annual MRI since diagnosis shows "no new lesions".  Aside from the two herniated discs apparent  in my neck, this is very good news.  It means that the daily shots have been worth it. The medication is slowing the progress of this disease and all those research fundraising efforts by thousands, maybe millions of people over the years is blessing one more person. I always wondered about the Walk for MS, Bike for MS, Skydive for MS??  Is it all just a scam?  Does that money ever really help in finding a cure?  I never imagined that the questions would roll around in my head as they do now.  It's hard to believe that I am living proof of the miraculous answers taking place.
  Our celebration has included tennis in Lithia Park, leisurely walks, fishing, dining, reading...and epiphanies about our blessed lives and the years ahead.  I saw an elderly lady at the ice cream shop yesterday.  She held her cane close so as not to block the way of the younger crowd quickly passing by to choose their passion.  She had no idea that I was intently sitting and waiting to learn of her every slow movement.  She walked at a pace that seemed too painful and frustrating for me to grasp.  Yet, she smiled as she patiently gazed upon every child-inspired flavor.  Bubble Gum, Razzle Dazzle, Rocky Road.  She looked dignified with her salon perfected white hair and rosy makeup.  Yet, she was comfortably donning her clean and practical black athletic capris.  Her sixty-something daughter kept calling to her from a few freezers away.  "Mom? Do you know what you want?"  "Mom?  Have you decided?"  "Mom?  How about Vanilla Bean?"  Her Mom continued to consider each potential dream.  I felt like saying, "She just wants to take her time.  She just wants this experience to be everything it CAN be.  She just wants every step to be sweet and meaningful because who knows how many moments like this are left for her?  Let her be." She was so happy to just be there in the ice cream store window shopping.  Children were running free, college kids were flirting in the back of the line, dads were the heroes of the day as they paid for the delights, mothers sat in the booths with a moment to breathe while everyone was cheerful and satisfied.  And Mom, in her eighties had already been there, done that.  Now, she simply enjoyed the choosing. 
  I see my life ahead of me.  This new wrench in the expectations I once had is working something fresh inside of me.  I see possibilites for tomorrow that look good and hopeful.  Still, I really don't know what another day will bring.  But, I do know today.  I know the warm sun.  I know the clean breeze.  I know this man that I love.  I know a tummy full of creamy ice cream.  I know there is a sweet little girl running and rolling down the grassy hill in the park.  I know a brilliant white mountain in the horizon.  I know a deep breath.  I'm slowly tasting every one.  I'm filled and content right now in this moment to just be here amongst all these dreamy flavors.  I'm learning to be patient and experience the experience like Mom.

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