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.
