DISCLAIMER: looong post. Feel free to skip.
This particular post has been a little harder for me to eek out. I'm not really the "sharing" type. (Which is ironic because I do a great deal of sharing in this post). But I do want to use this forum as an opportunity to publicly thank and acknowledge the many people that have offered their love and support from the very beginning of this journey. In fact, I really hoped the treatment I underwent in Mexico would be successful so that all of these amazing people could have a "reward" for their diligent hope and prayers in my behalf. I didn't want to disappoint them.
The doctors in Mexico (one Mexican and one American) were very forthcoming. They never promised me anything (other than their complete attention) but it was obvious that they were very hopeful. Like a hungry beggar with outstretched hands, I felt a thrill when any morsel of hope was tossed my way. It felt like sweet nourishment to both body and spirit.
I was so excited for the prospects ahead that when all of Cancun began to shut down in anticipation of an impending hurricane (Level 3 to start), I was barely phased. That was not the case for the rest of the city, however. Previous experience with extensive hurricane damage had obviously breathed the fear of the "worst case scenario" into all of them. Shops emptied out their stores of all merchandise (to avoid the possibility of looting), taped up the windows to offer support and aid in damage control. Red flags whipped in the wind on all the beaches which were void of any beach chairs or signs of life. Restaurants and grocery stores shut down (hello food storage) and the hotel sent notice that we were to leave all of the balcony furniture inside the rooms, pack our bags and put them in the tub, and then remain in the room away from the windows.
Even as the storm continued to get closer, I would meet my little taxi driver out front of the hotel every morning, drive to the clinic and spend a couple of hours there doing the next "step" in preparation for the stem cell extraction and infusion. Driving to the clinic on the day of the procedure there was an almost palpable air of fear and anxiety. Under normal circumstances, the procedure is performed in the closest hospital. They had just received word that all of the hospitals were cutting off their electricity and would not be accepting any "non-emergency" patients. So the clinic it was. I will spare you the details but to say that there were many failed attempts to start an IV (no surprises there...the U of U hospital had to use an ultrasound machine and even then it took 7 different tries) and sucking the bone marrow from your tibia feels like your toes are being pulled inside out back through your leg.
After, Jordan and I rented a car and drove to Tulum to tour other Mayan ruins. The whole afternoon I was doing a constant internal check- "Do I feel any different?" "Can I move my mouth more?" "Can I whistle?" "Hold Jordan's hand?" "Can I breath easier?" "Sit Indian style?" "Touch my toes?" (Oh wait..I couldn't do that even before scleroderma..)
But no. Nothing. The real kicker was when everybody else started asking. Jordan. Then the doctor. Then the doctor called again. And again. And I all had to show for it was a migrain.
But it was okay. I had always felt like it would be a process. As much as I would have liked, I was pretty certain that results would not be seen overnight.
In the meantime the level 3 hurricane was downgraded to a tropical storm. "What a bunch of sissies, I thought." Then the storm hit. And I was the sissy. Holy cow! As the storm gained speed we tried to find food at a make-shift diner in the basement of the hotel. The sideways pelting rain and 90 mph winds made the slick sidewalk impossible to walk on in a straight line. I honestly thought we were going to be blown into a neighboring country. I was scared. But hungry. And hunger always wins out for me. So we persevered into what felt like an upscale refugee camp for the hungry, disappointed land-locked vacationeers. I was glad we had another reason for being there than vacationing. It would have been much more heartbreaking, I think. After all..I still had hope.
I was able to maintain that great hope and composure until my last follow-up visit at the clinic. It was then that it became very obvious to me that both doctors had expected much more. Both were trying hard to hide their surprise and discouragement. I was crushed. The "process" that I expected was not what they expected.
We flew home to loving friends and family who all wanted to know how I "felt." What I really heard them say was, "are you healed?" I began to think a lot about that word. What exactly would it mean for me to be "healed?" What about hope? Is there finally a point where you relinquish hope and insert acceptance? Maybe I was to that point? Maybe I needed to just accept and move on?
And then Catherine asked me to share my thoughts on pain and the atonement for her Relief Society lesson that Sunday. It was a tall task. What could I possibly share that would be anything that these women had not already experienced in their own lives and didn't already know? But, of course, as is so often the case when we are asked to serve or share, it wasn't for their learning and growth but for mine alone. In the process, I concluded that hope and acceptance do not have to be separate. I can continue to have hope and yet accept where I am today. After all, every single day, I continue to be healed.
This is what I shared that Sunday in Relief Society:
I recently returned from Cancun, Mexico where I underwent unconventional treatment for scleroderma-a rapidly progressing disease I was diagnosed with close to 7 years ago. During my stay at the clinic I was repeatedly asked to measure everything from my level of frustration performing certain tasks to the degree of pain I was experiencing by using a scale of 1-10. Though I understood why they chose to use that system of measurement, I couldn’t quite get past my distaste for it. It is just too subjective for me. My '6' could very likely be someone else’s '2' or my '4' today could be an '8' tomorrow. So when Catherine asked me to share a little about my experience with pain, I felt some discomfort sharing something that I know is very subjective-something that each of you have, do and will experience in your life.
For these past several years as you can imagine-or have maybe even experienced-I have tried everything form diet to detox, supplements to prescriptions, physical therapy to cranial therapy and medical treatments to medical experiments in search of healing from a disease that has no known cause and no known cure. Though none of my endeavors have been particularly successful, each has been important in providing momentary hope. Most days, however, I have felt like an innocent bystander watching from the sidelines as this disease slowly robs me of many aspects of my health that I only recently took very much for granted. With the continual hardening of my connective tissue and various internal organs, poor circulation and poor digestion, gone are the days of my early morning runs, being invited to join my sisters in running the Ragnar, whipping my hair into a ponytail, being oblivious to what I eat or where the nearest public restroom is, and getting an uninterrupted nights sleep. The pain and discomfort is very real for me, but on a scale of 1-10, the physical pain ranks lower in comparison to the frustration and grief I have felt over the loss of the seemingly “little things.” Holding the hand of a loved one, not being able to accompany my family when they ski or sled, putting on tights with my skirts, having to be just a bystander for most previously enjoyed activities, feeling helpful, cutting my own meat, tying a bow, being recognized or feeling good about how I look and kissing my cute husband.
There have been more days than I would like to admit where my impatience with my limitations or discomfort has translated to impatience with my sweet, unsuspecting family. Or where I have uttered those very ungrateful words, “why me?” Days where I shuffled around feeling sorry for myself and countless moments of jagged crying in the car or the shower pleading with the Lord to just “take it all away.”
But along the way I have known-truly known-that through the Savior’s infinite atonement, I can be healed. I have prayed for, fasted for, and hoped for that healing. And it is through that same gift that I have experienced much healing. I know that the Savior chose to experience all of my pains-of every variety-through His own physical experience and not just spiritual revelation. He has taken my self pity and healed it with gratitude, my disease-provoked insecurities and healed them with confidence in new areas and a profoundly increased confidence in Him, He has taken moments of discouragement and healed them with hope. And the real, physical pain-He has healed that too. I have cast that burden at His feet countless times and have been given the strength and the desire to push through and accomplish and even be fully present for more than I would have even without it. I have become very aquatinted with "grace."
His intimate knowledge and awareness of my feelings of isolation, fear, and loneliness have allowed Him to cover me on both sides of the veil with friends and family that have filled me to overflowing with love and support.
So, on a scale of 1-10, how much do I dislike this disease?
And on a scale of 1-10, how willing would I be to give up the lessons learned and the opportunity to come to know my Savior more fully and feel of his love and healing power more completely? I wouldn't.
And to scleroderma, for that, I am eternally grateful.
1 comment:
You are amazing, inspirational and I love you x
Post a Comment