This morning I woke up at 5:00am. This time it wasn’t because I felt a snake in my bed which turned out to be muscle spasms. I didn’t call the cops on myself, and I didn’t wake half my neighborhood. Nope, this morning was significantly less eventful…for which everyone is grateful and expressing this gratitude by continuing to sleep.
I was getting up early so I could drive to UNC Chapel Hill for a psychology appointment. I took care of my morning routine and left an hour earlier than I’d normally need to in order to arrive comfortably on time…if I were using my wheelchair. Today, however, I wanted to walk with my bright pink crutches (love the color!) rather than using my wheelchair. But it meant significant planning ahead because it takes me only 10-15 minutes to speed around in my wheelchair and cover the distance from the parking deck to even some of the most remote in-the-belly-of-the-whale locations inside the hospital complex, but walking with crutches is a different story entirely, and I needed to plan for the walk to take at least an extra hour. I’m slow, and I need to rest when my legs get to burning like torches, or risk pain flares and bone fractures.
While I drove to UNC, I kept a song on repeat. It just touched my heart and described exactly what I was experiencing in so many ways. My heart burst for two opposing reasons: the bitter pain of loss of several life dreams and the overwhelming nature of trying to manage so many things all day and every day; and the overflowing joy and peace that God was pouring into my heart which was spilling out in praise. How such strong and emotionally opposite experiences can reside simultaneously in one human soul is a mystery to me. As I drove and prayed with the music on repeat for a solid hour, I felt that the sadness, which itself seemed a bottomless pit, appeared to gain a shallowness when compared to the depth of the joy and peace of the Lord. It was hard to describe, but true as true could be to my soul.
I left the car with my wheelchair inside. Don’t go anywhere, okay? I need you to be here when I get back! I might actually need you BEFORE I get back. I didn’t know how the walking was going to go. I just felt I needed to do it, for the exercise, and for my mind’s sake. Walking, especially walking with a destination and arrival time in mind, requires significant focus and determination. One slight misstep and my legs are toast…and I would need help from pedestrians around me. Lord, just like I require strength to get out of bed in the morning, I’m depending on you now to get me to my appointment on time and safely. Please don’t let anyone touch my leg by accident. Please don’t let me have strong muscle spasms or step wrong or twist anything. Thanks. I walked slowly, alternating a two- and four point crutch gait down the sky bridge. I’d chosen to walk down the least steep bridge even though the steeper bridge was significantly closer to my destination; steep and me don’t get along anymore…so much for hiking with crutches.
My prayers continued. God, my heart could just explode for so many reasons all at once. Everyone in their life, if they live long enough, is going to know what it feels like to explode from grief. But not everyone will know the relief and joy of exploding in the praise, faith, and trust that you give to your children. Would you help me today somehow demonstrate to those who pass by as I walk by that YOU are my all? Would you help me give them some little glimpse into the joy you have for those whom you’ve chosen? Please give me opportunities to show your love. Please give even me a love for the people you have made in your image. I began paying more attention to the people who passed. Walking as slowly as I was, eyes had time to meet, I had time to observe and interact if the opportunity arose. If I was using my wheelchair, I would have whizzed past going downhill on the long sky bridge. I like to make it my own kind of game – go as fast as I can without terrifying or knocking anyone over…oh, ok, sometimes terrifying is alright. Walking provided a very different perspective.
I felt like shouting and singing, right there, as I plodded. I wanted to tell the people who passed about the God who loves me and who loves them as well, that His name is REDEEMER and He’s come to save them from their sins and redeem all the pains in their lives for His glory and their ultimate good. I came so close to doing it. Maybe next time I actually will. I doubt I’d get arrested, though I suppose I might get punched out by a grieving parent or loved one. I can understand such a reaction, however. Hearing these things about God when you just want to either deny He exists or blame Him with flaming anger couldn’t feel more insulting. People in hospitals tend to be stressed and emotional, often for good reason. Some will press into God, seeking comfort there. Others will run from Him.
As I made my way through the hospital, an older gentleman accompanied by two younger women, presumably family members, maintained eye contact with me. He seemed intrigued and asked sincerely, “How are you?” I told him I was very well because the grace of God sustains me, and I stopped walking. I asked him genuinely how he was and he said he was alright, and that he enjoyed my smile. He moved in to give me a hug. I didn’t feel weirded out at all, so I accepted, then wrapped my arms around his back and gave him one of my OFFICIAL hugs and held on for a few seconds. I felt like I’d been hugged by a grandpa, and it was just what I needed. When I let go and backed up a step, I saw tears in his eyes and a smile on his face. The two women were also smiling. We exchanged a few more words and I left with “God bless you, sir”. I took a few steps in my intended direction and turned back to say “You made my day!” I had a feeling that hug made his day too.
On certain Wednesdays, UNC hosts various vendors in a farmer’s market fashion where you can step up to the tables lining the hallways and speak with folks. As I passed by, I heard a woman approximately my age say that she was gluten and grain free. Naturally my ears peaked. It seemed as though the other women speaking with her had commented on her clear complexion. “Oh, I’m gluten and grain free too! And I don’t have sugars either,” I piped in. I was now quickly joined in the conversation which continued with a woman who appeared to be about 55. She was interested in my diet and wanted to know why I used the crutches. I gave her my two cent explanation of both CRPS and SIBO. Didn’t bother to throw any of my 20+ other diagnoses in there, but I told her I was grateful to God for His grace that gives me strength each day. She asked my name and told me it means princess in Hebrew, asked if I knew that and if I was Jewish. Her questions were quite entertaining and I could have developed a whole new personna on the spot if I was wishing to joke around, but I chose to be truthful. 🙂 “No, I’m not Jewish, but I do read the Bible.” I don’t remember what precipitated the revelation, but she told me she was 70 years old. I just about dropped my teeth in a less than tactful manner, and she said “everyone thinks I’m a lot younger” and she sure did look a LOT younger! “but I have spinal stenosis and arthritis…I keep going, though, just keep moving”. I had to keep moving if I was ever going to make it to my appointment, so I left her with a smile and told her it was nice to meet her, as it truly was.
I passed another vendor. She was a stylist who specialized in ethnic hair. I chuckled slightly as I passed, knowing I was bald underneath and wondering if she thought she could actually “do” my hair. I also saw a lot of steam/smoke rising from the special curling iron she was using on a client’s hair, and I wondered how that was going to turn out! She noted my amusement and stopped curling for a minute to say “Wow! I love the PINK [crutches]!” “Pink is my favorite color,” I said. She replied with exuberance, “Dang! You just can’t keep a Diva down!” I laughed, never having once in my life considered myself a “Diva”.
The idea struck me a bit ironic as I had to choose between the elevator and the escalator. See, I’d not ridden an ESCALATOR for at least 8 years! I’m afraid of them. It’s hard for me to get my legs to move the way I want them to move, in the direction I want them to move, and at the time I want them to move. I could miss kicking a 3 foot beach ball by a mile. So timing my step onto a MOVING STAIRCASE and timing my perfect step off of same MOVING STAIRCASE is about as anxiety-producing as taking the SAT test. But my legs were tired and I was closer to the escalator than to the elevator. I’d kinda wanted to take the escalator before, but the fear held me back…besides, I almost always use my wheelchair anyways which means escalators are out. “You just can’t keep a Diva down!” Ok, here we go.
I said a few more prayers which sounded a few shades more desperate, something that fits into the category of “HELP ME GOD, I THINK I’M GONNA DIE!”…you know, like that. I was aware of the presence of a man behind me as I stared down those moving stairs with my glare of intimidation. I figured I got there first, and at least he was behind me if I fell going up! so he had to wait till I was ready to get on. He was patient, quiet. I verbalized as the cracks in the steps passed the yellow line. “One, two, three, four, five, six…” and off I was. I had a death grip on the escalator hand rail, both crutches in the other hand. A sudden surge of accomplishment and pride filled my mind, and I flashed the guy behind me a toothy grin. Then a sudden sense of terror… Oh crud! How do I get OFF of a moving staircase?! I had not yet thought that part through and I was already nearly half way up, too distracted by my partial accomplishment to think through its grand finale. And what about the dude behind me? If I took too long getting off, would he wipe out? Aaagh! I became super focused and realized I had to get this move right. Who has actually TRIED to keep a Diva down anyways? I mean, are there clinical studies proving that Diva status is so powerful it has the ability to defy gravity? I was about to test it out. I put my weight into one leg and lifted the other while trying to balance with the hand rail. No spasms NOW, okay? I was at the yellow line again…time to STEP. I made it, but I had to catch my balance using the wall and try not to trip over my crutches which were now in a tangle. I heard the dude behind me scuffle a bit, but he recovered. Whew! “I DID IT!” I told the man, flashing my second toothy grin. “That’s the first time in more than 8 years that I’ve attempted an escalator. Just goes to prove you can’t keep a Diva down!” He smiled back courteously and picked up his walking pace…
My appointment with Dr. OE, my GI psychologist, went well as usual. We are beginning to use biofeedback and autogenic self talk to train my body to increase blood flow and circulation to my extremities through relaxation. I’ve made some progress thus far but I have a looong way to go. She provided examples of things I can do and say to aid in the process and gave me the homework assignment of writing down some of the images, phrases, and methods I use that I find helpful. I’m going to be seeing her weekly so we can work on this together. I’m looking forward to her using guided imagery as I’m naturally a rather visual thinker and I find visual thoughts very compelling and directing. I had not seen her for a few weeks, so she spent some time “checking in” to see how I was doing in general and whether or not I was continuing with home psychology visits on a weekly basis. I informed her that my therapist had changed jobs and I was working on getting that set up again and had already done the work of contacting both agencies. Since the plan is for me to start a new medication for nerve pain which may have less than positive mental health effects (given my history with such meds), we both greed that it was important for me to have weekly visits where a therapist could touch base and note any adverse drug reactions. I also think it’s good to have a therapist with whom I can work on the DBT and CBT stuff while I’m focusing on biofeedback with Dr. OE. I shared a few of my deeper concerns with Dr. OE and she was sensitive to the weight of the issues I shared while still encouraging me to respond positively to the challenges and to give myself some time to rest and chill out. I told her about how I had taken a “health holiday” and how much fun I had with Mike in the canoe. She thought I had managed this well and deserved a day off from my daily grind. I left increasingly hopeful about using biofeedback to manage both stress and CRPS. It’s another tool in my bag.
When the appointment was over, I had another one hour walk back to the car. Along the way I stopped and talked with a few more folks, and to others I gave a smile, still praying that they would see something of the hope of Christ in me today.
Walking back, I watched peoples’ eyes. A man and his wife walked briskly, his face showing signs of shock, hers of deep worry. A doctor passed, who my unfiltered mind named “Dr. Sourpuss”. I tried to quickly erase that one…Sorry, dude. I shouldn’t have called you Dr. Sourpuss…that wasn’t very nice of me…and apologize silently, I suppose to myself? Sick cancer patients clinging to the arm of a caregiver for balance… A man with a very distended stomach and thin body, being pushed in a wheelchair, reminding me of the repercussions of alcohol abuse… Caregivers looking as exhausted as patients… A woman speaking in Spanish with frustration in her voice as she half-dragged her daughter by one arm as her daughter cried, then picked the girl up and carried her… A Chatty Kathy bebopping her way along, happily distracted with her cell phone… An woman who seemed to look much older than her age, her beige shirt perfectly matching her skin and hair color, making her look a bit otherworldly… A few groups of doctors discussing their patients as they walked purposely in a “mobile team meeting”… Professionals who appeared very unhappy with their career choices or with life in general, some of whom avoided eye contact at all cost… And a few young guys and gals who didn’t seem to have a care in the world to worry themselves with; I kind of envied them. Perhaps the mood was a bit mellow today due to the rain and chill. I hoped so.
On the way back home I listened to the same song on repeat. There was no time for a nap when I arrived at home. I had not heard from Mike for a few days and I have been quite concerned. It’s not like him not to show up. So I decided to tackle a flight of stairs knowing I’ll be paying for it tomorrow. I knocked, rang the doorbell, knocked some more…no answer. His neighbor came up the steps, a very unhappy fellow, and said, “You’ll be lucky if he answer the door for you…” with a sneer. Not knowing what to say, I said nothing and faced Mike’s door again, glad I had no knee-jerk reaction to the comment. So I carefully made my way back down the stairs and drove home. After parking, I let the driver’s seat recline a bit and I took a cleansing breath as I shut my eyes. Thank you, Lord, for helping me with the escalator, for allowing me to enjoy a good hug and give a good hug too, helping me focus during my appointment with Dr. OE even though my leg and guts were hurting, and for helping me get safely home. Wherever Mike is, please watch out for him.
It was time to go back to work. I flung lunch down the hatch, took my medications, followed my routines including my desensitization exercises, then spent two hours working on medical forms I needed to fill out and making phone calls to doctors, DMV, VR, two pharmacies, more doctors, agencies, and wellness centers. I scribbled down notes on scrap papers which I knew I’d have to sort through again tomorrow, but I was too tired to care much. I had squeezed yet another doctor’s appointment into my week, tomorrow morning, and I had the sense I’d be a bit annoyed with myself in the morning for trying to pack so much into one week. But then, if it doesn’t get done this week, it will be backing up everything else for next week.
4:30pm. Time to work my “real” job – making phone calls for AAA to
beg for money ask expired members (their memberships have expired, not the people themselves, though sometimes they expire too which is sad) if they would like to renew their memberships. It was a busy night and I had 8 renewals by 9pm. So now it’s time to close up shop and drop like a swatted fly into bed, to begin a new day in 8 hours which will be equally taxing. I know God’s power will again sustain me, however, and therefore I have hope and motivation.