It has been told, and I’d like to agree, that I have a gift of writing. Somehow, words I cannot articulate verbally flow like soft tap water dripping, dripping through my fingertips when I write. Today, the words are softer, yet bolder. Sometimes there are no words. Of course, I will try.
I’ve never been to the end of my rope before. I thought I was there, only to realize, last week, I didn’t know that I didn’t know how much rope we actually have – enough for friends, family, and more to lift us up and hold on tight while we struggle through the obstacle course of life. This article is not a cry for help, nor a plea for pity. This is about sharing my rope with someone else who I know needs it tonight.
Last week I was a patient at the Mayo Clinic in Scottsdale, Arizona. After a 12 year battle with a plethora of vague neurological symptoms which included tremor, chronic leg pain, and fatigue, I was at the freakin’ Mayo Clinic. I had never been more terrified. Countless doctors in three different states had already processed me as damaged goods with no avail. No diagnosis. More prescriptions. Baby. More pain. No diagnosis. Psychiatric? Depression. Pain. Another baby. No diagnosis. Twelve long years living inside of a body that others deemed as able.
I was more fearful than expectant at the Mayo Clinic. If the big dogs can’t figure you out, you’re screwed. Then, that leaves the door open to me being crazy. To life being sucky because God is okay with it. So hard for me to handle.
We met with a lovely doctor the first day. Kind. Simple, honest, assertive but soft. In a few short hours he had processed my twelve year history and tests were ordered. I hugged him. He hasn’t been hugged that much. I could tell. Awkward.
It was a relief to walk away from that exam as much as it was a struggle. There were no new ideas and it seemed like we were running the same tests that we had already run before – this time expecting different results. That Monday would include labs and naps. A little bit of swimming.
Tuesday was frustrating. Our insurance information was being flagged in their computer system. It was also as if I had not been there the day before. They were having to check me in brand new at labs, and doctor’s visits. I don’t handle that stuff well. I needed it to be easy. My biggest concern nearing my 2:00 appointment that afternoon was that my spinal tap had not been ordered yet. There was a change in the schedule and there was only one person actively doing the taps on Tuesdays. And she was full.
In walks a girl, yes a 20-something cutie patootie. My doctor? Resident, or “fellow,” actually. She is technically a doctor, but is getting her sub-specialty in neurology. I had tried to find out who she was before I came to the appointment. I like knowing the doctors I will see. I could not find her anywhere on the internet. I still can’t. She doesn’t even exist in the google! Toby said walking into that appointment that maybe this doctor was my angel.
About three minutes into the appointment, she was reviewing the notes taken by my doctor the day before, I started feeling frustrated. She wanted details I couldn’t remember. As she finished reading my chart, I totally broke down. I laid it all out there in an honesty that I haven’t been able to with other doctors. My heart poured out. She listened. “Am I really just a bad mom?” The tone of her voice changed, the determination in her movements. Her eyes were deep and sad. As a doctor she could and would do my spinal tap, once she found an open room. She was off to bring back the supervising movement disorders specialist. At exactly 2:22 a knock on the door. The spinal tap lady was going to get me in, that day, I’d be home by 4.
Triple deuces. I knew. God’s fingerprints. Quincy’s birthday. Our first house address. Why Tripp’s name is Tripp.
The spinal tap wasn’t horrible, but it wasn’t easy. I was her ninth patient of the day, the first time in seven years she had ever performed nine lumbar punctures in one day. At one point in repositioning the needle, I felt painful sensations where you never want them! I felt fine that evening, but the next day would overdo it.
That day we didn’t have any appointments. Me and Toby. My guy. We were two thirty something’s on the loose in Phoenix. Watch out, Home Depot! Seriously, though, we wanted to play a bit. It’s not every day we get a day in a big city together. We found a zoo with a baby monkey. We found the Cardinal’s training camp at University of Phoenix stadium and watched a touchdown pass or two from Carson Palmer to Larry Fitzgerald. The perfect day. I cheered, screaming, even though it was a scrimmage. I loved it.
I didn’t realize the headache I’d been fighting through the day was the spinal headache. Related to not resting enough and allowing the fluid in your brain to re-pressurize. That night I did not feel well. Something festered. Progressively irritated, tired, and nauseas. Fight with Toby. Perfect day ruined.
Tears, screaming, so many tears. Ready to be home. Crying. The realization of how much I did hate myself surfaced in one big breath and I reached for whatever I could to gouge my arm. It wasn’t sharp enough. Fingernails ripped as Toby pinned my hands to my lap. Tears. Nothing left. I demanded home.
I’ve never inflicted self-harm upon myself. I’ve thought about it. I don’t advise it. I don’t want to share it and I am embarrassed that it is included in this story. But, to exclude it would be to take the very breath of my testimony away. I can see now it was desperation. Pure desperation. We cried in the dark on the bathroom floor. Sobs.
Toby and God worked it out that night and somehow Toby got me to promise him that I would do the MRI and I would go to my final evaluation the next day. The fear of rejection and failure weighing me down. What if I’m just stupid and this really is in my head? It was so much pressure. I hated him for making me go.
Somebody at home must have prayed hard. I went to the MRI. I went to the final consult. One more lesion on my brain MRI that they don’t know what to think about. No answers. I knew it. So much better off expecting nothing. The test results were not all back and there would be a phone call sometime next week. Doesn’t look like MS, we’ll rescan in a year… change these meds, call us if you decide you want something for the tremor. We left. Empty handed. I still hugged him. Less awkward than last time, but still awkward.
Toby played cards while I daydreamed. Killing time. We had a few hours until we had to be at the airport. I checked my phone to see if any updates were on the “my lab results” tab of my fancy and highly technologized Mayo Clinic app. In one moment, my world was changed.
An abnormal result. The one we were waiting for. Answers.
One night I confess my desire to die and be done with this suffering and the next day the Lord provides healing. I have hope again. Hope so big. I am redeemed.