Thursday, May 8, 2014

Mom on Wheels and Papa Bear - The love story endures tragedy

Welcome to the third installment of my love story with Papa Bear. You can read part one (the setup) here and part two (our dating, engagement, and marriage) here. Tonight is the climax of our story, as our vows are tested sooner than either of us expected.

It was March 24, 2005. Barely 5 months since Papa Bear and I were married. On this particular night he was only working an eight hour shift in the ER, so he had some time at home to himself as I headed in to start my 12hr shift on another unit of the same hospital. I had served and picked up dinner trays, and transferred one of our frequent patients to ICU. It was right at 8pm, I was checking the blood pressure of a 15mo little boy with sickle cell disease, when suddenly both of my legs from the knees down felt numb and tingly; just like when you sit on your foot and it "falls asleep." I finished my work with that patient, and went out to ponder the situation at the nurse's station.

You see, nearly 4 years prior on May 1, 2001, I had experienced an attack of a rare autoimmune disorder, Transverse Myelitis. The inflammation in my spinal cord had caused me to lose motor function in about six hours. Thankfully, I started to get return of function after about 2.5 weeks, and by the end of 2001 was almost completely recovered. But that attack had started with back pain and chest tightness, not leg numbness. And while not unheard of a second attack was extremely rare. I told my coworkers what was going on, trying to convince them and myself that it couldn't be TM again, but deep down my heart was gripped by fear.

After an hour of no improvement, I called my neurologist's clinic; but it was still so early the on call doc encouraged me to give it more time, but not hesitate to call back. 30 minutes later I was on the phone with him again; not only was it still not better, it was getting worse! I expressed to him how quickly my symptoms had come on the first time, and he knew even already being in hospital I didn't have time to sit in the ER. He said he would be on his way, and would examine me in an empty room on my unit. While he was on his way, I called Papa Bear and had him come up to be with me, as well as my parents. Meanwhile I was continuing to work as much as I could. Partly because I didn't want to leave my coworkers with a lot of unfinished tasks, but partly (though I couldn't confess my feelings to them) because I had a feeling paralysis was imminenet, and I didn't know how long it would be until I walked again.

By 11pm the on-call doctor had me admitted as a direct admit, and began writing orders. Around 1am, I asked my husband and (male) nurse to help me on to a bedside commode to use the bathroom, and these two strong guys nearly dropped me. During those two hours in bed, the function had left my lower body, never to return. In time it was confirmed that I did have a second attack of Transverse Myelitis, but over two years of physical and aquatic therapy yielded only minimal improvements.

Those two years were two of the hardest of my life. I had to learn how to live as independently as possible while in a wheelchair. Both Papa Bear and I had to adjust to him now being both my husband and caregiver. Our income was cut in half, but our expenses much larger due to medical bills and ongoing treatment costs. The reality of our situation caused Papa Bear to battle depression, and a bad medication adjustment found him briefly receiving inpatient psychiatric care. But as hard as they were in the moment, I can see them as such a gift now. Having conquered so many major challenges so early in our marriage, we are now even more confident that we can weather any challenges we face. We'll have our tenth anniversary this upcoming fall, and I love him more each day. It's not always easy, but every day I choose to stay in love with him and work to get past any hurdles attempting to block the path of our marriage.

As well, while I was initially in the hospital I received both the anointing of the sick and our priest prayed for the intercession of now-St. John Paul II, as I was still in hospital when he died. Some people say they didn't "work" because I am still disabled, but they provided me with tremendous spiritual healing. I can now accept and say with certainty that whatever divine purpose my life has, it is evidently something I can't accomplish as an able-bodied woman. I choose to embrace my disability rather than hide from it, so that I am able to carry out God's will for my life.


  1. You are a very brave woman.

    I wish all the very best to you and your family!

    1. Thanks so much! It's funny though, people tell me from time to time that I'm inspiring to them, but to me I think most people would do the same if they were in our situation. There are some things that make our family look and work a bit differently, but ultimately we're just an ordinary married couple, devoted to loving each other and caring for our kids. It's not always pretty and it's not always ideal, just like anyone else, but as long as we're doing our best in each moment, it will always be good in the end.