It's Alright to be Afraid
2 Corinthians 4:16-18 NRSV
So we do not lose heart. Even though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight momentary affliction is preparing us for an eternal weight of glory beyond all measure, because we look not at what can be seen but at what cannot be seen; for what can be seen is temporary, but what cannot be seen is eternal.
I have wanted to share here for awhile. I had planned to share about my performance at LaughFest, a comedy festival that is a fundraiser for Gilda’s Club here in my town, and the nice articles that had been written about my participation as an Ovarian Cancer survivor who does “Stand-up” from her wheelchair because she has MS. I told myself I would do it as soon as I recovered from the performance. I had the outline and the links to the pieces and everything.
Of course, before I fully “recovered” the MS hit me with a new affront. I didn’t think that much about it, it was the same loss that had presented when I was 31, leading to the first testing to see if I had MS. The new symptom was more intense, as happens in the Secondary Progressive stage of MS. I didn’t even report it to my Neurologist (Neuro) right away – it started on a Thursday and I reported it at about 1:00 Monday, thinking that they’d shrug and put it in my file. That’s not what happened, though. Sure enough my PA, Danita, pulled out all the stops.
When she called me back less than three hours after I had left the message, she told me that I was expected at a local hospital that night, to begin a procedure designed to stop this latest attack. She gave me my room number, even. Well, that was unexpected.
Danita explained that this newer procedure, called Plasmapheresis, was being used on MS patients for whom steroids had not worked. I smiled at myself remembering how, while I hadn’t liked the short-term effects the steroids laid on me, the medical pro’s didn’t like that they hadn’t worked. I had to admit, once again, that their viewpoint was probably more to the point.
She gave me an explanation of what the treatment entailed – it sounded like dialysis to me – and said she thought my visit would be one to three days. I’m sure I said something akin to “OK,” reeling from this unexpected turn of events. I do so like being reminded that this disease controls how I spend my days! I informed my son Scott (my primary caregiver), showered, packed a bag and ate dinner, and I was in the hospital room by 8:00 that night. Yes, they were expecting me.
The next day, Tuesday, was a whirlwind of activity, including a little surgery to give me a “port” in my carotid artery that went into one of the chambers of my heart, the first round of Plasmapheresis and the first 90 minutes of a three hour MRI. I never do three big things in one day anymore! I was exhausted.
Wednesday is when I learned for sure that my visit would indeed be ten days, as Scott had told me after his research on the internet. The hospital doctor explained that the port in my neck was susceptible to infection, and considering it went into my heart, they preferred I be in a very controlled environment. I could appreciate that, so I took a look around. My room was nice, my view was pretty, I felt pretty normal, and food was served room-service style. I decided to look upon my stay as a sort of vacation. I enjoyed interacting with hospital staff, sharing my faith and encouraging them in their own. And I was humbled by the visits from friends and church representatives. I am blessed to be so loved.
The first few procedures provided some improvement to my new set of symptoms, but overall I didn’t see a vast difference. I did learn a lot about Plasmapheresis, and enjoyed how just three days after I learned a new word, I could explain what it did and why it is beneficial to MS patients. I will not share all those details here out of respect to readers who might not be the science geek I am. Suffice it to say it’s a blood-cleansing process that is done five times every other day, hence the ten day stay.
I was happy to get home at the end of it all. I had missed my cat, and after ten days of hospital food, I was glad to get back to Scott’s cooking – he prepared food at the Grand Hotel one summer! Very rapidly however, my symptoms got much worse. I can really no longer walk, even using my walker, and standing for more than a few seconds is all I can manage. Additionally, my eyesight is diminished, and I can now identify weakness in my arms, which I’ve never noticed before. This all presented within a week of my being home. For the first time since I heard I might have MS, I was scared. I never knew the disease could move so quickly. It can and it does.
At my follow-up appointment with Danita, I learned the Plasmapheresis was the last best hope to change the course of my disease. If it had worked I would just periodically go back in for more treatment. It didn’t. She explained that while there are chemo drugs that are used by some, the risks far outweigh the potential benefit for me. I am glad I don’t have to decide to take them, since the pro’s don’t like them.
I have Secondary Progressive Multiple Sclerosis. That means that wherever I have had a temporary loss in the past, I can expect to have a permanent loss in the future, including my intellect. Once again I am the cannonball that has been shot into the air, tumbling over and over with no control over where it lands or what shape it will be in when it does. I am grieving, again.
Then, yesterday and today, from two unrelated sources, the verses at the top of this article were presented to me. And I remember that this is all temporary.
"For this slight momentary affliction is preparing us for an eternal weight of glory
beyond all measure." I will mourn and gnash my teeth for a time; then I will carry on, because my eternal future is bright. Blessings to you.
Were you misdiagnosed with something else before receiving a MS diagnosis?