(Fair warning: This blog post could easily be titled, “The One Where Amy Abuses Parentheses With Reckless Abandon.”)
I have a habit of always deciding how I am doing currently based on how I was doing when I first became ill. A good many of you who are reading this were in my life 17 years ago when my health took a drastic turn and I became a walking quadriplegic in a span of two weeks. I lost almost a full year of my life when I was 17, spending my time in both physical and occupational rehabilitation. I had to learn how to walk again, how to hold a pencil, how to feed myself and just about anything else you could imagine along the way.
I remember hours spent one afternoon with a stack of fifty sheets of paper and a green marker held loosely between both hands. My fingers dangled uselessly and kept getting tangled together, making me toss the marker often and have to buzz a nurse to retrieve it (I was a youngster in a rehab hospital full of senior citizens. I was every other patient’s surrogate grandkid and the nurses’ pet. If I had to be in rough shape, I was in the best place to get good treatment.) I wanted so badly to will my hands to write my Dad a simple two word note, “Perk Up.” It was an inside joke between us and I meant it to say, “I love you and I know you would fix this in a second if you could.” I sat in my wheelchair in that hospital room and went through the entire stack of nurse procured printer paper before finally managing the words. Pre-schoolers would tease me in the schoolyard if they saw those two short words, written horizontally and filling the page with two lines. It was the neatest my handwriting had been in weeks.
While I worked on that note, the mailman came to my room to bring me my daily stack of 20 plus cards (you all have had my back from day one.) He saw me sitting there with my hands covered in green marker ink and the floor littered with my failed attempts. His kind smile made me think that he was likely some kid’s favorite Grandpa. He invited himself to have a seat across from me. He commented that he had noticed I had a lot of daily mail and then he asked me about the project I was so feverishly working on. Ever proud of a quality comedic, yet tender, jab, I told him all about the story behind, “Perk up.” He laughed (I’d tell you too, but you had to be there) and then sat there and opened each one of those envelopes for me, pulling each card out slightly so I could manage to pull it out myself (which I did with my teeth.) This became a daily visit for me while I was in-patient and he became another one of the countless, and often nameless, cheerleaders I would meet along the way.
Since then, I have felt ill to be sure, but I have never been as disabled as that. How can I complain when I know how much worse it could be? Even as my body has been on this slow seven year decline, I have reasoned that I am still walking (mostly) and at least I am not confined to a wheelchair for my day to day.
I think that, because I can walk generally unassisted (I sometimes use a cane when very fatigued and also use a scooter or wheelchair for most extended outings) and because I can reasonably use my hands (though, my hand sensitivity is much as though I were wearing leather work gloves), I would often rather think that my MS is a good deal better than it could be than to think that it is all that bad today. If there is a flaw to this thinking, it is that I often don’t take the long term implications seriously and likely wouldn’t have if it wasn’t for the recent and persistent prodding I have felt from the Holy Spirit.
On this past Monday morning Eric and I went to the imaging center and I had a 2 hour MRI that looked at my brain and complete spinal cord. My kind neurologist asked me to come to his office with the finished scans that very day and he let me sit with him while he gave it a quick going over. He will spend further time looking at it in greater detail on his own and his final thoughts should be available in a few weeks.
Upon looking at the first few views of my brain, he marveled at how low my lesion load was. Indeed, he initiated his perusal of my scans with such marvel at the “mild” lesion load that I have to admit my gut reaction was to worry that he would continue to say, “In fact, this brain is pristine and you have just been a big whiny baby all these years about a little bit of nothing.”
My fears were not realized and to my “relief” he found some evidence of disease. (Am I the only ambulatory MS patient who suffers this regular episode of absurd panic?) The center of my brain showed a moderate amount of Dawson’s fingers (a kind of MS lesion along the ventricle-based brain veins that is so typical of MS that it has a name.) I have some degree of scarring on my brain, though not nearly as significant as I would have thought, or have seen on other patients similarly disabled as I am. He continued to scroll around and he spent a few minutes examining my right side parietal lobe. I have a nickel sized lesion worth being concerned about there, he tells me. (A lesion differs from a scar in that a lesion is nerves that are actively being damaged, while a scar is the aftermath.) He said that we needed to keep a close watch on it and then said to me, “You are in a good place to intervene and prevent further disability.”
He continued to my spine where he commented, “Here’s where we see more activity.” My spine had 3-4 lesions on it during his cursory look, as well as measurable scarring. This explains why a number of my symptoms are in the family of spinal cord injury – my spinal cord is injured and it happened all by its own self. It was at this point that he stressed two more times that I needed to intervene to prevent further disability.
I have to leave this doctor’s office scene for a moment to tell you why my brain’s appearance was so very incredible…
When I was first diagnosed with MS, I had a much larger lesion load on my brain than I do now. On MRI, lesions look like cotton balls and my scan in Feb. 1995 was dotted like the cotton fields in Lubbock, TX. It was, in fact, very easy for the doctor to determine a diagnosis at that time because it was just that clear. A lesion load that large would indicate that the scar load today would likely be significant, and yet my brain was incredibly low on scars.
Two years ago a dear sister in Christ prayed over me that I would be healed. Not even knowing that MS is a disease of the brain, she said while she prayed, “I am seeing a brain with wounds all over it and I see a skillful Artist’s hand with an eraser and He is erasing the wounds.”
Shortly after that prayer time with her and others, I began to feel a good deal better than I had since my initial recovery. I started to go on long walks, going up to three whole miles in one go at it. While I still was very aware that I had MS, I felt better than I ever had with it. This lasted for about three months and then seemed to stop suddenly. Almost over night I was again unable to walk long distances, my hands fumbled, and my pain level, which had gone from a 6 to a 3 on a scale of 1-10, was ramped up to a 7-8.
I believed that God intends to heal me of MS from the very day that I first heard the word mentioned in connection to me and I have not shied away from telling people that over the years. I do not say this because I believe that God intends to heal everyone on this side of eternity, or because I think I am extra special and deserving of something that not everyone gets. I simply feel it and believe just as certainly as you believe that Tuesday comes after Monday. This level of faith is one of many comforts given to me by the Holy Spirit though this journey. Having my body return to its former state of “works okay, but could be substantially better” did not change that understanding in my mind. It simply confirmed to me that He is the Author of my healing and the Permiter of my sickness and that healing is going to come along at His decided upon time and manner. Those three months were tucked away in my heart and felt like a heralding of things to come.
Now, let’s go back to the doctor’s office so we can wrap this up…
My neurologist is aware of my desire to go to Israel to receive chemotherapy and he only seemed concerned with whether I would be able to gather the funds. He finished up our visit with one last admonition that I needed to intervene immediately with “the therapy of my choice.” Based on tone and response, I can only speculate that he understands this to be a viable option, though I would not presume to speak for a man in his position on this public forum. He is a well regarded MS specialist and it is no secret to any of his patients what his thoughts are about what course they should take. If he didn’t think this was viable, I am convinced he would have not only said so, but he would have thrown in a jab at the “quacks who come up with this stuff.” (Important side note: It is extremely rare to find a neurologist willing to be vocally supportive of HSCT for auto-immune dysfunction. Few will argue with the results of FDA approved research into this – all the same, they remain mostly silent.)
So, I left his office with a mixed bag of news. It would appear that the disease is modestly active in my brain with only one active spot that immediately stood out. This is not great news, but it could be drastically worse. It also seems that God has protected my brain from the volume of damaging scars that so many experience. This is gloriously great news. My spinal cord is scarred and experiences the disease more actively than my brain. I don’t suppose I have to tell you what kind of news that is.
Here is how I understood that visit: I am at a fork in the road with MS and I am lined up to either continue on with further disability or go the other way and show MS the door once and for all.
The hospital in Israel has accepted me for treatment. In fact, they said I could come as early as January 16. That is nowhere near my timeline, and I told them as much. Though I don’t intend to leave next week, I am in a hurry to stop this disease while I am at this level. Before I saw my MRI results, I believed that God was lining me up for a whole new season of renewed health. The results are not a determiner of that outcome, but I feel they give evidence to His intervention.
I understand that man makes his plans while God makes His. With that in mind, here is my personal timeline:
- The hospital total cost is $94,000. We have to wire this to them before they will schedule my six week session. We would like to be able to send this to them by May 31.
- Beyond paying for the hospital, we will need to raise funds for travel and accommodations. We would like to plan to arrive in Tel Aviv on July 15 with intentions to begin the process on July 17. Our estimated total cost for that is $25,000. (Some have suggested that people can donate frequent flyer miles towards this goal. We would be happy to accept such a donation.)
- When we return from Israel, I will need to be closely monitored by a chemotherapy trained physician to see how my immune system heals. I will also need intense physical therapy and further MRIs/neuro check-ups to determine my results. We estimate this to cost $8,500-$12,000.
Because of your very generous donations up to now, I have been able to fund my baseline MRI and my visits with the neurologist. Because of God’s great kindness, I was able to see a neurologist who paid immediate and thourough attention to my case.
Information on how to donate is in the upper right hand corner of this blog. I know that there are a few groups of people working on fundraising events. If you have an interest in such a thing, contact me or any member of my family.
Thank you for following along, for your prayers, and for your genuine enthusiasm for this endeavor. I said from the beginning that this is going to be fun to watch and I believe that just as much today as I did then. The task before me is no small thing and I don’t want to appear glib about the intense seriousness of the medical intervention I have chosen. At the same time, I do not want to discredit God’s sovereign movement in all of this. It has been a wonder to behold.