today has been a day for thinking... for praying... and a day to count my blessings. I sure do have a lot of them.
As most of you know, I was diagnosed with Multiple Sclerosis in 1999 at the ripe 'ole age of 18. My first round of IV steroids (the usual treatment for an MS exacerbation, or relapse) was the day after I graduated high school; I was diagnosed 8 days before I moved to a new city to attend a huge college with few acquaintances and even fewer friends (and yes, some of those acquaintances became life long friends!). I've had my up's and down's with MS over the past 12 years. In late 2008 (or so) I went on disability. I was having a hard time walking; I continued to relapse, one episode after another. After I continued to progress, the decision was made to switch my treatment from one of the disease modifying drugs (DMD's) [a shot you take anywhere from every day to once a week, depending upon the shot...] to a more aggressive treatment in the form of a monthly infusion called Tysabri.
I knew the risks. Tysabri is a high risk medicine. You can contract a brain disease from this drug, and oftentimes it is fatal... not always, but it has a pretty good track record for fatality. Why on earth would I choose this medicine?! At the time I was co-leading a support group, and my co-leaders were two people who were patient advocates for Tysabri/Biogen Idec. I know all about advocacy... they push a drug, right? Not always with MS... anybody who has been on these meds for long will tell you to find the one that works for you and stick with it. What works for me may not work for you! I liked the idea of the monthly infusion, but I wasn't sure if the risk outweighed the benefit. And then I took one of my co-leaders, Ryan, into consideration.
Ryan struggled greatly with walking as a result of MS. From what I understand, he had lost most of his mobility. He was on Tysabri. He never used a cane; he walked slower, sure... but he was WALKING. That stands out to someone who struggles to walk... and there he was, up and going, little to no assistance. I remember being amazed at this. I continuously looked at my walking stick I had to use to get around, knowing that some day I would have to trade that in for a cane... and at the rate things were going, arm crutches were next. I was getting weaker, not stronger; I was progressing, not remaining stable.
I switched to Tysabri in November 2009.
People look at me today and tell me they would have no clue that I have multiple sclerosis. I just smile. If you had seen me a year and a half ago, you would have realized there was something wrong, simply by how I walked. Within six months of starting the Tysabri... I no longer needed the walking stick. Today, I walk unaided (most days... some days gravity sneaks in and reminds me I am not invincible, but we tend to have an agreement for me to be mobile while in public, and when at home I can fall more often... somehow, this thought entertains me and makes me feeeeeel better about the fact I'm a total klutz!). I am doing SO well with this treatment plan switch, I have been thankful for it. The risk has completely outweighed the benefit.
I had my monthly infusion Monday of this week. The infusion itself went fine, once they got the IV started (I'm a hard stick for an IV to start... ask the nurses at the hospital, I think they think I do this on purpose, to see how many of them I can go through before someone actually gets the thing in right...!). After I left my infusion I had a strange reaction to the medicine that lasted a few hours (easy explanation was that I had a case of extreme confusion for a while). I called my doctor to ask about this recent change (which happened literally within 20 minutes of the infusion). She said it was something she had never heard of before, but as a precaution--let's run an MRI to make sure there isn't something going on.
I had the MRI (Thursday) in the morning. I still do not have the results.
Now, this makes me think a lot. It is easy to start playing the "what if" game.. "what if" I have this brain disease? It is called PML... that is short for progressive multifocal leukoencephalopathy. It's a lot like MS in that it destroys the meylin around your nerves and is degenerative. The difference is that this disease tends to be fatal. That certainly can put a cramp in your lifestyle!
At one point I was upset--all I could think was, I don't want to die yet... there's so much I've not had the chance to experience... things I want to do, things I want to be... I'm only 30 for goodness sake, there's so much life left to live!
Then I thought of the worse case scenario. I die. Where do I go when I die? I go Home. I get to see my Lord, face to face... wait, that's my worst case scenario? I get to see Jesus? Now, how is this bad?
It didn't take me long to see how much I was focusing on me me me... and the here and now. I say I make every effort to hold onto things loosely in this life... this is not my life to live, it is His. I realized in a hurry that my grip on "my life" was getting too tight, because the thought of leaving all this saddened me. I wasn't initially excited about the thought of standing before my God... I was thinking of everyone I would leave behind. What I found myself doing was grabbing fists full of a substance like sand, thinking somehow I can hold onto it and keep life ordered the way I think it should go... when in reality, the sand is slipping out between my fingers faster than I realize. It's futile. And what I'm left with in the palms of my hand becomes so mangled by the pressure with which I'm clenching my fists... there's nothing there left to hold onto. I'm left with a fist full of air, hands clenched, full of... me. Sinful me.
I know and believe God will do what He wants with those who are His... I am His... therefore I rest in His arms. Have I been trusting in God, in this circumstance? Do I believe God has my good in mind, for His glory? Do I believe God is aware? Do I believe God has a plan? Do I believe God is in charge? This little dunk in the ice bath has been another test of my theology... what do I truly believe, and when all else is stripped away, to whom or what do I cling? Do I try to cling to my friends to pull me through? Do I expect family to be there and keep me together? My church? No... because in the end, none of these people stand before God with me. Yes, all of these support me. I am so incredibly blessed by the people who surround me and pray for me, pray with me. I couldn't ask for more than what the Lord has blessed me with, in these people. My family is unwavering, when it comes to something like this... I know IF (and that is a mighty big if!) I am diagnosed with something such as PML, they will stand beside me and do whatever they can to help. I'm thankful for my family, biological and spiritual. I'm above blessed.
This isn't about me being fatalistic, thinking I have some big bad brain disease and I'm dying. Odds are, I'm perfectly fine. I do not know what tomorrow holds--and I am simply a piece of clay on the Potter's wheel, being made more and more into His image. Sometimes the Potter will smash the clay on the wheel to get out a defect, and start the molding process again. It can be painful, but the end product... the finished work in the hands of the Potter... is breath taking. What right DOES the clay have to tell the potter to do with it?
What this has taught me--reminded me--again and again is how short this life is... how much time I waste on pursuing things that don't matter in the end... relationships I neglect to build with friends at church because I'm "too busy" or "too broke" or "too..." whatever... to get involved with others... life IS short. This is the only one I've got to live, for His glory... until the next one to come, of course... but when people look at me and learn that I have health problems, what do they see? Do they see an individual full of fear and anxiety, crying about how she doesn't want to die? Or do they see someone clinging to Jesus with every ounce of her being, trusting Him for each breath she takes? PML or no... I want to be the later on this list. I want to be one who is known for holding on to Christ above all else, desiring to worship Him and give Him glory, regardless of the personal 'sacrifices' that may try to distract. I want to be so singularly minded, my first response and last response to any situation is "how will this honor and glorify my Lord?"
PML isn't an end... it's a beginning. Every day is a beginning--a new day to order my life around the Word of God; a new day to seek Him, enjoy Him, glorify Him, worship Him. I'm given this opportunity every single moment that I inhale air. I don't want to take the moments I take a breath for granted... I want all of my life to be lived for His glory alone. Because, in the end... it's those moments that I have to give back to my Lord. How have I spent them? Am I making the dash between the dates count for His glory, or my own?
This is what the thought of PML teaches me. Make the dash count... not for my glory, but His alone. He knows what He is doing... in this truth, I rest.
Isa 26:3 NASB - "The steadfast of mind You will keep in perfect peace, Because he trusts in You."
Isa 26:4 NASB - "Trust in the LORD forever, For in GOD the LORD, we have an everlasting Rock."
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