Wednesday, July 12, 2017

Personal goals

I got to meet with my Biogen counselor today for the first time in person. He was in town to meet with some doctors at the hospital, and took some time to meet me at my favorite coffee shop.

While I sipped on my chai latte, he asked if I would mind sharing some of my history with him. Most of the patients he works with are infants, so he can't talk with them directly, and there isn't much to their life story yet. It made me realize again that I am in a small percentage of SMA Type 2 adult patients who are currently pursuing this treatment. So I happily shared my story, including a lot of what I wrote in my previous blog post.

Then he asked me about my treatment goals: "What results do you hope to see through this drug?" That's what I call the million-dollar question, and I told him about my struggles with having so little information.

He explained to me that the reason there aren't solid answers about results is that every SMA patient's weakness progresses differently. Even looking at the difference between my brother Kevan and I, who are close in age and are from the same immediate family and have the same diagnosis - we have had very different manifestations of our weaknesses, and have our own unique abilities as well as struggles. Thus, we would have different responses, and different response rates with the drug.

He said that a good first-step goal is to stop the progression of the disease. This is the top priority! If the progression stops, I can stabilize and maintain my current abilities. From there, I could have new goals for rebuilding and restoring lost strength. I would create a timeline of my weakness, and work out goals in reverse. For example, what could I go 6 months ago that I can't do now? So for me, my hands and throat are the areas I've experienced the most recent weakness in, so they would be the muscles I would work to restore first.

That conversation really helped me! At least now I have some initial goals. Now, if I could just get started with the treatments...

Sunday, July 9, 2017

Introspection in the pause

It's been over two weeks, with no decisions made and no plans confirmed. The "radio silence" has given me more than enough time for introspection. Last night, I talked to Kevan on the phone about my anxiety, and he gently said, "You know you don't have to go through with this." He's right... So why do I want to do this? Is it worth all the waiting, the pain, the risk, the complications? If there isn't dramatic change, if I don't see remarkable differences in my abilities and strength, why would I put myself through this?

If I'm not expecting a miracle, what am I expecting? And why am I not expecting a miracle? Something I've prayed for 33 years is now here - why shouldn't I expect a miracle?

I don't need a miracle... not really. My life and my faith have grown strong on the foundation of God's power being made perfect in my weakness. I've had years and years to learn peace and joy in my diagnosis, and many of my role models are incredible people who live with disabilities. I like to think I've become strong by "growing weaker with grace." I can honestly say that I am OK with who I am, who God's made me.

And yes, God's made me with weak muscles and a crooked back. But he's also made me with an adventurous spirit that doesn't want to resign itself to the fate of a medical diagnosis as long as there is hope. In the quiet moments when I lay still in my bed, I often imagine and dream what it would be like to walk, run, dance, drive, stretch my body, wash my hair, cook a meal, roll myself over in bed... These are just some of the things I truly long to do... things I believed I would never do in this life.

But what if... I know there is no promise or guarantee, and no doctors have even suggested this to me, but what if I do have the chance to do even some of these things in this life? How would it change me, my relationships, my faith, my testimony? How would it bring glory to God? Lord, you know I want it to. There is so little that the doctors know at this point, but the unknown possibilities are exciting to me, because it means there is no limit to what God could do.

I'm going to reset and try this again. This time, I will face these risks and fears for the sake of a new, exciting, grand adventure. My faith, trust, and hope is not in medicine, but in God alone. I know he can find a way to make this treatment possible, and I know he can work it into my body in miraculous ways, and I know he will use this entire experience to deepen my faith and bring glory to him... and I trust that people I know and love will turn their hearts to Jesus and praise him because of it.