I think I may have underestimated my opponent. Actually, graft-versus-host disease (GVHD) is more of a welcome adversary than a foe, but he sure isn’t letting me off easy.
The last three weeks have been a constant battle with eye GHVD. It started with blurry vision and then advanced to extremely sensitive and dry eyes, to the point that driving and anything beyond basic tasks had become nearly impossible. It’s getting slowly better, but I still cannot drive and have trouble holding my eyes open at times. I’ve been to the ophthalmologist twice; he has both times removed fibrous “pseudomembranes” from my eyes that have formed as an immune response. It’s not too painful, but the complete eye exam was pure torment. I am scheduled to see a GVHD specialist this week.
This is a welcome problem. GVHD results from my new immune system attacking my body. It is, essentially, an attack from within. This is an indication that the stem-cell transplant is working and hopefully would kill any new leukemia cells that might start growing again. My GVHD is “acute” and will hopefully not become chronic. After about a year the body starts developing T-lymphocytes that tolerate one’s body and don’t trigger an immune response. Plus, I’ve got a relatively moderate case. My skin rash is under control and so far there is no other manifestation of GVHD in my body. It can affect vital organs and even be life threatening. This is a continued point of prayer, please.
It’s probably impossible not to take our senses for granted. Who remembers to thank the good Lord each day that they can see or hear or feel? I didn’t for sure. But when a sense is lost or degraded, the disruption can be significant. Take reading. I love to read and I have plenty of time to do so as I wait for appointments or sit through treatment. But, for much of the last three weeks, I haven’t been able to. I can now, most of the time, but only when I increase the font size on my Kindle to “almost blind” and decease the brightness so I can tolerate the glow.
I’ve learned a few other hacks along the way. I never would have thought I’d need the Accessibility features on my iPhone, but the “Invert Colors” function is a life saver. I’m leaving a small sum in my will to the Apple programmer who incorporated the Accessibility shortcut in the latest iOS 7.1 update. I learned not to buy Target brand eye drops; stick with the name brand. Also, podcasts and Pandora are a good substitute for reading in a pinch. Lastly, it’s not fun for me just to listen to March Madness. Seeing the games really is a must.
I pray each morning to be a better husband and father, and part of that is being a better listener. I want to really hear and understand what my wife and daughters are saying—or not saying—and not just listen to the words. I have learned that not being able to see does not, in fact, automatically make you a better listener. But I have wondered if this is the process God is taking me through to hear His voice and my girls’ voices more clearly. I’m not able to focus my attention as much on a book, a phone or computer screen, or some other distraction.Sometimes I’m left with only my thoughts and the opportunity to clear my head and be introspective. One thing is for sure: I am still a work in progress.
Understand this, my dear brothers and sisters: You must all be quick to listen, slow to speak, and slow to get angry. (James 1:19 NLT)
One of the most frustrating challenges has been interacting with my daughters. It’s hard to read with Emmy and chase after Abrie when I can’t see where she’s going or what’s in her little hand. But, still the Father insists on blessing me. In spite of long days at the hospital and not seeing what’s going on around me, I have witnessed Abrie take her first tiny baby steps, just one at a time so far, as she learns to walk. And the other night, as I was putting Emmy to bed, I asked her to hold my hand while we prayed. Instead she hugged and held on to me until I was finished, and then she prayed for me to get better. Just like that God reminded me, again, why these truly are the good old days.