Walking With Grace

Just in case any of you might have been wondering what I look like in occupational therapy, this photo is a sneak peak. Who needs dignity when you could have this snazzy vest??

But on a more serious note, as we approach the last week of  April, it truly feels like we’ve been “showered” with reasons to give thanks! Here are some of my most favorite ones:

1. Goodbye, cane…hello, hands free! Yup, I am now able to get around the apartment solo. This has been a long time coming, and we are so thrilled!
2.  The left knee is finally straight! This also felt like it was a super long time coming…quite possibly because it involved sleeping in a large and somewhat odd-looking leg brace for a few weeks. I said “odd” because we couldn’t decide if it looked Medieval or more space age-ish. But anyway, having a straight left leg is a beautiful answer to so many prayers…especially since at my February and March ortho visits they weren’t sure if it was even possible.
3. Ivan is done with his coursework and will graduate in about two weeks! This accident has changed our lives in more ways than we can number, and I’m so grateful and proud he was able to push through and finish well in spite of having so many new “irons in the fire.”

Looking forward to May, here are some needs we are still waiting and praying for:

1. Return of sensation in my left hand –  it’s stayed consistently  numb since I woke up after the accident, and my neurologist confirmed that this is a result of the strokes, not trauma. Typically most stroke healing occurs during the first three months, so the fact that it didn’t heal during that time means we are now beginning to problem-solve in case that impairment is permanent. The good news is my therapists have taught me that it is possible to control a body part that you can’t feel (this really amazed me!), so I am slowly re-leaning some motor skills in spite of the “dead” feeling. However, unless the sensation returns, my ability to do any activity that involves heat, lifting, sharp objects, or fine motor skills will be significantly impacted for safety reasons. I’m also still not able to play violin at this point since it’s a very tactile instrument and is left-hand dominant. On the positive side though, I have had some successful experimentation with piano since it’s more easy to play by sight and the basic hand movements are simpler.
2. Continued mental healing. As my body grows stronger, we are increasingly aware of the healing in my brain that is yet to take place. Traumatic brain injuries take 1-2 years to heal, and the time frame for brain healing after stroke is more ambiguous. My therapists are doing their very best to help me face this unseen injury (including giving me homework such as “go into a coffee shop for 5 minutes”). We are slowly seeing improvement here, but my ability to talk to visitors, process information, make decisions, or be in any sort of a crowded or public environment without having a mental episode is pretty limited. I think this is most poignant because I miss being in church every Sunday…but with God’s help and continued healing I hope that worshiping in church will become a reality again.

Thank you all for walking with us every step of the way! I cannot get over praising God for all the progress this month has brought. He truly is powerful! And looking forward to our continued requests, I am confident that His hand will guide us toward His perfect new “normal” for our lives. Whatever that turns out to be, we know without a doubt that He is still good!

Grace: This is what Easter means to me. In a way it’s always meant that, since I was big enough to think about it for more than a minute. But now I’ve lived it in a new way, and I stare in awe at that verse. I’ve realized first hand how fragilely my body and spirit are held together, and  how effortless it would be to separate them forever. Ivan started telling me these words, probably before I was aware enough to understand, and he’s reminded me faithfully every step of the way. When I was completely “gone” in a coma..the Spirit of God was still with me, inside of me. When I didn’t know what was real and what was hallucination, there wasn’t a second that God wasn’t there. When my mind was too confused to pray or read or understand the Bible…God was still there inside of me. Even now, at my worst, my most frightened or anxious, my most confused, I am still indwelt by God’s Spirit.  That’s where I step back and marvel at God’s love: How could it be worth the separation, the agony and death of your Son – to do what?  To fill up broken, damaged, lacking creatures, creatures that could never give You the worship, or even the priority You deserve. No matter what has or hasn’t happened to us, we all fall among those creatures to some extent. But it was worth it to God. Somehow, in some way that my selfish and limited mind could never grasp – it was worth sacrificing  His glory through Jesus to gain back His broken children.

Ivan: “For me, living is Christ and dying is gain.” (Philippians 1:21). What a strange verse!  Dying is gain? Living is Christ? What does it all mean? It means that Christ is life: He is its source, He is its purpose and end, and He is life in the truest, richest sense of the word. This is what Easter is about. The triumph of life over death, of light over darkness, of divine, eternal goodness over the evil of sin and death. Christ is risen! He is risen indeed. “Life was in Him, and that life was the light of men. That light shines in the darkness, yet the darkness did not overcome it.” (John 1:4-5). Because Jesus lives, we can truly live. If God had chosen to bring Grace home last December, she would have gained a face to face relationship with God for all of eternity. But while she, and I, and all of us believers still remain here on earth…we have work to do. Let us advance His Kingdom through our everyday routines, through our jobs, conversations, activities, relationships…may we reflect the life and light of our Risen Lord in all aspects of our lives, for His glory. From the Utomos, Happy Easter!

This week was special because on Tuesday I graduated to a new therapy class! Yay! God is so good 🙂 I was somewhat reticent to share my original out-patient therapy level because it sounded a little depressing…but having gone through it I can now attest that there was nothing depressing in the actual doing of it.

For the past 2.5 months, I’ve been in an amputee therapy class. Yes, a therapy class for people who have lost at least one leg. Why? Because I wasn’t “advanced” enough for stroke (aka “neuro”) therapy. When I was told about my placement back in January, the then-23-year-old side of me had a mini-rebellion. What did they mean “you’re not advanced enough for regular neuro therapy”?? Wasn’t the average stroke patient old anyway?? I mean, how could my 23-year-old body be so behind elderly people?? Wow.

At first, I protested that I wasn’t going to the amputee class, but Mom and Ivan insisted I give it a try. Looking back, I think that’s an example of why God places us in families: to keep you from making silly decisions when your pride starts getting out of hand. So, at their urging I did go to the class (although there may or may not have been some protesting along the way)…and after a couple of visits I discovered I wanted to be there. First of all, everyone was learning to stand and walk, so it did actually make sense why I was there. Secondly, learning how to walk again is way harder if you’re missing a leg, so it gave me some perspective about how blessed I am to still have all my limbs. And thirdly, all the therapists and people there were super nice, so it really started to feel like a mini- family.

Fast-forwarding to this week: when I officially got promoted to neuro therapy, I was actually a little…sad! I’ve grown to love the amputee group and wish I could spend my entire therapy journey with the people I met there. But on the positive side, I’m super excited for the next 3 months of neuro therapy, and all the chances it will hopefully bring to get closer to a “normal” life again. Onward and upward!

We’ve reached four months since the date of the accident…thank You Lord for bringing us this far! Life has been very busy and hectic lately, but it’s good to pause, look back, and reflect on how good, gracious, and merciful God has been to us throughout this life-changing time.

Many people ask me how Grace is doing…thank you all for asking! 🙂 Physically, Grace is progressing well. It seems like the wheelchair is [almost] a distant memory now, since Grace has even left her walker now and is able to walk with the assistance of her cane. She is still a long way from being able to walk “normally,” since her strength and balance definitely still have room to improve, but we are so grateful for the degree of mobility that she has already been able to attain.

Unfortunately, the state of Grace’s brain still prevents her from being able to be in public places, like church, or grocery stores, or restaurants, because of the overstimulation that occurs in these situations. Too much information, such as interacting with multiple people at once, facing open-ended decisions, or even just too much background/room noise, can trigger mild to severe panic attacks, in which Grace’s ability to speak or even think can temporarily shut down. Doctors say that recovery from TBI can take months, or years…but we’ll keep trusting God to lead us one step at a time!

Thank you to everyone who faithfully prays for us, encourages us, supports us! We love and appreciate you all more than we can say. Grace and I also pray that as we walk through this time of our lives, that God will use our story to encourage others who are going through hard times as well…God’s love and grace and peace and joy will forever be more than enough to redeem and heal any and all of the hurts of this broken world. To Him be the glory forever!

Back on December 4th, when I was having surgeries to repair a damaged artery in my left leg as well as the severe damage to my knees, the doctors also placed an IVC filter inside the right side of my abdomen. An IVC  filter usually sits inside a large vein just below the kidneys, and its purpose is to catch blood clots before they can travel to the lungs or brain. Since I had suffered severe trauma and would not be able to walk for several more months, the doctors thought my risk of developing blood clots was pretty high, and so they placed the filter as a preventative measure (ironically, this decision was made before they discovered I had already had two strokes from blood clots). The thing about IVC filters, though, is that they have to come out within a few months of being placed…otherwise they actually grow into the tissue of the vein, and that becomes its own issue. So, now that I am able to move around more, guess what had to come out?? The IVC filter!

A few weeks ago, I was disconcerted to learn that the filter is retrieved by making an incision through the neck into the vein where the filter is placed, then reaching all the way down the vein into the kidney area, catching the filter, and pulling it back out through the neck incision. Ew. (A pertinent question that came to mind was – why couldn’t they just do a small abdominal incision instead? Not sure on that one.) Anyway, I’d been consoling myself by imagining that I’d be asleep – or at the very least in a heavy twilight zone – for this procedure, and so wouldn’t be aware of all the “filter fishing” that was going on.

However, when we checked into the hospital early yesterday morning, I learned during prep time that although they would use a local anesthetic for the neck incision, I would be completely awake the whole time during the procedure. As you can imagine, that was precisely not what I wanted to hear. In spite of everything I’ve been through in the past few months, I hate surgical/medical/painful things, and want to be as far removed from all that as possible. Ivan held my hand and prayed, and both he and Mom stayed with me as long as they could…but by the time I got wheeled away for the procedure I was very, very nervous.

This story does have a happy ending, however. Once I got to the OR the nurse gave me some sort of medicine to make me relaxed, and although I was very aware of everything that was going on (including the filter traveling back up my vein to my neck)…..somehow I felt so calm and happy  that I actually didn’t care any more. If you had asked me earlier that morning, I would definitely not have seen that reaction coming!

So today we are praising God: 1) that the filter came out successfully,  2)That the experience was not nearly as traumatic as it sounded, and 3) That this marks the end of the procedures I will need done in the foreseeable future. God is good!

So I definitely didn’t imagine I would be writing this today, but… I got a cane! I know I’ve already mentioned that I never pictured myself wanting a walker either, but I think the odds of my wanting a cane were actually even slimmer. Nevertheless, life does certainly change your perspective on things..and now I’m super thankful to God to graduate to a new “accessory to the elderly.” 🙂

Honestly, I still feel a tad wobbly on my new cane compared with the walker, but I am excited for the “sleeker” vibe…and how much less work it is to get in and out of the car when we go to therapy! The overall orthopedic update is that my right leg is healing great, and is basically functioning like a normal leg again. The left leg (my stroke side), is noticeably weaker, and is also unable to straighten completely (imagine trying to walk with your knee slightly bent all the time). The good news is that it is possible to walk with my knee slightly bent, but it is more painful, and in the long run we really need and pray that it will be restored back to its full mobility. We keep asking the doctors and therapists for a prognosis on this, and have gotten an overall consensus that it is possible to be completely healed, but that since it is my stroke side, only time will tell. And in the meantime, I’m sleeping in a leg brace, just to increase the odds. 🙂

In addition to my flashy new cane, I also updated my glasses this week. We waited for about three months after the accident before we got my eyes checked, because vision changes can fluctuate throughout the healing process. As I’ve started to read and blog more, I noticed that I was having trouble focusing for long periods of time, and the eye appointment confirmed that my vision has changed enough to elicit a transition to bifocals at the ripe young age of 24. At the very least,  this was an excellent excuse to pick out some  fun new frames!

First off, what in the world is an EEG…and secondly,why did I just have one? Well, to summarize thoughts from my friend Google, EEG stands for electroencephalogram (yeah, I plan to stick with calling it “EEG” 🙂 ), and it’s a machine used primarily to diagnose and treat brain conditions.

In his last post, Ivan mentioned that I’ve been dealing with anxiety symptoms after the accident. Either a traumatic brain injury (TBI) or a stroke can frequently cause anxiety disorders in patients as they recover…and since I managed to have both TBI  and 2 strokes, well, the odds of struggling with anxiety are very high. Just to clarify, this type of anxiety is caused by triggers that are slightly different from the typical things you might expect, like feeling down or worried all the time…it actually happens when my brain gets overloaded from information (via talking, planning, making decisions) or from other stimulation (e.g. noise and/or being with more than a couple of people), and then short circuits and goes into “panic” mode.

So anyway, back to the EEG…my doctor felt pretty sure that most of the symptoms I experience during an anxiety episode are normal.  However, since he thought it was unusual that sometimes  I either completely lose the ability to speak or have difficulty getting out more than a few words, he decided to do an EEG just to make sure there wasn’t anything else causing the issues. So, just to reassure you, this was primarily a  precautionary test (we all expected a good/normal outcome), but since the process was pretty involved and totally new to me, I wanted to share the adventure with all of you. 🙂

EEG Step 1: Cut your normal amount of sleep in half the night before, and abstain from caffeine the day of the test. So yeah..for those of you who know me well, sleep is ESSENTIAL..as in very, very essential. I couldn’t bring myself down to the 4 hours that would have been exactly half, but I did get it down to 5 hours (1 am to 6 am). Poor Ivan stayed up with me for solidarity, which I thought was sweetly touching – and incidentally useful since he was there to wake me up every time i started dozing off before 1 am.

Unfortunately for all of us, my EEG wasn’t until 3:30 pm today, which meant I had to do the sleep deprivation thing, skip my beloved cup of coffee in the morning, go to therapy, and then wait around trying not to fall asleep again before 3:30.

EEG Step 2: Get plugged into the machine.  I had a really nice technician, who used some sort of salty, glue-like thing to attach a fairly large number of wires all around my head and also on my face and neck. This took a decent amount of time, which gave me liberty to wonder exactly how hard it was going to be to get all of that glue back out of my hair, but eventually I got fully plugged in and we were ready to start!

EEG Step 3: Actually do the test. The test itself had several phases, all of which took place in a darkened room (Ivan did get to stay there with me). First, I opened and closed my eyes several times. The next part involved hyperventilating on purpose for 3 minutes (this was rather disconcerting and tiring!) My favorite part came next, which was to fall asleep for 25 minutes. Confession, it probably took me maybe 5 minutes to doze off, but I could tell by Ivan’s heavy breathing he had already been “out” for a bit…talk about embracing the EEG vicariously! 🙂 After this, the tech woke me up for the final part of the test, which involved lots of flashing strobe lights (I got to keep my eyes closed for this part too).

EEG Step 4: Get “unplugged” and head for home…and coffee! And realize the inordinate amount of glue that was still in my skin and hair. For the record, it did come off with a lot of shampoo and hot water!

As with a lot of medical tests, we won’t get the official results for a couple of weeks…but thanks for reading along and “living” this experience with us in the meantime! ❤ 🙂

Yesterday marked the tragic combination of Spring Forward in Daylight Savings Time and my birthday. Besides the joyless task of waking up a whole hour earlier, it was actually a very, very special day. Until now I had thought of 24 as one of those insignificant ages you exist through and gloss over. Until I almost didn’t make it to 24. Now, I’m thankful that the doctors’ initial predictions about my longevity were mistaken, and I think it is a super fantastic age that I am blessed to experience.

And guess what? I got a walker for my birthday!! When I think about birthday wishes from previous years (a violin, a driver’s license, getting into a music conservatory, getting a boyfriend..marrying Ivan) I can assure you that a walker was absolutely 100% NOT on my list, ever. Nevertheless, somehow it definitely did make it on my list for the now-significant age of 24, and like the previous birthday wishes mentioned above, this one also came true! So yes, I actually got a walker for my first “mid-twenties” birthday, and was actually happy about that. While I’m still too weak to leave the apartment unless situated in my old friend the wheel chair, I will now be practicing standing and taking baby steps around the apartment (and looking forward to when this process becomes pain free!). Hello, 24!

Looking over our recovery updates, it struck me yesterday that I have yet to share about my early days of consciousness back in the hospital. Ivan did a beautiful job giving you all the big picture of what we were going through each day, but my first-person “waking up experience” was such a bizarre mix of reality, fantasy, and every shade in between, that it is worth trying to capture…at least in part. 🙂

My first conscious memory is of staring up at the ceiling (I thought I had been taking a nap at home), and gradually realizing that it was NOT our apartment ceiling. In fact, the lights and beeping machines around me made it look a lot like a hospital, except that I couldn’t figure out why I would be at a hospital. I slowly rotated my head, and Ivan’s face came into focus, right next to mine. “Where am I?” I asked. “You’re in the hospital. You’ve been in an accident, but you’re going to be ok.” And then everything faded away again. I now know that this would have happened as I was waking up from the coma…and that apparently this happened several times, since I was confused every time I woke up.

Medication plays a giant part in my hospital memories..and lack of memories too! I was on such heavy narcotics that I remember very little of my actual days there, and the memories I do have are laced with hallucinations. For example, for a while I was convinced that I had gone to London, stayed in a Harry Potter hospital there, and developed an allergy to magical owls. I also thought an owl was living in a corner of my hospital room as a service animal. I kept asking people to get rid of it since I thought I was allergic…it turns out that my “allergy”symptoms were actually because I had a nasogastric tube at that point.

And then there’s Ivan..poor Ivan! He faithfully slept in my room every night once I was moved to Kaiser Fontana and was conscious. I loved him and always wanted him during the day, but when I was awake at night I found myself “transported” to bizarre settings (a church basement, a restaurant, a tea house…) where he had taken me out of the hospital and had either abandoned me without help or had fallen asleep or was awake but was blatantly ignoring me. I would get extremely angry and frustrated at Ivan for being so unkind and beg to be taken back to hospital, but to no avail -the other characters in these wild scenes (most likely “transformed” hospital staff)  kept telling me that I was at the hospital, even though I knew for sure that I wasn’t.  There also was at least one occasion where a night nurse caught me trying to throw a pillow at him with my “good hand” while he slept. Yikes.

There were many more outlandish medicine-induced “experiences” my brain concocted, but I will spare y’all those and move on to more  of the real stuff!

My next “real” memory is of laying in bed, once again with Ivan sitting close by. He asked me if I wanted glasses, and  I was shocked….I have glasses?? When he handed them to me, I didn’t recognize them at all, and thought he must have bought me some new ones (the truth is, they were the same ones I’ve had for the last three years).

And now the memories get a little clearer… probably because I was wearing glasses! 🙂 It took a long time for me to discover the nature and extent of my injuries (at that time I couldn’t move my body independently at all). It took me a long time to understand that both my knees were broken, since they weren’t in casts, and even longer to understand that I had had surgery on both of them (“Why are people always coming in and looking at my legs??”), but the real shocker came when I overheard Ivan talking to a doctor about a stroke. Immediately I got worried, wondering who of our friends or family had one.  “Who had a stroke??” I asked. “You did, my love. Actually, you had two of them.” It took a long time for me to process that. I thought strokes were only for the elderly, and I didn’t understand how I could have had one at the tender age of 23, much less two of them. But at least it did begin to make much more sense as to why I couldn’t move or feel much of the left side of my body!

These are just a few of literally dozens of mental snapshots from those strange days, but I’ll end with a sweet one. When I woke up, I was in so much pain that the nurses recommended trying to distract me from it since even the narcotics weren’t always enough to keep it manageable. I have several memories of Ivan sitting next to me and reading…sometimes I think it was the Bible, and other times probably a story from a book, although I don’t remember what story it was. But I do remember the comfort of knowing he was close, the relief of giving my mind something to do other than focus on the pain…and most of all how kind and sweet and soothing his voice sounded. ❤

This weekend marks the three month anniversary of the accident. It’s crazy to realize that a life can be changed completely in less than a second, and even crazier that I have no memory of the split second that changed mine. Right now, I’m none of the things I was last year (grad student, full time CBU staff, violinist, homemaker), but God has used this time of dependence and waiting to shower me with unconditional love from my husband, my family, and all of you….love that is a free gift and has nothing to do with my physical, mental, and emotional abilities. Thank you all! ❤

This three month anniversary also marks the start of some very important progress! On Monday, I was given clearance to finally put some weight on my legs (and yes, this came 10 days earlier than we had planned!). My first weight-bearing experience was in a machine that lifted me into a standing position so that my legs were bearing my weight, but the machine took care of the actual “standing up” muscle movements for me.  Our next goals are to practice standing up and sitting down from the wheel chair without the help of a machine (but still with someone holding my waist to keep me from falling). In daily life, I will continue to be totally reliant on a wheelchair until I have a track record of safe movements with my therapists, which will probably be another couple of months at least. But nevertheless, I can’t describe how amazing it felt to actually use my legs for the first time since December 3rd!!!

Confession: I was actually a little nervous to do the whole standing up thing (okay, maybe a lot nervous), since I have had some pretty excruciating physical therapy moments along the way…. but God was very good, and somehow it barely hurt at all! I think that’s also a shout-out to physical therapists – when they give you homework exercises, they absolutely know what they’re doing!  So, while the journey toward walking will most likely stretch out until September, I’m super glad to finally be getting started! 🙂