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From one extreme to the other
So much of the self-help genre coaches the weary traveler in achieving a blissful and balanced lifestyle. When I was an occupational therapist working in psychiatric hospitals, I would often lead a patient group in a goal-setting exercise entitled, “Achieving a Balanced Lifestyle.” It was always my favorite therapeutic activity to do.
Each patient received a worksheet with the title at the top followed by two large circles, one at the top of the page and one at the bottom. Both circles were divided into the same 5 sections labeled: Physical, Emotional, Social, Intellectual, and Spiritual. The exercise began with the group members filling in each section of the top circle with activities that fulfilled that particular need. For example, Social might include visiting friends and Spiritual might include Bible study. Often patients struggling with mood disorders had very little in the emotional and social areas. Persons with depression had very little on the page at all.
The lower circle was for goal-setting. My hope was to help the individual begin to see beyond the crisis that led them to the hospital and think about what he or she might do during the day to use time effectively as a coping strategy. I only asked for one activity in each of the sections. Of course we had already brainstormed a list of activities as a group and these were written on a large white board at the front of the room. Eventually each person had a plan and something to share with the rest of the group. Since so many things are discussed in a person’s life during a short hospital stay, I asked each person at the end of the session to name just one activity as a starting point. Virtually everyone was able to identify something, a place to begin.
Geez, if I were to complete my own plan for achieving a balanced lifestyle, I wonder where I would begin? Let’s see, I’d have one worksheet for a sick morning and one for a stable afternoon. Then there would be another for when I’m most likely to be functional in the middle of the night and another during IV magnesium treatments at the hospital three times per week. I might be tempted to tear the page in half and add various goal-setting scenarios based upon my feelings at any given moment. IN OTHER WORDS, setting goals sometimes just doesn’t work! My best intentions are often met with a 180 degree turn of events. This requires me to live in the moment on a moment-by-moment basis!
Last night was a crazy example of this. At 9:00 p.m. I was with my husband sitting around a campfire outside at our friend’s house roasting hotdogs over the fire. Within the hour we all were wielding shovels and pitch forks emptying the bed of my back truck of yard waste into a ditch on his property. But within another hour I was writhing on a bed seizing with convulsions, unable to speak or move very much at all! The next hour was filled with my husband providing virtually all of the physical care needed to transport me to the bathroom, wash away the sooty residue from my hair and tender frame, and bring nourishment for me to eat huddled under the covers in bed. Sigh. So what was my goal by the end of the night? Get up to use the toilet with my own strength. Check. Goal achieved for the Physical section of my paper-and-pencil exercise in my mind.
Almost every day is like this. Yes, I’ve had 3 days with no seizure episodes in the past 3 weeks and there are about a half a dozen fewer episodes per week overall. I guess if I could stay in my safe home bubble, I might be able to knock down a few more. Yet after 2 years of illness I tend to forget and “go for it” when I feel stable, trying to get out of the house to do something meaningful not realizing that the setback pushes me back to “Ground Zero” of the recovery process. The goal is to not react at all. Each reaction re-sets my immune system at some arbitrary level, sensitizing me to be more vulnerable to the next exposure. I may be able to anticipate that exposure and I may not. Sometimes the cause is hidden. When our friend placed a log covered with some type of blue fungus on the fire, I had a feeling something bad could happen at some point . . . but we were having fun . . .
Such is life in the world of Chronic Inflammatory Response Syndrome when you have a genetic disposition that is vulnerable to mold illness. I have no idea anymore where the Lyme disease fits into the matrix of illness. Right now the focus is on the mold illness. And today the focus was on recovery. Then this evening I got a do-it-sick burst of energy and spent 3 hours washing the composted dirt out of my truck! Later I made dinner, kale chips (yes & they are pretty weird actually), and a lamb/turkey meatloaf for tomorrow. I’m sitting here sore, pleasantly fatigued, and sensing a pre-tic syndrome rising up from within. And so it goes from one extreme to another once again.
Perhaps a better exercise than filling out a worksheet would be to meditate on some Words of wisdom:
5 Trust in the Lord with all your heart and lean not on your own understanding; 6 in all your ways submit to him, and he will make your paths straight. (Proverbs 5)
Many are the plans in a person’s heart, but it is the LORD’s purpose that prevails. (Proverbs 19:21)
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11)
In their hearts humans plan their course, but the LORD establishes their steps. (Proverbs 16:9)
So I end with my charge in all of this: Whatever happens, conduct yourselves in a manner worthy of the gospel of Christ. (Philippians 1:27) Whether it’s with tears hidden in the soapy shampoo water or standing outside in the dark soaked with silt-laden overspray from the tailgate of a truck, I will lean into my Jesus for the strength to carryon. This kind of power is supernatural. There is no way I could endure all of this and persevere on my own; I am too broken.
I wonder if you have been there too, Gentle Reader? Have you been in a place where you must do something but you cannot do anything? This is the very place to come before the throne of grace and meet Jesus, face-to-face. His infinite love will transform the moment beyond what we could ever imagine, ever wish for, ever plan for. We only have the moment in which we are breathing anyways. When your time comes as I have described mine here, I do pray that you will reach for the One who understands and can make a difference now and forever in the course of your life. His loving presence will transcend the circumstances and lead you forth, with purpose and meaning.
He did it for me. He does it for me every day. Perhaps He has carried you before you even realized Who or What was guiding you? He is here for both of us, transcending the extremes of our times. I can think of no better way to achieve peace. Can you?
Me thinks the lady dost protest too much
According to Wikipedia (and who can argue with the Big W?) The quotation “The lady doth protest too much, methinks.” comes from Shakespeare’s Hamlet, act III, scene II, where it is spoken by Queen Gertrude, Hamlet’s mother. In Shakespeare’s time, “protest” meant “vow” or “declare solemnly”. It also means that she is promising too much. Well I don’t know about the Queen but this lady is going to take it literally: I think my posting about illness is getting to be too much!
So I must digress for a moment into another topic altogether. You see, the failing of dealing with chronic illness (defined as that which lasts more than 6 months) is when the diagnosis becomes you. When I start to use words like, “my Lyme disease” or “my mold illness” then I am beginning to affix a permanent label to myself: a new identity as a sick person. Sure, I am a person with a serious illness. Yet if I am not careful, I will develop such a strong identification with the role of “sick person” that it will be difficult to embody or identify with other roles and activities in my life. It could be difficult to identify with healing when it comes; that would be bad! The tendency when wearing the “hat” of a disease too well is to talk about symptoms or treatment all of the time. I could constantly be complaining about the daily headaches and pain, difficulty concentrating, or pre-tic phenomena, etc. And if I do that, I simply won’t be much fun to be around. I will find myself alone more of the time and I’m already alone a lot!
So I must make a conscious effort, beginning with those closest to me, to focus on him or her and other things no matter how benign the topic. Gotta start somewhere! I can always find something to say about our cute pupster, the mail that came that day, or something for which I am grateful. I can always lavish in the goodness of the Lord, Jesus Christ and how he has given me a warm, pretty home in which to reside. I can always be grateful for the healthy food that is available to me in our smallish town from both local farmers and chain grocery stores. (For example, have you seen the great prices on organic, free range chicken thighs in the Family Pack at Wal-Mart?) And when in doubt, I can even brag about making it to Level 102 in the Facebook game Pengle. Hey, what else am I supposed to do when spacey at 2:00 a.m.? The game is not that easy and it’s kinda fun too!
One of my favorite topics is my husband Steve. He is an amazing man. Steve begins his day with an extended time of prayer before taking care of our dog and getting ready for work. I am often sleeping or returning to sleep as he is leaving for work; we chat by phone sometime later in the afternoon. By that time he has designed a cool aspect of a weather satellite or test instrument in his role as a mechanical engineer for a world-wide firm. At lunch he cycles. Yeah that’s right. Most of us take bike rides. Not my Stevers. He is a competitive athlete to the core even during his lunch “rides” where the guys crank out 20 or more miles, averaging 19 or so miles per hour most days of the week. Then on Tuesday nights during the warmer weather and most weekends until the St. Joseph River freezes over, you’ll find my River Bear in his kayak-on-steroids. Steve races in the United States Canoe Association circuit (K-1 Unlimited class) here in northern Indiana and at Nationals every year. His two little ditties are 21-foot carbon fiber surf skiis that weigh in at around 23 pounds each! The Epic V12 looks like a Tomahawk missile on top of his stealth fighter Dodge Magnum low rider transport vehicle. Then there’s the multitude of service activities to our church including worship, Bible study, and fellowship. It’s amazing that there’s any energy left when the dude returns home. Yes, there is energy left for me, with hugs and tenderness too. Even at midnight when I’m not doing so well on a work night.
I love Steve with all my heart. It’s a privilege to be his wife, a blessing from the Lord. I have never felt so loved, so cherished, so respected, and held in so high of esteem by anyone at any other time in my life. His sense of humor, common sense, and Godly wisdom enrich me immeasurably. He is often my “Jesus with skin on.” Thank you, Jesus for blessing me with an amazing man of God.
Ladies, amazing men do exist! Can you see one important reason why I strive with what little strength I have these days to be the best woman I can be? Sometimes all I can do is make my man his lunch . . . at 3:00 a.m. in the morning before I finally make it to bed. So I make it the best lunch I can possibly muster with my Heavenly Husband holding me together until it’s completed. Then the dog gets a scratch behind the ears and it’s time to collapse into whatever the darkness may bring. At least I know as I close my eyes each night that this lady has “professed” her best culinary care and it is not “too much.” I’m hoping it’s just right!
Oh my Heavenly Father, thank you for my beloved who cares for me and my heart in this life until we both can be in Your presence forevermore. And if it is your will Lord, I ask to be able to be with Steve a little more as husband and wife, sharing the joys of life and being together. Thank you for helping us to find some sweetness despite this season of illness in my life. Thank you for Your provision and helping me, helping us to endure this difficult journey. You have sustained us, carried us over and over again through much uncertainty, false hopes, unexpected setbacks, and complications. While all this is true, You have also allowed others to see You here and there when we somehow got it right. Oh Lord, I pray that we continue to be a worthy steward of all that You allow in our lives for Your glory alone. Thank you for a better afternoon and evening today. I love you too. In Christ’s name, Amen.
Helps to laugh!
Spring and Fall
My body will tell you tonight: it’s quite an accomplishment to finish our Spring and Fall yard clean up projects all within 24 hours! Whaaat? Such is life these days. All completed just in time for the long soaking rain storm outside my window as Winter approaches . . . the maiden tulip bulbs are going to be real happy in their new home!
I am exceedingly grateful to be functioning somewhat better despite the ongoing noxious episodes that occur most days. Then there were two noxious-free “holidays” within the past four days. THIS IS HUGE GUYS AND GALS! I haven’t had more than a one-day break per week since living in the hotel at the beginning of the year when we were remediating our home for mold. Looks like the IV magnesium treatments (counted #20 today) and sugar/sweetener-free cholestyramine are beginning to work a wonder inside of me. I am grateful and humbled.
Despite all of this good news for some reason I needed to cry a bit today. This year has been especially traumatic. When I’m in one of those hour-long to several-hour-long episodes my ability to think and reflect is gone. My mind is blank. No processing occurs of what is happening to me. I have heard patients with dementia describe his or her mind this way. There just aren’t any thoughts. Gratefully I do not have dementia. I often wonder, however, if there will be synaptic damage from the almost 2 years of seizure attacks. Then again, maybe the neurons just needed a little Spring cleaning, resetting, and the like. Anyways, I believe that to grieve the loss of my health is, well, healthy. Perhaps it will pave a comprehensive path to healing?
The end of Psalm 139 reads:
23 Search me, God, and know my heart; test me and know my anxious thoughts.
24 See if there is any offensive way in me, and lead me in the way everlasting.
I have heard an application of this passage that it can describe the need to reflect upon and grieve a past trauma as part of a God-honoring healing process. The Lord knows me and my circumstances in addition to the outcome. By opening my mind and heart to His merciful grace under the shadow of His wings, I will find rest. I have prayed many times to “get” the purpose of all of this suffering and wondered if I was “there yet.” I asked my husband Steve, my God-honoring spiritual leader, if he thought there was anything I was not seeing. Was there some sin or character flaw that required repentance? Steve was gracious when asked these questions. We both saw the little lessons and unexpected blessings that were the “silver lining” to this illness. We have not become embittered. We have drawn even closer together and to Christ. Whew. Thankfully.
Blogging started as online journaling and has become so much more. I do hope that my writing will be used for God’s glory and point people who are going through serious trials, to the person of Jesus Christ. To the Gentle Reader out there, you have also helped me find a plan and a purpose for this time in my life. The process has become as meaningful as the lessons learned. One lesson learned yesterday: don’t leave a wheelbarrow full of mulch out in the yard! Put it under the covered porch. Six times it got rained on and rained in. Geez that was one heavy wheelbarrow!
A little humor helps fer shur. And my Stevers is a great model of the value of silliness in the middle of the crap-o-la-ski. (You were missing my Polish, I know, so here ya go!) Thanks for hanging in there with me. Wish I could hug ya, eh? :J
Jesus is for the Wounded 
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