Sometimes I am not quite sure why I am crying, this late in the game. I’ve been here before, I know my Heavenly Husband is in charge, and I haven’t died no matter how severe the symptoms have gotten. My husband and I have seen the Lord work amazingly through this illness. New skills have come, I am grateful to have met you Gentle Reader, and by the grace of God we have overcome tremendous trials together. Healing is on the horizon with a new treatment direction . . . I even have my own company on the drawing board to fulfill my entrepreneurial dreams. So how can I possibly be sad?
I am sad because it is normal to be sad when suffering. I am sad, grieving if you will, for all of the losses even if it was good to let some people, places and things leave my life once again. I am sad that Steve and I had to lose so much to gain so much goodness. We almost missed “it” so many times! I am glad that we are more in love now than ever before and it came though an extremely difficult path. No longer do I ask the questions “why” and “what if?” More often my question is “when?” When will this hell be over?
Stand fast therefore in the liberty by which Christ has made us free, and do not be entangled again with a yoke of bondage. (Galatians 5:1)
Set your mind on things above, not on things on the earth. (Colossians 3:2)
For God has not given us a sprit of fear, but of power and of love and of a sound mind. (2 Timothy 1:7)
And let us not grow weary while doing good for in due season we shall reap if we do no lose heart. (Galatians 6:9)
. . . but we also glory in tribulations knowing that tribulation produces perseverance; and perseverance, character; and character, hope. (Romans 5: 3b-4)
. . . being confident of this very thing, that He who has begun a good work in you will complete it until the day of Jesus Christ. (Philippians 1:6)
But I want you to know, brethren, that the things which happened to me have actually turned out for the furtherance of the gospel. (Philippians 1:12)
Therefore I ask that you do not lose heart at my tribulations for you, which is your glory. (Ephesians 3:13)
I can do all things through Christ who strengthens me. (Philippians 4:13)
Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need. (Hebrews 4:16)
And my God shall supply all your need according to His riches in glory by Christ Jesus. (Philippians 4:19)
For we walk by faith, not by sight. (2 Corinthians 5:8)
I was hoping that somewhere between copying these lines of scripture and writing this blog that I would feel better. Well, not yet! When all else fails, I shall crawl up to the cross of my Jesus, place myself at the foot of His throne of grace, collapse in the shelter of His mighty wings, rest in the promise that He is always with me: now and forever. Yes, this is the best place to go after all. Here is where I belong. JJ
Some disappointments this past week have reminded me of the importance of handling “loss” well. Change is a certainty in this life and many of us have had more than our share of both the voluntary and involuntary fare. Change often means letting go of something or someone we cherish. For the Christian we can view change as part of becoming more like Christ, maturing in our faith, and working out the details of our lives with the Lord. It is necessary! And all too often it doesn’t feel well though.
Here are 5 changes that came in rapid-fire succession for me lately:
A counselor that I have been seeing to handle the grief of this serious biotoxin illness I’m dealing with, suddenly discharged me from her care. A week ago Tuesday I had a major seizure attack episode in her office and had to leave abruptly. The episode went on while standing outside the front door to her office then continued as I struggled to get back into my truck. An hour and a half later I was able to leave to return home. She checked on me multiple times during the event and even called me a few times to discuss our next appointment. Until that day she had been opening the window in her office for me to increase air circulation before our starting time. When she did not do so until I was about to walk into her office (on a rainy, humid afternoon), the scented “warming candle” residuals, soil aerosols from her live plant, and possible contaminants embedded in the office carpeting were too much for me. She is now unwilling to meet me in a nearby library conference room since her driving time simply would not be reimbursable, won’t fit into her busy schedule. So for now it’s bye bye Julie.
For the third year in a row I had to miss my husband’s United States Canoe Association Nationals due to illness. I am sad. I love watching Steve compete in his surf ski (racing kayak) and missed both of his races including the exciting trial class event with our outrigger canoe. It sounds like there was a photo finish as he crossed the finish line and I was not there to take it all in or take pictures. Sigh. We love taking road trips together. Even if we could have afforded the expense of travelling together, I cannot tolerate the fragrances of hotel rooms, conditions of camping, or the unknowns of renting a travel trailer. Such is life with Multiple Chemical Sensitivity and Chronic Inflammatory Response Syndrome! I stayed home with our German shepherd pup in our “safe home.” Parts of the two full days were actually better by the way: I got to dig in the dirt of a new garden bed. The second day was terrifying however with two, severe, hour-long episodes while home alone. My Jesus saw me through when I thought I would stop breathing. I did not. My husband needed this time away. Besides, having someone stay with me or check on me in the end dangerously increases risks to my health. We made tough choices indeed.
I realize that the isolation that accompanies this illness is killing my spirit. I sense my social skills eroding. Sitting in my truck in a cemetery adjacent to a Garden Walk event on Saturday, I nearly panicked because I was late and there were cicadas plunking my windshield as I tried to wrap up a phone call with Steve! I had not talked to anyone but my dog for 24 hours so I was glad for his call. However, I had felt awkward and alone getting ready. And I know that these were just feelings. The evening out went fine with barely a few tic zips, enjoyment of select entrees, and meeting some really nice fellow gardeners. It’s just that the social part of my life is so unnatural, absent, and different now. Just like when I went through a divorce, lots of people have left my life once again. Reaching out has been tough when it’s so complicated just to get together. I will keep trying though. I have to . . .
An occupational therapy (O.T.) recruiter for an agency for whom I used to do contract work called me TWICE this past week! I guess they really needed someone! Oh how I miss working. Last night I did the equivalent of 4 hours of (free!) continuing education credits for my O.T. license, inspired perhaps by the phone call earlier. Maybe someday there will be an equivalent at-home professional job that I can do that will utilize my skills. Just gotta get rid of some daily seizure attack episodes first, eh? Today they lasted most of the day. My “job” was to take a shower and make dinner. Done. Don’t need an App to keep track of this kind of schedule, I tell ya! Sish.
Most of the time my worship is in isolation. For a long time I looked to my husband to try and fix this one for me. Why wasn’t he trying to find a church for us in a newer building that wasn’t water damaged? My criticism of him and “our” church goes on from here; it is not good. I have tried to fill the void with a read-the-Bible-in-a-year App, Christian radio talk shows, following various ministries via email or Facebook, interacting with other believers via the same, and continuous prayer throughout the day including praying with Steve. But I crave real Christian fellowship. I crave Women’s Bible Study. There wasn’t even an outdoor baptismal service with our church this year and the annual hot dog roast will be a “no” in October due to the noxious exposures from the campfire. (The smoke was hell for me last year.) My heart is breaking on this one. I know the Lord sees it too. I trust Him. Just today I got the sense that I may need to reach out a little more and not wait for someone else to fix it. I contacted our “Encouragement Ministry” leader about starting something with others who are home bound and I am waiting to hear back from her. Hopefully it will be soon!
While we could discuss the solution to these problems the more important point here right now is that I know that each of these will bring goodness in due time. I have realized the promise of the Lord “restoring the years the locusts had eaten” (Joel 2:25) after my life fell apart in 2003. Joy returned and reminders of it are all around me. I have chosen to write about these things in hopes that you will pray alongside me for the Lord’s will and redeeming grace for these recent losses. Perhaps you, too, have loved and lost much while enduring all kinds of trials. Please let me know about them and I will pray for you.
Gentle Reader: we are to stand firm on the foundation of our faith in Jesus Christ who will:
Make all things new. (Revelation 21:5)
Direct our paths. (Proverbs 3:5-6)
Extend His love, compassions, and faithfulness in newness every morning. (Lamentations 3:22-23)
Remember us in our low estate with love that endures forever. (Psalm 136:23)
Reward us for our faithfulness. (Matthew 6)
Bless those who are good stewards of time, talents, and resources. (Luke 16 & Matthew 25)
And so much more. I am encouraged. My Jesus sits on the throne of my life and the throne of grace. He will make beauty from the ashes (Isaiah 61) which are the losses that characterize living a full life here with Him as our Lord and Savior. I trust His Word on this and hope that you will too. Let us rejoice with great expectation for the goodness to come!
10 I delight greatly in the Lord; my soul rejoices in my God. For he has clothed me with garments of salvation and arrayed me in a robe of his righteousness, as a bridegroom adorns his head like a priest, and as a bride adorns herself with her jewels. 11 For as the soil makes the sprout come up and a garden causes seeds to grow, so the Sovereign Lord will make righteousness and praise spring up before all nations.
While my brother’s fiancé is there at the hospital with him in the thick of things, his next of kin is a bit upset. I am too upset to make any rational decisions. The feelings run deep with me. It’s all I could do to be polite on the phone today to the social worker from the rehabilitation unit where Mike is hospitalized. At least Steve and I have the weekend to sort things out . . .
Very likely Mike will get booted out of the hospital next week and sent to be housed in a nursing home without additional rehabilitation services. His insurance is “Medicaid Pending” and his requiring of 24-hour physical care post discharge, a situation that cannot be met at home for valid reasons, is pushing the hospital to discharge him from their care. I don’t get it. In my 30+ year career in rehabilitation as an occupational therapist, the discharge criteria virtually always hinged on a lack of progress, not the particulars of discharge planning. It’s a new day: a new reality. If you can’t do what the government-driven healthcare system wants you to do then I guess they can wash their hands of you.
Perhaps he will go to a nursing home or perhaps by some miracle the Veterans Administration (VA) will accept him on such short notice. If the decision is the former, he will be fed 3 meals per day, kept clean and dry, and left to sit slumped in an overstretched wheelchair or geri chair in front of an out-of-tune entertainer from the long term care circuit with a pair of maracas shoved into his functional hand. The wailing of the demented residents will woo him to sleep at night as he tosses on his waterproof mattress to get comfortable around the bedsores that no one will find until it is too late for healing. Thickened Pepsi to drink? Not a chance. At least until his fiancé cleans up her make-up from crying long enough to ignore the swale of urine stench long enough to bring it to him. God bless her faithfulness visiting every day through this incredibly stressful ordeal!
Or perhaps it won’t be that bad. Maybe he will get into a VA rehabilitation facility with little red tape and get stronger. Regardless, the hope of at least a few weeks of physical, occupational, and speech therapy has vanished for the time-being. And Michael has no idea yet, what is about to happen to him next week. I left a message for his saint of a fiancé and she has not gotten back to me yet. Maybe she is in as big of SHOCK as I am. Maybe she is exhausted and horrified from touring nursing homes closer to where they lived in the “thumb” area of Michigan. I don’t blame her for taking a little time for herself to sort things out. My heart goes out to Lisa. She has been through so much these past two weeks as her life has changed forever.
As for me, 200 miles to the south and struggling with four hours of seizure attacks multiple times per day, I am overwhelmed with the stress of it all. Just seeing the missing flooring in our bathroom from yet another mold remediation project is enough to stub my toe even when the light is on. Somehow I completed a few errands outside the home this afternoon and made a simple dinner. I talked to a few family members who offered mixed consolation while I was stepping on the elliptical for 20 minutes, phone in hand. Geez! I haven’t used that thing in a few weeks! I must be stressed out. Thank goodness the nightly seizure attack episodes haven’t fully ramped up yet tonight: I needed to talk to you, Gentle Reader! I started to type and there you were. Thanks so much for being here. I can barely speak I am so very upset.
Life goes on despite the drama of the moment. If Steve and I don’t impulsively drive 3 hours north to go to the hospital tomorrow and I’m stable enough, we will attend the 50th wedding anniversary open house of some friends. It will be good to enjoy some Christian fellowship. Then maybe my beloved Steve will start to work on the bathroom floor tile project and I’ll put together the jewelry orders that have been sitting at my work table this past week. Lord willing I’ll continue with the Spring clean-up of our gardens and Steve will mow the grass for the first time this year. Looks like the narcissus will be blooming within a day or two with their yellow-throated happy faces reaching up to soak up the sun. The sunshine will feel good on my broken frame as well and I will enjoy the freshness of the air this time of year. There’s no better hue of green than that of the tender leaves emerging from their Winter slumber: truly lime, truly sublime too. Some call it “horticulture therapy.” Gee, maybe I should go right now poke my finger in the dirt of the violets waiting to fill the self-watering planters I thought I might plant tomorrow . . . I need a fix of something and a shot of tequila is out of the question these days . . .
Please pray for us. This sister bear is hurting more for her brother than anything right now. My beloved Steve has been so loving despite the challenges of my illness, demands of his work, and his other responsibilities. Lisa has got to be struggling as well, balancing work, the care of her teenage son (Alex), and assuming increasing responsibility for Michael’s affairs. She and Michael have known each other almost 7 years. Her 13 year old son has a great relationship with Michael too. Oh Lord, hold us all closely this night. Help us. Show us Your love, mercy, and grace. Guide us with wisdom. If it is Your will, heal my brother from the effects of this devastating stroke. Comfort him as he realizes all that has happened to him and show him hope, be real for him on his bed of sickness. He has reached out to you in his time of need. I am grateful for this and grateful that you are here with us. And thank you for the encouragement we find in Your Word:
16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal. (2 Corinthians 4)