Sometimes the moments of frustration break away to clarity and decision. Gratefully, the crisis is over for now in our care-giving responsibilities.
Recently I vented about the stress and trials of caring for a family member at a distance. She is having difficulties making decisions. She is having difficulty trusting anyone to help her despite reaching out to a few family members to do just that. Then she changes just about everything after you have helped her establish according to her wishes at the time. I am concerned for her safety. Mostly I have been concerned for my own sanity and stress level, caring for a lady for whom nothing is quite good enough. What a tough place for us both to find ourselves.
So we will back away for now until she finds that she really needs us. Her summer visit is now cancelled. Her indecision really is a decision of sorts! My beloved saint of a hubby and I will see this family member within a month where we will regroup in person. Until then I will focus on the tasks of recovery from my own serious illness. More about that next . . .
Paul McCartney wrote the famous ballad entitled The Long and Winding Road when inspired by the farmlands around his Scottish home. He wrote it during a time of tension between band members of the Beatles and then it was published in 1970, just after the break up of the band. I remember being very upset that they were no longer together after changing the popular music scene forever.
This is a sad song. Tonight I understand the many sentiments expressed within the lyrics that go with this sweet melody: melancholy to a sense of unmet longing:
When the road goes on too long before you reach your destination or you never really reach the destination you set out to find . . .
Where the twists and turns push you beyond the roadways onto the rough gravel, shaking you up quite a bit . . .
Who comes along with you sometimes wishes they were not there at all then comes around to being alright in your company after all the weary miles together . . .
What you find dashes the dreams you once had, leaving you with emptiness before the Throne of Grace where all roads eventually will arrive anyways . . .
And you shed deeper tears than you ever knew before in your pain and anguish . . .
Such is the song in my broken heart tonight. All I can say to the God above or beyond is, “I need you now more than ever. Please lead me back to your door . . . let me know the way.” JJ
Truly none of us are normal deep down inside. We all have our crazy stuff, some more than others of course (myself included!). Better for most of that stuff to stay buried you say? Maybe so. Then again, why ever lose hope for becoming more whole, getting well?
For some of us, we don’t get to choose what will be normal for us and our loved ones. This is particularly true when someone gets sick or suffers a serious accident affecting them for say, 6 months or longer. After 6 months the healthcare profession changes your status from acute to chronic. By then the “normal” way of life has broken down and often looks a lot different than before the event. Expectations can change for the future; often people look at you or treat you differently as well affecting many, many relationships.
When living with a serious, ongoing illness or disability, new norms for life get set in motion and become habit. At some point we have to adapt to the changes in routines, levels of functioning, finances, symptoms, emotions, social dynamics, recreation, work, and more. If we don’t adapt then we would spend incredible amounts of energy and resources repeatedly trying to figure out how to cope with the changes. Instead, new daily activities get strung together as new habits, eventually become routines and may even become a new identity as they combine into roles such as “patient,” or “caregiver.” The phrase, “new normal” comes to mind when such profound changes affect both our lives and the persons around us every day.
We don’t necessarily like where we have landed when it is undesirable. Sometimes we can’t change things for awhile; other times the changes become permanent. We do have to make a choice about how we cope with all of it emotionally and in our thought processes including our self-talk. Will we be angry or find peace perhaps in the promises of our Lord, Jesus Christ? Will we give up or keep seeking for answers to aid our recovery? Who will we blame for our lot in life at any given moment? Acceptance may come or it may never arrive on our doorstep. However, some semblance of acceptance is key for moving forward.
The process for me in finding a new normal has occurred slowly over 5 years of battling a serious illness. If I were to summarize the 3 tests noted above of adaptation, emotional adjustment, and thought processes I would admit that I do not like most of the current outcomes. I don’t like the myriad of mold and chemical-avoidance strategies that everyone in our home must complete every day to minimize triggering a seizure attack episode for me. But we do them anyways. I used to cry just about every day and now it’s much less, mostly when discouraged by roadblocks in my care. But I keep searching anyways for answers. Lastly, I don’t and have never doubted that these daily wretched episodes have a biological (NOT psychological) cause that can be treated. So I use the tools I have to help myself get well. I don’t know when or how or why the episodes will stop. I do believe that one day they will stop completely.
And when the seizures stop I will embrace a new normal. Things won’t be the same as they were 5 years ago when I was working as an occupational therapist in home health care. My physical frame is weaker and injured from all of the physical trauma and I’m not sure how much I can get back. I will try, however! I can no longer attend our church, contributing to the loss of many relationships that were just getting started when I got sick. Travelling is restricted to camping in the Tin Can Ranch (on wheels!) for the foreseeable future. On the flipside, a few positive outcomes include having tremendously increased my computer skills, renewed my interest in entrepreneurship, and desire to support my husband’s growing paddling dealership. Being his helpmate has given me purpose on my sickest days when making his lunch when I am awake in the middle of the night was all I could do for my Stevers.
What becomes unpleasantly “normal” may not have to stay that way forever (and usually doesn’t). Those of us who learn to trust in the plan that the Lord has for our lives may find it easier to accept the changes when they come. We let the Holy Spirit guide us, comfort us along the way. We keep our eyes fixed on Christ and our hearts and minds soaking up His Word. We are then better able to let go of wanting things to be as they were and are better ready to grow into the possibilities of a more meaningful, maybe even more fun, tomorrow. I never thought I would be the Assistant Editor of a national canoe and kayaking magazine nor blog or help an artist friend complete her website. I just did what I could with what I had, where I was (as Theodore Roosevelt once said) and have landed in a better place in many ways. Better yet, I trusted in knowing:
Jeremiah 29:11 (NIV)
11 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.
You will be the first to know about those plans for sure, Gentle Reader. We have come a long way together, you and me. I thank you for sharing my journey. Feel free to share your thoughts about the “normal.” We are going to be alright no matter which side of the spectrum we are on, eh? JJ
No plant reacts instantly to a brief change in conditions. But a change that persists is an invitation to wake up. (From the Dirt Simple blog.)
Lately I am finding myself in a place in my world that brings me to a humbling yet screeching halt. I ask: what has happened to the me I once knew and where the heck did I land? The Lord knows the journey that has transpired; the witnesses have varying accounts of this or that as well. But it is the markers in time, the events out of the ordinary that bring the changes to light, that clarify what is actually seen. Let’s see if I can explain a bit more about what is going on over here as one of those episodes hit me hard . . .
Three days ago the daily seizure attacks that I have suffered for 5 years ramped up to over SIX HOURS PER DAY. One day these were all in a row, virtually without ceasing until the wee hours of the morning. The next day I got a divided dose of 3 1/2 hours in the morning then an encore of SIX MORE HOURS in the evening! I cannot even describe to you the mental and physical anguish this brings. Time stops. A single breath, one then the next, is the only measure in my mind of the clock of life ticking forward. Difficult decisions got made between my beloved and I resulting in his cancelled trip getting replaced with the sights and sounds of another hospital emergency room. The drug they gave me helped. Miraculously, the convulsive spikes are but a blip here and there for now.
I have had over a day now to contemplate what life might be like to be normal again. Indeed the pain has gone down some, the brain fog got less misty, and my ability to move improved. So I completed a small garden project yesterday and walked our dog this evening. I think that the ER Doctors who have told me that this illness isn’t biological are dead wrong. Stop the seizing and I don’t need a psychiatrist to tell me to get back into life. I don’t need convincing. It just happens!
There is much to figure out right now. Will I get to work on more treatment like taking down viral infections? How long will I stay on the new medication that could hurt me if it was too long? What will I really do with my life should this process of healing continue? I am hopeful again and that is good. Alas it is poetic that these changes should occur as the earth warms from the cold of Winter outside. Unlike the plants that are either remaining dormant out there or are testing their new growth with some surges in our Spring-like weather lately, I will wait to wake up all the way. In the meantime maybe I can do some good with this wee bit o’ energy. After all, there is no rushing a beautiful awakening to a new life.
Five years is a long time to have been asleep.
I bought a new truck like my Dad’s just 5 days before a kayaking trip changed my life forever. I got sick from the water. I don’t know why I told you that. It’s been a long detour. Now things are changing wildly. Maybe the new beginning will need to involve a little road trip in my sweet ride? To the nursery just out of town of course. They sell bags of shredded pine bark compost that should fortify our garden vegetable beds nicely.