Not that I have a total handle on this topic or anything but hey, I have learned a few things worth sharing . . .
Every day for over 5 years I have suffered waking seizure attack episodes of varying duration and intensity. For over a year (ending last year) they averaged 2 to 5 hours per day! At least once per month they would spike up to 12 hours on and off in a single day, sometimes requiring an Emergency Room intervention. I have been to 3 different emergency rooms a total of FIFTEEN TIMES including once by ambulance. After nearly a year of IV antibiotics for chronic Lyme disease these episodes are generally less than an hour per day now with some positive changes in triggers and patterning. Significant testing and other treatments, research, and patient “networking” remain my primary occupation. I am grateful for the improvements that have come including overall less pain from the repeated physical trauma of “head-banging” and wretched writhing movements (thanks to periodic intervals of physical therapy and periodic chiropractic adjustments).
The journey is hell at times. At my worst times I have questioned if I could endure this level of suffering one more moment. My breathing has stopped numerous times and there has been one significant near-death experience with visions of “white lights.” I have had to pray many times for the Lord to give me the strength to get to the bathroom when alone during hours of convulsive episodes. Every type of healthcare provider I have ever seen and most close friends and family has witnessed them. My husband is a saint, having cared for me often late into the night then getting up and going to work the next day. A total of probably a hundred times he has had to carry me across our home when I could not walk, feed me, take me to the bathroom, assist me with bathing, take me to the emergency room, run urgent errands, and the like as my primary caregiver. Probably a thousand times he has volunteered to bring me some type of “rescue remedy” to attempt to get the seizures to stop (generally at night or upon waking in the morning). He never complains. He is my hero for sure.
In other blogs you will read about all the avenues we have pursued to try and get me well: chronic Lyme disease, heavy metal detox, mold remediation, obscure infections, dietary restrictions, neurology workups, dental issues, nutritional deficiencies, epigenetic testing and coaching, electrosmog, gut issues, yada, yada, yada. I spend hours per week researching, managing my healthcare, dealing with extreme mold avoidance and other preventative strategies, and accessing my support system online or by phone. Church worship is also online to minimize triggers from environmental stimuli, however this strategy also increases my social isolation. Trips away from home are generally focused on essentials during my best times of day and occasionally with transportation help from a couple of sweet gals from church. I wear a mask in their cars and sit on a towel covering the passenger seat but we find a way to connect anyways during those trips when help is needed about once per month.
As you can see, there is much abby-normal stuff during my days. Social isolation and the ongoing seizure attacks are my biggest heartaches. The latter causes both physical and emotional trauma when they are severe which still happens two of the seven days per week still marked by ongoing episodes. The two this week included: 1) a violent reaction to an ingredient in an new injected medication that I need to treat osteoporosis and 2) a new strategy to treat severe Small Intestinal Bacterial Overgrowth. Both of these conditions very likely are complications of ongoing illness as they were not present before I got sick on October 11, 2011. Each new diagnosis will bring its own special kind of discouragement if I don’t keep my worries in check with my hopes placed in the redemption promised with belief in Jesus Christ. Already I mentioned a few of the strategies I use for managing the social isolation. What about the trauma?
I manage the trauma of severe, ongoing illness by trusting in my Lord and Savior, Jesus Christ. This used to mean that I trusted in the promise of Jeremiah 29:11:
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. (NIV)
Surely if there is a purpose for all of this suffering then it won’t be wasted. It becomes part of a greater plan, encouraging me enough to endure even the worst of the pain and anguish I am enduring. This viewpoint has helped me cope during the first 5 1/2 years of this illness. It carried me through the decisions to spend the rest of some savings with the hope of a cure and to endure the side effects of such treatments. I can look back and point to the skills and information that I have learned, write about them here, take to heart the remarks of others encouraged by my stories, and note the Divine sequencing of many things that have happened along the way. The Lord has provided so much for my care that gratitude has replaced temporary doubts, frustration, discouragement, intractable pain, and so on. Seeing some meaning in what I am going through or shortly thereafter, gave both me and Steve enough hope to keep moving forward no matter what the “cost” may be. But what about when the process stopped? The money ran out. I am not recovered. There was no where else to go this past Winter when I got to the bitter end of my proverbial rope with worse symptoms than I could ever imagine! Yeah, that was the onset of facial shingles in December. More hell and a hospitalization too.
That’s when I needed to learn to trust whether there would be a purpose I could see or if there would be no purpose or direction at all. I discovered that complete trust in our Heavenly Father builds faith and the strength to carry each of us through ANYTHING and EVERYTHING. It’s a supernatural gift bestowed upon believers in God Almighty who trust Him. For those of us chosen to travel a path of excruciating suffering, we must find our way to this level of trust in the Lord our God. Our faith will grow as a result and both will carry us through the dark times no matter how dark they become. Did I tell you that frightful demonic attacks have come during the worst of the waking seizures? Yes. It’s more terrifying than I can describe but may try to do so another time. At those times only the spiritual armor of God (see Ephesians 6:10-18) and this reassurance spoken by the apostle Paul will quiet my spirit. God is greater than any threat in this world, in my world, period.
2 Timothy 1:7 (NKJV)
7 For God has not given us a spirit of fear, but of power and of love and of a sound mind.
Because what is my worst fear anyways? Dying? For me it is probably not dying but suffering even more with dying as the end result. So finding peace when dealing with the trauma of physical and mental suffering must be accompanied by the reminders of Who overcame death, in Whom have I placed my trust, and in Whom will I find victory over my fears. To extinguish the fearful thoughts I must again turn to the “sword of the Spirit” as described in Ephesians 6:17 as the word of God. In the Book of John we find Jesus comforting a grieving friend when:
John 11:25-26 (NIV)
25 Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die; 26 and whoever lives by believing in me will never die. Do you believe this?”
Not only did Jesus overcome the grave when He rose from the dead on Resurrection Sunday (Easter), He gave those who believe in Him the promise of a glorious eternal life in His presence where there will be no more weeping, no more sorrows. There will be rewards for the faithful too. There will be perfect peace, love, and joy forever.
I may never see healing this side of heaven. I may see healing this side of heaven. I really have no idea which one it will be or when it will happen. In the meantime I will simply trust in Jesus Christ who knows my name and sees my suffering (Psalm139) and ordains it somehow for good. He will be here with me always. I ain’t dead yet so I trust that He will add His grace and power to see me through to my last breath. Until then Gentle Reader I ask you,
Do you believe this too?
Jesus is for the Wounded 