The other day when the physical therapist arrived, it was brought up that she'd been to a workshop recently in which it was emphasized that pain can become on-going due to an imprinting on nerve pathways that do not have a physiological source, not a visible cause. She mentioned some syndromes. Yes, yes. Then she asked if I have ever considered going to a pain clinic.
Lord, have mercy. How long, O Lord? I explained to her (as I've mentioned to her prior: one positive outcome of this surgeon, a second opinion surgeon, and then my pain doctor seeing it after it was mentioned to him is a diagnosis after all these years) that I do happen to have a visible, physiological source of pain. The pain I experience all the time and have since car accident and then in debilitating level after 1987 surgery, is a matter of cause and effect.
I reminded her that it is Arachnoiditis, probably occurring in the second surgery in 1987 as I had coded in recovery. Surgeon came back in middle of the night and rushed me back in for another several hours of surgery to correct the problem caused in the first surgery. In so doing, at some point, regardless, a cut was made in the spinal sheathing, causing the spinal fluid leak plus the condition, albeit not common, called Arachnoiditis.
The pain that people experience who do not have something visible, discernible in MRI's or CT scans, is yet pain, also. I do not judge nor fault anyone with pain that is considered to be stress-induced or immune deficiency or some other more nebulous consideration as to why people have pain. Even if psychological pain, it is pain. Consider phantom limb pain, although it can remain for a limited time period, in time go away, and, also, psychotherapy can help eradicate it.
I am not opposed to pain clinics, either. But I explained to her that years ago, when it became obvious to the surgeon and second, third, fourth, fifth, sixth, and so on opinions by leading neurologists dotted about the country (sent scans and records all over) that I was "going to have to learn a life I never dreamed I'd have to live" (quote from Scripps-LaJolla specialist after he looked at my scans), that I wanted to try a pain clinic. He squashed that idea. Said I'd be worse off just being driven there and back each day. Would defeat the purpose; would cause me more pain for the effort.
He added, as he'd gotten to know me fairly well in the months after surgery, in all the attempts made to help reduce the constant, intractable pain that caused me permanent disability, that I'd "out think a pain clinic the first day." I didn't take it as a compliment; he just knew that I study and do research and use intellect as means of trying to learn and figure a way forward. I also am not shy about speaking up once I have my facts in order.
So, back to the physical therapist here the other day, I said no, I'm not needing to go to a pain clinic after all these years. Back then, the surgeon set me up with physical therapy close to where I lived at the time, and I already had Dr. H. helping me with a myriad of pain management techniques after we also exhausted an attempt for a second career in clinical psychology, as he felt with the gift of paranormal type gifts (I was not adept then with spiritual vocabulary, and mystic was not in Dr. H's nor my ken then), I'd be very good as a therapist helping people with pain. I made it through over half a doctorate in clinical psychology coursework, laying on the floor in classrooms, before pain sieges made us realize I'd not be able to be consistent for clients.
I tell you, it just gets so "old" having to deal with the situation of pain and other peoples' good intentions. I give benefit of the doubt. It is so frustrating, though, when I've explained already, or when I've mentioned now and even given the physiological aspects and symptoms of Arachnoiditis, even though literature mentions that many clinicians will not have heard of it. I have mentioned it to those professionals who have been here, though, in my post surgery recovery, and a couple had heard of it. The others I've explained, as I figure in their careers ahead of them they might encounter someone else with this unfortunate diagnosis.
Lord, I really need far more patience, especially since I tend to wipe out the day after physical therapy session, or like yesterday, taking a shower, or today--had weather shift in the night, so barometric pressure change has the pain high. It is not that I am any more without pain medication as had been the case for a long time past. The problem is not that I am not motivated to get up often and walk around the house or outside, or do the few careful exercises. It is that severe pain is fatiguing; it is absolutely exhausting, physically. I cannot emphasize that enough.
I realize it is too difficult for people who are on the other side of me, viewing me, in their way wanting to help, to grasp the reality of what I am explaining. Some have a hard time accepting it; others listen but are not able to absorb. Some simply do not remember because it is not the usual and no need to research it for themselves as they are living an active and busy life outside their active professions. And yet others are so set in their "take" or what they themselves "think" is the issue here, that they doubt what I explain and stick with their own conclusions. I understand, I do.
This physical therapist, I think, gets it even if might not find someone who is so slowed by pain and fatigue off and on, to be a satisfying success story. Probably my greatest perk for clinicians is that I keep trying, and that I desire to do all I can to improve. I persevere. I can usually bring some laughs. She found it amazing that I find it helpful and encouraging to finally know what has caused such debilitating and life-altering pain after all these years. Yes, I find it a relief to know.
Truth is always best and most helpful. I won't have to go through more hassles from the medical profession; doctors will not say I'm malingering or pain is psychological; other people might limit their insinuations that I don't want to be better; some might stop being biased in the pain meds that help take the edge off--some days better than other days depending on the variables.
After the physical therapist left, I decided to research more, on Arachnoiditis. I was left tempted to feel discouraged by once more explaining my situation. I do know the physical therapist was not blaming me and probably not doubting. I recognize that I'm hardly able to function much, physically; very slow process, and takes energy and grace of God to strive. The physical therapist did state and remind me, that the healing from the surgery--the acute pain--is still in process and can be for a year or so.
Here's what I found, in addition to what I've read prior, about Arachnoiditis. It makes me feel very pleased with the Lord getting me through all these years. I'm proud of my now-adult children who dealt with their single parent, with the ups and downs that pain brings with it, and with the disability of it, to the point that they had to not only fend for themselves much, but they'd care-take me through the pain sieges.
At some point I want to give them this information and tell them how grateful, proud, and impressed by what they gave under most difficult circumstances, and am thanking God all the more for the divine strength and love bestowed upon them, throughout alld these years.
From the 2016 annual meeting of The American Academy of Pain Management, Dr. Forest Tennant presented findings from his research on the topic.
"An extremely debilitating chronic pain condition, Arachnoiditis is caused by injury to the arachnoid, one of the membranes that surrounds and protects the nerves of the spinal cord. It is initially characterized by inflammation, and then by nerve root entrapment, bundling, and adhesion formation, followed by centralization of pain and overstimulation of the sympathetic nervous and hormonal systems.
Dr. Tennant went on to say that Arachnoiditis "is probably the worst pain there is; it's humanity's worst pain." He added that it is "described as worse than cancer pain or the prolonged or excessive pain associated with complex regional pain syndrome...."
The presentation included many more details, but this gives the gist. I tell you, dear readers, it helps me with on-going forgiveness I need to enact, to offer, to put into effect. I must forgive consistently, continuously. Although I've been through a forgiveness process of persons in the past, especially doctors whose not knowing caused me to suffer more, and what's worse caused my children to suffer more because I was denied medication that would have helped at least some, I will have to keep forgiving in the present moment, when the moments present themselves.
I have to forgive myself, as well. I have to forgive myself for the limitations I have due to the pain, and for the many times I might have done better, such as this morning. My voice and attitude were not perky when someone called. The pain was ruling me, not me ruling the pain. I allowed the present moment to go to the past and then to the future. I was tempted to want it all to be easier.
I must forgive myself for not being the soul I wish to be, and wished to be. Even after 20 years this month, from the first inklings of God's call for me to being preparing to enter the consecrated life of the church via the eremitic life, I still know of myself that if not for this further stripping of my temporal life, I'd be tempted and no doubt weak to the temptations of being drawn out of the devoting my life to the praise of God and the salvation of the world, that is the first point of a body, mind, heart, and soul into the Church's hermit vocation.
Lord, I'll cooperate by the grace of Christ's suffering granted to me in suffering out in my earthly body, a small portion of His agony on the Cross. Forgive me, for I really have no options other than to cooperate or to not, even though in my agreeing to suffer, to be a Victim Soul of His Sacred Heart, I do not suffer at all heroically. I can attest to that truth, as can my family and friends if honest.
See what the Lord must do to answer my prayers to fulfill in His will, my mission? See what added pruning is necessary for a weak and undisciplined someone like me, in order to better the hermit be, as well--the vocational vehicle God has given me to fulfill His will, in the latter portion of what temporal years He's bequeathed?
Yet, a marvelous aspect of Arachnoiditis and being able to read about it--there is much more than the bit I've written--is that the suffering all these years, even if I have not suffered well, has caused me to turn all the more to God. I realize that is a huge part of his point in gracing me with such suffering. I won't go into it here, but I was foretold of the 1987 surgery and of living through it by mystical means. I am not surprised at the transition asked of me, currently, for I so easily get enticed more into other creative aspects of life than what the Lord desires.
He wants me so honed to His will and to the narrow path, that especially now with so much stripped and trimmed away, I see all the more clearly that there is really nothing other in life that matters than for souls to love God above all things and others as ourselves. I mean this in a very real and deep sense; I mean it in the way that St. Bernard, for example, sought to love God in Himself and others as an outflow of God's perfect and pure love.
That is what I desire. I must forgive myself, for the reason I have come to desire this level of love of God and coming to union with Him while yet on this earth even if in brief breaths of union, is due to pain. I understand that it is the pain that the Lord allows, that is His means for me, to keep me from being drawn out and away from the singular point, the recognition of what is the purpose of our lives. I'm sorry that it has taken great pain in my life to keep me honed to desire union with His own suffering and ultimately his Divine Love.
Forgive me, Most Holy Trinity. I am sorry I am so weak, so easily drawn off the purpose, Thy will for me. I'm so thankful for all the times that pain has been the prod, the goad. I'm thankful for the opportunities given before the more intense sufferings came along--accident, divorce, surgery, constant pain. I'm thankful I have been able to experience the love of a parent for children and their love in return.
Now to press forward. On-going forgiveness--I embrace forgiving onward as another crucial facet of loving God and others as myself. Now to get up off this icy pad on the bed and do some exercises, walk around, and know that the level of the pain today will ease off a bit with another weather shift. Know that the acute pain of the surgery will ease as it already has decreased some, incrementally, just as my ability to get up and walk and undertake more tasks to fend for oneself are increasing some, incrementally.
The Lord is making His will known to me His will all the more clear. More has been trimmed away of external life; more will be given in the interior, of the spiritual life, of the mystical life in His Real Presence, and for the espousal of others.
God bless His Real Presence in us!
[This lengthy post, another cathartic one, helping me endure higher pain today than what I've been better able to manage at other times. It could be discouraging since it has been 8 weeks since surgery, but given the reality from research, I feel joyous in being given the grace by God even if by my clinging, grasping Jesus on His Cross in order to try to cope. I tell you, I first read the Psalms upon waking--whatever Psalm in the day's Mass readings, as they come daily to my laptop inbox around 3 a.m. I beg St. Bernard through whom I'm connected as now reading a volume of his sermons circa 1137, to help me yearn for God out of loving desire, not from the pain alone. That might be a bit arrogant of me to even ask, to yearn for God, to love God in Himself without the pain being the impetus. For I honestly think if not for the pain, I'd be off and out into the beautiful world, the world of activity and good pleasure, of work, and then even drawn off into the world of a parish. Rather, the Lord wants me for Himself, within Him increasingly close, drawn to union. Pain is a loving means for someone like me. I do not have the purity and discipline of soul such as did St. Bernard of Clairvaux]
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