Saturday, August 20, 2011

Hospital Stay, I Wasn't Counting On, Ended Up In The Cards.

Whether I shall turn out to be the hero of my own life, or whether that station will be held by anybody else, these pages must show...(the opening lines of David Copperfield as written by Charles Dickens;inspired by MTM). Or at least this ACCOUNT will, perhaps, have a reflection on whether I'm going to be the hero in my own life.

...If I never loved I never would have cried.
I am a rock,
I am an island~~~Simon And Garfunkel;I Am A Rock

The high-light of this week, was supposed to be Thursday, 18 August 2011. This would be the day that I was to appear at the second floor offices in the Buffalo General Hospital of neurosurgeon Dr. Robert J. Plunkett Jr. After a series of consultative visits, it was decided that I would do a trial placement of baclofen as a spinal injection. The trial was to see how my body would react to baclofen being placed directly into my spine, instead of being taken orally. MEDTRONICS manufactures a hockey-puck sized PUMP, which is surgically placed in the lower side of the abdomen and has a tube that sends small doses of baclofen into your nervous system through the lower spinal injection area. Before we were going to go through all of this surgical machinations, the Doctor wanted to see how I reacted to a needle-injected dosage of baclofen, on a trail basis, where he and his assistant Dr Susan Bennett could observe my reaction to this trial injection. This injection and subsequent observation, was to take place throughout the late-morning and into the afternoon of Thursday. They felt confident that this window of observation would give them a pretty good understanding if I was a 'good-candidate' for this baclofen-pump.

The objective of this course-of-action, the placing of this pump internally, was to see if this muscle-relaxant-agent, baclofen, would aid in, at least partially correcting the acute twisting inward of my two feet when I would, with the aid of my reciprocal walker, assume the erect position, and attempt to ambulate. In the process, my two feet currently twist excruciatingly inward, to the point where the left foot, would continue the twisting, and almost point toward the back.

The concern?? Baclofen is not a drug for everybody. It is a muscle-relaxant. For some people, apparently it works on the targeted area, without any after-effects on the person that is taking the drug. For me, the case is different. I have a history with baclofen, and it isn't a user-friendly one. Early-on in the medical profession's effort to try to help me better manage some of the pain that accompanies this spastic paraplegia that I am dealing with, Dr Carolyn Warner of the MDA Clinic, then headquartered at the ECMC, prescribed baclofen for me. This, of course, would be taken orally. It didn't work because I was plagued with side-effects. I was constantly groggy. It affected me immediately at work. Operating machinery and tow-motors was a constant challenge. I did not want to hurt or injure myself or anybody else, but I didn't want to reveal to management that I was incapable of doing my work, either. Besides the grogginess, my legs just felt like mush. I didn't have my canes yet, so my footing was always wobbly. Needless to say, we had to make a change on that medication, in a hurry. We shifted from baclofen, over to zanoflex. I have been using zanoflex---ever since. It does have a drowsiness effect to it, but not as drastic. I take the zanoflex at night, so I don't have to contend with the downsides of the drowsiness. It doesn't turn my legs to mush either. But then again, whatever spasticity it may be addressing---is nominal, at best.

Which, in turn, brings us back to baclofen---and the baclofen-pump. To start with, MEDTRONICS is only manufacturing a baclofen-pump. There is no zanofelx-pump on the market. The baclofen-pump held out the promise of spasticity relief, with no side-effects because of the more measured and direct application. Always trying to see the world in a better light, as seeing the glass half-full, and prayerfully, that this just may give me a better-day, I agreed to the trial. To illustrate how confident I thought all of this was going to work out, when my brother Victor asked me, subsequent to this ordeal, why he did not know anything about this, I simply replied---"Vic, I had full confidence that all of this would go picture-perfect; that there would be no need to worry or alarm anybody."

It is now late-morning of Thursday, and Doctor Plunkett, via needle, injects the baclofen into the spine. Again, by not taking this orally, it is supposed to bypass my brain area so I am not suppose to sustain the after-effects as in my early experiences with the drug. After a one-half-hour recovery period, Doctor Bennett wants me to attempt my first test. It pretty much goes-off, without a hitch. I have to get off the gurney and get myself onto my scooter that she has now wheeled near me. This is a good test, because even as there is economy-of-movement in the maneuver to slipping myself into my scooter, there is one KEY element that insists that I still have enough muscle strength to pull off the task. At one point I HAVE to get the right feet elevated the three inches needed to get the right-foot onto the floor-board so I can ease myself into the sitting position. So-far; so good. We do a couple more 'tests' with the reciprocating walker, then the Doctors tell Donna & I to take a little break, and to go down to the lobby-area for a snack. It is at this point, and I did not want to send up a flare yet so I did not mention this to Donna. But while I was waiting for Donna to return with the snacks, I was reading my TIME magazine. As I am holding the TIME, reading it, I begin to notice my hands wanting to let the magazine go; that I had to make a concerted effort to hold onto the magazine. I thought: hmmm, you haven't really eaten yet--you are hungry---you will be fine once you get some energy restoration, through food intake. After this, we head back to the second-floor offices for more strength-test assessments, and more evaluation on how well I am doing with reciprocal walker manipulation, and reciprocal walker-and-scooter transitions. Before I do that, I decide I am going to go to the restroom. I receive my first two yellow-card warnings that this may not end up going as planned. The first is the struggle to alight the scooter, drop-my-draws, and get myself onto the commode. I never had to struggle like this, with the transitions, to effect this everyday-function. The second yellow-card is the voiding, itself. I certainly 'feel' the urgency to 'go'. But very little is happening. Getting myself out of the rest-room is an equally concerning struggle. I did mention these developments to Dr Bennett. She was still cautiously optimistic. We went through more strength-tests, and more transition tests with my mobility equipment. A more visible degree of effort and out-right struggle was beginning to manifest itself.

After breaking for lunch, a test-review-meeting was set up to include both Drs. Bennett and Plunkett. It was after the lunch break, that I got my first hint I was IN-TROUBLE. I again went to the restroom because I still had this sense of urgency. The struggles to effect this function were more acute than the last time, while the voiding was still sluggish. The red-flag-semaphore??? I had to call-out to have Donna come into the rest-room and assist getting myself redressed, before exiting.

By 15:00PM, I can't even transition the mobility equipment any more. And I am scoring 'zeros' on my ability to lift my legs, while sitting, or moving them laterally. At this point Dr Plunkett, has his resident, Dr Berg, come into the office to start the admission process.

I started crying. I failed; I simply failed. I had the highest expectations, and I was embarrassed that I was not better than the medicine.

You want to talk about a 'life-style' alteration, I was about to get put into an environment radically different from the sweet, sweet, nobleness of home. When I am in my home, upstairs at bedtime, and I am now removed of my footwear, if I have to get anywhere, I simply crawl, to my objective. Not in the hospital. This means I cannot get to the restroom. As a consequence, I am attached to a catheter for the first time in my life. The afternoon nurse, Susan Cipolla, has excellent bed-side manners, and is very amiable in getting me to feel as comfortable as possible, with the set of circumstances I now find myself having to accept.

The experience was physically, emotionally, and mentally draining. And I think Susan readily recognized how disillusioned my disposition revealed. On the one hand, there was the REAL possibility of correcting SOME of the twisting inwardness of my two feet when I would try to ambulate with my reciprocating walker. On the other hand, I had become so literally drained of ALL vestiges of strength, that I feared my body may have morphed into a perpetually catatonic, wet-noodle state. The spastic paraplegia has involved me enough, already. I certainly did not want to be reduced to a totally bed-ridden handicap person.

After she 'registered' me, and set up the catheter, she then placed these 'wraps' around my legs that, once activated by a bed-side machine, were supposed to 'massage' my lower-legs. While I truly gave these the benefit-of-the-doubt, as I was heading into the evening, where I had a two-hour phone conversation with my brother Dominic, and then a brief good-night conversation with Donna, I decided I was just going to have to speak-up to the night-nurse, Kara. By now it was 23:00PM. And these 'wraps' were excruciating. If they were supposed to massage; they weren't. The only feeling my legs now had, was total pain. I had been thinking---Lou, it is not likely you are going to sleep anyway, because you are so anxious about all that has unfolded already. If you don't ask for these to be removed, they are going to be amputating your legs, Friday. Kara admitted that these leg-massagers get a mixed-review. She was very willing to remove them. While I still could not move any part of my legs, I was relieved that the pain was dissipating.

As Thursday was now becoming Friday, I would fade in and out of sleep. I never fully fell into a continued sleep because in the middle of the night, even at Buffalo General Hospital, there is always some type of bells & whistles going off. It is 01:20AM and the older gentleman in the bed next to me is having a rough-go-of-it. His moaning wakes me up. Great!! His TV is still on. I know he can't be watching it---it is an infomercial, selling vacuum cleaners!! I call over to him---no response. Subsequently, I red-lighted Kara into the room, and she obliges my request, and turns off Ocie's television.

As It is now progressing into the early morning hours I still had no control over my legs. The upper body was starting to gain some of my strength back, but below the hips; dead-to-right---no strength or ability to move at all.

I wanted to keep an open-mind to the possibility of a legitimate remedy, so I took a chance on this trial. They cautioned that if it didn't go to plan, the doctor would admit me for 'the-night', for observation. "Easy for 'you' to say!!" For a person as impaired as I am, functioning in an 'away' stadium, took away ALL of my logistical 'props' that help to get me through each day.

As daylight was starting to usher in the dawn of a Good Friday, I was going to do whatever I had to, to get out-of-Dodge. Even as I may have been less than Lou Marconi, I was going to do whatever I had to, to convince the Doctor, and his interns, that I was good enough to get released. I wasn't staying there, another day. I still felt a light-headedness, but I wasn't going to admit it. I figured if I could demonstrate the ability to get my boots on, by myself, then ambulate with the walker to the bathroom to void, and then get back to the bed, they would draw-up the paperwork to release me. In doing so, the physical therapist thought I 'looked' good, so he said he would draw up the release papers. He then drew the curtains closed to allow me to sponge-bath and dress myself. Dressing was a challenge because their bedroom surroundings in the hospital do not possess all of the 'props' that exist on my side of the bed at home, which allows me to cheat mother-nature and dress on my own. As Friday is now moving along into the afternoon, I am able to call Donna from her work assignment location in North Buffalo, to now come and pick me up. I was able to load the scooter into the van while the releasing nurse watched. I was then able to reciprocal-walker myself to the driver's door where I was capable of 'lifting' myself into my van. Finally, I was now comfortably at home, in the confines of 38 Kenwood Rd.

I must say that I am grateful. By the Grace of God, the prayers and thoughts, on my behalf, have been answered. As of this writing, I am feeling very good; thank you very much!!

A special thank-you goes out to Chaplain Deacon Norm. A Roman Catholic himself, just before leaving, we prayed together, and he then gave me The Holy Eucharist. And I am not lying. The loneliness that had so thoroughly been haunting me up to this point of Friday while still at the hospital---had been lifted from me. My heart, my soul, and my inspiration, had once again, lifted me from the disillusionment that had befallen me.

Baclofen; Beelzebub.
--{-=@
Hickok
The Promise

Friday, August 12, 2011

I'm releasing you; I'm letting you go...

Whether I shall turn out to be the hero of my own life, or whether that station will be held by anybody else, these pages must show...(the opening lines of David Copperfield as written by Charles Dickens;inspired by MTM). Or at least this ACCOUNT will, perhaps, have a reflection on whether I'm going to be the hero in my own life.

And all I can taste is this moment
And all I can breathe is your life
Cause sooner or later it's over
I just don't want to miss you tonight~~~IRIS; The Goo-Goo Dolls

When, in the course of human events, it becomes necessary for one people to dissolve the political bands which have connected them with another, and to assume among the powers of the earth, the separate and equal station to which the laws of nature and of nature's God entitle them, a decent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation.

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable rights, that among these are life, liberty and the pursuit of happiness.


The aforementioned is the opening remarks to Our Declaration of Independence. The relevance!?!? A metaphor for life. And even as a million thoughts are racing through the mind to essay this journal, the time, in our lifetime, continues to roll along.

Where does one start!?!? I suppose the best place to start would be at the very very beginning. This way one would be able to take all of the corrective actions necessary so that the course of your history through life, would be made picture-perfect. Alas, I am not going to be granted that privilege. So where do we go from here??

After my birthday, the next major event on my calendar would be our anniversary. This would be on Tuesday, 9 August, 2011. This would be our 36th Wedding Anniversary. Along with the two years of courting, Donna and I have a 38 year history of being together. Like so many relationships, ours was not picture-perfect. But by-and-large, I thought, for the most part, we were getting over the hurdles, and the equity of the years together would redeem itself in a togetherness that would stand the test of time. Instead, the rigors of the hurdles were only separating us. Even as I thought I was aiding in overtaking the subsequent hurdles, Donna's mind-set was beginning to take on the desire to not be in this struggle at all, anymore. The harder I tried to make things better, the more she was inclined to be like the tortoise and retreat deeper and deeper inside her shell. These last few years, in particular, have been difficult for the both of us; in responding toward each other, as well as other family members. The strain was evident; even the kids were seeing it. It was getting to the point where Philip outwardly expressed to me his reluctance to even want to come over to the house, anymore.

With this as the vale that has been draped across our relationship for some time now, I suspected our 36th Wedding Anniversary was going to be anything but festive. I had such a feeling even at the onset of Tuesday, 9 August 2011, because there was no inkling of any fanfare in the air, whatsoever. In the past, there always was. It would usually start with an exchange of Cards. This was something that was very important to Donna. And to be honest, it was a means of expression that I very early on had learned to appreciate as a way of putting emphasis on the desired effect I were trying to impart. There had been some talk, in the previous week of cashing in on a HUTCH'S Restaurant gift-certificate as a way of at least spending some time together in a public place and that maybe through an experience like this, some redemptive qualities might surface. My thought was that I would make one last effort at salvation before I would boldly initiate a life-changing decision.

The gloom of the day was only exacerbated by a lengthy conversation that did transpire in the late afternoon. The gloom, evolved into doom. The summation of what was said translated to more bitterness, more angst, and more recoiling from any gesture I may have attempted at reconciliation. The denouement; she had disclosed that while she had bought me some 'gifts', she had not gotten me a Card. She added that there were none that conveyed her feelings. I placed the two enveloped-cards that I had gotten, on her pillow as I was getting up to conclude the meeting in the bedroom. As I passed her I said that I will leave the cards here. I added that 'you' can do with them what you want. You can read them when you want, you can put them away with the others in the keepsake, or just plain place them in Andrew's shredder. Later that Tuesday evening, during a subdued supper together at the kitchen table, Donna did disclose that she had read the cards, and that "they were nice."

Thirty-eight years of history. The reason; children. The season; nurturing & maintenance. Lifetime; the time-line of this 'life'.

I spent all day of Wednesday 10 August, thinking about everything; I mean everything. The angst, the avoidance, the tension, the bitterness, the possibilities. It is obvious neither one of us is happy. Lou, I thought, just be the man you ought to be, and just do what needs to be done. There is no 'eternity'. This 'life' is over.

When in the course of humanity; in the course of a relationship, it becomes necessary for a couple to remove the bonds that have held them together...a decency to the respect of each others wholesomeness and disposition, that an appropriate course of action should be encouraged, pursued, and effected. I hold that such truths are self-evident; that we both have equal expression in our relationship, and with the sanctity of Our Creator, we both were granted with certain unalienable rights, that among these are life, liberty and the pursuit of happiness.

Life~~~in the sharing, there is no life---only shunning.
Liberty~~~in making choices; they are done unilaterally. There is an inherent vastness of the loneliness in such an experience.
The pursuit of happiness. Neither one of us---is happy. I am at my best when I am happy. And by the same token Donna is at her best, when she is happy.

Late Thursday afternoon of 11 AUGUST, 2011, I asked Donna to join me in the TV room. I knew we would have some 'quiet' time, because Erica was still running some errands in preparation for the evening going-away dinner. And Andrew, and Nicole were still at their respective workplaces.

I wanted to make sure that all of this would maintain as positive an intonation as possible. I didn't want any bitterness, or anything that would leave a sour taste in anybody's mouth. I mentioned to Donna that I want you happy; that you deserve to be happy, and that you are at your best when you are happy. To that, I added; just as I feel Donna, that I am at my best when I am happy. I can tell, I went on, that this just is not working any more. You are sad, you are bitter, and the harder I try, the more you draw into the tortoise shell of yours. I added, to throw some humor into the serious atmosphere, that you are so deep in that shell, you are not even two-rooms, or two-floors removed anymore!! She smiled. For the first time, in a long time, I felt that maybe we were getting somewhere, So I continued. I want you happy. I know you have many years yet and I know the importance of having this time and your experiences, shared.

Toward this end, Donna, I am releasing you, I am letting you go.
You are permitted to go and pursue what you feel is important and desirable to be shared in your life. Take your time; make sure your choice, or choices are right ones, but in the mean time, you can still consider this your home. But I am letting you go; I reiterated again. You have no obligation to me at all. I, of course, reminded her that we have immediate-family, and extended-family, that is going to have to come to terms with the sticker-shock, so be somewhat low-key as you are pursing your interests. Whatever unfolds, we will take it as it comes; an open marriage. The door is opened to Donna, and she was very very appreciative, and openly expressed her happiness to me. She expressed thank-yous a couple of times throughout my comments, and kissed my hand as well. She seemed genuinely relieved of what she felt entrapped in, a form of bondage if you will. I would go so far as to say that she was elated at being given the new lease on life. She actually seemed friendlier at Erica's going-back-to-college dinner-party the Family enjoyed that same Thursday evening at Amici's Restaurant. Donna sat next to me, and was refreshingly as her former self, carrying on lively and engaging conversations---with me. Of course, the bitter pill for me personally, was crawling into our marriage-bed at the end of the night, knowing that this new world I had given to Donna, was going to still leave me alone, on my side of the bed.

With the open-marriage, there is no doubt that Donna will seek to explore, and travel.
Along the way, I suspect she will find out two things. She will find what she is looking for. And along the way, I am sure she will find out that I wasn't as much the antagonist as she may have thought.

Where am I in all this?!?!? Considering that I am even able to sort through, and articulate this much, in the stillness of the eye of the hurricane, is mind-boggling. This is being formulated just days in the wake of when all of this had just transpired. Obviously, this will take some time to get a grip on.

Which is probably just as well, because I'm going to have to figure my course-of-action for the remainder of my lifetime, too.

...work still in progress
--{-=@
Hickok
The Promise