July 6, 2006

10 pm on the 8th: I edited this entry just a bit but not as much as I’d like. See next paragraph.

10 am on the 8th: I am behind again, so this is going up on the blog and out in the email unedited. If I get time, I will come back and spruce it up on the blog, so you may want to check the blog later and see if this paragraph has been removed, meaning I’ve edited the blog entry. If I don't get time to revise it, forgive all typos, awkward sentences, etc.– I warn you, it reads pretty rough (at least, to me).

I got the other picture of Gary from the nurse, so scroll down for it -- it appears after this entry, and is, I think, a particularly good picture. (If you're getting this by email, you will have to go to the blog for the picture at http://drpeg2003.blogspot.com/ )

Since I had to be at Shepherd at 8, I’ll let you guess how well I slept last night (even though this time I had added in a wake-up call request from the front desk to my three alarm clocks). We were to do a “wet run,” where Gary took a shower with my aid, the PT and OT supposedly only observing. The therapists started out by throwing us (or at least, me) a curve ball – last time I’d hoyered him from his bed into his chair, whereas this time they wanted me to aid him in a depression transfer from his bed to his chair. This was a harder transfer than those between his chair and the exercise mat I’d been doing with him, plus it meant that he had to get himself sitting upright in the bed (with my help), which the two of us had never done together, instead of just my getting the net under him as he laid in bed (by him rolling from one side to the other) and hooking him to the hoyer.

So we winged our way through it. I helped him roll to his side in the bed, took his wound dressing off, and then I positioned his wheelchair next to the bed where I thought it should go but asking him if that was where he thought it should be. After we were satisfied with its position, I got his legs off the bed and he pushed himself upright. Then he took little depression hops along the bed, me with my hands on his ribcage for balance, to get himself in position for the transfer. The PT reminded us to put his shoes on (he should never transfer without them – he can’t use his legs and feet for support, of course, but he uses his feet as pivots, and thus his weight is put on them). I don’t think she needed to do that, though, because the next step was to position his feet on the floor and I’m sure I would have noticed then that he didn’t have his shoes on. But she also caught that we hadn’t checked that the bed was in a locked position, and I started to wonder if we were going to “pass” this time.

Though generally I prefer to help with the transfer from behind, it seemed to me that in this case helping from the front might be easier; the PT got behind him, just in case. Because the bed was higher that the chair, at least this direction would be the easier one to start with.

We did the transfer, which went fine except I got knocked in the glasses (as I mentioned in a previous entry, when I help from in front, I feel I am really too close to his body, on account of my short arms). We then went to the bathroom, and he maneuvered into the shower. After several false starts, he realized he should back into the shower instead of trying to get in position next to the shower bench from a direct approach.

Next we prepared for a transfer to the shower bench. I could do this one from behind and it went smoothly. I moved the chair out of the way, took his shoes off (though doing that himself is one of his therapy goals), and then he washed himself. Fortunately this time I had worn shorts and had taken my socks and shoes off, as he still got a little wild with the shower head ;-) (he did miss the therapists this time). I soaped his lower legs and feet, and then he rinsed off and dried, me doing his lower legs and feet.

I got his shoes back on, moved the chair over, and we prepared for the transfer back. That also went smoothly. The therapists commented how impressed they’d been his transfers lately, that it seemed that one day things had just clicked for him and he’d been doing so much better. He said it was because he’d watched me do one and had picked up tips from that :-). They responded that his transfers were awesome, that he them like a forty-year-old, that it was rare for someone on the “senior program” to do transfers as well as he did. (Of course all this praise confused me a little bit, as he isn’t doing the transfers entirely on his own yet, but maybe they meant it for this stage of his rehab).

The therapists also commented that they liked how we constantly communicated with each other, him keeping up a running commentary of what he was up to (though I think part of that was just talking to himself – I don’t think it was really necessary for me to hear him say, “Now I’m going to wash myself”) and me letting him know what my status was (though I made my comments mostly out of the irrational fear that he would do something I wasn’t prepared for; for example, “if you’re about to make the transfer let me point out that I don’t have my hands under your butt yet” :-))

Next we went back to his room and he put his shirt on. Then we had to do a transfer back into bed, since I needed to put a new dressing on his wound. This transfer was a hard one – uphill and onto a soft surface. He didn’t do a great one (after all that praise), not making it the entire way and ending up with part of a butt cheek on the wheel – fortunately not the part with his skin flap. I worried again that this meant we hadn’t passed. He did another “hop” with me aiding and got on the bed. I then started to change his dressing. The PT left for her next patient, the OT told us she would check back in a little while and if we were ready she would watch us do another transfer from bed to chair. Before leaving, she again told Gary how well he was doing (I wondered if the psychologist told everyone we needed more praise) and asked when his accident had been. He told her April 14th, and she said something along the lines of “Look how far you’ve come.” Then she mused that he’d had that accident nearly three months ago, a quarter of a year. It was probably unfortunate that she put it that way. Gary said, “And I haven’t been home in all that time,” which set him off crying. It took me a moment to realize that had happened, because I was concentrating on putting some medicine on his wound. I went over to the other side of the bed and gave a needed long hug; meanwhile the OT stepped out of the room.

When he seemed okay, I finished dressing the wound and then got his pants up over his knees and his binder around him. The OT had said he should get his pants on the rest of the way, so he essentially did so with a lot of rolling from side-to-side; I helped him a little at the end, though, because I was afraid he was going to pull the gauze bandage off his wound. The OT hadn’t returned yet, so we decided to get him upright again, in preparation for a transfer. The OT walked in just at that moment, and so watched us go through it again. She then said we could now do transfers out of bed under a nurse’s supervision, instead of using the hoyer. She made to leave for her next appointment. I asked her if we’d passed the wet run, and she said we’d done great (so I guess that meant “yes”).

We were a little late getting to the gym for his session with the tech. I helped him transfer to the mat, he got himself up on it, and then the tech had him do “the terrible threes” – lying on his stomach, lifting his arms to the rear, to the side, and to the front, with weights. Actually, because of his arthritis and lack of shoulder flexibility, he can’t do the ones to the front (“superman lifts”) so she had him substitute fifteen pushups.

Before he was done with that I had to leave for my first family training lecture of the day. It was to be the “Therapeutic Recreation Lecture,” and I was not looking forward to it, having suffered through three of them (I’ve mentioned that these lectures were the only ones I haven’t thought very useful). I found out the same material was to be covered, and I tried to get out of it, telling the lecturer (not the same one who’d I’d heard before) that I’d gone to all three rec lectures offered to the patients. But since that hadn’t been documented, it didn’t count.

But, it turned out not to be bad at all, and in fact the material actually seemed far more useful this time. In forty-five minutes she covered the three hours of material the other person had done – the difference was she didn’t waste time (and thus irritate me ;-)) by trying to get the audience to guess things that it was highly unlikely we’d know. Mostly. She did do a little bit of that, so I confess I cheated and to spare myself from having to sit there any longer than necessary I answered some of the questions based on what I’d picked up at the other lectures. For some reason this impressed her, though I’d told her that I’d attended these lectures before. One statistic she gave that I think was new to me was that 60-80% of those with an SCI never return to work.

After that class I went to Gary’s room to eat lunch. I looked at his schedule and saw he was doing a community IC with his OT. He came back, and I asked how it’d gone. He said he had to do it again with her next week, thus indirectly answering my question. I asked him why, and he said he hadn’t done it smoothly enough for her – this was because he’d do it slightly differently in a public facility than he would at home, and he hadn’t been practicing the “public version.”

I had more family training lectures in the afternoon, so missed Gary’s stuff. He told me that the PT had him practicing transfers to and from various surfaces, including a regular (i.e. non-hospital) bed in the gym. He also had a visitor, Tony Crumpton, from the Crisis Center where Gary has volunteered for decades (I can’t remember exactly how long, sorry). Tony knew of the blog, said he heard it from Doug, another crisis center person – we’re not sure how Doug knew of it!

Gary also had a class with the sports rec therapist, who showed him the various pieces of equipment in the ProMotion Gym. I had told him to be sure to find out about the NuStep, which the “Been There, Done That” guy had recommended – where he could strap his feet onto pedals and move them by using the arm pedals, thus giving some exercise to the leg muscles. Turns out the PT would have to test Gary to make sure that was something he should do (I think the concern is with how much pressure it would put on his flap).

In the meantime, I next went to my required “Wheelchair Maintenance and Repair” class. After twenty minutes of a bunch of us sitting around waiting for a lecturer, I left to find someone who could find the lecturer for us. She was located, and came about ten minutes later, apologizing for forgetting about us. She then rushed through the hour lecture in forty-five minutes. Between being tired from lack of sleep and the morning’s activities and not being mechanically minded, all I can say is that after Gary has this class, he’d better have a firmer understanding than I do of what exactly he is supposed to do, and when, in order to maintain his wheelchair. Of course, I will most likely attend that class with him anyway, so I can pick more information up the second time.

Because that person was late, we had no break before the “Emotional Adjustment” lecture (I remarked, not entirely jokingly, to Gary’s roommate’s wife, who was also in attendance, that this lecture was coming weeks – or months – later than it should have). The lecturer was one of the counselors who’d led the counseling classes that I’d attended with Gary – classes which I’d also thought fairly useless (honest, those and the rec ones were the only classes I’ve felt that way about) – but again I was pleasantly surprised.

The first forty-five minutes were on sexuality after an SCI. Three people got up and left immediately. I could understand why two children did so, but I didn’t quite understand why this woman who looked in her thirties and was the daughter of a patient here, also felt like she had to leave; her mother explained it was because the daughter couldn’t handle thinking of her parents “in that way,” which struck me funny, though maybe I would have felt the same way in her situation.

Anyway, this seemed to be pretty much the same lecture Gary had told me about, though it also covered the physical consequences of an SCI on female sexuality, which were far less complex (reminded me of that old joke, by Rita Rudner, I believe, that men envy women because women can do it when they’re dead – excuse my seeming insensitivity).

If you don’t want a sex lecture, you may skip ahead a few paragraphs ;-)

The lecturer explained that in men, the psychological reasons for an erection (seeing something arousing), which depend on the brain-spinal cord connection, are affected, but the reflex reasons for an erection (full bladder in the morning, etc.) were often unchanged and can possibly be made use of – friction may be all that is needed. But if it’s not enough, help comes in the form of medications, vacuum pumps, and injections (there are also the implants, but these are discouraged because they could lead to skin sores – from the constant pressure of sitting on a hard object that would be surgically placed in the scrotum as part of the implant). If children are desired then one can go to an urologist and make use of one of a couple techniques they can help with to collect sperm and implant it.

In terms of orgasm, if one has a complete spinal injury, one will probably not have an orgasm, though apparently some may feel some sense of release in some other part of the body where sensation still exists.

The question might naturally come up, why would someone want to have sex when they can’t feel it (outside of the desire to be a parent)? For some, it’s not going to be important; for others it is very important for their self-esteem; for others there is the fear factor (“my partner is going to leave me and find someone else if I can no longer satisfy them this way”). In fact, the first reason those with an SCI usually give for wanting to have sex is, “for their partner.” But if this is the only motivating reason, the lecturer said, it’s not one that is likely going to be sustained – if they’re not getting any enjoyment out of the act, then their partner is going to pick up on that and it won’t be enjoyable for them either.

So how can it be made more enjoyable for the injured person? Well, certainly not by concentrating on what they can no longer feel. They and their partner need to think about what is fun in the areas they can feel in – discover new erogenous zones. They need to become creative. The lecturer mentioned that it is not uncommon for the injured person to have about an inch-wide band around the level of injury that becomes more sensitive, and he suggested a feather could be used on that area (I told the lecturer that my husband found that area hypersensitive and didn’t like to be touched there, so I would save the feather for the times I wanted to torture him ;-)). He said it was common for couples to engage in more oral sex. He also told the story about one guy who had a harness hung from the ceiling. (I thought Joe would really love that if we made such a request (along with the mirror). Gary’s comment was, “Boy, the guy really wanted to be on top, didn’t he?”) Evidently the guy liked how in this way his wife could move him above her and recreate the sex experience.

The lecturer brought up various other concerns, like one doesn’t have to be afraid of hurting the other person physically unless a doctor has said so. And he covered the fear of hurting them psychologically too. When Gary first told me he had a class on male sexuality after an SCI, I evidently had a common reaction: why remind them of something else they can no longer do? Won’t this just make them feel bad? The lecturer said that avoiding physical intimacy because of that is actually experienced by the injured person as rejection, not the intended concern for their psychological well-being. Their confidence level automatically drops as a result of the SCI – they have physical limitations they never had before, they may no longer be a provider, etc. They need to realize that they are the same person they always were, and this is one more way that their partner will help provide the reassurance that they are. (The lecturer also mentioned that rehab programs like Shepherd’s also build confidence in those with SCI – with each achievement they make, with becoming as independent as they can, with taking as much control of the situation they can.)

The lecturer mentioned that in the sexual arena it would be useful as well to expand one’s definition of intimacy. He said he was going to be sexist and say that women think of intimacy as more broad than what happens in bed, and men (especially those with SCIs) need to do this too. It would be good, he said, for it to expand to snuggling while watching TV or in bed or to having a heart-to-heart conversation, and so forth.

After this part of the lecture, the counselor turned to the matter of emotional adjustment. He first asked us what this experience has been like for us. We brought up that at times it had been petrifying, overwhelming, a time of loss of hopes and dreams, a time of uncertainty. (But we all agreed that our loved one was still the same person to us.) The lecturer mentioned that some people felt it was better not to talk to others about the situation, but that talk was good – for getting things off one’s chest, for information, for emotional healing, for getting what one needed for oneself – whether that was practical help or emotional support – and for letting others know how things are, what is needed, what is going on.

The lecturer mentioned that often when patients go home, they and their families become isolated, and he went through strategies to avoid that. We don’t expect this to be a problem for us, because Gary will be getting right back into the thick of things and I’ll be returning to my normal routine as much as possible, and if we need help, there seem to be plenty of people offering to help us out.

One thing the lecturer said we caregivers need to do, as soon as possible, is to talk straightforwardly with our loved one about how we are doing (and I know I am guilty of not doing that, especially in the beginning days but even now, not telling Gary how tired I am sometimes, or how much pain I’m having, since I feel he has enough to cope with without burdening him with that; the lecturer claims that is a mistake, but I don’t think I can change that behavior. Besides, the focus of his admonition was in not letting the injured person burn you out by demanding too much from you, whereas Gary always tells me to leave and take care of myself (Gary’s roommate’s wife laughed when I said this in the class, saying she knew this was true because she can hear our conversations through the curtain; she told everyone that she had often wanted to swap her husband for mine. No way!)).

The lecturer then turned to the process of grief, which he defined as the process by which we encounter change/loss and deal with it to create a new normal. He said in his experience with those with SCIs, it takes one to five years to create such a new normal. He also said that in his experience there were three main “hard times” in this process.

First, when “reality first sets in” – when you and your loved one realize s/he is never going to be the way s/he was before the accident, that your lives are permanently changed (not to imply you both realize this at the same time).

Second, when you go home. You know how to live with the facts of the injury in a hospital situation, but not at home, doing it on your own (I have thought from the beginning going home would be the harder part for me, at least – here the hospital staff have been responsible for his care, especially at the beginning, but even now when I’m doing more of it, it’s not like living with it 24-7; but fortunately by the time we go home he’ll be even more independent, and that should keep improving). The lecturer said that adjusting to the home situation would be a trial-and-error process and would probably take about a year.

Third, about one-and-a-half years into the process. The anniversary of the accident comes and goes, and a few months later one realizes that one has gotten back just about all they’re ever going to get back. The permanence of the situation sets in. (He talked about a former patient at Shepherd who put it this way: “When I left Shepherd, I knew I wouldn’t walk. One and a half years later, I KNEW I wouldn’t walk.” )At this point one moves away from physical recovery to just moving along with life.

The lecturer then covered his version of the stages of grief, pointing out that each family member could be at a different stage, and that the stages weren’t necessarily linear or on a time-table, that you couldn’t say, “Okay, now I’m done with shock, what’s next?”

With that in mind, the first stage is shock, perhaps expressed as feeling like one is in a nightmare that one should wake up from (definitely the feeling that came over me a few times at the beginning, though not something that I was really stuck in), or one feels numb, or like one is watching the unfolding events like they were watching a movie (emotionally removed).

The second stage is “positive attitude”: “we’re going to beat this thing”; or, from others, “it’s going to be all right, no big deal, just put up a few ramps.” The lecturer pointed out this stage is a little short on reality. I don’t know if either of Gary or I really exhibited this stage. I don’t think I ever thought this was something we could beat – I just viewed it as something we could handle (that’s about as positive as I can get ;-)). And maybe the doctor thought we might have been exhibiting this type of attitude when we talked about Gary being capable of going back to work in the fall, but hey, we were right and he was wrong :-)

The lecturer said a positive attitude wasn’t necessarily a bad thing and asked us why we thought that might be the case. I said because it gives one hope. That was the answer he was looking for, and he said that hope was what got one through rehab and so forth. He pointed out that positive attitude could be viewed as kin to denial, which is just an emotional armor plating and can be useful, an emotional shock absorber, and can be a way to adjust to new conditions (one starts by saying their goal when they leave Shepherd is to walk; sometime later that becomes, well, maybe I can’t do that but by the time I leave, I’m going to be able to (fill in the blank); and maybe that readjusting of goals continues).

The key is, does the denial help one move forward or stop them (for example, a person telling the therapists that he doesn’t want to learn how to do transfers because he isn’t going to need to do them – he’s going to be able to walk by then).

The next stage is realistic thinking: this has happened, I don’t like it, but what do we have to do to deal with it. It’s a facing down of the situation and working with it. Maybe I’m kidding myself, but it seems to me that this is mostly how Gary and I have dealt with this situation. And as the lecturer pointed out, you don’t have to give up hope to have realistic thinking.

I don’t really know if I have hope as the lecturer seemed to define it. I don’t really expect Gary to ever walk again, for instance, and I don’t do what I do out of the hope that he someday will. Same for any other specific activity that his level of injury is said to preclude. But I think that what he is capable of is unknown by anyone, and I want him to develop whatever his potential is to the fullest by always challenging himself to exceed his current accomplishments.

The last stage, according to the lecturer, is accommodation, which happens down the line. This is when the injury doesn’t dominate – it’s part of one’s life but not all of it.

It’s interesting to me to look at these stages in light of my experience of CFS, to contrast my reaction to it with my reaction to this happening to Gary. I know I spent several years with shock coming and going (I had the disadvantage of coming down with a poorly understood illness and being undiagnosed for several years. It felt like a nightmare because I didn’t know what in hell was going on. Why couldn’t I function mentally or physically as I used to? Could this all be in my mind, even though I was doing all I could to live my life in the way I always had, yet couldn’t? Why couldn’t any of the doctors I was going to explain what was wrong? ) I also had the positive attitude thing. When my family doctor told me he suspected I had CFS but that people did recover from it, my attitude was that I had been more health-conscious than 99% of the population – ate right, exercised, etc., etc. I was going to beat this, be one of those that recovered in at most a couple years. (“‘Recovery’ rates for CFIDS are unclear. According to one of the few published studies, the probability of significant improvement was about 30% during the first five years of illness and 48% during the first 10 years. However, even "recovered" patients stated that they still had some CFIDS symptoms, and one-third had relapsed six months later.” – from http://www.cfids.org/about-cfids/research.asp ). I don’t know if I ever got far enough removed to ever have the realistic thinking stage. I kept hoping I would find something to make me better, and would try various things that seemed to me like they might help, and when they didn’t I would “give up” on them after years, or maybe just weeks, and simply live with the symptoms, until something else sparked my hope and I would try that. As I mentioned the thing that helped me most (as Gary will corroborate), the provocative neutralization shots I give myself daily, obtained from the Environmental Health Center in Dallas, was one of things I pursued as a result of hope being rekindled, but only a faint spark of it – I never really expected those shots to work, it was a “last resort” kind of thing.

And accommodation? I think that sneaked in just within the past few years, when the illness let up enough that I could engage in mental pursuits – first, reading with comprehension, then writing.

The last thing the lecturer covered was titled “Take Care of Yourself,” which he said was easy to say and hard to do. First, because it doesn’t feel right, it feels selfish; secondly, because other family members, including the patient, contribute to that; and thirdly because of guilt – not guilt that one was the cause of the injury, but that this has happened to someone one loves and one can’t do anything about it and so one goes overboard and sacrifices oneself for the other.

I know I have problems with overextending myself. As an example, putting Gary back to bed and turning him into position myself instead of letting the nurses do it when I am tired. Doing this for him may sound like a simple thing (well, maybe you know better because you’ve been reading the blog) but it involves using the hoyer or, now, helping him with a still-non-trivial transfer into a bed, then pulling him (by using the untucked sheet he lies on) to one side of the bed, helping him roll to one side then another so I can get his clothes and binder and t.e.d. hose off (and at this point he cannot be the one to remove his lower clothing), possibly changing his wound dressing, getting the pillows positioned under his bony parts correctly, making sure everything he’ll want or need in the hours I’m gone is in reach, etc.

But I don’t think I don’t always take care of myself as I should because of any of the reasons the lecturer gave. I don’t think I have any problem with being selfish ;-), and Gary isn’t demanding of me, and no relatives have given any indication they don’t think I’m doing all I could be doing for Gary – they’ve been nothing but full of praise. I thought it might be the third reason, but after reflection, I think that would still only explain a small part of this tendency to overdo. I think the reasons for it are as follows. I like learning what his rehab entails. I like being involved in it, and I am especially pleased when I come up with useful ideas. I like seeing his progress – or at least, his efforts – from day to day. So I attend almost all his classes – therapy or lecture – with him. I don’t have to be doing that, and in fact I know I’m a rarity among the caregivers for doing that (of course, more may have done that under other circumstances – when we first met with his therapists, they had said that caregivers were only allowed to attend the sessions the first few times, and then they couldn’t attend after that, the reasons given being that, firstly, the gym would be too crowded if everyone did that and secondly, because the patient needed to focus on their therapy without the distraction of the family member; since they never brought it up again, I simply acted as if I belonged there, and only one time was told I couldn’t do a class with Gary, that time a “substitute” therapist said I couldn’t come on their group-of-one push class (oh, and when I couldn’t go to his male sexuality class, for understandable reasons). The tech probably has wished I wasn’t there a few times when I contradicted what she was saying. But the only other words concerning the matter that have been said to me by the staff here have been along the lines of, “I’m glad you’re here.” Oops. That was another long parenthetical thought wasn’t it? Now, we need to return to the topic at hand ;-)). I do like taking over some of his personal care from the nurses just because I love him and it’s a way to show it (he has said a couple of times to me, “You should be a nurse,” and I say, “No way. Only to you. And the kitties.” Which is entirely true. I wouldn’t want to spend my time this way for anyone else). And there is some arrogance involved – more and more I feel I can do at least certain things for him better than his techs or nurses do (though I was a little discomfited when he told me he had told a tech that I wasn’t impressed with the way his skin nurse had dressed his wound one day; it was true, but I thought that might get me kicked out ;-)).

So I think the reason I sometimes overextend myself at the caregiving is mostly a mix of my empathy for his situation, which I have because of my experience of CFS, and the satisfaction I get from the activities. And there may be a tiny bit of martyr complex in me that is contributing to the overdoing as well. Could that be a reason for the blog? In small part (but just a small part ;-)) because I want you to read it and say, “Oh, what a nice person Peg is, see what she does for Gary”? It’s not simply a reportage of Gary’s rehab, after all (obviously! ;-)).

If you read the previous version of this entry, you may note that the above paragraph is the major change. I think the above is the more accurate reflection of current reality.

Well, back to that class! The others in the room who talked about having problems taking care of themselves all seemed to feel burdened by their injured loved one wanting them to do more for them than they felt up to, or more for them than they should. So the focus of the rest of the lecture was on that (show “tough love” – don’t do for the patient what they should be learning to do for themselves; or put your foot down – tell them you need to take time for yourself; or allow/get others to help – don’t be (or let the patient insist that you are) the only one who can do for them).

I stayed after the lecture and asked the guy whether he gave this same presentation on emotional adjustment to the patients (he certainly hadn’t in the three classes of his I’d attended, classes I thought were full of missed opportunities and largely wastes of time). He said he didn’t, but that he might go over some of the stuff with those he saw on an individual basis. I told him I thought he should go over it in a class with the patients, that I thought it would extremely helpful to them to hear it. He thanked me for the idea. Since I was on a roll and he hadn’t registered that I was trying to tell him how to do his job (notice that tendency in me? ;-)), I brought up how I had thought that he should be more directive in his classes, bringing up the instance where someone had expressed a statement of positive attitude/denial (“I’m not going to be one of those people in a chair for the rest of my life – I’m walking out of here’), and rather than pursue it, he had let the others in the room divert away from the topic by a discussion of gym equipment. He said he usually just waits and sees if anyone else is going to challenge the statements brought up, and if they don’t, he pretty much lets the participants take the conversation where they would. I said that in my (not-so-humble ;-)) opinion, it would have been better for him to be more directive. I told him that I had felt like saying to the person, “And what if you don’t walk out of here? How are you going to deal with that emotionally?” perhaps using my own experience of saying that I was going to be one of those who kicked this CFS thing in a couple years but it hadn’t happened. (I’m sure I could have dealt with my anger about that better had I been wiser). Maybe the person wouldn’t have wanted to hear that, just as maybe I would haven’t faced that if someone had said something similar to me in those beginning years, but maybe at some time in the future the person would have thought back on those words and realized there were choices to make about how to deal with the reality of the disability (I could be wrong, but the person seemed to be the type who would be in danger of getting caught up in anger about the situation they found themselves in, and in anger at the person who had caused the accident). Anyway, the lecturer thanked me for those thoughts too, said he would consider them as well. Maybe I should sneak into another one of his classes to see if he follows up on my instructions ;-)

I went back to Gary’s room, saw on his schedule he was in the ProMotion Gym, so went there and found him finishing up. We went back to his room and filled each other in on our day. I left, “did my thing” at the hotel, came back. Joe called and while they talked I stretched Gary instead of waiting for them to finish their conversation so he could help hold the poses – I was too tired to wait. I got him side-positioned and padded too, getting him to help when needed. I then discovered that by having him pushed a bit farther over in the bed than usual, I could squeeze in too, so I did that and it felt very nice to lay next to him for a short time. He soon finished the phone conversation, we had a little cuddle, and then I left. Tomorrow was to be another full day of family training :-p (that is the emoticon for someone sticking their tongue out).