Two Gems

I have often considered the similarities between my daughter Natalie and my mother. They are both blue-eyed brunettes and both had two older sisters and an older brother. (Mom also had an older half-brother.) They were both born during the 2^nd week of the month, and in a year ending with “8.” And of course I think they are both beautiful.

Anyway, years ago I mentioned to my mom that her father, Grandpa Farrer, seemed like a quiet man; he never said much to me. (He passed away when I was 13.) Her response to this seemingly benign observation surprised me. She said that it was likely due to his surprise that she could produce such remarkable children. I am not sure if she was trying to compliment me of if Grandpa was not too openly affectionate and praising to the apple of his eye. It was probably the former.

I have kept this thought in the back of my mind. I don’t think I’m on death’s door or anything, but often I tell Natalie how proud I am of her and how wonderful I think she is. She really is fantastic in every way. While I don’t believe that I have lofty or unrealistic expectations of her, I can’t see myself being surprised at any level of greatness she may attain or anything wondrous that she may accomplish. I’ve only known her for a quarter of the time that I have known her grandmother, but if she accomplishes even a fraction of what mom has, she will be a huge success.

Greetings!

I can’t believe it has been over seven months since I went to work. It seems like two years. Don’t get me wrong; I always preferred home to work, but I do miss it. I worked with so many wonderful people, friends in the truest sense.

I shouldn’t be surprised that after 15 years of playing a role, that it is an adjustment for Kara and I to have those roles overhauled so drastically. I was the provider. Kara says that I still am as we are receiving disability payments, but for me it was more than just getting money. It was me leaving home and working hard for 10-12 hours a day and then coming home. I find myself wondering if there isn’t something I could do. I mean, I’m not totally incapacitated, right? Part-time? Anything to help the family budget?

I’ve had no luck in the publishing arena yet; but what about something less elaborate? Could I work a half-shift in a day care facility? The vocal issues alone probably disqualify me from that. Shoe shine guy? I don’t see well enough. A security guard? One that gets to sit down and doesn’t need great vision? (Or never has to actually apprehend anyone?) I don’t think so. What do old folks do? Wal-Mart greeter? Perhaps, if I could have a stool and they didn’t mind if a lot of non-verbal greetings. I could go on, disqualifying every idea with one or more symptoms, but what is the point of that? Suffice it to say I’m trying to think of something. Anyway, until I figure something out, or get better, I’ll just continue to be a blogger!

Drinking the Kool-Aid

I’ve found that at times I don’t fully accept my limitations which results in a fall or utter exhaustion or something.  Much more common, however,  is the opposite. I catch myself, on occasion, “drinking the Kool-Aid.” By this I mean that at times, my knee-jerk response is “Oh, I probably better not do that” even if there is no good reason. Last summer, Ryan was invited to go wakeboarding on the local lake. I was invited to tag along. Owing to my illness, my first thought was “I can’t.” But I challenged myself -- What symptom would prevent me from riding in a boat? I couldn’t think of any, and I went and had a nice time.

It is hard to explain. Once Ryan said that he wished someone could play tennis with him. Sorry, that is a definite “no can do.” But wait, is it? While it is true that with my vision issues and leg weakness I cannot play very well, or for very long, there is no rule in the MS handbook saying that I can’t get out there and try. (I just made that up; I don’t think such a handbook exists.) Again, I went and we kind of played. It was frustrating, and I didn’t provide him any competition, but I was none the worse for going. It isn’t like pneumonia. I can’t spread it and resting doesn’t really help heal it. But could I fall or something and get hurt? Yeah, I guess, but the risk seems too low at present to become hermetical. And besides, if I am unwilling to take any risks, am I not accelerating the effect of the limitations? Who wants that?

The flip side of this is when I did something that I probably should not have done. A year and a half ago one of my home teaching families did an intra-ward move. The priesthood was called upon to help and I couldn’t bear the thought of not helping. I reasoned that I would just not carry heavy things and maybe look for opportunities to assemble and disassemble things. Maybe I could stay in the moving van and direct traffic or something. I tried to execute my plan, but as I sometimes do, I didn’t really know my own limits and I ended up with a pretty bad strain of the lower back. Maybe it would have been worth it if I did much to help, but I really didn’t. Bottom line is that I should have left moving to stronger backs and healthier legs.

Everything I am faced with first passes the binary filter of “can” or “can’t.” Thankfully, almost everything is still “can.” But there is a second test of “should/shouldn’t” where “shouldn’t” just means that the cost/risks outweigh the benefit. I’m still trying to figure out that balance. I think that I have been erring too much on the side of caution but I think I need to push myself a bit more.

Indispensability

While I was still working, I believed the phrase:

“No one is indispensable.”

It was a good reminder that as important as we may consider ourselves to be in the Company, we are indeed replaceable. I witnessed the departure of quite a few co-workers that I considered to be extremely talented in their field, only to see another replace them and the company as a whole seemed to move forward uninterrupted.

Last month my boss and co-workers were kind enough to all sign a birthday card for me. I was honestly surprised, and pleased. 9 of 15 signers mentioned that they miss my humor. The others didn’t cite specifics, but the point here is that no one said, “I miss your keen financial insight” or “No one can reconcile accounts quite like you.” (Perhaps they do feel this way, but no one was willing to write something that hokey!) Although I invested thousands of hours practicing and improving forecasting and spreadsheet abilities, that isn’t what is missed. The witty comments at staff meetings flowed effortlessly, and that is what they remember. Not because it was effortless, but because it made them smile and it was human. I suppose in that regard, everyone is indispensable in a way. I stand corrected.

Speech Therapy

I met with the speech therapist Friday. In my case it is more like voice therapy. I learned a lot, and got a lot of helpful advice, drills, and larynx stretching and relaxation techniques. She told me that whispering instead of talking was not helping. In fact, it could actually be hurting so I have to continually remind myself to talk, even if barely audible, instead of whispering.

I have seen some modest improvement already.  I think it going to be a slow, gradual process of relaxing the muscles and restoring vocal strength. I suppose that is what is implied in the word “therapy.”

Going through this has shown me that our voice is a blessing and a miracle that we take for granted every hour of every day. At least I did, and still do.

Strength

This afternoon after a home teaching appointment, a somewhat shy 8-year-old girl named Taylor wanted to tell Ryan something. My curiosity was piqued. She told him that in Primary Sharing Time that morning, Sister Jensen had commented that in every child's family, the dad was probably the strongest person. Natalie’s hand shot up and she said, “Not in my family; it is my brother Ryan.”

I was amused at Natalie’s candor and hoped that she didn’t derail Amy from her point too badly. Ryan is stronger than me, no question. He has been growing and lifting and wrestling and I have been weakened by this illness. Anyway, Ryan was atypically modest and told the girl that he didn’t think he was stronger than me.

Outside I told him that it was OK, I know that he is stronger than me. I’m OK with that. He said that if I hadn’t gotten MS, I would still be stronger. He can believe that if he wants to, but I doubt it.

When I was 16, one of my priesthood leaders was a son of a brick-layer. He told us once that the saddest day in his life was the day he realized he could lay brick faster than his father. I don’t recall passing my dad in physical strength, speed, or agility, but I probably did at some point. My paternal benchmarks were more set on things like intellect, patience, creativity and spirituality. I don’t know the feeling of surpassing him.

And to my great comfort, there are signs that my son also has some becnhmarks for his dad that are in areas other than brute strength!

First (and last?) Infusion

Tuesday I had my first Tysabri infusion. It went very well in that the nurse was good and I had no side effects. I feel no different than I did before. The thing about MS treatments, they don’t do anything to address present symptoms; they are designed to help lower the probability of an exacerbation in the future. But they might not. I guess it is better than nothing, but you actually have no way to know if it is helping.

The only problems I had during the visit were with check-in and check-out. We rode up in the elevator with an elderly couple, who were going to the same place we were. Of course we let them go first and even got the door for them. They seemed very kind, but at the window, man they were pokey. Apparently one of them was a new patient and I stood there for 18 minutes waiting to sign in (7 of those minutes were when Mrs. Pokey looked for her driver’s license.) Kara was seated and shot me two “incredulous” looks. I mean, I can understand a little slowness; I feel like an 80-year-old some days, but that was crazy slow.

The infusion center is at my neurologist’s office so I was familiar with the office. When I went to check out (2 ½ hours later) there was a back-up at the check-out desk. I’d never seen that before at this office. I was 6^th in line so I took a seat. After a few minutes of no movement I looked up and guess who was checking out? That is right. And they were there for a doctor’s visit, not a two-hour infusion. Why were they still there? Wait, dumb question. The desk was trying to schedule a follow-up appointment and had to repeat the information several (like six) times. I know it is insensitive to poke fun at old people, especially in a neurologist’s office. I was in no hurry nor really bothered. I was just was humored by it. At least I knew the date to avoid for my follow-up!

Unfortunately, the worst part of the day was ahead. When checking out I got ready to make my co-payment - $20, maybe $25.

“OK Mr. Hixon, that will be $1,040.”

I said nothing. I was in a stupor. Dollars? Seeing my look, she said, “Wait, it won’t be that much. The procedure is $5,200, but you only have to pay 20% of the “allowable” amount which is somewhere around $2,500. Oh, yeah, that is a lot better. Only $500. So lemme see, if I move my family to a pup tent and we hitchhike, and rob banks, maybe we can afford this. C’mon. It isn’t worth that, for my budget or anyone’s. Remember, you have no way of knowing if the treatment is even helping. The drug maker’s marginal cost is what? Eighteen cents?

I know my blog audience includes people that are rich, and people that are generous, or both, but I'm not soliciting, or accepting donations. I put the amounts only to give you a sense of either how jaw-dropping it was (or how cheap I am.) If Bill Gates told me he would pay for it, I still wouldn’t do it, not at $500 a pop. That is crazy. Let's see: An experimental treatment for me each month or feed Ghana? Hmmmm. I’m hoping that there is still some miscommunication within the complex insurance-reimbursement labyrinth but if not, I won’t continue the monthly therapy. It is that simple. I can to back to the shots for $35 a month.