As my wife and I bought a house, or rather a spot of earth and a promise to build our house, I could not help thinking how ordinary our life is.We have children who have gone through so much, but still much of their childhood is the same as every other kids.We may not do everything on the same time line as other families, but I believe we have as much joy and love.In the end, when I think about what my wife and I do for our children, I think maybe that is what it’s all about, giving them a chance for a life of chances to learn, feel and fail like everyone else.
With all the trials of healthcare our family deals, most of living is still dealing with the mundane.Taxes are done, the house is chosen, and we can continue the everyday task of learning a little more than we knew yesterday.The chess peaces are in place, and now we can continue to learn the beautiful game of chess as I try to teach my kids the way my grandpa taught me.It is just like life.We start by learning how the little things work, learning the strength of the pawns.There is plenty of time to learn the importance of moving the less ordinary peaces so they can take advantage of opportunity and protect all the smaller parts of our lives.
Backyard Swings 2014
Our kids have the same fears of moving so many other kids have.It will mean a new school and some new neighbors.It will mean leaving the backyard they love with a swing set they have played on for hours at a time.Fears and anxieties of moving abound, and unfortunately they will remain until after our move, hopefully in September.I hope that they will realize many of their pawns are the same pawns, and the new ones move just like the old.
K seems to have taken the whole moving idea to heart. She is even into rearranging doctor’s offices while she waits.
Some days and weeks are just ordinary from the anxiety of doing the taxes to the frustrations of trying to get children to sleep through the night.I am told there are children who sleep, and it is the midnight wakeful moments that are the exceptions for them.Still, as we struggle through deprived weeks, I tell myself each bleary-eyed morning, “There are millions of families who wish they got your sleep or could stop their morning for a second coffee to keep them alert.This tired feeling is normal, even down right ‘ordinary.’“So what if coffee and soda are more than mere pawns in my defense?
Some times, I have to remind myself, the strongest part of the family life is not built upon dealing with the extraordinary.Life is made up of the everyday doings from walking the dogs to reading with our kids.Every now and then, somebody asks me, “Isn’t it hard to take care of medically fragile children?”When they do, I tell the truth.The hardest parts of raising our kids have nothing to do with their medical issues.The hardest parts are the same for every parent to whom I have talked.Much like in chess a good defense is made mostly from the pawns, the good family life seems to be made with the every day deeds, overcoming the every day, ordinary challenges…like learning how to change a diaper.
Every kid needs to feel like those whom they are close to go through the same things they do. What is more ordinary than a kid trying to take care of their friends for whom they are responsible?
K looks out the front door despite being legally blind. She has some sense of what lays in front of her. It’s a walk she does all the time. Sometimes, we don’t have to know or be able to see the details to know where we want to go.
We are all blind to the future.Our ability to predict is limited to extrapolating from what has happened recently.So often, living with a chronic, progressingcondition requires us to make the best choice we can with the information at our finger tips.If we are introspective enough, we may look back to see the clearest path to better light the way for those behind us.
This past week, I was lucky enough to read about two such reviews of past events.One was an MS study looking at the impact of delaying treatment of MS by 3 to 5 years versus beginning treatment immediately on deaths due to “MS complications” over 21 years.The other study was a study of Harvard graduates over 75 years in an attempt to discover what men need to be happy.
On the MS study, it was conducted from 1990 to 2011 looking at the effects of early treatment for MS patients with interferon-beta.Realize, 1990 was the beginning of a decade which brought us many advancements in MS care, and care for MS has come a long way in the last 20 years.For the trial, half the patients were given interferon-beta, and the other half were given a placebo.After three years to five years, the placebo group received interferon-beta.I know it is often said to patients, “ MS is not fatal.”However, of the 69 patients who died in the intervening 21 years, 78% were judged to have died from “MS related complications” including such things as swallowing problems leading to pneumonia, urinary dysfunction leading to UTI’s and septicaemia, falls with fractures, etc.The mean age-at-death was less than 52 years for the participants who died.Those in the placebo group experienced an excessive number of MS-related deaths.
Keep in mind, interferon-beta is less effective than many front line MS treatments now.In the past, I have advocated against the strict use of dots on an MRI determining the efficacy of an MS treatment.I want some measures of mobility and cognitive ability to assess whether a drug works.There have been a few studies casting doubt upon whether our current front line meds work in terms of preventing disability, but living or dying of MS complications seems like a great measure of drugs efficacy.The biggest hurdle to using it as an end point is the time it takes to learn the truth.This was a result from 21 years of patient data. Still, it seems this study shows the value of dealing with MS as best we can, as soon as we can.The failure to do so might just kill us, even if we do not understand the exact mechanism by which slowing our MS prolongs our lives.
To my mind, it comes back to my old motto, “Do what you can when you can until you can’t.Then go to bed knowing you have done all you could, and tomorrow will arrive anyway.”As I read this study, the ending could be changed to “…OR tomorrow’s tomorrowmay not arrive at all for you.”
The second study, the one of Harvard graduates, began in 1938 began with over 200 Harvard men and tracked them into their nineties, well beyond traditional retirement years.It tracked a huge number of variables from political leanings to social lives to various physical conditions.The study is fascinating if only to track a cohort of men through their lives.
It’s not exactly a representative sample. Thesample isn’t just college educated men. It’s men privileged enough to go to Harvard. When it talked about the drop in average salary from bad choices, I kept thinking my grandparents would have liked to have a salary big enough to have so far to fall. However, I think many of the points likely apply to us all. Drink and drugs were the mostly likely to derail a good life. The warmth of our relationships in large part determine our happiness, and our health in old age is mostly determined by our decisions and habits as adults not our genetic make-up.
I think of this study with respect to MS, and it is a bit terrifying.According to the MSresearch blog, MS patients are twice a likely to divorce as healthy people.Many MS patients become clinically depressed.So often our ability to relate to health fades.I no longer remember what it is to be without pain, to be clear headed, to feel strong.Maintaining warmth in our relationships is a challenge to all sides.Yet, I can tell you the warmth of my relationships maintains me and my peace of mind.
I would like to think some of my habits will help me as/ifI age.In the study men’s old age health was better linked with their choices than their genetics.Towards that end, what began with taking stairs rather than elevators has progressed to running and rowing three or four days a week.My family has a history of heart disease and cancer, but if one believes this study, what I do matters more.
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As I thought about these two studies this week and doing what seems best with the limited information I have when I don’t have all the answers, I think of this quote:
“…I would like to beg you dear Sir, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”
Rainer Maria Rilke, 1903
Maybe these two studies will let us see a tiny sliver of the answer.If we are lucky, maybe we will live our way to the next peace of the puzzle.If we are truly fortunate, we may even have achance to light an easier path for those who come after us.
