Without getting into all of the boring specifics of the symptoms of my illness, I do suffer everyday, and it affects my life considerably.

Each day for me is a pattern of feeling confident that I have enough strength for one more activity before I will have to go to bed and rest. By “activity” I mean things like fixing my children lunch, putting a load of dishes into the dishwasher, pushing my children on their swings for a few minutes, helping them color a picture, etc. Nothing earth shattering for most people, but for me it is an accomplishment.

I will sometimes wrestle with and tickle my children, but after several minutes I am usually kneeling over the toilet. After each activity, I normally say in my mind, “I think I can push myself enough to do one more”. With each activity I fight the ever strengthening compulsion to go lie down and sleep, just as anyone ill would. Many times I can lie down for a while throughout the day, then get up and try to accomplish some more. Of course I can, and have pushed myself too hard. My wife many times has removed my shoes and covered me with a blanket wherever I lay, before she goes to bed.

Some people feel that I should not push myself so hard, that I am ignoring the signs my body is giving me. To tell you the truth I do not think I could keep from pushing myself, it is the way I seem to be wired. If it shortens my life span, at least I am living.

My wife had to quit working, as I can not care for the children by myself. She loved her job, and she was good at it. She was an office manager at a photo studio for 11 years, but our children love to have us both around now.

I have adjusted to this life pretty well. Although everything appears to be in a constant state of motion to me, I have such good “sea legs” now that I pass all of my balance tests as well as anyone in good health. I remember also having bronchitis, and I spent several weeks in bed. I felt better then than I do now, but I have adjusted well enough to function normally most of the day. Some people have known Robyn and I for a while before they even know I have health problems. Although people who have known me since before I became ill can usually tell by my eyes and because I am not as “hyper” as I once was. That is probably a good thing though. (Chuckle.)

How about our finances?

Our finances are scary, but can be funny. The little things like the book orders from school become an ordeal as we try to get our children a few of the 99 cent books. Reading to the kids is one of the things that my wife has enjoyed and so do they.

 

One evening my wife and I watched the Pizza man pull up to the neighbors house and marveled at the wealth that could afford pizza… and to have it delivered. We hear many neighbors complain about their finances, but then turn around and tell us how much they just spent at the mall. Robyn and I just smile. People have been very kind to us, and last year our children received Christmas because of our local church congregation and some generous people. People around us have been so wonderful, and my wife has a few sisters that help keep our children in clothing that fits them. Thrift stores, although they used to seem beneath us, have been great places for us to get clothing for the kids as well. They are so young too, that they don’t care… in fact if it has Batman or Spiderman on it, it is the greatest thing in the world.

An unanticipated co-payment can send our home into high stress because of the extra $15 that we don’t have. It was very difficult for us for a long time, but we have gotten pretty good at budgeting our money, and making it stretch. It has also been rewarding to see the Lord bless us, as many months we make it by small miracles.

Now let me tell you about how I view life now.

As you can imagine, I have been forced to think about things that I normally wouldn’t have. We are all dying, most of us have forgotten that fact, I think I had. Mortality is a terminal condition. My illness has been one of the greatest gifts of my life, because I am now finally aware that I am dying. I will probably still outlive many people who reasonably expect to outlive me. It is as if I have a second chance on life, and an opportunity to do it right. Unlike other illnesses such as cancer that can leave people with very little time, I still have many years ahead of me.

I wish I could be one of those people who handle all of there adversities well, but I am a stubborn thick headed sort of fellow that isn’t as good at having the proper perspective as I would like to be. I spent the first two years of my illness angry, bitter, and depressed. I love to be active, and I loved to work and had chosen a career that I enjoyed, so I had a hard time letting go of all that. I made about every mistake and bad decision that I could have made in that time until I finally hit the bottom. Some of the things that I did have cost me relationships that were dear to me, and the respect of people who knew me. Some consequences may last me forever. Eventually I had an awakening, and I got tired of sitting in the mud and got up and realized how good my life really was and could be. I may still be in the mud, but now I am at least up and moving forward again.

It was also important for me to set a good example for my children just as my dad did for me in working hard. I now have a five year old who says he doesn’t want to be anything when he grows up, he wants to stay home and be a dad like me. Now that should be flattering, but it bothers me.

All my children have ever been told is that daddy was hurt, and that his brain is sick. (Now I know that some who know me are thinking that I have always been sick in the head… shame on you.) My oldest son Parker is five and was talking about dying and heaven with my wife as she was rocking him late one night. They were talking about family members who have died. My wife was telling him that while we are apart that our family can see us and they can be with us. She told me that Parkers little lip started to quiver and he said, “When dad dies, will he be with me?” We both cried as she related the story. The first reaction is to make promises that we don’t have the ability to keep. All she could do was to assure him that dad will always be with him, and loved him more than anything.

Now you may think as I used to, that perhaps someone in my situation would do all he could to resolve all the conflict in my life and that I would feel guilty about all the things I am not doing right. Well, I am still not perfect… As much as I would love this new awareness to change my personality, I would love to let go of all of my flaws and imperfections as easily as many of the other negative things in my life. Of course I will always try to improve, but the guilt for all my regrets is also something I am trying to let go of. I realize more and more that being prepared to meet God has less to do with being perfect, and more to do with being grateful. Instead of needing to fix all that is wrong, now I tend more to let go of it.

A lot of things seem like such a waste of time. I look at each day as a gift, and I want to spend it with my children and enjoy them, let them enjoy me, and let them know that their daddy loved them more than anything else in life. So instead of trying to resolve all of the problems in my life, or change the world, I find that I don’t have time for the negative, so I let go of it. Even relationships that have had a negative affect on me I have let go of to make time for those that are more uplifting. I don’t have time either to hold grudges or to be angry with anyone. It really is such a waste of time.
I love my life, if this was a package deal; I wouldn’t trade it for anyone else’s life. I also think if the hard things came with all that is good in my life, I got a bargain. I believe that we have more power over our own happiness than most of us ever realize.
Feeling sorry for yourself will accomplish several things… you will feel even worse, you will drive everyone who knows you away, and you will stay that way indefinitely and nothing in your life will ever change. A negative attitude will pull other people down, and even though they may care, they will stop asking you how you are doing and eventually you will not see them anymore. It is like a virus, and if people keep getting sick when they are with you, they will start to avoid you. Then you are left wounding why you are alone and no one cares. People don’t like to be drained, they like to be lifted. My wife and I decided that is the type of people we would like to be.

When my wife and I were trying to have children I noticed people in the store and different places that would yell at their children and seemed to treat them as though they were an inconvenience to them in getting on with life. I vowed to not take children so much for granted if I ever could have my own. It took us six years, and one lost pregnancy, but we finally had children. Now that I have children, (and I have found that I can yell at them as well as any other parent does,) I can say that I have never seen them as an inconvenience in my life. In fact they are my life, and the greatest accomplishment (or “success”) I can leave behind.

Similarly, I look at people with a negative attitude… the one I had for two years, and I see what a waste of time their attitude is. I guess that seems to be the reoccurring theme here, wasting time. Too many people are waiting for… well I don’t know what they are waiting for. Waiting for something to change in their lives… waiting for something to make them happy. They spend there days like money they don’t have. When they are at the end of life I wonder if they will look back on the days and years that are now irretrievable and wish they had spent them better. Nothing may change the events of the day, but will you enjoy it or just be in a hurry to get to the future… which will eventually end the same for all of us. We tend to put too much responsibility for our feelings and problems on everything external, when in truth we are the only ones with the power over how we feel, and the ability to change our life.

As broke as my wife and I are, I don’t like to buy my children toys at the dollar store… not because I am a snob, but because I can’t afford to waste my money on things that won’t last. I would rather spend my money when I do on a toy that will last my children a long time, one of quality, and then I am not wasting my money. Having had to budget so carefully has only enhanced this trait. Even if I had a million dollars, that doesn’t mean that things I could buy aren’t still a waste of my money.

 

I mean all of that only as an analogy of time. None of us have an unlimited wealth of time. I am trying to spend my time on things of quality, and spend it being happy. It is such a waste of time not to be happy and enjoy our lives. You can't get any of it back once it is gone. That is why my illness is such a gift, I can finally see all of my past priorities and the priorities of the average person are so often pointless. I wonder how much of my children’s lives I will be here for, and what kind of condition I will be in. Will I see them graduate, marry, and have children? Will they be able to talk to me when they are having problems, or will I become an ornament in the background because I can no longer contribute much to a conversation? Will they look at old home movies and say, “wow, look at dad back then?” I don’t know the answers to these questions, but I know that I am here today, so I will enjoy it.

When I have those days where I am so sick that I am in bed trying to survive until tomorrow… I wake with a sense of rebirth. My new day is a gift and my wife and children are the most beautiful site I have ever seen. I have never lived my life as well as I do now. I have been told that I sugar coat things… that I am not honest because when people ask me how I am doing I always say that things are good. People tell my wife that they have to ask her how I am, because I don’t tell them the truth. Well I am good. My physical quality of life may be poor, compared to what it once was. My overall quality of life however, has never been better. So yes, the truth really is that I am great.

 

Oh I still have my days where I don't feel happy and even start to think it isn't fair. I would still love to work. I have days that I feel angry still. I think all of those feelings are normal, but they are not the underlining theme to my life, and I "suck it up" and go on.

 

I was really bullied often when I was very young and don't remember having a single friend when I was in grade school. Many of those people I thought one day I will come back and show them all what I made of myself. I couldn't wait for someday to come and get my moment of "...In your face!". It seems a bit funny to me now as I can't recall the names or faces of those people. I don't regret much of that stage of my life, except that I thought what the other kids thought of me mattered. I can't help but wonder if I will reach another stage of life, or the next life and won't look at this part of my life with the same sense of maturity and think, "don't worry so much about all that... it will never matter."

It really doesn’t matter what other people choose to think or believe about me. The people who judge or don’t like others for whatever reason really should never matter. Has it ever been important who someone else thought I was? Even if  I used to think so... I was cured through illness. I do hope I can teach a few people what I have learned, and I hope they don’t have to learn it the way that I have. I don’t think I have ever disliked anyone enough to wish this on them, so I guess I am wishing you all the good that I have, but without the lessons that have taught it to me. (And I always had that good in my life, I just didn’t know it... at least as well as I do now.)

Besides living for today and not wasting time focusing on the negative, the one piece of advice I would give to anyone is LAUGH. Laughing is what makes the atmosphere in our home a place we all love to be, and thank heavens we have fun together and can enjoy each other. I think it is important not only to live as if you could die tomorrow, but also as if you could live forever. By that I mean that you hear people say that “if I had one month to live, I would…” but that attitude is to spend today at the expense of tomorrow, and it doesn’t matter because there is no tomorrow. I try to enjoy each day and spend my time as if I don’t have many days left. I also try to invest in my future and that of my family as if I had one, because anything can happen.

 
My future is as uncertain as anyone else’s. It is only because I have been faced with some things that I have started to think of life in a new way. I don’t want anyone to feel sorry for me or my family, or think they have to donate to our family “charity”. My point is just the opposite… I don’t have good health or a lot of money, but I don’t need it… I never did.

I believe in God. I believe that God is a being who would never allow us to experience anything that was not ultimately for our good. I believe that everything happens for a reason, and that we don’t always get to know what that reason is. Although I can see many blessings from my illness, I am sure I do not understand or see it all. I used to think that to learn, I had to know the answers to all the questions. I now see that God can teach me, even if I do not understand the lessons. I have come to think of faith as being content with the unanswered questions. The more I learn, the more ignorant I seem to feel, but the better I get at saying "I don't know".

My children are terrified of getting a shot. Most parents have experienced the look of ultimate betrayal on a child’s face as they give you that expression that seems to say “why would you let them hurt me daddy?” There is no way to help a small child understand what is happening. I know as there father, that as hard as the experience is for them, that it is giving there body the strength that they need to avoid things that are more difficult, more painful, and even deadly. I have come to view my relationship with God much the same way. I am the child, and I trust that whatever I experience, even if it is painful, is something only a loving Father would let me suffer for my own benefit.

 

There are people who are born with aptitudes or talents. Some are bigger and stronger, some are intelligent, and some are artistic. Certainly it can help you succeed and enjoy it if you know how to harness some of those gifts... but there are many who were great athletes when they were young, who end up as couch potatoes working a job better suited for high school kids when they are 40. There are the runts who were tired of getting pushed around and begin to work out and end up as world class athletes. It wasn’t pure aptitude. I have more natural “ability” to walk than someone who has only one leg, and yet there are people with only one leg, or other physical impairments that have far surpassed anything I will do or accomplish in athletics too. Again, it was not just ability that got them there.

Science has proven that your brain works much like a muscle. The more you push it and exercise it, the greater its abilities become. So it is just as possible for the idiot to become a genius as it is for the runt to become a gold medalist. People accomplish in life exactly what they want to, whether they will admit it or not.

Success does not exist separate from failure, and those who never fail, never succeed because they are those who have never tried. I believe very strongly that success has very little to do with ability, and has everything to do with how determined we are. Those who never succeed are those who did not want it bad enough. Those who succeed are those who would not let failure after failure stop them.

I made the piece “Unbroken” because I felt like my health was like being tied to a stump. The tether may be unbroken, but so is the bird’s spirit. The funny thing is that I didn’t know how to fly until I had been tied down.
I decided long ago when I loved to backpack, that if I was ever attacked by a grizzly bear I would fight back. Would I have a chance at winning such a fight? Of course not, but as death would be certain either way, I would rather go down fighting than lay there and give up. Although I have been close to giving up a few times, I am still alive. Life is a war, and even if it seems that our enemies are unbeatable, go down fighting… never let your limitations break you! One of the greatest things I ever heard was “Live as long as you’re alive.” I intend to do just that.

Mel “Clay” Rumsey
November 2007