Tag Archive | life

A Sliver of Light

Sometimes, when the darkness comes and you feel your world crumbling down around you, a sliver of light makes its way through the cracks of your life. The past month has been a huge struggle for me and my husband. Not only has he seemed to have gotten noticeably worse, but financial burdens have become overwhelming, our kids have had some personal struggles, and the pressure to remain strong and keep life “normal” for everyone has become harder for me. Then, on May 18th, my husband was brought to the ER by ambulance once again. He had been vomiting on and off for days, thought he was better, and then started all over again. We thought he was septic again. This was not a new thing for us…we had been down this road several times before.

But, this time was different. He went to his usual hospital, where they knew him and his history. They discovered he wasn’t septic, but possibly had a blocked intestine from his tumor growing and squeezing it shut. A doctor came into the room and said that she felt he would be better off going a few blocks away to Smilow Cancer Hospital. She felt he would be able to get tests over the weekend, and that there may be doctors there with more expertise. So, we agreed and he was transferred. It was one of the best decisions we’ve ever made regarding his treatment in the last 11 years. It changed the trajectory of his treatment and gave us some hope we haven’t had in years.

Dave stayed in the hospital for 5 days, and came out looking and feeling like his old self. The difference? He had a different doctor who decided that since his disease is essentially an overproduction of inflammation (in a very basic nutshell), that they should put him on steroids and see how he does. The result was nothing short of amazing. He felt better physically with less pain, and his head cleared and he was able to think more clearly. He was more awake. They released him on Tuesday, with a referral to a doctor who specializes in rare diseases. That doctor happened to be in the SAME practice as the doctor he has been seeing for the past 5 or 6 years. We have no idea why we were never told about him.

Last week, he had his first appointment with the new doctor and he has given us more hope in one visit than the other doctor has ever given us. The new doctor is already treating another patient with Erdheim-Chester Disease in the same practice. He studied under a doctor at Sloan-Kettering and a doctor in Boston who both have experience in treating ECD. He started my husband on a new medication, has a brand new plan for him, including monthly visits, scans, and testing for a gene mutation that could change the course of his treatment in a positive way. The hospital also gave him other resources to help him and the family. In 11 years, we never knew any of this existed. One trip to the hospital, for what we thought was just another hospital stay with some sort of infection, turned out to be a blessing in disguise. We had the right doctor at the first hospital who questioned his lack of current treatment, who sent him to a specialty hospital, who had the right doctor on staff to lead us to a completely different doctor with a much better plan.

Life is still a struggle, and the illness will always be there. We’ve watched as my husband slowly deteriorates, not knowing what to do or where to go. Just when you feel as if life has kicked you so hard that you don’t want to get back up, the right people, in the right place, at the right time, enter your life. And everything changes. We don’t know yet what the outcome of all of this will ultimately be, but we feel hopeful for the first time in a long time. Sometimes, that’s all you need to get you through.

When The Caregiver Gets Sick

Dec13

On Tuesday, November 14, 2017, I heard the words “You have breast cancer.” I knew the words were coming. Somehow, I just knew. I had had a routine mammogram the week before..a week and a half after I had noticed a lump. A lump that my doctor had NOT noticed 3 weeks before. Within 2 days, I had a biopsy and I could tell by the atmosphere in the room that they thought it was suspicious. They’ve seen enough malignant lumps to know one when they see one. So, I wasn’t surprised, but I WAS shocked. How the hell is this happening to ME? Haven’t we been through enough? I’ve been taking care of a husband with a rare disease for 10 years, who 7 years ago had a motorcycle accident and broke 10 bones, in addition to raising 3 children, running a household, and working full time. In between the major crises, we had so many mini-crises that I’ve lost count…sepsis more than once, dead cars, financial crises, a daughter with a ruptured appendix, broken appliances, more car issues, and now my own cancer diagnosis. And did I mention my car just died last weekend?

I’ve seen a lot of statistics over the years about how caregiving can impact the health of the caregiver. Logically, it can have a huge impact on depression rates, but it can also impact the physical health of caregivers. We are told all the time to “take care of ourselves,” and “take time to pamper yourself.” As caregivers, I think we can all agree that is much easier said than done. I mean, when exactly are we supposed to do that? We go into auto-drive and we do what we have to do. We think about the people we take care of…the sick, our children, our jobs and responsibilities, and our finances. The last thing we think about is ourselves.

I’ve seen the statistics and I’ve always thought that it will never happen to me. I’ve always told myself “I’m strong, I do what I have to do, it’s just our life now, I take care of myself by eating pretty well, I won’t let this get me sick, etc.” I pride myself on having a positive attitude, a great (and frequently twisted) sense of humor, and my incredible resilience. I have handled everything that’s been thrown at me. I just put my head down and forge ahead and I do what has to be done. I think that’s the common thread with caregivers. Unfortunately, sometimes life catches up with you and says, “Hey, since you won’t give yourself a break, I’m going to force you to have one.” I certainly don’t think of this as getting a break, but I do have several weeks to recuperate from surgery so I get a little bit of a rest. The next treatment is up in the air at this point. Chemo may be in my future, maybe not. I do just look at my cancer as yet another bump in the road. It’s just one more hurdle to get over. I was lucky my cancer was found relatively early and my prognosis is great.

I’m not sure if I’m being super positive, if I’m in denial, or if I’ve finally lost what’s left of my marbles, but this isn’t going to get me down. I have too much to do in life and I have people relying on me. I’m going to kick cancer’s butt, and I’m going to look good doing it with my cute, perky new rack, and even a bald head if I have to. I just do what needs to be done, and I will always try to do it with a smile on my face.

I See You

Sep17

A few weeks ago, I was at the beach and I saw a young woman walking with her two little boys and her husband. Her husband was disabled, walking with a cane and appearing to have lost some muscle function in his arms and legs. I keep thinking about the woman and what I would have said to her at the right time, in the right place. This blog post is for that woman, and the other young people who are caring for an ill or disabled spouse, while raising a family.

To The Woman on the Beach:

I see you.

I see you enjoying a day in the sun with your family.

I see you including your husband, who is clearly finding it a challenge to walk in the sand.

I see you take his hand, silently letting him know you are there for him.

I see your little boys, enjoying the sand, seashells and surf like all little boys would at the beach, happily oblivious to what you and he are going through.

I see you trying to make life as normal as you can…for your boys and for your husband.

I see you putting on a happy face, even when you aren’t happy.

I see your concern for the man you love.

I see your heartache and your heartbreak…watching the man you love suffer, wondering what your future will be like, wondering if you will someday be alone.

I see your worry…worry for your husband and his future, worry for your boys and their future, worry for yourself and your future.

I see your exhaustion.

I see your resentment and your guilt.

I see your loyalty.

I see your commitment.

I see you lying in bed in the wee hours of the night, waiting for the darkness to pass and the light to return.

I see your sadness.

I see you taking one step after another, walking through the storm, hoping that someday there might be sun again.

I see you trying to find happiness wherever you can.

I see you being grateful for all the little things.

I see you wishing for things you may never have.

I see you laughing.

I see your tears, cried silently when you are alone.

I see your appreciation for the moments you have together.

I see you taking care of everyone’s every day needs, while putting your own aside.

I see you wishing you could have time to yourself.

I see you keep going even when you think you can’t.

I saw you on the beach that day. I saw you, and I want you to know, I understand.

Exhaustion

Apr4

Exhaustion. It can hit out of the blue. You think you’re doing well and handling everything, and you have a hopeful outlook. It’s not always physical exhaustion. It can be mental or emotional exhaustion. But, mental or emotional exhaustion definitely adds to the physical exhaustion. That’s where I am this week. I’m mentally exhausted. I’m tired of struggling all the time. I struggle with a busy schedule…work, managing a household, taking care of kids, being available to my husband for his dialysis or any other medical needs he has. I struggle with worry EVERY SINGLE MONTH on how I’m going to pay everything and still be able to buy a little extra, or do something fun, or be able to pay for something my kids need or want.

Home dialysis was supposed to make things easier for “us.” They told us the machine is the size of a suitcase, and we can take it anywhere, even on vacation. They didn’t tell us we would need to lug 5 large bags of fluid for each day of dialysis (25 bags for a week), saline IV bags, and a gazillion medical supplies with us. They told us you do dialysis more frequently, but for less time. We do dialysis 5 nights a week for 2 1/2 to 3 hours once he is actually hooked up and dialyzing. It doesn’t include set-up time and clean-up time. It ends up more like 5 hours a night. That’s a lot. They said he can do it on his own, but it turns out, he has to have someone here with him to help him hook up and unhook, or be here in case of an emergency. It’s not easier at all. It’s harder.

I’m so tired of worrying about money. I get the summers off, but I end up a stressed out wreck because I don’t get paid when I don’t work. I’ve been applying for other full time jobs that are year round, even though it will mean I will have to leave a job of 9 years that I love. I considered finding something part time that I could do during the school year to supplement my income, and pick up hours in the summer to maybe enjoy them without worrying. But, because of dialysis 5 nights a week, I don’t know how it’s possible to work part time during the school year, after work. There just isn’t enough time in the week.

I’m tired of saying no to things that are important to my kids because I can’t afford them or I don’t have the time or ability to be both at home, and out. People will say, “you don’t have to give them everything they ask for.” My answer to that is that they don’t ask for much, and when they do ask, it’s very important to them, or it’s a life event that they shouldn’t have to miss. I hate that there are times they have to miss out because I’m not available or can’t afford something. I hate struggling to figure out where the extra money is going to come from. I hate that I am the only one who worries about it. It really sucks to keep disappointing your child, when you know you are struggling yourself to accept all of this.

I’m tired of having to keep it all to myself because the person that I’ve always figured this stuff out with is sick. He’s sleepy, he’s medicated, his brain is often foggy. And there isn’t much he can do. He is exhausted, too. His body is failing him, he’s in constant pain, he’s sleep deprived, he’s forgetful. He doesn’t have a solution to any of this. I’m tired of handling it all alone. I have to always keep him and his illness in mind, otherwise I would be overcome by resentment and hopelessness. I keep him in mind because he has enough to worry about. He didn’t ask for this any more than I did. He has it worse. My exhaustion is nothing compared to his.

This exhaustion has come and gone many times in the last 9 years since he got sick. We always rally, we always make it through, we always survive. It’s a matter of plugging along and pushing through. We have no other choice.

When Is Enough, Enough?

Mar30

I walked in the door at 7:30 tonight after being out since 8:15 this morning. My day consisted of working with kindergarteners for 7 hours, picking my daughter up from track practice, driving 40 minutes to her voice lesson and 40 minutes home, and a stop for Chinese food. I blew off a meeting because I had to get home at a decent hour to help my husband, and I was tired. Like almost every night, I was greeted by dishes in the sink, dirty floors, dusty pet hair covered surfaces, laundry piled on the couch, laundry in the bathroom, laundry in the laundry room. Did I mention there was laundry? The bathroom is a mess, even though I clean it at least once, if not twice, a week. There is also the usual clutter of a lived-in household.

I blew off cooking dinner tonight because if I had to make a meal, we would have been eating at 9 p.m. Did I mention I was tired? So, take-out it was. Again. I was out of the house and on the go for almost 12 hours today and had no desire to cook. As I sat and ate my Chinese food , I looked around and started criticizing myself for my obvious incompetence in running a household. What kind of wife and mother lets her home look like this? How dare I have this amount of laundry all over? How dare I allow my floors to look like crap all the time? It’s incredibly embarrassing every single time someone walks into our home. I wonder what they must think of me. I don’t like it when people come over. They probably think I’m lazy. There is no excuse to not keep up with it all. Even though I try to clean it every week, it never looks the way I like it, let alone the way guests would expect to see it. It looks good for a day at most, and then it’s a mess again. I don’t have time to make it look incredible, or even presentable most of the time.

I look forward to weekends, but then I spend them grocery shopping, cleaning what I can, driving kids around, and hopefully catching up on some of the sleep I inevitably missed during the week. It’s a rare weekend that I get to do something just for the fun of it. Sitting and reading a book can be a challenge. I figure I don’t deserve it anyway, because I can’t even get my simple chores done.

I’ve also been trying to find a part time job to supplement my income during the school year, and be able to work in the summer when I don’t get paid from my regular job. I can make it work. I can work a couple of evenings, and maybe one weekend day, while holding my full time job. I mean, it’ll take some of the stress off, right? I can do this. No excuses.

Meanwhile, my husband sat in his recliner. No, he isn’t lazy. Far from it. He was hooked up to the dialysis machine that keeps him alive. He does this 5 nights a week for several hours. He can’t be alone when he is hooked up to the machine. I have to be here with him, or another adult has to be with him, in case something happens or he needs something. I figure that should give me the time to clean, do laundry, and cook, since I’m home anyway, right? No excuses. There is no excuse. There is no reason that I shouldn’t be getting everything done every night.

These are the things I say to myself all the time. Then tonight, as I sat here, I heard that sound a record makes when the needle scratches it. You know the sound, if you are old enough. Now, I didn’t really hear that sound…it was in my head. But I noticed the negative chatter in my head and stopped myself. What is wrong with me? I never stop, and yet it still isn’t good enough for me. The house isn’t clean enough, I don’t cook enough, I don’t keep up with the laundry, I’m not giving enough time/money/attention/experiences to my kids, I’m not giving enough time/attention to my husband, I’m not making enough money, so I can’t provide enough. I also tear myself apart because of what other people might think. They’ll think I’m lazy, or dirty, or simply not good enough. I make it seem like I can handle it all just fine, but I really can’t. Why is that not okay?

Honestly, I don’t know how to fix it all. I’m trying to accept that this is my life for now. My house will be messy, the laundry won’t be completely done, we will eat take out more than we should, and if other people come over, they will have to tolerate the mess. People will always judge what they haven’t lived. I’m judging it, and I live it. I’m just trying to get myself to the point where I can say “enough is enough,” and be okay with just doing the best I can for now.

Adjustments

Sep13

It’s been almost 8 years since my husband’s disease was discovered. It’s been a long 8 years, full of learning experiences I never thought we would ever have to endure. I’ve learned how very possible it is to get through every day life, struggling with exhaustion, or finances, or lack of time, or situations out of our control. I know what it’s like to continually take one step forward and two steps back. I know what it’s like to make sure my kids have a good childhood, with interesting experiences, unique opportunities, and the chance to become the people their souls are meant to become, all while living with a fathers’ illness that invades every part of our lives. Life has been an ongoing struggle between dealing with a sick spouse, the loneliness of losing people in our lives who can’t deal with it, grieving the loss of our dreams, and living every day life, raising kids, enjoying what we can, and just keeping on going whether it’s an easy day or a hard day.

The hardest lesson has probably been acceptance of how this disease has changed our marriage. Eight years of spousal illness takes a rough toll on a marriage. Both of us are dedicated to each other until the end. There is no question of that. We love each other and we are both loyal to each other. But life has changed for us. My husband sleeps all the time. When he is awake, he has no energy, or he has energy for short amounts of time. He is on so many medications that he is often in a zone and not really hearing what I’m saying, nor responding to me. He is in pain almost all the time. It never goes away completely. For all the exhaustion he has, he never sleeps well because he can’t get comfortable. It’s really hard to watch your husband suffer every single day. I get tired of it all. Sometimes, I just want to get out of the house so I don’t have to look at him like that. There are days I want to scream out of frustration…frustration that he isn’t talking to me or listening to me, frustration that he can’t do much to help me out, frustration that it will never get better. It’ll only get worse. We likely won’t grow old together, and get to do the things we used to talk about doing when we retired.

There have been many times that I felt alone with all these frustrations, grieving the loss of a marriage that won’t be what we had hoped. But, he deals every day with illness. He never feels good, he is always wiped out and exhausted, he is bored being home alone all day while we are at work or school. He wants to be included when we go out and do things, even though he doesn’t always have the stamina to keep up, and often wants to come home early. There are times I need to get out of the house and away from the disease, so I don’t ask him to go. I want to go out, and not have to worry about whether he is tired or in pain and needing to leave early. We recently had a conversation in which he told me that it makes him sad when we do things and don’t invite him. Honestly, I hadn’t really thought about it…I needed to get out, and I figured he wouldn’t want to go because he’s sick and can hardly stay awake. I didn’t always think about asking him.

It made me realize how important the little things are when you are in this situation. We can’t easily do the big things any more. I don’t remember the last time we had a date night, or went away for a weekend, or did something fun together. Now, I’m happy when we have a ten minute conversation and he is awake and paying attention. I’m really happy when he acknowledges the things I do around the house, or the little things I do to help him out, or when he brings me a candy bar just because I know he was thinking of me. He is happy if I go to Walmart with him, or ask him if he wants to go with us somewhere, or if we pick up sandwiches and eat lunch together.

Life with a sick spouse is all about adjustments. If you can’t adjust to a situation, you’ll never make it. A simple shift in the mind can make all the difference in how peaceful your life is. We have made small changes in order to make life a little easier for each other. There will be more challenges and crises down the road, but if we do what we can for each other along the way, even little things, those challenges will be that much easier.

Teachable Moments

Nov29

When my husband’s tumor was first discovered, our children were only ages 9, 7, and 5. They were really too young to be kept in the loop about what was happening, and we went out of our way to hide it all. They were too young to hear about doctors, illness, tests, and an unknown prognosis. We spent two years not knowing anything, so it would have been impossible to explain to them what we didn’t understand. Once we started getting answers, the reality of what could be coming wasn’t something we felt they needed to know or worry about. We wanted them to just be children, with no adult worries, and we wanted to keep their lives as “normal” as possible. It worked for a while.

Now, our children are ages 16, 14 and 12. There really is no more hiding, and it wouldn’t be fair to be less than honest with them. They know Dad is sick. They see it every day. We don’t make a point of talking about his illness, but we answer honestly now, when they have questions. That is a hard transition to make. As parents, we want to protect our kids from the difficult parts of life. Nobody wants their kids to grow up with a sick parent, constant financial struggle, and an inability to know what can be expected in the future. Under the best of circumstances, none of us can predict what the future will hold. But with an illness, it’s even harder. Life is lived on a day to day basis. Plans are hard to make. Promises are almost impossible.

For a long time, I felt guilty that our kids were dealt this hand…living in a family with a chronic illness that hangs over us every single day. I felt it was unfair to my husband, and myself, but especially to our children. I had an amazing, happy, care free childhood, and it hurt my heart to know that my kids wouldn’t have the same experience. I’ve always wondered how this experience would affect the rest of their lives. Would they grow up feeling cheated, or insecure, depressed, or anxiety ridden?

As our kids grow older, I find myself looking at our situation in a different way. I’ve accepted that this is how things are and there is nothing we can do about it. We can fight it and wish it were different. That doesn’t work…I’ve tried it. We can let it consume us and ruin our lives. For me, that has never been an option and I wouldn’t allow my kids to let it affect them that way either. Now, I try to look at it another way…a way that will hopefully help my kids. My kids are, and always have been, watching me and how I respond to my husband, his illness, and our life as a family. I hope that they have learned that spouses are loyal, through sickness and health. I hope they have seen that life can be brutally hard and not go as planned, but that you simply don’t give up. I hope they have learned that sometimes, you just have to put your head down and plow through the tough times, and that eventually you WILL come out the other side.

Now that our kids are more aware of what is happening, they are asking me more questions, and talking to me about their feelings…whether positive or negative. It’s my opportunity to continue to teach. The most common feeling they have mentioned is frustration. They get frustrated that their Dad sleeps a lot, and spends a lot of time just sitting and watching TV, or wandering aimlessly around the house, not doing much of anything. They get frustrated when they see that he eats and drinks unhealthy food. They get frustrated that he is often too tired to do something with them, or drive them somewhere. They get frustrated when he won’t wear a seatbelt. I completely understand their frustration, but I take those conversations as the opportunity to sympathize with them and to teach them that we can only control ourselves, not other people. My kids tell me they don’t like to talk about it (as they are talking about it), and it gives me the chance to tell them that talking about it relieves them of the burden of holding it in. I encourage them to talk about their anger and frustration because I know it helps to let go of it and share it with someone else. I tell them it will eat them up to hold it in if they are sad, angry, or upset about something. They tell me they want to spend more time with their Dad, but don’t know what to do with him. I tell them to tell him that they want to spend time with him…it will make him feel good, and they will always remember the times they spent together. Communication is important, and they should always tell him when they want to be with him.

As life evolves, and the years go by in our household, there will always be teachable moments that I hope will help my kids throughout their lives. I could live with a heavy heart, wishing that life for my kids was different. Or, I can share my experience with them in the hopes that they can move forward through their lives with a little bit of wisdom, and a foundation for dealing with the hard blows life can throw at them.

Beyond The Cover

Aug31

You can’t judge a book by its cover. How many times have we heard that phrase? We know what it means…you can’t judge something based on its appearance. Yet, it’s human nature to do exactly that. How many times have we seen a dirty, homeless person on the street, and thought to ourselves how lazy they are, or perhaps mentally ill, or just plain losers? How many times have we looked at someone of a different race and made assumptions about them based on stereotypes?

A little over a year ago, we were on vacation in Sunset Beach, North Carolina. My daughter, Hannah, was 14 at the time and had brought a friend with her for the week. One day, they decided to walk down to a group of gift shops because her friend wanted to buy her younger siblings some souvenirs. As they walked through the store, the owner followed them around, and then finally kicked them out and told them not to come back. Both girls were shocked because they had been doing nothing but looking around. They weren’t bothering anyone, or acting suspicious, or trying to steal. What were they guilty of?

Both girls were teenagers. Both were wearing black, perhaps one or both of them had a skull somewhere on their clothes. Both of them had numerous piercings in their ears, and Hannah’s friend had gauges that enlarge the earlobe. They may have been wearing black eyeliner. Did the woman feel threatened by them because of their appearance? Did she judge them as shoplifters because they looked different? That’s a shame if that’s what she did. Not only did she lose a sale that day, but she also made two nice, honest girls feel offended by her actions. They felt what it was like to be stereotyped and judged, based on their appearance. Both of them were upset and didn’t understand why they were being judged when they weren’t doing anything wrong in the store. I explained to both of them that the woman likely judged them by their appearance, and even though I know, and they know, that they are good girls, the woman saw only their style, and reacted based on that.

Hannah is now 16, and she wants to get her nose pierced…a small stud on the side of her nose. I have always told her that I wouldn’t allow her to pierce her face, but I am allowing this small piercing. Why? Because I think it looks pretty. All of her piercings have small holes so that they can be removed when she wants, and they won’t leave large holes in her body. Hannah wants to go to nursing school, and eventually she will be going to interviews for jobs. She has seen first-hand how appearance affects people’s opinions. She understands that it’s okay to have your own personal style, but that there are times that you may have to tone it down in order to get to where you want to be.

There are some people that have told Hannah that it’s “wrong” to have piercings, or that the way she dresses is wrong. She’s been told by family members that she is ruining the body that “God gave her.” She has been made to feel bad for what she likes as her own personal style. She has been judged based only on that style. She has been given gift cards for her birthday in past years for places like Aeropostale, or Hollister by people who think the preppy look is the “right” look. Isn’t that a not-so-subtle way of telling her that her appearance is wrong? I think that a lot of us look at the people close to us, and feel that their appearance reflects on us. If she is wearing black and has her nose pierced, what does that say about me? It says nothing. It’s not about the rest of us.

People overlook her amazing qualities, and allow her appearance to overshadow them. Hannah is a person who is open minded, doesn’t judge others, and is quick to speak up when she feels someone else is being judgmental. She has no tolerance for intolerance. She is loving, and caring, and wants to spend her life caring for the sick. Yesterday, Hannah and two of her friends saw a large amount of garbage left in the woods near our house. They filled three garbage bags with someone else’s trash, brought it home, and put it in our garbage pails. Are those the actions of a person that deserves to be told she is ruining what God gave her, or to be kicked out of a gift shop for doing nothing but shopping?

Never judge a book by its cover. Hannah’s cover is beautiful, regardless of a few holes, or the black clothing it wears. Her cover encases a beautiful soul that shines wherever she goes. Don’t miss the soul because of the cover. Wherever you go, take a moment to look beyond the cover, and see the soul inside. THAT is what counts.

The Ice Bucket Challenge

Aug17

As almost anyone who lives in the free world is aware by now, there has been a viral campaign going asking people to either dump ice water on their heads or make a $100 donation to ALS (Amyotrophic lateral sclerosis). ALS is also known as Lou Gehrig’s disease. I’ve watched as friend after friend on Facebook has been nominated, and videotaped themselves making a little speech, and then dumped ice water over themselves. Honestly, I was starting to feel relieved that nobody had nominated ME for two reasons. One, I don’t have $100 to donate to anyone, and two, dumping ice water over myself sounds like some version of self-torture. I hate being cold. I don’t even like to drink ice water.

But then it happened. My dear sister-in-law, Julie, nominated me in her video. That was an instant of sheer dread that I haven’t felt since, well, I don’t when. I started thinking of excuses as to why I couldn’t do it. I considered donating money I didn’t have. Then my heart took over and I realized that the ten seconds it would take for me to pour ice water over my head, was a much shorter time to suffer, than the patients with ALS have to suffer. I decided that not only would I do the ice bucket challenge, but I would also make a donation within my means to ALS.

Once I made the decision to participate, the next order of business was to plan my wardrobe, makeup, and hair for the big event. I don’t normally post videos of myself on the internet. In fact, this would be the first time. People who are my friends through the internet only, would hear my voice and see me live for the first time. I went with black pants for the slimming factor, which honestly didn’t matter much. Bare feet sounded good because I hate walking around on wet flip flops, and I have a tendency to slip ungracefully on them. I couldn’t have that happen, although I’m sure it would have made my video much more entertaining. I actually showered, and did my hair and makeup before the dumping. I know. That was really vain and stupid. But whatever. The ALS was getting their money and some awareness, so if I wanted to look decent, then call me vain. I don’t care. It doesn’t matter that the video quality was so poor that I could have done it with bed head and yesterday’s makeup running down my face and nobody would have seen it.

The time came to suck it up, prepare the ice water, and do the challenge. I practiced in front of the camera first, to make sure the angles were good, ie. a “thinner angle.” I wanted to practice my speech, so I didn’t sound like a bumbling fool. It took a few tries because my son was standing next to my cameraman daughter, making faces and pretending to laugh at everything I said. His support is always a blessing. All he had to do was look at me a certain way and I would start laughing. He kindly offered to pour the water for me, but I passed on that offer as I knew he would inevitably throw it in my face, rather than allow it to prettily run down my svelte body in a “supermodel standing under a waterfall” way.

After a few practice tries came the real thing. It’s very easy to hesitate indefinitely before pouring ice water over your head, so I told myself I would just do it without thinking about it. I made my speech to the camera, nominated my unsuspecting friends and family, and dumped the ice water. Holy shit, was it cold. The shock to my system didn’t wear off until hours later. I think I had frostbite down my neck and back. My kids laughed…a lot. It was okay because every good comedy needs its own laugh track. My kids were happy to oblige. They’re sweet like that.

So, it was over. Done. It really was easy, and kind of fun, all for a great cause. If you get nominated by one of your loving, considerate friends, please seriously consider doing both the ice bucket challenge AND making a donation. The ice water is to spread awareness…asking for donations wouldn’t have the same impact if it was just some person standing there asking for it. It also gives your friends and family the sick pleasure of watching you torture yourself. In my opinion, simply dumping ice water doesn’t excuse people from making a donation. I think it’s important to spread the awareness as well as make a donation, even if it’s just a small one. Every little bit helps.

If you are interested in learning more about ALS or in making a donation, please visit http://www.alsa.org/. In the meantime, if you are nominated to do the ice bucket challenge, buck up, buttercup, and just do it!

Out Of The Ashes

Aug12

Living in a household affected by chronic illness is challenging, stressful, frustrating, and sometimes next to impossible. It often feels like a jail sentence from which there is no escape. But over the past almost seven years, my family has experienced amazing acts of kindness that we may not have seen if all had been well in our world.

In October of 2010, my husband wound up in the hospital with a failing kidney. It was decided that he needed a nephrostomy tube placed through his back and into his kidney to allow it to drain properly. His tumor had occluded his ureter and his kidney was swollen. It was the only thing they could do to save his kidney function on that side. We didn’t know it at the time, but that was the turning point for his disease and we had yet to feel the full impact on our family. Meanwhile, I had a hip resurfacing surgery scheduled for early November that year, and we decided I should keep the surgery date and get it done before he was any sicker and I couldn’t take the time to do it. I had surgery, and a few weeks later, my hip fractured, and I had to return to surgery for a total hip replacement. My second surgery was 10 days before Christmas, and my sick time had run out. Neither of us had any income coming in. With three young kids, and no income, the stress of Christmas was the highest it had ever been.

One day, a letter came in the mail, addressed to me. I opened it and found $500 with a note saying that it was so my children could have a nice Christmas. It was signed, “Santa.” I felt the tension release from my shoulders immediately, and was so excited that I could buy them presents to put under the tree. A week or so after that, we found a gift basket full of cheese, crackers, snacks, and assorted other goodies, left inside our back door. There was no note and we had no idea who had left it for us. We put it under the tree to save for another day. We decided to open it a few days before Christmas. At the bottom of the basket was a green gift box. I opened the box and found $800 in cash. To this day, we don’t know who left those for us. But whoever it was, they were our Christmas angels that year, and we will be forever grateful for their kindness and generosity. That was the most stressful two months of our lives. Our world had completely fallen apart, and yet out of the ashes came hope, love, and incredibly kind gestures that made all the difference to us that Christmas.

Over the years since my husband got sick, we have been the recipients of numerous kindnesses from many people. Our friend celebrated her 40^th birthday, and asked all of her friends and family to donate money to help us, in lieu of gifts for herself. Our parents have helped us out numerous times when we were in a bind. They have paid our mortgage at times, bought us heating oil, bought us appliances when ours had broken, and my awesome uncle even gave me a car when mine had died. Friends gave us money this past Christmas and we were able to buy heating oil and pay some bills. My parents treated us to a Disney vacation, have taken us on vacation to the beach in North Carolina, and my husband’s parents treated us this summer to a vacation in Vermont. The list goes on and on. People have made us dinners, and taken our kids to do things, and helped with projects around the house. Every gesture of kindness has been very much appreciated and drastically reduced our stress during those tough times.

Families dealing with chronic illness tend to get caught up in the day to day stress of trying to keep their lives as normal as possible, even though their lives are anything but normal. It helps to take a step back sometimes and look at the good that has come out of a tragic situation. We have had friends come into our lives who have provided companionship, laughter, and time away from “the disease.” Anonymous people have come through to help us when we needed it most. We all have a choice to get lost in the rubble, or to stand up and see the beauty that can come from the same mess. We were dealt a crappy hand, but because of that hand, we have also been given the profound gift of friendship, love and generosity. THAT is the true gift.