In June of 2002 I had just turned 19 years old the month before and was a bride on my wedding day. Three years after I met that guy walking down the hallway, there I was walking down the aisle to become his wife.
It is now December of 2014 and I am 31 years old and a stay at home mom. I am also very happily married to that boy I met so many years ago.
Through all of these years we have gone through all the same things any married couple goes through-there are ups and downs, trials, triumphs, and I'm sure I probably annoy him more times than I'd like to admit some times! At the end of the day, we're a family. Matt and I often have conversations about our relationship. I really think that this is a good thing for anyone in a relationship to do. Before you roll your eyes-it's really not a "hey, let's sit and talk about us" type of thing..it's just something that happens and it's not all of the time but often enough that we are able to check in with each other and see how we are doing. Often these talks happen on spring and summer nights when we are sitting outside together, or when a big life event happens, be it good or bad-like going through medical issues or a birthday or celebration for our kids. We reminisce about how far we have come as a couple and as a family. We talk about times where we could have made better decisions or behaved better. We talk about those moments with our kids that may seem like every day little things but are really the most important. I believe that it is through these spontaneous talks that we grow so much and we grow together. I tell him all the time that we are so fortunate.
When Matt and I got married we were so young. I had an idea in my head of how I wanted things to be and how I hoped things would be. For the first six years of our marriage we went through discovering what kind of marriage we wanted, what kind of life we wanted, and what kind of parents we wanted to be. We also went through all the growing pains and joys that accompany all of that. We grew up. For those six years of marriage and the three years of dating before that, I had been the one to take care of Matt with his Epilepsy. I will never forget the first time he had a seizure in front of me. He had not told me that he was living with Epilepsy and we were very newly dating. When it happened his mother explained to me what was going on. I was young and I will admit that I was afraid because I didn't know what it was. I wasn't afraid of him, I was just afraid for him because I didn't want anything bad to ever happen to him or for him to ever be hurt. When we spoke after he recovered the first thing he asked me was if I was going to break up with him now. My answer was an emphatic "NO." I would never do that and it made me sad that somewhere along the line something must have happened in his life to make him worry that this could even be a possibility. I didn't understand then how or why he would think that, and it wouldn't be until many years later that I finally would. I only wish he had told me first just so I would have been prepared if we had happened to be alone or out somewhere but thankfully his mom was there when it happened. I understand why he didn't tell me though, and I know he would have told me when he was ready if it hadn't have happened in front of me first. While we were dating his Epilepsy caused him to break his nose, his elbow, bite his tongue, and a million other injuries along the way. Since being married even more things have happened to him. He isn't able to drive and many times people aren't aware of the affects Epilepsy can have on your memory, not to mention how it affects sleeping habits and the amount of medication that has to be taken. If I could have taken it away from him I would have done it in a heartbeat-I still would. Through all of this, what Matt living with Epilepsy has shown me is just how strong he is. He inspires me every single day. The point that I am making with all of this is that when we got married I knew Matt lived with Epilepsy and I also knew that I wanted to spend the rest of my life as his shoulder to lean on, his sounding board, his care taker when in need, his advocate, his best friend-I wanted to love him-all of him-with my whole heart for my whole life. I knew that he would take care of me as well, I never doubted that, but I had no idea just how much he would have to take care of me...
Though I had been experiencing symptoms for a couple years prior, in the summer of 2008 I was officially diagnosed with Hidradenitis Supperativa, a painful skin condition that currently has little research and no cure. To learn more about HS, you can read my posts on the condition by clicking these links: Part One , Part Two and Poem. When my symptoms started they were mild and I avoided going to the doctor right away. When I did finally go, my doctor told me it was "no big deal". It wasn't until I developed a huge lump that was so painful I ended up in the Emergency Room and had to go home with a tube in my arm, that I switched to a new doctor in the office (purely by chance-my regular doctor was not in the office that day) and I was officially diagnosed. Matt had actually been researching my symptoms and thought that I might have HS and printed out the information for me to take to my doctor that day, I had the papers in my hand ready to give to the doctor when he diagnosed me. While it was great to finally have a doctor that knew what was going on, it was a sad day as well because that meant everything I had read about the disease was now not just some rare disease from the internet that I was scared that I might have-it was something that I truly had. Let me just say that when you find out you have a disease and you start researching it-reading over and over again "no known cure" isn't exactly the most comforting thing. As these last 6 years have gone by my HS has gotten worse. It seems the more time progresses, the more the HS progresses. Now I am affected in 10 parts of my body with tunneling, open wounds that never heal, and scars..more than I could even count. When I received my official diagnosis I finally understood that conversation Matt and I had so many years ago when he asked me if I was going to break up with him after I saw him have a seizure for the first time. I understood because I felt the same way. I was convinced that he wouldn't want to deal with this often times disgusting disease. I felt damaged. As the years and disease have progressed I still have those thoughts. How could he love me, why would he even want to, he didn't sign up for this, I'm broken. Yet-despite all these destructive thoughts in my own mind, Matt has never once, not ever, made me feel anything less than beautiful. He has bandaged my wounds more times than I could count, he has stayed by my side when I am in so much pain that all I can do is cry. He has become just what I thought I would be for him, my shoulder to lean on, my sounding board, my care taker when in need, my advocate, my best friend-he loves me-all of me-with his whole heart for his whole life. Interestingly enough, both of our awareness colors are purple-which just happens to be my favorite color (dare I say more of an obsession). Years ago, I became an Ambassador of Purple to spread awareness and understanding for Epilepsy. While there is not currently an organization like that for HS (maybe I should start one)-I consider Matt an Ambassador of Purple as well-for me. He has researched, talked to my doctors, joined communities-he's done everything he can think of to make my life with HS better.
When Matt and I said our vows on our wedding day part of those vows were, "to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health" I had no idea then just how significant that was going to be for us. I knew that I would always take care of him, love him, have him and hold him, no matter what-I guess I just never gave much thought to anything ever happening to me. I definitely didn't even know that HS existed and couldn't have imagined that I would end up with a disease that is so painful, scaring, disfiguring, and often times embarrassing. I think most people in relationships remember how at the beginning of the relationship you do your best to look your best and generally not embarrass yourself as much as possible. It seems so funny to me now to think back to that time in my relationship with Matt. It makes me laugh that there used to be a time that I never would have shown up to see him with no make up on..the thought of ever doing any type of embarrassing bodily function in front of him would have probably made me faint. It's comical now considering everything we've been through and everything we've both seen. I guess the moral of that little story is that he loved me when I was putting my best foot forward in the beginning, and he loves me still and probably loves me even more now even when I'm being completely annoying or when he helps with my HS which can be, let's just say, less than flattering.
Often times in life the things that are the hardest teach us the most. Due to everything we've been through Matt and I learned at a young age that time is precious. We didn't have to wait until we were old to look back at our lives as husband and wife and Mom and Dad and think "I wish I would have valued my partner and kids more." We will never have to say that because we learned early on how precious time is, how precious life is, how precious moments are. Though I have many favorite memories of our family, one that sticks out in my mind, and one that I think of often is our 10 year wedding anniversary. We didn't have a big fancy wedding and we don't have the money now to go on a honeymoon or have an anniversary party..and that's ok. How did we spend our 10 year wedding anniversary? We spent it at our oldest son's baseball game and I wouldn't have had it any other way. The best part of that day was that for weeks I had planned to take the family back to the place that Matt and I were married after our son's baseball game that day. I wanted to take our kids there and show them that no matter what-we're a team-we're a family-always. I didn't tell anyone that I was planning to do that, I wanted to surprise my husband. So, after the game I started to drive in the opposite direction of home. We got to the place where we got married and we got out of the car and walked to a gazebo that they had recently built on the property. That is when my husband pulled out a piece of paper and gave it to our son. Our son began to read a vow renewal ceremony. In those weeks that I had been planning to take us to that spot on our anniversary my husband had been planning and even practiced with our oldest son a vow renewal ceremony and kept it a secret! It makes me cry now even recalling that day. We stood there in front of our two sons, with our oldest son officiating the ceremony. We renewed the vows we had made 10 years ago and then embraced our sons and made vows to them that we would always be a family. My son Matthew took this picture of us afterwards:
I also believe that because of all these things we've been through together, we are better parents. Matt has never let his Epilepsy keep him from being the best dad to his sons. He is not able to drive because of his Epilepsy but he has always found a way to make it to their games or events. Matt could easily say that it's just too hard to find a ride or to do this or do that..but he doesn't..he has walked miles and miles when he had to(well, he didn't HAVE to, he could have just not gone-but he WANTED to)just to see them play.
It is Matt's determination that has given me the strength to do the same. My HS will never keep me from enjoying my kids, cheering them on, supporting them. I have attended their games with my arm in a sling, I have walked with tears streaming down my face to get to my seat at their baseball games, I have sat through unimaginable pain to watch their plays at school or to see them in a spelling bee or giving a speech. You can't get those moments back and nothing is worth missing them..nothing.
I have a few reasons that I wanted to write this post. I have recently had a lot of time to think about well-everything. I have had a lot of time and opportunity to observe, think, examine, and process things. Often times a lot of things that go along with diseases or conditions get ignored because you can't see them. You are able to see the seizure but when the person is not actively having a seizure that doesn't mean they aren't dealing with quite a bit of physical and psychological effects of Epilepsy. The same is said for HS, a lot of times people who live with HS cover their affected areas. I have 10 areas that are affected so covering them up isn't always an option. Many people living with HS have inspired me to work more towards being brave and not feeling like I have to always cover my HS-like in the summer when I really want to wear a tank top. So, while some times you may see the HS with your eyes, a lot of the time unless you are the trusted friend, lover, or caregiver of a person with HS-you could look at someone and never know the physical as well as psychological things they go through. There is stress, depression, anger, fear, and many more. If you add the physical and psychological symptoms of HS, for me that manifests in many ways and one of those ways is lack of sleep. So, while I am no stranger to sleepless nights, it hasn't been the HS causing it lately. In October I decided to help my husband and let him relax while I cut the grass. He already does so much for me and if I can do something to help him then I am going to do it. He told me not to, but I didn't listen. Not only didn't I listen but when I got out there and had trouble with the mower I didn't stop what I was doing and go ask him for help..nope, not me-I just kept on keeping on out in the yard. He does so much for me and I didn't want to ask for help, I wanted him to relax and not worry about me. When it got too dark for me to continue I finally came inside. I knew my arm was sore but I figured it was just from working so hard. The next day my arm was even more sore but it just felt like minor muscle pain. It wasn't until a week later that I slipped and fell landing on that same arm that this nightmare began. I don't know if it was the week that had passed or the fall that ignited the pain but the next day it began. I have been in extreme pain from that day on. It is now December and I haven't slept in my bed since October. It is too painful. I have been to the doctor and it's not getting better which means more doctors, which means more money spent on me..which I hate. During all of this time I have of course had my ever present HS to deal with and then on top of everything else I developed some internal issues that landed me in the Emergency Room last week. Though I have been very open and forthcoming in this blog, and not just this post but my other posts as well, I prefer not to go into detail. I will, however, say that it was bad. It was so bad that the night before I went to the ER I was crying to Matt, "I'm dying, I'm dying!" Of course, I wasn't actually dying but in those moments it was scary, it was awful, and if you've ever felt like that then you know-it really makes you think. It puts things into such perspective. During this whole ordeal all modesty went out the window-I didn't care about being embarrassed anymore..I needed my husband and he was there for me. He was there for me in such a way that I can only say that it made me love him even more and I didn't think it was possible to love him more than I already did.
During this time and in this past week of recovering (and still not sleeping) I have been given a lot of time to think. A lot of what I have been thinking about is all of the things I have written here. I've also thought that despite all of the triumphs and good things I have written about here I still waste and have wasted so much time. I live inside my own mind far too much. My heart hurts far too much. I hurt over friendships lost, stupid things that I have said and done, mistakes that I have made that I wish I could take back. The worst part is that I do it to myself. Given all this time to think, I have tried to figure out why I do that. What I have discovered is that I think some times even if it hurts-the hurt is familiar. I have lived with these same hurts for so long that it's in a way more comfortable to let my mind wander into those minefields than to risk allowing myself to fear or hurt over the real scariness of HS that I honestly don't deal with. It's more comfortable to wander in that familiar space than to face myself and realize that we all make stupid mistakes, we all do things we regret..but regret doesn't need to eat up your life. It's the fear of the unknown vs the fear of the known...the known fear, the known hurt is comfortable and safe. I think, what if in those moments that I was screaming, "I'm dying, I'm dying!"...what if I really was? I don't want to live in that place anymore. This is my first step out of the minefield. Like I have said in this entry, I don't let HS keep me from enjoying my life-and I do enjoy my life..but I know I can enjoy it so much more. This is one of the many facets of living with a chronic illness, your mind is just as much of a warrior of survival as it is a trap to fall into. I think more awareness needs to be brought to the psychological side of chronic illnesses. More understanding, more compassion. I need to embrace that warrior side.
So, I guess what it comes down to is life is short. Words cannot express the love, gratitude, and admiration I have for my husband or the unconditional love I have for my children. So, to all of you out there that also walk the minefields of the mind, to those of you who live with a chronic illness, to those of you who love someone with a chronic illness-you're not alone. I am not alone. We all go through things, we all have struggles, we all have pain. Everyone you meet has something in their life that they have to fight for or fight through-be compassionate, be kind. I can't please everyone and at some point I am probably going to let people down at one time or another. I am thankful to each and every one of you that has stood by my side anyway. I am thankful for that day when that guy walked around the corner. I am thankful for everything he is, everything he has given me, everything he has taught me. I am thankful for my sons who are such incredible and beautiful souls. Life is about give and take and while I know that I some times need to take, I some times need to ask for help..I hope when it comes down to it, I give back more than I take.
